A Miracle For Megan

Tinkerbell | Registered in the Online Star Register for Megan Garrett

2011-12-31T08:18:00.000-05:00

Tinkerbell Registered in the Online Star Register for Megan Garrett

2011-11-26T08:04:00.000-05:00

Let the holiday begin! Took Ryan and Megan to see Santa last night and we were actually able to get a picture with Santa. So awesome. It is unusual that we can actually get a picture like this!!!!!!

Too much information at one time

2011-10-28T22:22:00.000-04:00

Holter monitoring results back. - abnormal. Bladder ultrasound report - bladder not emptying fully. Both of these within the past 3 days. BTW - urologist was an ahole. He should have been a proctologist instead. Monday Meg sees pulmonology to discuss a cough assist due to her decrease in swallowing and excessive upper airway congestion from saliva and reflux, Tuesday is GI follow up to talk about a possible JG Tube - one in stomach and one in small intestine. Monday is also labs at home with special PIC Line pedi nurse. Wednesday hopefully we can get annual mito labs/screening drawn with the use of ultrasound equipment to find vein at hospital outpatient lab through radiology. All I can think is poor Megan.    My sweet little girl put through so much. Why her? Why not me? Why???????????????????????????????????????

Yesterday morning I snuggled with her on my lap in our huge Jax Sac bean bag (bought especially for the princess and the pea) and she looked at me the way she does like she knows exactly what I am saying while I asked her what she knows that I don't and if she knows how much time we have left together??? Does she wonder that?

The highlight of our day was getting to go to Ryan's school for his classroom fall festival. There were 5 stations set up with cookie decorating, crafts, lollipop ghosts, etc. that the kids got to rotate around at. Ryan wanted me to bring Megan so he could make her a scary popcorn hand. He kissed her and told her to please feel good enough to come to my class. He was so excited that I was coming AND bringing Megan. He said it was important since she wouldnt ever get to have her own fall festival at school like he does.   She did like it. She was mezmerized with all the activity and kids. So much that it took all of her energy and she fell asleep after 30 minutes and slept for the last 30 minutes of it.    I am glad I got to bring her with her big Halloween bow in her hair and her spookly shirt on - for her, for Ryan and for me. For the memories. My stinkerella, stinkerbell, tinky - we have so many names for her. Flopsy Mopsy, Drooscilla(duh - cause she drools). Little Mama, Baby Girl. MayMay, Meggy, Mean G. I heard that the more nicknames a person has it means the more they are loved. I believe it is true!!!!

I am so five now!!!

2011-10-19T17:43:00.000-04:00

Best smile we have had on a birthday in years!!!!!!!!!!!!!!!!!

Another round

2011-10-13T16:07:00.000-04:00

This week has been full of more Dr. visits with the specialists. Thankfully we saw Dr. P who has been able to solve the mystery of Megan's swallowing issues. Has nothing to do with decreased muscle tone - it is her allergies that have triggered her reflux and her esophagus is completely raw and red. Go figure - the ENT figured it out. Not the GI or the allergist/immunologist. It all stems back to medicine - what else. Since coming off the Ketogenic Diet some of the doctors have been wanting to prescribe liquid meds again even though I prefer the tablets and caplets. The sugar in the liquids are allergens - corn syrups, sugar alcohols, etc - feel like such an idiot for not realizing this. I printed every hidden name for sugar that exists and cant believe that some of them are names I would pass by. Even on labels that say sugar free!!!! or no added sugar. So we are back on track to heal that up. Poor baby. I cant imagine - like having strep throat or tonsilits and being ignored.

Saw the immunologist too. Good news is her immunoglobulin levels have doubled since starting the IVIG 6 months ago. Bad news is her liver enzymes are elevated - that could mean a multitude of things - from disease progression on the next "victim" organ, or affects of medicines - or a bad batch of immunoglobulin - there is another kid testing the same way as Megan on the same product. In that case it would be hepatitis which would suck! Going to wait and see though. Not going to try and figure this out. Just going to get the labs drawn and see what they show.

Tomorrow we are going to the pulmonologist for a follow up. I am so over the doctor appointments already. At least tomorrow is Friday and then there will be 2 days without a doctors office. yay!!!

Saturday night is going to be the start of the next chapter in James' life. He is going to homecoming with a date- in a limo -!!!! It is a bunch of couples but here we go. I hope he enjoys himself and realizes what great times these are for him. I always wanted to be done with high school and onto bigger and better things. Of course I knew everything so noone could tell me to slow down. Wish I would have though. I missed out on a lot. I never went to a homecoming or prom!! I thought they were stupid.

Like Tim McGraw says:

I cant remember who I was back then

you do what you do and you pay for your sins
and theres no such thing as what might have been
its a waste of time
drive you out of your mind

This part of his song has always had a deep effect on me and made me think. More so than most other things I have heard in my life so far. It is very.......................real and true.

2011-10-09T23:02:00.000-04:00

Should be trying to sleep but I can't. I left the bedroom crying. I am afraid. Afraid that Megan's not going to be here much longer and afraid to be without her. I picture her in my mind and can't imagine that someday I won't be able to touch her. It is selfish for me to be worry about that but i dont know how not to. My chest feels like it hurts so bad just thinking about it. I don't know why I have had this terrible feeling lately but I have cried every day lately. In the shower, when I have a little quiet time it just comes out. I need to find peace with these feelings because I have no say in how things will go. It is in God's hands...and somehow I think Megan's too. I just love her so much. I love to see her smile at me and to kiss her little cheeks and when she talks to me with her own little language of sounds that are so playful. I can feel how much she loves me - she doesnt have to know how to talk to convey it. I have to find someone to talk to that knows what to tell me so I can stay strong and come through this for Pat, James and Ryan. And me. I just can't see MY life or my heart being repairable...it seems impossible.

2011-10-08T09:53:00.000-04:00

Longest cardiology appointment ever..........

2011-09-29T22:00:00.000-04:00

We went in for an annual cardio check up today - I am plain worn out. We were gone for five hours at their office but it was the most complete and thorough appointmet I think I have ever had. No messing around - EKG, Sonogram of heart - exam - halter monitor - wow! And a great doctor. Very in tune with kids like Meg and what to look for. Meeting with him made all the wait times in between worth it. Heart checked out good. Apparently the mitochondrial disease has not affected the heart from the standpoint of it pumping and beating. That is great news. I had a lump in my throat while we waited to hear. The heart and brain are the organs that use the most energy. I feel relieved.

Decided that tomorrow we are going to go back in to the HBOT chamber for 90 minutes a day. Got to just do it - help that brain out!

New twist

2011-09-27T08:11:00.000-04:00

Okay - so here we go already. It is not even 8 am and I have more nursing crap already. Agency thinks they have a nurse that will fit and wants to do M,T,W, and Th. Going to meet her Wednesday for the first time and see. So I think that this might smooth out pretty quickly and the night nurse I have that has been doing Friday, Saturday and Sunday decides that she is going to ask for MTW and is thinking that she should get it and the new nurse should take her nights. Problem with that is the new nurse could work the nights that were open - not the nights the other nurse has. My stomach is in knots.
So far this week I have cancelled Megan's cardiologist appointment and James appointment for a filling and it is only two days into this week. I guess everyone has to wait until I am steadily getting sleep so I can make it to the appointments. They are going to stack quickly. Megan's pulmonology appointment is on hold too now..............

The worst part is my Mom is leaving on Sunday for New York to help my brother out with my nephew. I do not know how long she will be gone.....she helps me a lot and is available if there is a 30 minute window where I can crash like I did yesterday afternoon in between Ryan's podiatrist appointment, the orthodontist and his homework. 30 minutes helps!!!! Not having to arrange her to be here makes little things like that possible.

I am so frustrated and upset. I am so sick of everything being like this.

I wish I could tell these nurses to go ***************.   I hate having to depend on strangers. It sucks. Especially because I am such an independent person. It absolutely kills me to not be able to take care of things for myself and my family the way I know I could and feel that I should.

I feel angry - but at who? Myself - Pat(????-why) - God????
Yeah - all of the above.
I just want some normalcy and peace and not to be on the stresscoaster.   I am so tired and feel defeated today. Sobbing at 8am over things out of my control.

Megan is lying here next to me drifting in and out of sleep. I feel guilty for all that I just wrote when I look at her.   Not her fault and it hurts my heart that I feel so defeated as a result of her disease. But not because of her. Might not make sense but I know what I mean.

Tears are put away - going to get on with the day. Start meds, nebs - work - I can't contain my excitement.

2011-09-25T11:31:00.000-04:00

So glad it is the beginning of a new week. Last week is one I would like to wipe from the calendar! Megan is on bactrim again for a bacterial infection. Second one in a month. Tuesday night she was up all night crying and flailing around. So Wednesday I spent the morning in the Dr. office - on about an hour of sleep. Then I got to clean up and go to a meeting at James school which I dont think I was alert enough to convey what I needed to. Then off to drop James at PT - while he was there I went to CVS to replenish Megan's supplies - picked him up and walked in the door at 5:30. By 8:30 I was almost in a coma I was so tired. Thursday morning we were supposed to be at All Childrens for an ABR that we waited 2 months for the appt and had to cancel it.   Of course next available is now in November.  Thursday afternoon was a mess of appointments for James. I was trying to work on stuff in waiting rooms to catch up on everything I am behind on.  Proved not to work out so well! So now I am frustrated because I cant seem to accomplish anything completely and I come home and try to work on things. I open a package containing Megan's most recent MRI report and a disc of images.  You know I had to see if I could look at the images. Usually I can't because it requires medical software to open and read but this one opened to my surprise. I have seen the images before so this one was really upsetting to see. It showed severe atrophy - especially the left side. the left side looks so little and like there is so much space in there. It is not that I don't know that her white matter is vanishing but I guess you hope maybe it slowed down or stopped happening.   How do you stop a progressive disease? If I knew the answer to that question. Talk about helpless. Of course I am totally sad now but can't show it - still have kids, dinner, Pat, Megan....
I get quiet and just go through the motions. When the nurse got here at 10pm I could not wait to go to bed and just sleep so I could stop thinking about it.
On Friday morning I feel better - still a little far away though. Definitely ready to accomplish all the things I need to. Had to start out right away trying to solve nursing dilemnas. I have two nights that need to be staffed. Each of the night nurses want off of one of the nights they do. So I start on that and am thinking we will figure it out to accomodate everyone. I will make it work even if I have to hire someone myself to alleviate the nurses from a night a piece. Then the rug gets pulled out from under me - the nurse who is with us the longest and is who I feel closest to our entire family and we are very grateful to have tells the agency that it is not just one nite she can't do - she quits completely - with no notice. I can't help wondering why? What did I do?   I am baffled and can not understand. If it wasn't us then why no notice?  You only do that when you are angry or something.  Otherwise you give notice, right?  Ryan asked me why she quit.  I said I dont know. She did not tell me. She told the agency. He said why didn't she tell you? I thought she was friends with us.  Although there is not any obligation and the proper procedure is to tell the agency there is a bit of personal dynamics that come into the whole situation. Lesson learned - dont expect people to act the way I would. They are not me and my expectations are unrealistic. My feelings are really hurt but I have to put it into perspective. It is a job and a business arrangement.  The job is to care for Megan. Plain and simple. I will make sure to keep it that way from here forward. I have to move past it and figure something out.  There is no time for setbacks and stumbling around when it comes to Megan. It affects everyones quality of life in this house as well as our mental health and ability to be productive from day to day.  As I am gaining more experience in this area of my life I am starting to realize that some of the stories I have heard about these awful parents are half truths because the parents get burned out on this kind of crap and have to draw lines or put up a wall to keep it business - no friendships or weakness because then it gets complicated and it cant be. Easier said than done.
To get a good fit - now that is the focus. Megan is sensitive and too many caregivers is upsetting to her - and me. Too many cooks in the kitchen kind of thing. Just having someone in your home is strange. You get used to it because it is necessary to sleep but it is NEVER normal. It took a long time for the boys to get used to it. They know that it is necessary too for all of us.   They remember when we had no help. It has only been 13 months that we have consistent nursing. The year prior to that I got my mercy 12 hours per week so I could sleep one night a week. When Megan was on the ventilator I did not even have that so I am grateful to have the help. Very grateful to have the help. The cons too it are the people in your house and juggling the various personalities and any issues they may have. Whether the issues are with the nursing agency, notes, their own lives. We have issues too. The same as everyone else - and we have the weight of worrying all the time about Megan and dealing with the fallout it has on James and Ryan and us too. Having the nursing shifts provides for us to be able to work and sleep and things every family does - groceries, bills, sports, school, blah blah blah. It is not a luxury and something I would not need if she was not sick. Nothing would make me happier than to not NEED this. That would mean Megan would be better!!!!!

Anyway - Friday sucked. There was a BBQ cookout at James' high school Friday night before the football game. Big family event. Pat went up with James. They worked the parking lot for the game and James' wrestling team painted themselves up and raised money for their team. I was supposed to go with Ryan and Megan but that did not happen. Megan needed nebulizers and respiratory cpt care and was having lots of seizures so she was not up for it. So we stayed home - I took care of Megan while Ryan sat on the couch alone watching TV. Night nurse was scheduled for 9pm. At 9:30 still noone here so I called and got the - oh - didnt anyone call you? She can't come tonight. When Pat got home with James around 10 I think I looked glazed - just like wth? Friday night sucked too.

Now you know why I hated last week? Meg is crying - have to go.......

Almost 5

2011-09-19T11:28:00.000-04:00

In a little less than a month Megan will turn 5! 5??????? It is definitely a milestone. One that seemed very distant and scarily not reachable. But here we are. It seems unreal.

She is getting so tall and looks like a little girl instead of a baby now - even though she is only weighing in at a whopping 25 pounds!!! She has little girl braids and little girl expressions - I can imagine her running and playing and what a spitfire she would be. Correction - spitfire that she is and how much more of one she would be if she were mobile.

She had an overnite EEG last week to see what was going on with her seizures. Fortunately there was not the infantile spasms pattern present - but seizures are still all over the brain and happening too frequently.
Currently she is on clobozam, zonisamide, keppra and gabapentin. There are only a couple that we have not tried to date. A few because they are contraindicated for use in mitochondrial patients so our options are limited. I think the ivig has been the most beneficial thing so far for her. She really is much more aware of what is going on and interacting a lot more. Still doing weekly sub q infusions and will continue for at least another 6 months. Just have to wait and see - as patiently as I can. My patience have grown immensely since Megan arrived. I don't even recognize me anymore most of the time. What is that saying:
I cant remember who I was back then...........that sums it up.

2011-08-08T13:16:00.000-04:00

Well here we are in August and I cant believe I have not had any time to do anything but take care of the kids the entire summer. The boys are quite a handful. Especially with the difference in their ages. Ryan wants so bad to be older than 9 and James is almost 16 but thinks he knows everything and is totally annoyed by Ryan. Then of course we have Megan who is always keeping me on my toes. We started several different things and it has been like a rollercoaster. 1st thing is the IVIG which we started in April and have done it weekly since and plan to continue for at least another 6 months. Positives are that she is much more alert and stronger and has been sick only a few times. Negatives are that with the strength comes stronger muscle spasms and spasticity. In late May we did botox for the first time - it had a little tiny effect - I dont think it was worth the injections into the nerves in her legs and hips - ouch. It was horrible to watch and to hear her cry that shrieking sound of pain. In late June we went to see the mitochondrial specialist in Atlanta. She prescribed clonodine to help her sleep and gabapentin for the spasticity. Tried clonodine first and boy did that one do the opposite of what it was supposed to. It made her sleep at first for like a week and then it turned her into the exorcist and her body remained stiff like a 2x4. She was grinding her teeth so bad it hurt me!!! Of course you have to wean off of that drug so for about 2 more weeks we suffered with her through the bad side effects. Finally it was over and we introduced the gabapentin which seems to be helping. We have taken it real slow and are not up to the full dose 3x a day until this next week. She is a little more relaxed though. Diet changes have been huge too - she is allergic to everything - including corn syrup solids so I am homemaking her formula from rice milk and a vegan supplement and some organic vegetables, etc. Ketogenic diet was a bust after all and since she is allergic to diary and soy it makes sense she was like a zombie on the diet. People dont realize that food allergies affect mental abilities. It is huge!!! She is starting to grow again finally. She got so skinny she looked like a skeleton when she was undressed. It is nice that we are starting to put a little meat on. She is going to be 5 in October and is just at 24 or 25 pounds. She was down to 22 pounds.

In July we took a 4 day beach trip with Uncle Jimmy, Aunt Wendy, Dominick, JoLynn & Alexander - Aunt Jerri, UncleLes, Zoe and Lesleigh. It was really nice and Megan did good for Megan. Of course the heat of the day is not her friend and she doesnt really sleep at nite but we figured it out and had a good time. Her cousing love her so much. The pictures capture it perfectly.

Been doing lots of water therapy thanks to waterwaybabies.com. It all helps. And she loves it.

School starts on the 23rd of this month. I am looking forward to the boys going back so it will be a llittle quieter here during the day. They are wearing me out!!!! James is in 10th and Ryan is in 4th this year. Can't believe James is as big as he is - girlfriends, drivers licenses - ugghh! It is all good but I dont know how ready I am for all of this right now.

Is it April already?

2011-04-05T20:43:00.000-04:00

Wow. So much has happened since the last time I posted anything. It all seems surreal that it is April already. We have been on the rollercoaster with seizure meds again, attempting IVIG with no IV success - Megan looks like she has been beaten with a bat from all the sticks and blown veins - MRI's, reflux, DROOLING, DROOLING, DROOLING AND GAGGING, allergies!!! Time sure does fly when you are having fun. HaHa.

I think I know the drooling culprit - it is the clobozam she went on about 5 weeks ago. Great seizure control, but man the side effects are terrible. She is an aggressive, moody, little biter that drools. The plus is that she is so alert and smiling and laughing when she is not pissed off but very fidgety and doesn't sleep. The crying has become so much less too. We went from all day and horrible all nighters of crying to just a few hours a day in smaller increments. I thought I would lose my mind - not her fault but man does it wear you down and out of your rational mind. We tried robinul and Sal-tropene for the drooling. Both had the same effects - vomiting so we had to stop. Which means we are most likely going to have to stop the clobozam because of all of the saliva and choking. She could aspirate. Back to nuerology on Monday bright and early. She has also been nice and stiff on and off - but more bent if you know what I mean. Not as much as a 2x4. People look at me like I'm crazy when I call her things like that but I;m just rolling with it. I hear the more nicknames you have the more you are loved, which means she is reeeaaallllyyyy loved.

I am homemaking her formula now too - she is allergic to the corn syrup solids in the "hypoallergenic" Neocate - crazy,right? So rice milk and a vegan protein powder(with no soy, milk, gluten, casein or egg cause she is allergic to all) with some rice cereal, salt and some good old fashioned olive oil for fat. She lost 15% or better of her body weight while she was not tolerating food. She is a skinny string bean. Seeing her undressed makes me sad. And her face is so tiny too. Poor Meggy! But as always a trooper.

Scheduled for Sub Q IVIG now - coming soon along with our botox in her legs - hoping it will make her healthier, happier and more comforatble. Her quality of life affects all of us. It is part of the territory I guess. The boys take it in stride pretty well, as long as she is not screaming her brains out. Pat and I are like two passing ships with the crazy schedules of our own, the kids and of course Megan's agenda. Our anniversary is at the end of the month and Tim McGraw will be here in concert and Pat got tickets - he knows I love to see Tim. It will be great to get out together and enjoy a nite out of dodge.

Still more pics

2011-02-08T21:15:00.002-05:00

More pictures

2011-02-08T21:05:00.001-05:00

Have neglected photos for a while - Pat brought it to my attention so I am trying to update 2010 into these - I was too busy with Megan to post pics so I am making up for it now!

Photos

2011-02-08T20:55:00.000-05:00

2011-02-08T20:39:00.000-05:00

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playrounds and in grocery stores. I've become an expert at indentifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your heart and soul. You are compassionate beyond the expectations of this world. You are my "sister".

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's clinics, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consulataions, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world.

We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes. We are knowledgable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have laboured to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued muncipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to dela with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaningn strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip to Holland" and Erma Bombeck's "The Special Mother". We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat". We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left of the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith anyways. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolours, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in al they will accomplish as they pass through the world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Author Unknown.

Special Child

2011-01-26T12:07:00.002-05:00

A meeting was held quite far from Earth It's time again for another birth Said the Angel to the Lord above.. This Special Child will need much love... her progress may seem slow... Accomplishments she may not show... And she'll require extra care From folks she meets way down below... she may not run, laugh or play... her thoughts may seem quite far away.. In many ways she won't adapt... And she'll be known as handicapped..... We want her life to be content... U Will do this Special job.....U will not realize it right away The Special role YOUR asked to play But with this child sent from above Comes a richer much stronger love... Soon YOU WILL know the privilege given In caring for this gift from Heaven Their precious gift so meek, and mild she is Heaven's Special Child xxx

A post from another mito mom that hit a nerve or two....

2011-01-25T20:32:00.000-05:00

Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?” God paused for a moment and replied, “Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” she asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.” The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this – it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer – to unlock this love – to create this miracle – for the good of all humanity.”

Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, “I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!” God smiled and said, “You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you. God and the brave little soul shared a smile, and then embraced.

In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.” Thus at that moment the brave little soul was born into the world, and through her suffering and God’s strength, she unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased

Surgery Success

2011-01-12T21:04:00.000-05:00

Today was a huge day. Megan had the surgery to close the fistula where her tracheostomy was. I had mentioned how scary and tramatic thi.s could be - but - Megan has beat the odds again. The way she does with intubation was the real risk when on anesthesia. Normally if she came out of surgery at 9 am we would not count on her being awake enough to extubate until afternoon sometime - maybe 3ish. By 10 am Megan was fighting for all that she was worth. The respiratory therapists exact words were "We have to sedate her or extubate". There were about 8 doctors, nurses and RT's around her in a frenzy. I took one look at her rigid muscle tone and knew she was good to go. They pulled the tube and her O2 sats went straight up into the high 90's. The admit was for a mandatory one night stay in the PICU to make sure she was doing okay. After 8 hours of her doing fine breathing with no airway complications we were sprung and got to come home. Hallelujah!!! We got home at about 7 pm on the dot. Her culture DID NOT grow MRSA which is awesome - cant believe we actually killed that one. The next step is to concentrate on her seizures and her diet. I feel like it is time to come off of the ketogenic diet and go back to a casein/gluten free diet. The Keto Diet is really hard on her stomach and her reflux which is tricky in itself anyway. If we go back to a normal diet I would be able to hopefully start to introduce baby food again and let her enjoy some food. Of course we'll need a swallow study, etc, etc to make sure she is swallowing okay and not aspirating.

I have an appointment set up with an immunologist to consult with him about IGIV. It helps some kids with refractory epilepsy and infantile spasms and it can't hurt her immune system - we know it could use some help. It also is being used to treat fool allergies some so it could be a win/win or her.

I am so thankful this went smoothly. There was not an inbetween here and we knew it. Pat, myself, James and Ryan. It was looming over our existence every day. It was all or nothing - sink or swim. I cried so hard last night I thought I broke myself. Hadn't cried that much since March of 2009 when she was still intubated and pre-trach during the life choices we had to make. It was that intense. Although I know Megan's medical issues and disabilites are great and will always be there I am feeling pretty satisfied and happy right now. Thankful - Grateful - Lucky - Enamored by what an amazing child she is - by what a will she has all of her own.

Surgery here we come

2010-12-28T11:20:00.002-05:00

I say surgery here we come with feelings of anticipation for a better future and feelings of fright for the worst case scenario. The trach fistula has been colonized with MRSA and Staph which has been wreaking havoc on Meg for months. After we had to cancel a long awaited trip to Minnesota's Mayo Clinic due to her waking up with every color coming out of her trach it was the last bout that her ENT could stand either. The decision was made that if the infection came back after the last treatement that ended in early December the stoma would have to be closed. We have been running Tobi Nebs for over a month and had to start the bactrim again 2 weeks ago and it is not doing much. Surgery is set for the second Wednesday in January to sew her up. The procedure requires intubation which is what makes me worry - we dont want to end up back where we came from and dont want to face "big" decisions. She could never go through a trach again - we would not allow it for her. Christmas came and went fast - it was very wierd to have a nurse in the house in the morning in the middle of our Christmas. The boys were wigged out. Better that I got to sleep though instead of being like a zombie in front of the Christmas tree. I had to explain that to them so they could see that it was a necessary component of life for us to function and it is not what we "love" either. We have a hearing coming up for nursing hours soon - had to appeal a riduculous decision that came down right before Christmas. It is always something! Praying for a successful surgery and a great 2011 for Megan.

Dream Calendar

2010-11-09T11:37:00.000-05:00

Megan's Dream Calendar Photo. Well - I did not know it when we shot the session but we were just hours away to being told she was very sick with MRSA. No wonder we could not get a smile and she was a bit wilted. If it had been a week later it would have been great. Oh well - I still love it!

Minnesota Bound

2010-11-07T08:12:00.000-05:00

So the last month has been nuts. We have determined that Megans trach site and right ear have been infected with MRSA and some other strange bacteria...she has been battling the dog ear smell as I call it since the end of July. She has been treated with a/biotics but it kept returning. Culture finally found it. Infections Disease was lame about culturing - they said that of course it would grow bacterias because there would be skin flora in it too...ENT did it and figured it out. We spent two days in the PICU for a new EEG with an epileptologist. Seizures are off the charts again and have seen some infantile spasms. No wonder with a raging infection...that is what happens. Anything that stresses the body lowers the seizure threshhold and it creates a bunch of problems. She finished her antibiotic this morning and I have seen some smiles in the last three days which means she is feeling better. We reculture Tuesday.

Also have had new hip x rays and both hips are popping in and out.....we now will have to see the orthopedist for follow up and whatever else..I know it hurts. She has been letting out some blood curdling screams. But we will be going ahead with some botox in the legs to help relieve some of her muscle spasms that make the hip thing worse. Cant do it until January 14th though - that is the next opening. I guess it will go fast with the holidays coming and all.

This Saturday the 13th we are heading to Mayo Clinic for them to have a look and see at Meg and maybe get some new ideas - help??? I dont know - cant hurt to try and I have been having the feeling to do this for the last 2 years. So I took the inititiative and faxed her information to them and they called me back and said - yup - we would like to consult with you on her. It all fit in perfectly and it was so easy it must be meant to be. I am always hopeful. Like I said - nothing to lose and certainly she needs medical expertise far greater than I can get here. They dont understand her at all. What gets me is that because she is so pretty I get the stupid comments like "at least sheis pretty" or they think she is not sick because she is not deformed or characteristic looking of a syndrome.....ignorance I guess!

One more reason to make this trip happen is Ryans prayer for Megan.
Dear God, I hope that there is a cure for Megans mitochondrial disease in 2011 or 2012, if she is still alive to get the cure, and I hope I win my soccer game next Saturday. Amen.

Talk about making you want to cry - what a deep thought process going on there.

Ryan is finally wanting to participate in things outside of our house. He is playing soccer and loving it. Im so glad he does not feel like he has to be here all the time in case something happens. James is loving high school. He is experiencing a little freedom that is new. I remember feeling too big for my britches and having to be reigned in a bit and now I am doing it to him. But I must say he is much more understanding of it than I was. I think girls must be worse. His back brace should be able to come off around Thanksgiving. He goes to the ortho surgeon a couple of days before and I hope his fracture has healed. Then well start PT for his core muscles since he has not used them in several months. Another set of appointments!Uhhh!

Well that is about all I can think of. Anyway have to go start meds for Meg and vest treatments, etc. She is awake and waiting!

2010-09-29T09:50:00.000-04:00

Can't believe it is already October in a few days. Where does the time go? This past month has come and gone so fast my head is spinning. I guess Megan being sick all month on and off , mostly on - has made it a bit more blurry than usual. Hoping we are on the mend now finally. She went through Rocephin shots (3), 10 days of Levaquin and has about 4 more days of Tobi Nebs left. If this doesn't do the trick I guess we will talk to infectious disease about an admit for IV a/biotics. Yuck - makes me sick to even think about a hospital stay!! Ryan and James are taking turns with their stuff - who is sick, who hates school - who lost a binder with all of their work. My patience for this stuff is very short these days. Some of the stuff that is coming home from school is just absolutely riduculous.

Still feeling kind of out of sorts with everything. I am in a spot I don't really recongnize. Not miserable - not happy - not anything. Maybe just here....

I know what my responsibilities are - who and what I am responsible for and I am getting the job done. I wish I could say I was getting it done with more UMPH though instead of just getting it done.. My get up and go got up and went??? That is what it feels like. I don't like it so I have to fix this. I want to feel connected to everything instead of just existing FOR everything.

The next couple of weeks are more follow up visits, blah, blah, blah.

Ryan starts soccer this coming Monday - that is exciting - it will be his first team and I can't wait to see him play. James is in a Boston Brace - dont know if I said that before. He fractured his spine between L4 and L5 - probably in football but who really knows. He hates it. It looks like a medieval torture vest!!

That's all I've got!!!

Tragic Widnes tot Leoni's short life may lead to cure of rare condition - Runcorn and Widnes Weekly News

2010-09-17T18:24:00.000-04:00

Tragic Widnes tot Leoni's short life may lead to cure of rare condition - Runcorn and Widnes Weekly News

Another one gone from a mitochondrial disease - two days shy of her fourth birthday. Crying for another lost little girl .

????

2010-09-14T20:39:00.002-04:00

I dont even know what to write anymore. I dont even know what to say when people say - I hear Megan is doing great. It is one of the hardest things to answer without sounding like I am wallowing in her disease or a totally negative unhappy, unappreciative person. You would think this should be one of the easiest things to respond to....Great is not a word I would use to describe how Megan is doing...and I feel like an ass for even saying that. While I KNOW that she has made huge progress from last year with coming off the vent and having her trach removed, there is so much still going on every day. Seizures just plain suck. I am not even counting them through the day anymore. It is too sad because I know they are peeling away at her and we have tried everything to stop them. And we have the muscle spasms where she is stiff as a board and crooked all at the same time. It is getting very difficult to hold her and comfort her through these because of her size and her strength. She has a very strong right fist..I have great bruises to prove it. The crying fits from pain are also very painful, for all of us. I am so angry that nobody can stop her pain. It is so unfair to watch this. Yes - I am asking myself quite often why, why, why? And the disgusting stoma that wont close is driving her crazy - and me - it is an oozing snot hole that gets clogged up - so gross. I think she feels like her air is stifled at times because of it and it stresses her out, which then leads to the muscle spasm, which then leads to a seizure, and crying, and on and on - every day - all day - throughout the day. God help her if she does not go to the bathroom in the morning - we just add the stomach discomfort in for some extra fun. I probably sound like an insane person but it is how I feel. It's one of those days that I have had it with all of this and dont know what to do anymore which then makes me feel guilty because in other aspects of my life I know I have so much. Guess I might kind of be feeling like I'll be punished someway for feeling so pissed off. I really feel like punching my fist through a wall and screaming until I have no voice left. Ryan was trying to read Ripleys Believe It or Not to me tonight but couldn't because of Megan's screaming - what else is new. He takes the backseat again.....which I'm noticing is starting to wear on him. He feels unimportant. Sandwiched between James who is the oldest, in high school - funny, and between Megan who is so pretty and so sick and needs so much. I guess I would feel that way too - middle child and 4 years of this.

We do have some nursing and I get to sleep at night now. Huge bonus. It is helping me to feel more human. Day nursing is not so great I find. They have NOOOO clue what to do with Megan. The nurses that are here for a few hours a day seem to think if we just keep pumping drugs into her and request more and more, stronger and stronger it will help her. So what - drug her up like a patient in a mental hospital???? Would they drug their kid up that way? I think not. She is cognitive of her surroundings and loves, loves, loves me. So lets take that away from her too....they are callous and ignorant mostly. But I am in a catch 22 - I can not do this without people that can work a gtube, feeding pump, nebs, meds....a second person to help carry all of her crap to ALLof her 10,000 appts a week...it is exhausting. And it is stressful to have to manage all of their personalities - they are all women so lets face it - it gets interesting. Of course there is always the sunny disposition I am always supposed to have with them or else I am a bitch. It is hard to always have the sunny face for everyone around me - my kids, my husband, my mom and mother in law, nurses, doctors, therapists...........AAAAAAAHHHHHHHH! I just want to be left alone.

Ill figure it out - probably by tomorrow morning, and hopefully I'll deal well for another while...

I absolutely love Pat and all of my children and the rest of my family and would die for any of them- it all just is a bit much sometimes, thats all.

Is summer over yet?

2010-08-19T12:03:00.001-04:00

Okay – I know it is August in Florida but I could not resist this winter hat. Megan may get to wear it a couple of times this coming winter…. The good news about this hat is it is actually a size 3 which is about the right size for her age. We have always had to buy hats in the 6-12 month or 12-18 month size until recently! I think that is a good sign as far as head growth since I have been told it is too small for the rest of her!

James started high school last week and Ryan starts 3rd grade next week. Looking forward to some quieter days without any boys fighting!

2010-07-01T23:48:00.007-04:00

We just got back from the trip to Atlanta with the geneticist that specializes in mitochondrial, metabolic and inborn errors of metabolism. She gave us the swab kit that we will do early next week and send off to Philadelphia for enzyme studies. So far all of the enzyme studies done have matched the muscle biopsy results on other patients with the exception of two - which were both coincidentally processed at the same lab. Sounds like a lab problem on those two. I guess I will be looking for the enzyme studies to show the mito complex IV deficiency again. Hopefully it wont be adding any other complexes to our diagnosis. I will have to schedule Megan for an updated EEG, MRI and MRS. Like what we did in NY 2 years ago. It is important for diagnostic reasons. Right now having this blanket mito label is like being told you have cancer but that is it - that is all you get - no type....

The Dr. does think that she fits the Leighs Disease which is what I have always thought. It is not what I wanted to hear though. The prognosis is very poor. The majority of the children die within one year of onset of symptoms. Others live a few more....7 would be considered old for this disease although there are a couple I have heard of at 9 and 11. Needless to say I am very sad inside and I hurt so much inside.

I swear Megan gripped me tonight tighter than I have ever felt and I dont think it was involuntary muscle contractions. She had her little grin on. I hugged her so tight and kissed her little cheek and told her how much I love her and how special she is. She looked so content and like she understood somehow what I was saying or understood my emotions. I pray that she did and that she knows how much I love her. To look at her lying still sleeping you would never guess anything is broken. She is so perfect and pretty. And soon to be four. My mind started to wander today looking at the boys. I was thinking what age will they be when they lose their sister - how will they deal with it and that it is not a question of if they will lose her, but when will they lose her, and her Daddy - WHEN WILL I LOSE HER??????? I feel bad to even think it - let alone put it in writing. It feels like I am deserting her but I am not. I never will. I need to find my faith and trust that God will do what is best for her and for us and love her as much as I can for as long as possible.

Even though I was sad at the end of the stay in Atlanta, it was good to see Gwen, Mike and Erin. It was wierd with Amber not living there anymore but that is what happens - they grow up and move out. The boys had a ball with Aunt Gwen. While Pat and I took Megan to the Dr. they went to Stone Mountain with Gwen. At the top of the mountain carved in was GARRETT M. Ryan saw it and Gwen said he told her that it was for Megan Garrett. I thought that was really cool that of all things that was at the top, and that they saw it and got a picture of it! I guess she was kind of there with them in a way too.

Summer Already

2010-06-15T12:38:00.003-04:00

Cant believe school got out for the boys last Thursday and summer has begun. The month of May was really busy with end of the year awards and ceremonies so I have not had much time to do much of anything.

Megan is doing okay so far with the trach gone. We have had some trials already that although were scary proved once again she is tough. A week after she was decannulated she came down with bacterial bronchitis - compliments of Daddy and James. James was down with it bad so I was really afraid of how it would affect Meg. She did need three abiotics but the fact that she did not need oxygen or breathing support via equipment OR a hospital is what counts. I spent an entire week doing nebs and vest therapy. I dont mean periodically either. Every two hours I did nebs and then vest that takes 30 minutes. So it was an hour of treatments every other hour. I think I almost went crazy at one point but reminded myself that it was okay since we were not in the hospital and at least at home doing it. NOOOOOOOOOOO sleep that entire week did not do much to help ease the craze.

Her stoma is almost closed. It is a little pinhole now and hopefully it will close over the next few months. Dr. does not want to stitch yet since it is invasive and requires a two day stay and cutting the skin inside the throat behind the stoma. I agree that she does not need that and we dont need to borrow trouble. She is getting so much stronger in the neck and trunk since the trach is gone. Sits up nice and straight and is activating her own head movement. It is subtle movements up and to the sides but from nothing that is huge. Keto diet is coming along. She is on ketocal now which is milk based and digesting it and growing!!! She is getting nice and full looking. Heavy feeling too.

Make a Wish was here last night to meet with us and we decided on a room redo. New wood floors instead of carpet that is gross from formula and meds. A beautiful outdoor fairy wall mural - some built in shelving to the cieling around the window. A beautiful little girls palace with much more space and hidden medical stuff. I get to relive my dream room with Megan. I am excited.

Traveling to Atlanta the week of the 28th to see the geneticist. Brand new buccal swab DNA test that screens for about 600 different metabolic mutations. Her mito geneticist is certain that a metabolic condition triggered the mitochondrial damage. Although the mito damage is the secondary disease it is the bigger problem not due to the nature of it. If we can find the metabolic primary portion - who knows. Maybe stem cells?? I have hers and Ryan's cord blood stored. Another big deal.

All in all it is moving along. Of course out daily challenges are still large they are much more manageable. Especially since we can move much more freely without equipment. Only a feeding pump and diaper bag. Woohoo!!!!

I know this is a run on but it has been soooooooooooo long.

Bye Bye Trach

2010-04-28T15:28:00.001-04:00

Decannulation done. Trach out as of 4pm on April 26th. Hello Kitty is protecting the stoma which will take about 3-5 months to close, unless ENT stitches it shut first which is what I am hoping for. We see him tomorrow morning. Feel like a ton has been lifted off of us – and Megan looks so much better. Swallowing everything is a bit of a challenge and so is clearing the stuff in her chest, but I think she is doing okay . Really nice to hold her without something getting in the way. Tomorrow is Pat and my anniversary and i cant think of a better present.

July of 98- Wow!

2010-04-21T22:36:00.000-04:00

2010-04-07T18:22:00.002-04:00

Today I got the call with the date for the bronchoscopy and the "tentative" trach removal. Monday, April 26th. It is exciting and scary all at the same time - if they take it out and she does great we come home in 24 hours with no trach. If they take it out and she isnt managing they will put it right back in. She is sedated for the bronchoscopy so if the airway looks good they pull it out then and leave it out. I am afraid she will be too sedated to switch over to mouth/nose breathing - too unaware. The other scenario is that we come home and then she starts to get into trouble. That is the worst scenario because then Pat and I have two options - let them reintubate and then re-trach or not put her through the trauma at all and let things happen naturally - whatever the outcome. I dont want Megan to suffer any more trauma naturally but then there is that selfish side of me that just wants to hang on. I am really positive about it but I have to be realistic. Nothing is guaranteed and there is no way to know for sure until it is out. The tests we have and are doing point us in the direction but that is all that they can do. It is a risk. Without risk there is no reward though - that is how everything in life is it seems............

2010-04-06T17:34:00.002-04:00

When you come to the edge of all the light you know, and you are about to step off into the darkness of the unknown, faith is knowing one of two things will happen: there will be something solid to stand on, or you will be taught how to fly.

Sometimes I fall a long way before I learn how to fly........

Success!!!

2010-04-06T11:36:00.002-04:00

Finally got a call this morning that Megan passed her sleep study. That is the greatest news I have gotten in a year!!!! And the Dr. was certain she would not pass it. He also said she would probably be ventilator dependant for the rest of her life!! Next step is we go in for a bronchoscopy to make sure her airway is good and if so the trach comes out on the spot and we see how she does. I am so excited I cant stand it. Ryan asked if that meant if she was going to be able to eat baby food again and if we could throw away the suction machine! YES AND YES. With a little work - nothing we cant handle.

2010-03-29T16:46:00.001-04:00

Lots of stuff happened in the past week. James got his braces on today. Should be about 18 months to a perfect smile. He still looks cute. Braces are not what they used to be. Megan had her sleep study last Thursday night to look at decannulating the trach. Dont have the results from the Dr. yet officially, but I think the data they got was in her favor. I hope it was in her favor. She was very mad about the entire thing – she knew she was in the hospital for sure! I spent the entire night standing at the side of the crib she was in so she would not scream and they could record some sleep material. It was a night to remember!

2010-03-19T22:45:00.001-04:00

New hair cut – mixed feelings about this. Pat is very upset that I cut her hair. It will be so much more comfy for her.

My fairy princess

2010-03-19T22:36:00.001-04:00

Could not resist – she was sleeping so I had to sneak in the fairy wings and the wand – I could never get this if she was awake!

2010-03-13T17:32:00.001-05:00

Get Fit Tri

2010-03-13T17:30:00.001-05:00

Today was the Get Fit Tri – Lance Armstrong Live Strong Youth Tri Series. It was the second annual and the benefactors were once again Megan and this year Clouds of Hope was included. Clouds of Hope is the NFP my friend Renee created (she is also fighting a battle for her youngest daughter) that is working on getting the all inclusive park built here for all children to play – differently abled ones too. Megan was in the calendar that her daughter was in last year also for the park. Beautiful day today. Girl Scouts did an over the top job again and worked their little butts off – their Mommy’s too. Sponsorships to get this thing to happen were harder to come by this year too which made it even more challenging. James participated again – Ryan says if it happens next year he will do it too, and so will Daddy. Brenda Golterman, Beth McCullough, Carole Dale – women I respect and admire. They are teaching their girls right. No doubt about it. We are blessed to have people like this i our corner.

Getting Stronger!

2010-03-13T17:18:00.001-05:00

2010-02-28T22:25:00.002-05:00

Today Megan went back in to the hyperbaric chamber with Pat for the first time in a long time. She was pretty smiley after it for a while and now she is sleeping - well - like a baby!!! It was the prettiest day here today. Sunny, cool and breezy. This time of the year through April is really nice. May it is already too hot for me. Unless of course I am at the beach and then bring it on - I can always jump in the water. We had a weekend of family time. Just Pat, myself, the boys and Megan. We went shopping yesterday afternoon for a few hours and then went to dinner together at Buca. Megan did good. She did decide to blow through her diaper 3/4 of the way through dinner which meant I was also wet...I have had worse things happen and it is nothing that James or Ryan have not done to me. Megan just does it still and much more frequently than they did. Still on the ketogenic diet. Seizures are up and down. The mucous and secretions are still very problematic and keeping the colonized bacteria at bay is tough. It is ready to jump on her at any moment. Doing nebs every 4 hours all day and night and doing Tobi nebs 2x day - 1 week on and 1 week off. We were ready to start capping her trach in preparation for a sleep study for decannulation prep but had to halt all of that until we can control this stuff. A vicious cycle. The cold and flu season really needs to end. That will help a bunch I am sure. I am really hoping that in April we can be done with this trach. April 1st will be one year she has it. Feb 19th was a year ago that she was intubated and the last time I heard her little voice. I really miss it. Watching videos of her with a voice really gets me. Have some paperwork to do as always once everyone is asleep. Have to fill out some admissions paperwork for James for high school next year. Tough choices. He wants to go to Tampa Catholic which is private. He tested and was accepted, but tuition is expensive and with Megan's needs it is really scary to assume that debt. What if we cant afford it or have to have him change schools? That would be worse. I want him to have the best high school experience he can. I did not really and wish I would have taken more from it when I could. Regret......His other choices are Tampa Bay Tech Architectural Program and King KAPS Program. Have to wait and hear from these two which are both public and free. He is also going to be going into braces very soon. Ryan got fitted for upper and lower retainers just a few days ago. Think I better go and fertilize the money tree growing in the backyard!!!!

Seeking Help – Draft Letter

2010-01-28T23:10:00.001-05:00

My typical day starts with medicating Megan beginning at 6:30 am & continuing until approximately. 9 am. This allows for preparation (crushing, mixing) and administration through her G-Tube and absorption. Once done with this her daily feeding routine is started. It consists of enteral feeds that run all day in increments of three hours/one hour off throughout the day and night to obtain nutrition. All basic daily activities and care are completely performed by me. Placement, positioning, suctioning, venting, feeding, changing, play, interaction, seizure monitoring, medicine preparation and administration, timing of all meds and feeds. Making sure all of her medical equipment is functioning properly, cleaned and medical supplies and prescriptions are ordered and on hand. Doctor visits for continuing and urgent care, follow up for all medical needs, health insurance and billing issues (phone calls for mishandled claims) and coverage concerns are also part of caring for Megan. There are so many specialists to follow up with I cannot count off hand. Hospital stays are also a frequent part of Megan's life.

Megan cries much throughout the day for unknown reasons to us. She cannot talk so crying is the only way she can communicate that something is wrong. Megan is severely physically and mentally disabled. Born with a bi-lateral sensioneural hearing impairment and later diagnosed with a bilateral cortical vision impairment has left no part of Megan that functions normally. She cannot hold her head up, cannot sit up, crawl, or walk. She cannot speak any words. She cannot hold anything in her hands. She cannot reach for an object nor grab one. Opening her hands is problematic. She cannot scratch an itch if she has one, rub her eyes if she is tired or reposition herself if she is uncomfortable. Megan does not sleep well or consistently. Megan receives physical, occupational and speech therapy every week Speech is more for oral motor and feeding skills which Megan no longer does by mouth since February of 2009 when she was intubated for 6 weeks which eventually led to her undergoing a tracheostomy which to date is still in place.
Megan wakes all night long, sometimes for an hour or more at a time. It can be due to seizures, reflux, suctioning or all of the above. Many nights I get a total combined 2-3 hours a night (sometimes we have an all-nighter) which can last for days on end until I literally am so tired that I am nauscious. The floors and walls appear to be moving and unstable when I walk as if I were on a boat. Megan's appointments that require me to travel don't care if I slept so that I am alert to drive. This is dangerous. I am physically exhausted and emotionally numb at this point. There are days I feel like I cannot go for another minute, let alone another day. The choice to slow down is not one that I have, nor does my husband. We have two other children ages 7 and 14 that also need us to care for and love them. I cannot provide care 24 hours a day. Nobody works 24 hours a day every day - not even in prison camps.

Arranging help to get to the necessary medical appointments is a difficult task, especially if they are unexpected, like an acute illness. Her tracheostomy requires that somebody has to be able to drive and somebody be able to care for Megan if she needs suctioning. The same applies for my other two children. I am unable to seek medical care and necessary treatments they need due to the travel difficulty and/or not having anyone capable to watch Megan so I am able to take them without her. It is not wise to take her to a pediatrician's office for one of her sick brothers if she is well as she is very susceptible to illness.

My other two children also have needs. My 14 year old has a mild scoliosis which has been assessed by an orthopedist and confirmed by MRI. He has been ordered to receive PT which has been very intermittent due to my inability to get him there. Neglecting this could lead to serious and more severe scoliosis with ensuing complications. My 7 year old is generally healthy. He is in the second grade and still a child that needs much guidance and support with his schoolwork and interaction with his parents. Not to feel that your parents have no time for you because they have to focus on another child all the time. Finding the time to listen to him read should not be so hard or near impossible some evenings. Add in a sporting or school event for either of them and it is simply too much. Mealtimes are not possible in our home as a family. One major reason is the inability for an adult to prepare the meal so that we can eat together, or at least take turns eating with the boys. We used to eat together every night up until about a year ago and would have Megan at the table and comfort her as best as we could. Our family is split in too many directions and the unity that was once there is hard to remember. It is very sad that our family is forced to live this way because we do not "qualify" for nursing help for Megan or if we qualify there are no funds and we are told the wait is 5-7 years long. My family is in crisis and is at risk. Can a family like ours survive the wait? I understand the statistics of families with special needs children are at a higher rate for divorce and for siblings to have emotional problems. I can see why this happens. To raise children is a responsibility and job that we desired and strive to do our best job to raise happy, successful adults. Meeting the needs of our normal children is falling to the wayside and it is not fair. As a married couple we have been blessed to be partners and friends with the same core values and beliefs. We are productive members of society and live with morals and ethics that have gotten us through much of this with Megan. We also feel like because of this we are being punished. Why does a family that has less than we do deserve a better quality of life for themselves and their children than my family? Their child will have the label "less fortunate" but in reality my daughter might actually be the one that is "less fortunate". Maybe their child is mildly impaired and is mobile, but the family has not strived to reach their potential as we have while my daughter is severely impaired with no mobility. The other family may receive in-home nursing assistance to help with the care for their child allowing them to partake in other parts of their life, while my child will not therefore disengaging us from life. Nursing care is unaffordable on any income level. $35 per hour is not feasible. Why income is so relied upon for this service does not make any sense.

I have had comments made by professionals suggesting my husband could help more. This leaves me almost speechless as they have no idea the schedule he keeps to maintain our family. I question what they think is going on. Do they think I have all the responsibility of caregiving for Megan and Pat comes home and sits in a recliner with the TV clicker. I am the primary caregiver but certainly Pat participates when he is home. My husband's work schedule is unforgiving as he is self-employed and owns a small business. He is a public adjuster and insurance loss consultant. He handles many catastrophic claims for personal and commercial property owners. His schedule requires him to travel almost daily with some trips necessitating overnight stays as they can be accross the state or out of state. In catastrophic situations such as hurricanes he can be gone for the entire week with a trip home on the weekends then back to the loss location. I realize that we are not in a situation like that now but these claims can go on for years until settled which does require him to travel for depositions, appraisals, on-site inspections with other professionals etc. until it is closed. For instance he can still be required to travel by plane for a claim from 2004 today.

His local client base is generally within an hour drive from Tampa and entire days are dedicated to time spent out of the county. He usually leaves by 7:30 am and returns home on an early night at about 6:00 pm but it can be as late as 9:00 pm. Average is 7:00 pm.

As he drives sometimes all day to appointments he cannot assist overnight due to the hazard it would pose to himself and others. It would be irresponsible as we could not afford for him to be out of work due to an accident nor does another family need to suffer a loss due to an incident he could cause. If he does not go to work and bring business in he does not receive pay from anyone. He is the employer.

When he returns from work the other children may have sporting, school functions or homework that requires one of us to attend to while the other attends to Megan's medications, trachea care, bathing, glucose and ketone monitoring among other things. I can stress enough how she requires constant and continual assistance and can not be left alone.

I work for my husband's company as well which has afforded me the opportunity to work from home by logging in remotely. I handle payroll, accounting, 401K plans, office supplies, tax issues, workers compensation, property, general liability and health insurance. There are also many bonds associated with the adjuster licenses and general licensing renewals for him and the other adjusters and employees who work in the office. I function in an office/accounting manager/human resources capacity. It is a small business that requires us both to wear many hats. I still work as it is necessary for our income. If he had to hire someone to replace me the financial burden would be greater than what I am paid. My position is a full time position. It is very difficult to work under these circumstances with little sleep.

My own health concerns are not able to be addressed. I do not have the ability to schedule a doctor's visit for myself. I absolutely cannot get sick. Megan's care has no flexibility and will not wait until I am better. It is a petrifying thought to think about the what ifs. Lack of sleep, high anxiety and stress and neglect do take its toll on your mind and body. My husband and I are aware of the consequences and the irreversible damage this can put on your vital organs. We both run at a pace that most people collapse after a couple of days like ours.

Management of Megan and this devastating disease is a full time job. She is considered chronic and medically fragile and/or complex. Her condition is neurological, metabolic, and muscular. Her diagnoses include encephalopathy, intractable seizure disorder, infantile spasms (Lennox Gastaut Syndrome), neuromuscular disease, mental retardation, GERD, hearing and vision impaired, and failure to thrive. From day to day – sometimes hour to hour her condition can change dramatically. A muscle biopsy in 2007 revealed mitochondrial dysfunction in Complex IV(COX) of the respiratory chain. The mitochondria are the powerhouse of our metabolism. At this point there is not a cure for Megan's disease. Proper care is essential to trying to avoid catastrophe and manage her symptoms as best as possible. . We desperately need some help to eliminate this area of medical need that has and is going unmet for our little girl. The needs of my other children, a household and work still exist. Basic human needs for me and my husband are going unmet.

It is a tragedy that we work so hard and are entitled to so little. Where is the quality and justice in this for our family and all of our quality of life? Megan's life span is predicted to be short due to the severity of her disease. It is my greatest hope that while she is here with us that she knows the best of this world that we can get some help so that we have the opportunity to enjoy her and love her the way any child deserves and hold the best memories of her in our hearts. Megan is a beautiful child that we are privileged to have been given. She has shown me love in a way I never knew existed and that many never will. The positive changes she has brought to those who know her and the lives she has impacted is greater than you would expect. Her smile gives me a feeling that is unmatchable. God created her different but I am certain he did not mean for her to suffer or for the rest of us too either. Our wanting help is not to shun our responsibilities. It is because we realize without help we will not be able to fulfill our responsibilities as parents to all of our children at this pace.

An Actual Smile!!

2010-01-22T19:24:00.004-05:00

This says it all I think. The best day in soooo long. Still some crying - but some smiling too - about equal amounts!!

2010-01-20T23:00:00.000-05:00

2010-01-20T22:58:00.000-05:00

Heading Home

2010-01-20T22:13:00.002-05:00

Tomorrow we get sprung! I cant wait to get home. Megan looks better and I hope that we got rid of this infection for real. It took the lab 7 days to identify the bacteria. It seems it is one of the rarer ones that they see. I cant even pronounce it - alcaligenes xylosoxidans - it is one of those that only IV antibiotics works on and it is resistant to almost all. At least we know what it is and can treat it. The bad news is that now that it is colonized in her trach she is more susceptible to it, just like psuedomonas. When infectious disease does see this one it usually is in a trach because they like it there. It is a common bacteria in our environment - our houses, etc but usually it does not cause infection. Key word there is usually - that does not apply to Megan. The change in her skin tone and eyes is so obvious. This thing really had a hold on her. Today was the first day she looked this good and it made me see how bad she has been looking. It is hard to see it when it develops every day right in front of you! Been talking to the pulmonology doctors about decannulation all week and Pat and I have discussed our feelings with them about it and how strongly we feel. This trach served its purpose. It was there to deal with an acute illness and recovery but the acute illness is gone, her airway is fine as are her lungs. Time to get rid of it. The Dr's point was that she can develop a respiratory infection after it is out and can have trouble. My point is that she is developing respiratory infections from bacteria now and is having trouble.........her risk of developing the infections goes down instantly once the trach is gone - no more open wound in her neck that allows germs to bypass her natural defenses and filters in the mouth and nose. And no hands constantly touching it, suctioning - we eliminate so much exposure. Also no more psuedomonas or the other thing there either. Cant live there anymore and wait for an opportunity to attack.

The boys have been wonderful again. James had finals last week. What timing - finals while your sister is in the ICU, your mom is gone so things are out of sync already and then final exams. Talking to Ryan on the phone is sad - he asks with such desperation about when I will be home. To top it off the boys had no school Monday and Tuesday and then Pat had to go away for business and flew in about an hour ago so both of us were gone. Grandmas were there to help out but they want their "normal" home life just as I do. Pat and I have seen each other in passing for weeks now. Really strange.

I asked Maxim Healthcare for a night of nursing. Should be $385 per week for one ni of nursing. $1540 per month for 4 nights of sleep. Who knew sleep could cost that much - 385 a night? I guess sleep can be considered a luxury item or pampering in some way. Like a spa day!! That makes it seem better I guess.

Megan is sleeping - O2 is 94% and heart rate is 73. Just last week her heart rate was averaging 180 and as high as 210 and she needed oxygen.

Thank you God - thanks for seeing Megan through this one too. Please see her through a healthy and successful decannulation so she can enjoy a better life. Ryan asked me why you just cant fix her. I told him I dont know the answer but I know you dont want her to hurt either. He asked if she would be able to go on vacation with our family this summer. I told him I hope so..and to aks you for it when he prays and I will too. Amen.

4 AM

2010-01-13T04:05:00.003-05:00

Here I sit watching Megan sleep at 4 am in the PICU. I am so tired but can not sleep. I was lying next to her holding her hand and thinking of how I just want to play with her at the beach. Let her feel the water on her little legs and smell the air and watch her smile. It seems like an impossibility and it makes me cry. I am trying to not make sound so no one hears but it just comes out anyway so I got out of the bed to ...... I dont know what I got out of bed to do, but here I am. The pain in my body that I feel hurts so bad. It feels like it is crushing my midsection and my chest. I feel so sad and at such a loss for everything. The reality of this whole thing feels like too much right now and I want to have someone help her so badly but am so let down by the incapability of those in the position to do more to be so clinical and unable to know what this has and is doing to our world. My poor baby has such a poor existance because she is always so sick with some kind of acute illness that seems unavoidable with this trach. A sterile world is where she would be able to escape the germs. That is not possible. She has been crying for 10 weeks with one type of infection after another all because she has a trach. She has been able to wean from the ventilator and breathe on her own. In order to get the trach removed she must be able to have it capped off and breathe completely through her nose and mouth again....but you cant do that if she has an infection in there so we are stuck - being sick - losing out on the things that we should be experiencing and enjoying. She does not have to be normal to live life. Just not sick. Why??????????????????????????????????I dont understand so many things. Why does this happen to beautiful little babies. Their lives should not be filled with such torment and pain. I love to just look at her. She is so pretty and so innocent and pure. So unscathed by the cruelties and callousness of all of this. I am trying to absorb all of the discomforts and pain for her but I know that I can not. I can not absorb them for her or absorb them for James and Ryan either. They worry and fear for Megan too. I dont know what do with this anymore. I feel like the walls are closing in and I cant stop them - suffocated and desperate for someway to stop this. You know the hourglass filled with sand and how they are always used in a race for time and they are almost at the end. I see myself inside one of those and the sand is at my neck. James is 14 this month and Ryan is 7 1/2. Their lives are racing past me in a blur as Megan's is too. How did the last three years happen. 2006 was the last time I can remember happiness. The thought of our new baby and growing our family. We were so blessed. I knew it then too. Please know that I could care less that Megan is disabled or that she will not ever know the same things that she would if she did not have this disease. I think she is the most amazing, beautiful, resilient little girl in the world and am grateful that she is my daughter. I am proud of her. She has changed all of us forever and has touched us in a way that she never would have been able to if she were "normal". I love to see her smile, braid her hair, kiss her ear and watch her react with anticipation for me to do it again. The glimpses of her personality come through and I long to see more of it, the way she is when she is not ill. I pray that we can get this trach out successfully. Go to the beach with the people I love and play with Megan in the warm water in her pink tutu bathing suit, build in the sand with Ryan and hang out with my teenage son - laugh at his take on things - have time with my husband without feeling like we are in a pressure cooker and remember why we are together in the first place and look at what we have created together. I pray that we have the strength to endure all things good and bad and remain together throught the rest of our lives, the way we intended it to be.

Long Overdue Update

2009-11-21T16:09:00.003-05:00

Since September it has been extremely busy - Megan did have her tonsils out on October 7th. Procedure went great - recovery was rough. Two weeks of being up to suction Megan almost did me in. I was so tired I was crying on her bed and moaning ' I just want to sleep'..... very glad they are out though. They were so infected for so long. Within days Megan looked healthier and more like her old self. By the time her third birthday rolled around on October 17th she was almost all the way healed up. On Oct. 25th there was an awesome birthday party for Megan that raised about 8,000 towards the irrevocable trust fund in her name to help with all of the extra expenses that go with a medically fragile child. Once you turn three the Early Steps/Early Intervention services like therapy are discontinued as they refer you to the public schools for services wile attending an appropriate school to meet your childs needs. In our case, Megan was denied services by the county schools due to her medical needs and the educational relevance of it at this time. I am not surprised, however, it leaves us with the cost for all of ther physical, occupational, speech/oral motor therapy as we have also maxed out our therapy limits under our private insurance. Independent Living arranged for Megan's PT and OT to continue for her with us private paying at the employee rate - I think like $37 hour for OT and $48 hour for PT. She sees both PT and OT 1-2x per week each so this discount is incredible. If it were not for them doing this we simply could not continue with therapy as she needs it even with the fundraiser. We would exhasut it too quickly and then it would defeat the purpose to run out.

It was quite an undertaking but it went off without a hitch. Alison Fernandez spearheaded getting it together and Margie and Joe Ferrantegennaro collected all kinds of goodies and supplies for the event and helped to sponsor it as well. Jimmy Ciacco supplied the beer, Doug Elliott hooked up the shrimp and Jeff Lupton provided hamburgers, hotdogs, sides, condiments, servers, and everything else you can think of that was needed to go along with all of it. Girl Scouts held a bake sale and had the big slide and bounce house donated by a family member. Bay Area Neuro clinic did massages and the proceeds also went to Megan. Merlin Entertainment brought the music and the Rhino. Everyone volunteered and cooked. Cant say thank you enough to everyone. We are very lucky to have such great friends and family behind us.

Megan got her first congestion in her chest since she got the trach. She is still fighting it and it is scary. Congestion can not go to her nose like it does on us anymore since her airway is no longer her mouth and nose - it goes to the chest. Back to breathing treatments through the day and chest pysiotherapy thumping - suctioning. May take her for a chest x ray since bronchitis is going around - pneumonia has crossed my mind several times. It started 10 days ago. No fever, but she never had a fever when she had viral pneumonia in January. Hoping that being on top of it so early it does not or has not turned into more. Her chest is a little tight to me. We started Zithromax yesterday since she had not cleared up as much as she should have.

And in the middle of the chest cold we finally started the Ketogenic Diet. She is responding well to the formula and feeds. Her blood sugar and ketones are good(checking each 2x daily). Seizure activity is dramatically reduced. We started on Sunday at 10pm by fasting. Arrived at the hospital Monday afternoon and Tuesday around noon she started feeds at 1/3 strength. On Tuesday we only had 4 seizures that I saw, 10 on Wednesday, 5 Thursday, 4 Friday and 4 today so far at 9 p.m. I almost feel like it is too good to be true because she has blown through so many meds and is currently on Keppra, Banzel, Clonopan and recently weaned off Topomax after two years and was having uncountable seizures - some days all day every 5-10 minutes and all through the night too. The mix of her seizures is also out of control. Absence, Tonic, Nystagmus, Myclonic Jerks and or Infantile Spasms, Complex Partial - those are what I can see and identify - there are things that I am not sure about altogether - could be or maybe something else? She has such mixed tone - floppy in the head and trunk, stiff in the extremities - stiff as a board when she wants to be. Like she will crack in half if you try to loosen her up. I am hopeful we will see good things with this for Meg. If I can just get all of her crying figured out - maybe it is from the seizures - it started about a month ago and is really bad. Mostly all day and her dystonia/writhing movements are constant when she is crying. Seems painful to move all that much with no purpose. Heartbreaking. This is the stuff that breaks me down and gets me depressed. I dont know what to do or how to help her. It makes me so sad, angry, disgusted -hopeless - feelings I dont have room to feel and do a good job taking care of her. I dont want the boys to see that either and it is hard to conceal. It eats me up. It is hard to balance the rest of my life when I feel like that and it is unfair to Ryan & James especially. I feel detached in some strange way like I am shut off somewhere and I dont want to be. I keep thinking that God has to hear her cry and me cry, and Pat and James and Ryan's issues too and help Megan most of all which obviously will help all of us. Hate to sound so down when the seizures appear to be improving but her discomfort has been really bad and hard to see. How can she be weaned from the ventilator and looking at getting the trach out by summer, having less seizures, have her infected tonsils out and be crying and in distress all the time now? How can this be? Something has to give. I wish I could, but how.

The boys are hunting until Wednesday which is giving me a lot of quiet time. They will come home for Thanksgiving and hopefully I will have some answer about what hurts her so much and how to help her so it will be a good day for us.

The good, the bad and the ugly...

2009-09-13T09:56:00.009-04:00

The good:

James and Ryan are doing good. Posted some pics of them - James after football practice - dirty but I think he looks grown up - and cute. Ryan after his shower - showing off his muscles. Ryan and Meg snuggling together - my snugglebuddy and my snugglebunny. That is their nicknames. I am usually in the middle.....

Meg in therapy with Cindy- her OT - I love the way she is looking at her like "Of course I can do this - did you expect less??"

Megan has continued to spend more time off the vent than on. It is really nice. Makes Meg much more accessible to hold and love. Being off the vent means lots of open suctioning of the trach which has not made travel any easier, but it is a start. I am really proud of her and amazed at how strong she really is.

The bad and the ugly:

Infantile spasms - they are back - and just three days after I postponed the keto diet for her tonsils. They could reverse everything good that has started to happen. I am a mental wreck and can't even think straight. I am at a loss to describe the desperation I feel this weekend. What is next? Next med please... Sent an email out to see about HBOT's effect on IS. I am ready to take her in to the chamber - cant make her seizures worse - they are worse now.

I will call Dr. C tomorrow about vigabatrin and starting it - or clobazam - whichever he thinks is best. We are weaning the Keppra so at least we can get rid of one and then add one. A balance I guess.

Feeling Better

2009-09-04T14:00:00.005-04:00

Okay - I am back in the saddle again. Had two great happenings. The first was on Wednesday night - the one shift of nursing we get a week is on Wednesday nights so I can get a nights sleep. Betty, a nurse of 50+ years comes and she is the sweetest, most tender woman with a WHOLE lot of experience and knowledge. I have much respect for her and what she has done and learned in her lifetime. Anyway, I have been thinking that Megan bubbling out of her nose and mouth like a dog is because she is pushing the secretions from her chest out that way (which she is not supposed to be able to d0....). I notice when she is off the vent it stops happening so it only makes sense. I was sharing with Betty and she agreed that this very well could be. Megan would not settle down for anything - racing heart, agitation, the whole thing. I took her off the vent and it was magical how calm she became. Her 02 sat rate was at 98 and her heart rate a nice even 100. She fell asleep and we left her just this way - off the vent, suctioning as needed - about every 10-15 minutes. She stayed that way the whole night and slept like an angel. Betty was delighted to do this all night, which she could have said no to. She sat at her bedside all night long. She said to me the next morning - why does she have a vent?? Why does she have a trach? I told her she got the trach for the vent because the Dr.'s said she could not breathe on her own and the chances of her ever again were slim. She told me of how in her experience kids that can do this and go all night which is the most vulnerable time, are certainly not vent dependent.

It was a reassurance of Meg being strong in her lungs that I needed. The best part is she stayed off the vent for a total of 22 hours and did great. I had to put her back on last night to sleep because I could not keep my eyes open to watch her. It was a safety issue. I need to be able to respond and suction and I certainly could not do that with toothpicks in my eyelids.

We went to see a new ENT during this and he was awesome. Wish I would have seen him 2 1/2 years ago. So smart!!!!! Worries about the whole child and knows so much about diseases, diet, allergies - you name it. He was kind and very willing to spend as much time as he or we needed to figure things out. He assessed Meg's tonsils and said that it is viral, HSV virus living in the tonsils most likely and they need to come out. The tonsils started July 17th - it is September already. October 7th is the day and I cant wait. I have thought this since she was less than a year old getting tonsil infections every month to the day - exactly. As far as the vent/trach stuff he said he thinks she does not need either for much longer and he told me that she was fighting the vent with her natural breathing pattern and pushing the mucous out the nose and mouth. Another way that I was reassured.

I thanked God for giving me the signs I was so desperately in need of.

Alas, everything cant end good - just g0t a phone call with some more denial for nursing. Although we were approached by Hospice Palliative Care from the article in the paper about offering some nursing overnight shifts for Megan, they assessed her this morning for about 3 hours here and had a meeting about it after and it was decided that she does not qualify after all because of the vent. A vent is a life prolonging device and hospice is geared to comfort care and quality of life for life limiting diseases, not for qualify of life if any machinery is used other than feeding tubes, BIPAP ,CPAP - even if she is weaning off and the future looks to hold no vent for her. When the vent is gone, we can reapply. Good effort...another crack we fall into. We must be the CRACK family!!!!

Am I disappointed to know sleep is not in the future? Yes, but there is nothing I can do about it today.

Bad Days

2009-09-01T18:57:00.002-04:00

I am having a hard time the past couple of days with how things are for Megan. There were a bunch of videos that had become damaged in my laptop and I could not recover. I had searched for ways to recover them and could not. I spent hours on the phone with Flip support - you name it. They were gone. Somehow they amazingly reappeared and I sat and viewed them. It was so painful to watch video of Megan up to Jan 09 and then look at her now - how could this have happened? When did she deteriorate to this point. It happened in front of my eyes and somehow it slipped right past me, or I have been too consumed to fully see it. I dont know but it hurts. I want her to hug me and cuddle me and she cant even do that anymore - not with this monstrosity coming out of her throat with all the tubes. I am not big on the boo-hoo card but sometimes reality smacks you right between the eyes and it is a jolt to the system. I guess that is what I feel. I am also so worn out from all the people looking for information from me - I barely have time to shower each day. How do I explain that to people without them thinking I am being over-dramatic or looking for sympathy? I want to stop answering the phone.

Loss of a child with Mito

2009-08-30T10:30:00.002-04:00

This is straight off the blog from another parent that has two kids, one with Mito Encephelopathy and one with Autism. This literally took the breath out of my body when I read it. The pain I felt for this family was unreal. I am still crying. Please pray for this family. Thanks for posting this Colleen.

Today my heart is breaking for one of the familys that I have been following the past year. They had two little girls and expecting a third. Their little one Marie had a type of mito, called Leighs disease. I have been following their joys and struggles. Yesterday I witnessed both of these. Thursday they welcomed a new baby girl into their family, Sarah. Sarah met her big sisters that night. Sadly Friday morning, Marie made her journey home, carried by Jesus. She passed away in her sleep. My heart is just aching for them. Please send some prayers for their family!
created with love by Colleen at 8/29/2009 07:58:00 AM

Health Care

2009-08-30T10:11:00.001-04:00

This is an email that Pat sent in response to something he received. I thought it was something worth sharing. Feel free to do the same if you like.

The health care issues at hand have gotten convoluted. We should not get so bogged down in the finger pointing, but focus on simplicity. Just as this country was founded and has evolved into the greatest in the world everyone has actually gotten too far ahead of themselves. Earning, accountability, repercussions and risk have been left to the way side as merely expected actions. In turn, those that take these actions, abide by the rules, and are productive in our society carry this burden everyday to provide for those that are less fortunate and those that do nothing. It is horrible that there are individuals that know someone will provide for them and they think it is their right of passage to get a hand out. I am all for helping those that have fallen on hard times, disabled, retired, etc., but to keep enabling our society is a crime in itself. This is exactly where this health care reform is headed. It’s just down right scary. In my specific situation with my daughter it is perplexing that my government thinks it’s okay for my wife to loose sleep, be a full-time caregiver & nurse, surrender time with her other children, become sequestered to the house, socially reclusive with our other children’s education and activities, a shower and brushing her teeth before noon is a luxury, pay a private caregiver to make doctor visits, and that a visit to the emergency room with Megan is considered a date for us. This is all because my income doesn’t make my daughter quality for the benefits I work so hard to provide others. Why are those that qualify for benefits any better than my wife and I? It’s not okay for them to loose sleep (so give them a nurse), miss spending time with their other children (so give them a nurse), go shopping (so give them a nurse), need to be hospitalized (so provide them insurance, no payment necessary, no haggling with the insurance company) or quit their job (so provide them funding and they don’t have to work), but it is expected of us? It is absolutely wrong that we are being treated like this when we are working to support these other folks that “qualify”. It’s been an adage within our society for many years that it’s more financially rewarding to stay home and collect a check than to get a job. It’s time for the party to be over. Our founding fathers would turn over in their grave. If I am correct the “us” makes up about 90% of the population. It’s pretty simple. When we colonized and built this country everyone worked in some capacity. If they didn’t work, then they starved. No one starved, because they knew they had to work; either with everyone or on their own. There were no hand outs and it was frowned upon not to be a productive individual. Why is today any different? I have a problem with giving, providing and rewarding those that do not contribute and penalizing those that do contribute everyday, every hour and every minute. My particular situation is plainly a text book example of why our system does not work. My government has failed me. My daughter is broken. It is not her fault, nor mine. If she could choose I guarantee she would like to be able to walk, talk, hear, see and be totally cognitive of her surroundings to enable her to excel in society. Instead, she will never run on a playground, drink from a cup, eat at the dinner table, say a prayer, ride a bike, be a cheerleader, read a book, graduate, drive a car, work, or walk down the aisle with me by her side. This is the question, “If we cannot provide the necessities to the producers of this country and we cannot adequately administer our current government programs (SS and Medicare), then why should we GIVE anyone anything when we cannot afford what we already have?” It sounds like the housing crisis, when everyone took out equity lines and lived beyond their means. I know you understand all of this, but it is unconscionable that our nation continues down this path. We have to correct the current system first. Feel free to pass it on

Tampa Trib Article

2009-08-27T18:57:00.002-04:00

I just added the Tampa Trib/TBO article that ran yesterday. While it is okay, it is inaccurate in some of the items - such as overnight nursing only being needed and the cost @ 300,000. The need is 24 hrs and @ 24 hours/365 days a year it is 300,000 + and for 12 hours per day/365 days a year it is 150,000 +. Some people were brutal in posting comments but I do realize that this is an article, not the whole story and not all that Megan is. Megan has not always been like this and if not for medical side effects, some screw ups she would not be in this position. On the other hand, these devices have also saved her life from dying from the medical mishaps. Yes - she has a genetic metabolic, nuerological disease. Her seizures are bad - there have been too many physcians who are much too passive and ALLOWED her seizures to escalate while experimenting with medications to try and fix them. Most write these kids off and dont try hard enough. Parents with children like Megan understand that there are some things that can help and unless you scratch and fight it does not happen. Our point was to be that there are children less severely affected than Megan, who receive "free nursing" because they qualify financially. Because we are not indogent we dont qualify. Our private insurance does not cover. I cant buy the coverage, or else I would!!! Believe me, I would! Why does the child from the family that is indogent deserve a better quality than my daughter - the daughter of a family who helps to provide for the indogent family. They get to sleep because they have a nurse. Then in the morning they get to get up and do whatever - because a new nurse comes. I do not want someone else to "take care" of my child. I am on it - but I do need to sleep so that I am able to . I also need to be able to wean her from this ventilator which will require supervision so she can have a better quality of life. That is the goal here - it is not to torture her. And she does know she is loved, and she does love us.

Giving all for Megan

2009-08-27T18:56:00.001-04:00

Giving all for Megan

Shared via AddThis

Overdue update

2009-08-26T17:27:00.002-04:00

Another month has gone by and a lot has happened. Meg has been sick for the entire month of August with a throat infection that will not go away. The omnicef started to work and then the puss returned within three days of the last dose. She then had Rocephin shots three days in a row which cleared up the tonsils again - for one week exactly and then it was raging again. We then started cleomycin which once again cleared up the tonsils until the 9th day of treatment(10 total) which was this past Monday. We stopped that one and the Dr. switched her to Ciproflaxin and Diflucan thinking that it is fungal or yeast and/or a very resistant bacteria combo and we should try to get it with these two. Maybe psuedomonas? Commin in kids with trachs. It responds to the antibiotics and then resists it. I hope that we dont have to go inpatient to treat this one. Being sick is a big setback for her. All that rolling has come to a halt. We also started her on a new seizure med - rufinamide which was approved in the U.S. in November of 08 and it just being prescribed to patients this past spring. I have seen less seizures since she has gotten to full strength. I could not count the number in a day anymore and today I have seen about 8. She will have more when her body is fighting and illness too, so maybe it is working better than I see right now. The ketogenic diet is also planned for September still. Pat and I have met with Senator Victor Crist last week to talk about the gaps in health care for Megan and the devastating effects it has on everyone and how Megan deserves the same medical attention that someone who does not have insurance or cant afford insurance gets. Why does she not qualify - it should be a quality of life issue.

Rachelle also left for grad school - we miss her a lot. She became a normal fixture and part of every day around here. Meg sure does love her too. We will be happy to see her when she visits us - RIGHT RACHELLE? WHEN YOU VISIT US???????

Kaela(Rachelle's old roommate) started helping out this past Monday and she is training on all Meg's stuff. So far so good.

Going to go eat dinner right now - blog later.

Article in Tampa Tribune today - will post it in a little while

2009-07-29T07:48:00.005-04:00

July has gone by very quickly. Cant believe it is the 29th already. Still working on many of the same issues but making a little headway which feels pretty good. My mountain of paperwork has been reduced to just a laundry basket full. James is getting ready to start football next week so that really takes a big committment from us as there is practice 3 nights a week and games on Saturday at different places. It is a lot of fun to watch them play and I am planning on trying to take some of the games this year. I found these cooling cloths called Frogg Toggs that you wet and then they keep you cool for a couple of hours that I think will really help her to be outside. Heat intolerance is part of her condition and she just shuts down so if these work it will give her a lot more freedom. We do live in Florida so getting away from the heat is not an option.

We received some information from a geneticist in Atlanta that we have been working with and she is running some additional studies on Megan. Seems that her mitochondria are damaged but her thoughts were that it did not start there and the mitochondrial dysfunction is from a gene with a transport or processing issue, better known in the medical world as diseases that are inborn errors of metabolism. She has them pretty much narrowed down to a few. The prognosis is not better or different than it being the mitochondrial dysfunction primarily. The ones with testing being run are also not curable and are progressive and degenerative. Her presentation of symptoms is classic for the ones the geneticist discussed with me and I actually had them printed in my notebook of "stuff" that I think is relative. Still like a punch in the face though. Always holding out for the one Dr. to say "Good news - it is not what we thought and it is this and we have a cure." That would be part of the Miracle that I pray God will grant Megan. I dont care how it comes about - a scenario like that or any other - we'll take it!!!

Of the few I am hoping that if it is any of them it is the Pyruvate Dehydrogenase Deficiency. The others are leukodystrophy and liposomal storage diseases. All of them are metabolic diseases and a couple of them actually are classified under the United Mitochondrial Disease Umbrella. I was familiar with them when she spoke with me about them because I have read and researched them so many times. She was able to tell me that it was autosomal recessive meaning that Pat and I both carry a defective copy of the same gene and that the chances of any of our children inheriting the disease had only a 25% chance. The chances of us both having the same bad copy were incredibly low. We had a better chance at winning the lottery. The boys can both be carriers but they would have to meet someone with the same bad copy and then would have the same odds.

Meg was doing good the past couple of weeks and actually rolled over about 6 times by herself - in one day! She was showing off. She was so happy and smiling that she did it. Both her therapist and me were so excited when she did it!!! We have great therapists. They really love Meg.

She is on Diflucan right now for yeast overgrowth in her gut and mouth which is another little setback as it is killing her stomach. I have not slept in 2 nights (neither has Meg) and am really tired. Think I have to cancel therapy for today. She is not up for it and neither am I. My eyes are crossing right now as I am fighting to hold them open. Ryan has been awake since the crack of dawn and Pat left for Atlanta for business around 5 am so the day has been started for a while here already. James is sleeping - seems like this summer the sleep monster invaded his body!

Last thing - still waiting on the Ketogenic Diet. Another Mom told me about the Modified Atkins for seizures too. Contacted the Dr. at Johns Hopkins who is the brains behind them and they are having a study coming up that I might put Meg into for the seizures - if we can help with those more it could help to slow down the progression of her disease and give her a better quality of life overall.

Posts

2009-07-01T17:38:00.002-04:00

Wow. I just figured out that there are a bunch of posts in the blog that I could not see(I think I have mentioned before that I am an idiot with this kind of stuff sometimes). I have read each one and am speechless with the love and compassion in each one of them. Thank you to everyone for all of your thoughts, wishes and prayers. I know they have helped.

My gratitude is endless! I know if Megan understood, hers would be too.

Happy 4th of July

2009-07-01T15:29:00.002-04:00

Can't believe it is July 1st already. I love the 4th of July. I think it is my favorite holiday besides Christmas. Aunt Wendy sent Meg a 4th of July dress in January that I cant wait for her to wear. When we were deciding if we should proceed with the Trach for Megan I remember being home in her room and holding her dress and thinking - she has to wear this dress on the 4th of July. As strange as it sounds it was a turning point for me in the decision process because I could not imagine her not being with us on the 4th. So the dress is more than just a dress for me at this point and so is the 4th of July.

Megan had her central broviak line removed over this past weekend slightly ahead of the scheduled date of July 2nd. She developed infection in the lines that had to be treated right away and removal right away so it would not turn into sepsis. Those lines are scary things. They dont belong in our bodies. I was so careful with it and she still managed to get infected. I think she did it on purpose so she could go in the pool again. It is a little bit more freedom for us. They got in the way A LOT. Her chest looks so bare now too.

Going back to the PICU was scary. I was afraid Megan would get a secondary infection and would get sick. It was nice that we had a private room so we did not have to share germs and it was really good to see some of the nurses that I became so bonded too. I have to make time to be able to stay in touch.

Summer is rolling by and we are still just taking it day by day. I am sad that we are not going away with Jimmy and Wendy this year, but we did not know how or what was going to be going on this summer. Still dont really!

Megan has ongoing seizure issues and it sounds like she is going to start the Ketogenic Diet. It can be helpful and certainly should have less side effects than ACTH. Have to go do some reading on it now.

Happy 4th of July!!

Busy Week

2009-06-10T10:18:00.002-04:00

First thing I have to say is I have no idea how to respond to comments that I get - I am an idiot sometimes with that kind of stuff. Thanks for all the info. I have been up every chain of command and every tier of social workers you can think of. I am finally making progress with the Senator's office. The med waiver I have applied for and when she turns 3 she can actually be on the list - however long it is. I think that we are stirring up an area where there is a great need in this country and hopefully we will be sucessful in getting some things changed for not only us, but other kids and families like us.

School is out here as of last week and the boys are home. I like it better - even though the house is really crazy. No having to get anyone out the door and force myself up at 6 after only getting to sleep a short time earlier. I can sleep till 8 now. Woohoo! Trying not to fight the grind on any level. Making appointments that work for us and not pushing Megan too much.

We have some new stuff happening - going to Detroit to see a specialist that works with infantile spasms and metabolic issues in the brain. I found him through other blogs and chatgroups from parents who have dealt with stuff like this too. We are slotted for August I think - first available. Cant wait! Have a whole list of genetics that have not been run that can be helpful too in sorting some stuff out. I have been busy doing my research.

Think I found the van style we need - rear entry - full cut so Meg can sit up in the second row between the 2 captains seats and we will still have the option of the bench in the 3rd row if needed. Like I said before - busy week!

Last night I read a book to Meg I have had since she was 1 month old - The Magical Mermaid. I have never been able to read it to her as I thought it would be better for a 4 year old but I thought why not. It gave me mixed emotions. I cried thinking back to when I bought it - I had no idea that she would go through all of this. I cried too thinking about how you take reading a book to your toddler for granted and how I wish I could just do that comforatbly and enjoyably every day with her. Does not mean that I am not going to read to her - still going to. I love it and it makes me feel like there is some sense of normalcy going on.

Day by Day

2009-05-30T13:55:00.004-04:00

Each day has brought so many changes in the last 6 weeks since we have been home. I have somewhat adapted to being homebound but at times it is still hard not to be able to go to the store to pick things up that we need or just get out for a little bit here and there. It was hard to do those things before where now it is not only hard, but actually impossible now without a second person. Even with a second person it is still difficult. Between all of the equipment, the preparation to go, the task of loading Megan into her wheelchair to get to the car, then getting her from the wheelchair into the car seat, reconnecting everything and then loading the wheelchair into the back you are wiped out by the time you do that and then you have to do it all over again at your destination, then again to get back in the car to go home, then again to get her in the house!!!! Everything has to be timed precisely for meds, feeds - you name it.
We have been trying to figure out this nursing thing and it is a nightmare. Everything that is a resource that you try to get help or find assistance it ends up not being anything. In between taking care of Megan I have been trying to find all this stuff. Night time is the worst because we have to make sure that Megan does not have any problems which means you can't sleep. Not really. I sleep on her bed curled up at the end like a cat or along side of her on the opposite side of the vent hoses in the crack between her and the rail. Either way I have one eye open. I miss sleep so much!!!!! I got used to some sleep in the hospital. I think subconsciously I knew there were nurses so my body just collapsed everynight when we were there and now I am back to the grind. What is most upsetting is that it is dangerous. Nobody can be on call 24 hours. Something is bound to slip by. If she vomits she can aspirate or plug her trach. You can miss that and then it can be fatal. Social Security Disability cant help with the expenses because we have too many assets - more than $2,000 worth! Duh - hopefully people who are having kids have that. Medicaid has a program called CMS but that is income based also. I submitted our info to both. SSD denied already and CMS has not responded yet. United Health Care has denied nursing and our Dubable Medical Equipment limit for the YEAR is 2,500. Vent equipment alone costs apx. $1800 per month - so we met our 1,000 deductible already and we have already exhausted our DME limit. That does not account for all of the GTube, Feeding Pump, Trachs, and all of the supplies needed to care for all of that stuff or adaptive equipment that is necessary. Big bill for us. Nursing is about $35 per hour for us to private pay which equates to over $300,000 a year for what Meg requires. Not possible. I guess that we have to become indogent to qualify for any assistance and then when all five of us are being supported by the government that will make more sense???? Then the government can come up with more programs to help people to get off of the system which my boys will need. If we could just get some assistance now then we can all remain productive and continue to plan for their future and our future, take part in the workforce, pay taxes, etc. Pat feels like we work and pay taxes to help everyone else and we cant get help. The system needs serious reform. Even if you have private insurance like we do it excludes so many things that you need at the most crucial times that are unexpected and unplanned for. Then you get caught in the gap of having exclusions on your private insurance but being overincome for any assistance on care that can and will deplete everything. If we were at a qualifying level we would have EVERYTHING Megan needs with no questions. They call it being "less forutunate". I would love for whoever deemed someone less fortunate to come here and tell me who is less fortunate than Megan. She did not create her situation, nor did we. It is not a generational thing with our family to need assistance as it is with so many others. We have acted responsibly when having children and have taken care of them and still are. I could go on and on forever. Pat sent information to our representatives in hopes of getting somewhere. Not only for us but for other families like us. We can not be the only ones caught in this gray area. And sadly you would never know it existed unless you have a medically complex child that requires extensive amounts of care. You dont see very many children with special needs in comparison to normal kids. Why would they not help the small percent of families with children like this instead of letting it get to be detremental to an entire family.
In lieu of all of these challenges Megan is doing good as far as getting stronger. She is having seizures again and Tuesday morning we are going to have an EEG to see what is going on. I am scared that the spasms are back. I cried amost all night on Wednesday night thinking of all the complications that can still come from them. She is really looking better and using her hands to explore toys which she has not done in sooooo long - since last summer. She is smiling and interacting a lot more and cries a whole lot less. Her lungs are strong and we are making her muscles stronger to work towards getting off this vent soon.
I have to go look at minivans to make transport easier with Meg. The Expedition is too high and hard to get her in and out of it and lifting the wheelchair in and out. Lower minivan should make it easier. I said I would never have a minivan, but once again life has proved to never say never! We looked into the converted minivans with the ramp and the lowered floor to make transport easy but they are so insanely priced. A used one is about 40,000. A new one is over 50,000. That is crazy!!!! And you lose so much seating... where are our other kids supposed to fit???? It is not only Megans vehicle, it has to transport a family!
It has been a long time since I have written so I am sure I am blabbering and am all over the place. Too many thoughts to write them all at once. I am started to confuse myself.
We have had great meals delivered every Monday and Wednesday night from families in our community which have helped out a lot. It has made it so we can have dinner together at least 2 nights a week. Little things like that help a lot and we have really appreciated it.
Our friends and moms have been great as usual. Thank God for them. I dont think we could make it without them - I know we couldn't. My mom went to help her boyfriend get through his chemo and radiation and I miss her a lot. It has only been 4 days and she will be gone about a month. Wow - going to be a long month for me. She helps my house run these days and is good company for me. She also tolerates me with all of the emotional ups and downs and understands why I am having them. Nobody knows you like your mommy even when you are a grown up. I hope I am as good a mom to my kids as she has been and still is to me.

Busy day

2009-05-09T07:46:00.002-04:00

Yesterday we had our first check ups since we left the hospital. GI and Neurology. GI was necessary because her belly has been upside down since United Health Care decided that they dont cover Prevacid anymore for her - I can get it but at $300 a month. We tried Zegerid which is supposed to be equivalent to it. Not working. She has been throwing up her feeds periodically and I am having to run her feeding pump so slow - thankfully she has some "extra weight" from the steroids that still is shedding but she needs more nutrition. The GI Doctor told me that health plan will cover the compounded form of Prevacid, which is so silly because it costs more to do that than just give the solutabs!!! Whatever - they make no sense. Today I will hunt for a local compounding pharmacy and get it done. Neurology appt proved to be reassuring to me. Another sign that we did the right thing. Her normal neuro did not see her @ the hospital - it was an associate. Her MRI did not look good - the brain looked smaller - the space between the skull and the brain was larger than a year ago and it showed that her white matter had shrunken. As it was told to me by one of the internists - her brain looked like an 80 something year old brain - her brain reached its 80's. Another Dr. said she could have possible had a few weeks - 6 months from looking at the MRI - another said her brain did not know what to do anymore in terms of controlling basic instinctive functions. Well, her Dr. said that the MRI is just a picture - we need to look at her and what she can do and that steroids can make the brain seem smaller and shrunken - she was still ON steroids at the time of the MRI. I know he said can, but that is a huge factor in making life decisions. I felt very positive about doing the trach/vent once again. She still is doing awesome. Has not required oxygen once - setting it off because she is redirecting the air and is breathing through her nose which the trach is supposed to bypass that part. She is learning how to make all kinds of noises too. They are quite interesting - a little scary maybe - LOL!!!! We have vent clinic next Wednesday and I expect they will ween some settings so she can do more on her own. If we keep going at that rate, we can get off this thing.

Did I mention that I got all her records from this past stay and the one before when we were there in January and I almost fell off the chair when I read the reports from January. The ER did an XRay on her chest for her heart it showed that she had pulmonary edema, pneumonia in both lungs and called for pulmonary care. I had kept saying I heard her gurgling and she would not drink her bottle or take her pacifier (it is in the reports). The resident told me that the chest x ray was clear and maybe we should do a swallow study to see if she is unable to swallow. I refused the swallow study because she was still eating her meals by mouth at that time. Apparently she had pneumonia in January along with the complications from the ACTH and the focus was so much on neurology and cardiology that somehow the chest and the ER report did not get taken into account. So basically Megan's ordeal was avoidable if she would have been treated in January. Untreated pneumonia - uh anyone would have problems, dont you think. I thought to myself I cant imagine if we would have decided to not trach her and let her go peacefully in the garden(one doc suggestion) and then I would have read those reports. I would have felt like I killed my daughter. I could not imagine how I would be able to live with myself for not reading reports first. Confirmation to follow my gut - always. And read everything and ask to see EVERYTHING even more than we did no matter who you might piss off.

Today we are having a birthday party for Ryan. He will be 7 on Thursday. Can't believe how big he is. He was just my little baby too. He is still the best snuggle buddy ever and we make that part of our day every day. We are just having his best little friends that he plays with on a regular basis - none of the big party where you invite the whole class. It is 90 degrees out so we are having a little pool party. Meg might have to sport a bathing suit!!!

True Words

2009-04-27T20:39:00.003-04:00

Our cousin forwarded this and Pat thought it perfect, as I did too:

Being happy doesn't mean everything's perfect. It means you've decided to see beyond the imperfections! God didn't promise days without pain, l laughter without sorrow, sun without rain, but HE did promise strength for the day, comfort for the tears & light for the way.

We have been home two weeks tomorrow and Megan is really doing well. She looks good and has been acting more like "Megan". Getting lots of flirty little smiles and she has been giving Daddy those special little fluttery eyes that she does. I dont think Megan suffered any setbacks that she cant overcome at this point now that I am seeing her healing. I think if we can get her weaned off the vent she will be able to make some positive strides forward and live a little bit. Seizure activity has been non-existent from what we can visually see. Her belly is giving her some challenges, but I think we can manage that too!!

Discharge plans

2009-04-12T22:24:00.002-04:00

So it has been 12 days since Megan got her trach. The surgery went well and she is healing up nicely. Six days after the procedure they did the first trach change which was last Monday and from that point on it has been learning and adapting for us. It is not half as scary as I thought, although it is not ideal of course. She was taken off of the hospital ventilator last week also and put onto the home ventilator and she adapted great. She has actually been on room air since last week and has not required any additional oxygen, just the ventilator which is something I really did not even know you could do. It does not mean she will not require oxygen, but it can fluctuate according to her needs. The first step is to adapt her to this and then hopefully we can get her to be off all equipment during the day and just use the ventilator/oxygen at night and from there maybe get off all of it. Shoot for the stars!!! She is looking better and is having periods of waking and interacting but she has been sleeping a lot. I think she is in hospital mode right now and we will see more of Meg once we get home. It is amazing how the hospital itself affects people. Today is Easter and it was definitely different. I made a ham and a pound cake and the boys and I packed it up and took it to the hospital and the five of us had Easter dinner together in Meg;s room. It did not matter where we had it as long as we did it together. That is the important part. We are planned for discharge on Tuesday as long as everything goes according to schedule. United Healthcare has to approve the 30 days of overnight nursing and the DME has to get us all of our equipment. They called me Friday am to tell me that I only have a 2,500 DME limit per year on the policy and the trach/vent/oxygen and supplies are going to eat that up in a couple of months. It was like they were checking to see if I wanted to get the stuff. How stupid - of course I do. We are taking Megan home and the rest will work out and we will take it day by day. I go to SSI on Monday the 20th to see if we qualify for any medical benefits secondary to our private insurance due to the medical requirements and additional care the vent takes. I am told that we do and it does not matter about assets and income and that it is based on medical necessity and care now rather than those things. We will see......I hope so because Megan will not be able to be left with anyone unless they have experience with trach/vent care. I also can not drive alone with her anymore in case of the vent. Two people from now on so unless I have someone I cant go anywhere that requires driving. Big changes, but I am not complaining. Having Megan is worth all of the additional changes and adaptations. She kissed me back tonight when I was bathing her and was getting pretty feisty about her spa treatment and it was the best feeling. She tired quickly, but there was a glimpse of my little girl!!!! Looking forward to going home on Tuesday but I really am going to miss some of the nurses and respiratory therapists here. This is our 8th week here and I am attached to them. It is the first time I've ever experienced that I am going to miss anyone from a hospital stay. Having such great people here has made this so much easier to do. As far as hospitals go I would give this a five star rating - I wish I did not have the experience to know the difference, but since I do I would recommend coming here with your children for anything serious.

Toes and stuff

2009-03-30T14:32:00.002-04:00

Rachelle had a great idea on Friday - to polish Meg's toenails. She had never had her toes done before. Here is the finished product. Sexy stuff, huh??? Good idea Rachelle. Mommy loves to polish toenails.

The Wait

2009-03-30T14:17:00.003-04:00

So it is Monday - and we still dont have the trach in, but we are scheduled for Wednesday. The attending doctor that came on last week wanted to be sure that all her vitals were in check, which I understand, and waiting for that meant the next surgery day was this Wednesday. Surgery does not happen every day - a few days a week unless it is an emergency procedure. He also wanted to make sure we understood what a trach was and that we were on the same page. While I do and we are I really did not need to go down the same path I just agonized over the entire last week. I was a complete disaster again last Wednesday and felt like I was hungover once again. I am more reassured every day that we made the right choice though because Megans vitals are PERFECT - meaning her brain is controlling these things. Breathing not yet, but she has overall general weakness that we have to overcome. Slow and steady wins the race! There have also been a couple of people who have told me some things that have really meant a lot to me in terms of putting this into more perspective too. The pastor here told me that in reading the blog he thought of the shephard who had 100 sheep and one got lost so he left the flock to find the one - leaving the other 99 behind for this one lost sheep. That is Megan - my lost sheep. It makes sense. Also, Maria, a friend who is in Orlando had one of her associates stop by to visit us and simply put she said that time is a luxury for us and why not take that luxury. Those were not her exact words, but they make sense also. We can never have enough time with out kids and sadly we dont always realize it until you think time might be out and then it truly is a luxury, not a given. And Megan is entitled to more time - after all - who has fought harder than her to be here? She has done all the work - I have just been the coach. This is one luxury I will not deny our family. We all love her so much and each and every one of us is willing to sacrifice ourselves for her. Isnt that what family is all about? Unconditional, selfless love. As a mother I have always known I have this in me but to KNOW that James and Ryan have it also is something to be proud of. They are great little men already and like I have said before - will be the best husbands and fathers because of this. They also have an awesome role model - Pat is a great daddy and husband.

Moving Forward

2009-03-24T11:48:00.003-04:00

Friday and Saturday night with Megan. I woke up in Ryan's bed with a headache like I had been out on the town all night. We know that did not happen! Ryan was crying on Saturday afternoon about his ear and I spent a couple of hours at the doctor with him for inner ear infection - yes, the doctors office because I dont see enough to get my fill!!! Saturday evening was cuddling Ryan, which I love anyway. James was busy doing things with his friends - they went to a wrestling match. He had fun which is good and he needs to do that, but I wish he would have been home a little more, but it is okay. Pat came home on Sunday around 11 from spending Friday and Sat night with Megan. I had spoken with Maria, a friend of mine who is a physician and got her perspective as a friend, mother and doctor who also knows the dynamics of my family up close and personal. It really helped me too. It confirmed my gut to go ahead and get the trach done. I told Pat that is what I want to do because I will NEVER live with myself if I am questioning the decision not to. He was supportive and understood that a decision like that could literally destroy me, us, our family as I would not be able to get over it. He also did not cross that line either. I have regrouped and have a plan to go on - how well it works time will tell but right now the plan is to get the trach, after a week ENT will change it for the first time and then we will remain inpatient in ICU and learn it all from A-Z - alarms,suction, vent settings, collars, bagging her (sounds funny) - I am not afraid of any of this technical stuff. I feel like it will become part of the routine just like everything elso has. If all goes well after surgery and "training" then we can come home on a portable vent and start therapies at home. I am going to get some sort of housekeeping set up for like 3x weekly to just do general straighten up, vacuuming, etc and deep clean every 2 weeks so that I dont spend my time cleaning when I do have extra time. I want to spend it with the kids and Pat. I dont know what type of nursing assistance I will go home with other than short check up visits, but I am going to hire private duty nursing for overnight in any event so that I can sleep and be rested to do what has to be done during the day. I am not going to worry about the rest of it. Nothing is more important than living every day as happily as possible for all of us. I dont know how much time Megan does or does not have, but whatever she has I want to enjoy with her, James, Ryan, Pat and Sugar and the rest of our family and friends. We dont need to travel to fancy places or go on big vacations - we can do it all pretty much where we are. No pressure. I also am going to set boundaries for myself for what I can physically accomplish in a day as well as for the rest of us. Life wont end if something does not happen, well, in most cases it wont! As it sits right now Megan is scheduled for tomorrow or Thursday to get the surgery. I cant wait to kiss her all up on her face where it has been blocked for over a month. I feel good about our decision and choices for all of us and think it is the best way to know what is what. Her blood pressure and glucose have normalized and her heart rate is only slightly elevated along with her temp, but I mean slightly. So her body is working its own stuff - I knew it could!!!! She is much stronger and moving her hands and arms and starting to move those little feet too!

Is this really happening?

2009-03-21T21:26:00.002-04:00

This past Tuesday-the 17th-they actually extubated Megan and within minutes her Co2 was too high and she was turning gray so they immediately reintubated. The doctor talked to us about our two options - a tracheostomy or extubating and letting her go. I have never cried so much as I have over the last 5 days. I came home to see the boys last night & as much as I miss them I really did not want to come home. I pulled up in the driveway and cried so hard because I am here without Megan. I cried on her bed in her room for the longest time while holding her little dress that she wore in my hand to smell her. Looking at her pictures in her room is too hard. I am so afraid and dont know how I would survive without her. I cant even explain how deeply my love and attachment for her goes. Her MRI showed decreased white matter in the brain and there is a space between her brain and the actual skull. The neuro says it is most likely atrophy/wasting which would be consistent with her disease and IF it is she PROBABLY only has weeks or months at this point. But nobody can tell me it definitely is or anything for certain. How do I know who she is yet when she still has a tube down her throat keeping her flat on her back and has gotten three infections in a row and is still on methadone wean and steroid weans. I am not ready for Megan to leave me and go to heaven. It probably sounds selfish of me, but I dont know that she is ready to leave or if she is just still so wacked out from meds and sickness. A normal child would need a long recovery and she takes longer than a normal child. I know this. My gut and my heart say to keep her here and see what she can do. If it truly is nearing the end for her then surely there will be nothing for her to gain, but I would always question what if??? Maybe I am being selfish but I cant help it. It hurts so much to think about not having her. I am in such a bad place with what has happened in a month. Werent we supposed to get the tube out in a day or two and then come home in a week? What happened to that? They also did an EEG overnight on Thursday until Friday morning. Thursday she was running 102-103 fevers and at 2:30 am she actually chewed a hole through her tube and had to get sedated so they could extubate and reintubate a new tube. The neurologist said that she saw "decreased activity" from the EEG a few weeks ago in the cortical region. I am not a dr., but isnt the point of sedatives to alter your mind? And activity level? Would that not affect the EEG. She says no, but I have had another neuro tell me yes. Also we have known for over a year Megans brain is not normal and she has less white matter to it. I was not expecting a normal MRI by any means but to hear that she MIGHT be having disease progression. How do I even look at the option of letting her go with the words, if, maybe, probably. Pat wants her to come home breathing on her own. That is impossible. The choices are to not bring her home at all (not really a choice for me right now) or get the trach and work on getting her weaned down from that. They are all not permanent. The doctors think it might be her brain not talking to her body to breathe - that the thermostat is breaking. Or she is too weak to breathe deeply enough - she has been laying down since about the middle of January now mostly and definitely for over a month now. She got pneumonia that caused respiratory failure - where did the brain thing pop in? Her breathing was fine until the pneumonia. I am so confused. Anyone who may read this who has any knowledge or experience in this area, please fill me in!!!!
Megan did smile and cry yesterday - both signs of a person being in there to me. Could have done w/out the crying, but I will take it - it is an emotion that she was feeling. I hate feeling so sad and helpless. Sad for Megan, sad for the boys, sad for Pat, sad for the grandparents and sad, sad, sad for me too. My heart really does hurt. When I cry I feel like hyperventilating and vomiting at the same time. A pastor told me that parents know when it is time to let go, they just know. Well I dont think it is time, because I dont know. I wish Megan understood how I felt about her. I know she used to, but I am doubting it now and it makes me cry to think about that too. I am her mommy!!!! It is so abnormal to question whether she knows who I am????? Have to get that tube out and get her out of that bed. Need to talk to Pat and get on the same page. He is sad, sad, sad too.

Still here

2009-03-09T19:36:00.002-04:00

Today is Monday and we have started another week. Every day has brought new medical trials for Megan. If it is not her heart and blood pressure is is her metabolic acids, potassium or ph levels. On Saturday her glucose went out of control and on Sunday morning it was in the 700's. Yes - the 700's. Why? That was the mystery over the weekend. She has been pumped full of insulin to get it down and it might be due to one of the particular steroids she is on - she is on at least 4 I can think of . Apparently she was supposed to get weaned from it last week and it did not happen. The resident misunderstood the orders and actually increased it. Big mistake - apparently the attending physician made the order that the resident screwed up and there is no system to make sure this does not happen until something like this or worse happens. She is also on high blood pressure meds now and heart meds. She currently has 3 IV's and some have multiple ports attached to them to dose many meds at one time. These are in addition to the meds going through the GTube all day long. Her fevers are still way out of control and infectious disease took more cultures from the lungs and nose this morning that are getting sent somewhere accross the country to look for rarer virus' that they cant run here. So far we only have positive yeast in the lungs and positive C-Diff bacteria in the stool, but nothing to link directly to the high fevers. She looks really bad today. Her eyelids are swollen and her skin is so pasty.

I downloaded a bunch of baby songs and lullabies onto the MP3 player and brought her little headphones from home and have been playing music for her. We have to turn it up to the loudest volume for her, but she hears it and you can tell she likes it. Her eyes started to move and she was really relaxed. It is one thing she likes that we can do. We have her massager here too. I am going to give her a in the bed duck bath and massage her tonight. Every girl loves to be pampered - even with more wires and tubes than you know what to do with.

Going into her bedroom to get some things is the strangest feeling. I lost it yesterday morning in there. James said he hates the house with us gone and he just wants to hear Megan cry and make some noise. I know how he feels. I just want to take her home and go back to living our life even as up and down as it has been. This place really wears on you. I feel a little clostrophobic. I think Megan looks uncomforatble - even if she is not, lying in bed for weeks on end.

We have had lots of friends and families visit us. Margie, Allison and Bonnie and Rachelle have been on daytime rotations while Kerstin and Arlene are weekend and evening shifts. It has and is great support for me and has helped with time passing for sure. I know that it is really hard for some people to do hospitals in general and I understand that. They are not my favorite places either. I know that everyone is thinking of us in one way or another and if I needed something for any of us I could reach out and ask them. That is special to have that and I am grateful for it.

Dont think we are going to get to try anything this week as far as extubation. I hope and pray it happens, but we just have to wait and see.

Still in PICU

2009-03-03T13:19:00.007-05:00

It is March 3 now and Megan is still in the ICU and is STILL on the vent. We are now 12 days on this thing and it is really driving me crazy. Have had lots of time to think - ponder - whatever you want to call it. I have accepted that I can not make anything happen faster or the way I think or want it. Megan can come off when she is ready and that is it. Pat called Pastor Jerry and he and his wife Susan came up to the hospital to talk with us and to see Megan. It really gave Pat and I some much needed perspective. I realized that I had become petrified that god wanted to take Megan and had been begging when I prayed that he would leave her here with me to care for her and often wondered why He made her like this and if it was because a lesson was to be taught or punishment for something in our past??? It was often on my mind and was really upsetting to me. Hearing that God does not want to rip her from me and that this was not His plan for her was definitely an awakening for me. I was like ' that's right, God is good - he does not punish us and does not want us to be sick - any of us. It really put it back into perspective for me and made me feel good about those things. Strange how things can get out of perspective even though you know the right way to think.

All Childrens nurses are really great and I feel really comforatble here - even though my bed is a chair. A very hard ugly chair, but better than nothing. The doctor was just in and the pain medication is going to be weaned starting today and she will get methadone to help with it. The goal is to get her off sedation and strong enough to be extubated. Not tomorrow, maybe the next day.... as long as everything stays good.

Another hospital stay

2009-02-21T23:39:00.002-05:00

We are back in the hospital!!! After daily trips to the doctors for "pneumonia", rocepherin shots, oral antibiotics, breathing treaments and one trip to the ER earlier in the week. Thursday evening Meg's breathing became even more strained and I was really worried. I was going back and forth with myself about going to the ER and kept thinking that I was being hysterical and getting worked up and then next thinking no I am not, she is really doing worse. I felt crazy. Around 11 pm I gave her another breathing treatment and she was so stressed during it. About 45 minutes later we had greyish lips. Pat called 911 while I ran Meg into our bedroom and put an oxygen mask over her face and started running the oxygen concentrator. Her lips looked a little better pretty quickly but her hands and feet were also turning blue. EMT's came and her oxygen level was in the 50's!!! That is really critical. Anything under 90 is not good. She was rushed into nearest ER (not a ped ER) and they started doing their thing. They contacted All Childrens and gave them her stats - her carbon dioxide level was at 85 - also really bad. Normal is around 35-40. It was probably one of the worst nights of my life so far. Megan was intubated and put on a vent. It has been her saving grace that she has not had any respiratory issues. I felt like the world was closing in on and I was not sure that I could handle it. I felt like all the strength I have been able to muster all along was just gone and like I just wanted to scream at the top of my voice and run away. Obviously this was not an option so here we are. This morning Megans IV became blocked and her pain meds went in to the tissue in her arm instead of the vein. Aside from looking like Popeye in one arm and it hurting her, she had not been receiving anything to keep her calm. So this morning when she had tears streaming down her face and was looking at me, all the while her arms strapped down so she does not accidentally extubate the tube down her throat, and there was not a sound that was able to come out - it quickly topped Thursday night for me. I am unable to hold her to comfort her. She is staring at me and crying and gagging on this tube and her wrists are tied down at her sides and Mommy is not picking her up and holding her. Before she could feel better the bad IV had to come out and a new vein had to be found for the new IV and pain meds to start. She is bruised everywhere from failed attempts andthere is one place left on her right foot to try which takes quite some time to get right. She is still crying silently. Needless to say, right after the ordeal was over I left the room and went to the end of the hall and cried on the bench. My whole body felt like it was going to collapse from watching her like this. I dont understand any of this anymore. It is just cruel. I am amazed time and time again at how tough Megan is and what a fighter she is. A normal child would have thrown the towel in by now. God sure does make them out of different cloth altogether. And she is happy just to be loved and held - and manages to smile at us and tries to laugh and play. It also amazes me at how uncomplicated she is and how freely she loves even though she does not understand why Mommy does not rescue her from things like this and I have to stand and watch and tell her it is okay while I rub her head or hold her little bruised bloody hand. It hurts me so bad inside to think that she may be thinking that I neglect her when she is needing me. Today the boys came up. They came in and saw Megan and we pretty quickly went to the cafeteria and ate. No need to stand here and stare at her. I was so happy to see them. I miss them. I miss them even when I am home because I am so busy with everything with Megan. After lunch we went to the playroom and played air hockey, checkers, the piano, dominoes - you name it. Pat and I just hung out with them while Grandma hung out with Megan in the room. I am sure she wanted some time to spend with her granddaughter without having to put on a strong front if I were in the room so I don't get upset. Everybody needs time to cry and I know that being able to touch the person you are crying for can give me more relief sometimes. I am not sure any of this happened, but I am sure that Grandma was sad and that she did shed tears. Later in the day I know my mom did the same. I walked in on it.

I am hoping that tomorrow they might try to exubate the tube so she can get back to breathing on her own. We had to get the " sometimes kids like this go on a vent for support and then become dependent and can not come off.....and then you have to decide if this is the choice you want for your child - artificial breathing or "not". I dont want that, but I dont think I could make that call. I am selfish and I want her to stay with me forever, but I know in my heart that living on a vent is not what I would want for myself and that I dont think it would give her any better quality of life. Actually I think it would make the quality of her life worse. Worse???? I cant imagine. It is far from great now.

Dr here thinks that the underlying cause of the pneumonia is the disease and her muscle weakness affecting proper breathing and building secretions that got infected and too thick for her to clear. Praying we have a successful removal and recovery and can go home sometime next week. We have three more weeks until we are done with the ACTH at this point(which was the cause of the infection to the secretions by the way). I think the devil made ACTH!!! It is bad news.

Triathalon Benefit for Megan

2009-02-12T10:01:00.001-05:00

Hello everyone. This email is about a Triathalon(Lance Armstrong Live Strong) that the Girl Scout Troop #758 is involved with to do two things - earn their bronze award and donate proceeds to Megans Trust for her needs. They need everything from sponsors (dont have to be local), volunteers and participants. It is for ages 5-99 so it is a great event for a family also. If you know of anyone who you think might help in any of the three areas I mentioned above, please contact myself or Al Latina listed in the email below. His grandaughter is in the troop working on this event. PLEASE forward this on to anyone in your email contacts that you think could make a difference for both the girl scouts and for Megan. I have attached the flyers for more info and sponsor forms. I know most of you know Megans story, but for anyone who doesn't or for anyone you forward to who does not the web page is www.miracleformegan.com Thanks for all of your help and support.

Home from the hospital

2009-02-06T09:49:00.003-05:00

Okay - we are home from the hospital. Went in to the ER on Jan 22 because something was not right - good thing we went. Appears that Megans body could not keep up with the tapering of the ACTH at the recommended rate. Her body did not appear to be making its own adrenal hormone to replaced what we were taking away as it should have been and she was exhibiting heart, respiratory and blood pressure problems. Her heart rate was at 50 - blood pressure and pulse were low too. We also discovered a viral infection through infectious disease doctor that was treated with IV. The neurologists immediately did a CT scan on her looking for a stroke - thankfully it was negative. I am so glad I went with my instincts to take her in to All Childrens. Her normal neuro, the pharmacuetical company and other resources all were dismissive as to what I was explaining to them and acting like it was not heard of - that you could not have withdrawal from the ACTH. I was dead on. Of course you can if your body does not start to make its own - it is the same thing like if a person has the disease where your body does not make its own adrenal hormone. The team @ All Childrens listened to what I thought and confirmed it seemed that way also. Cardiology, infectious disease, nutrition and neurology were all over her. The neuro there started her on Clonopan - 1/2 tablet 2x day in combo with her Topomax and Keppra for better seizure control. We will see. She is definitely in less pain. It is amazing that she is not SCREAMING all day anymore and is not completely contracted and spastic anymore. Actually she is very floppy. I am thinking the Clonopan is having this effect. I wish she had some tone, but better not to be in pain. We were there 8 days and have been home almost a week. I feel like she is safe here at home again. I did not for a long time which was terrible. We have nursing visits 3 x's weekly to check her heart, blood pressure, vitals, etc. I now check her glucose every day and her blood pressure too. She is actually having blood pressure spikes now which is probably another ACTH reaction. I know that it was the only option and if in the position again I would have to do it. Anyway, she is recovering. Slowly. Hopefully after this is all over she will improve. I am just thankful she is still with us. I sat in the hospital and cried at the thought of coming home without her. It was unbearable.

Less seizures - less ACTH

2009-01-19T07:26:00.002-05:00

We are now at .05 of ACTH every morning and tomorrow we drop to .04 every day. Each week we can go down .01 - the countdown is on. 4 weeks until Megan is off this stuff. Last week the Dr. increased her topomax to 50 MG twice a day and I am recording about 4 seizures a day. Of course that is what I can see. By her facial movements and stuff I know there are lots of things going on in there that are some type of seizure activity. Right now she is sitting here and her eyes just rolled up in her head, but no other body involvement. On Friday night we almost went to the E.R. This steroid is killer. Her cheeks were both flush red and her lips were bright red. We physically could not touch her without her screaming - anywhere on her body. She had no fever, but was hot to the touch and looked like she wanted to explode. The Dr. said he had no idea about these symptoms and I could go to ER. Nurse on 24 care line said these were extreme/severe reactions as I was describing and I should contact her Dr, and you heard what he said. Pat was of course ready to do whatever I thought best but voiced the ER is a germ filled nightmare with people who use the ER as a primary care Dr for general sickness, it was 11:00 pm, a Friday night and waking Megan up after she finally past out from screaming to sit in an ER until the AM hours might be counterproductive in the end. I agreed that we do not need her sick and decided that we would wait it out until the morning unless things got worse. Saturday morning brought about better things. She was less puffy, not bright red and I could actually touch her, not a lot, but she was not screaming every time.

Pat was like, what was the Dr. thinking wanting to send us to sit in an ER - if anything if she needs testing for ACTH levels, metabolic functions, etc he should admit us in and let Megan & us avoid all that additional stress and drama. That is what they would end up doing in the ER anyway after the 3 or 4 hour wait - they always do. It is a CYA thing. She has way too much going on. He is right - that is crazy. I am just glad that is subsided.

This drug has been out since 2007 and I am sure the side effects of weaning off are not recorded with all effects. What I am seeing is that Fridays are the third day after we are decreasing dosage, which is 1/2 way through. I think it is almost like a withdrawal. The past 2 Fridays have been the worst days. I am going to send this in to ACTHAR.com and see if they have heard this and maybe it can go on their web as a side effect when weaning off. I googled it, but nothing specific came up.

Lowering the dose has allowed me to see TINY glimpses of Megan coming back - a little smile here or there or just a look of contentment for a few minutes. I am hopeful that we will see improvements as we come off of this. She was in such a bad state before we started and it got worse and worse the longer she was on the ACTH - especially after the dose was increased, I was afraid of what we would or wouldn't see. Another thing I pointed out to the Dr. - the 6 week treatment at .05 wound of being 5 weeks of .05, 1 week at .07, 1 week at .06, and another week at .05 - so 6 weeks at .05, 1 @ .06 and 1 @ .07 - that is 8 weeks - longer than normal and severe reactions????? They just dont think about it like we do and they can't imagine how bad it is. I cant believe how horrible this ACTH has made her and life in general. Weighing the potential outcome vs. the side effects is not something you can imagine until your child has been on this. Not to say I would not try again if it was all that we had left to help her, but enough emphasis can not be placed on how drastic of a measure this drug is.

Going to go give Meg her meds - be free in about 45 minutes from that job!

Numbness

2009-01-11T00:07:00.003-05:00

We started to wean Megan off of the ACTH as it is not working anymore. It should take about 6 weeks to get her completely off as it has to be done slowly so her body starts making the hormone again on its own. Just lowering it a little bit (.01) has made her look less swollen and she is not getting red like a tomato anymore. I started to see that and thought hypertension? It is a side affect. We see the neurologist on Monday again. When we spoke last week I told him how my chest hurt and there has to be something else. He was silent and said the ACTH was the pull all the stops out treatment. I left it at that until our appt so maybe he can reach for something for her. I think he was really beside himself with the news too - I could hear it in his voice. Today the boys were invited to a birthday party at a friends house and it was a paintball war - there are woods on their property and they have made it specifically for paintball. Pat plays too - all the dads and boys play. I was debating on taking Meg and decided not to. I felt like it would do me good to go and talk to some friends I never see and try to relax and have a good time. It was the wierdest feeling to be there. I felt like I really had nothing to talk to anyone about and I was so distracted and I COULD not enjoy it. I got dropped off before it was over and felt better back here with Megan doing what I do.I can leave and go out but I cant run away from my own thoughts - I am crying out of frustration and hopelessness which is something I dont want to have. I wonder what is going on inside of Megans head. Are there words that she wants to get out but cant? Does she imagine things like other kids or is it just quiet inside her head. Last night I had a dream that she was repeating words after me - like cat and mom for the first time. It seemed so real and we were both so happy in my dream. Of course when I woke up I remembered that it was not real. I have been scanning the web for cures again - looked up vagus nerve implants, but you have to be 12 - why not 2 if it will save her brain from more damage? Medicine and science sucks more times than it is good it seems to me. It is 2009 and the same things from 25 years ago are still wrecking our children. Wrecking my baby. She is so pretty and so loving - to look at her lying there you would never know anything was wrong, but it is - unfixably wrong

More Seizures

2009-01-04T08:30:00.002-05:00

Okay - I am scared to death. We increased the dosage of the ACTH as of last Tuesday, had one day with no seizures and they are climbing. Yesterday (Saturday) I have 10 seizured recorded for yesterday and some of them were bad. Her body did the jerk and froze, her muscles got stiff as usual but then her hands and feet got all twisted and stuck and her eyes were flickering up and down during the seizure and when it was over she was crying like they hurt. Why is this happening? What is next - what if there is nothing to stop them. I feel sooooooo helpless and I have this heavy feeling in my chest about this. The crying Meg is doing is intolerable. Nothing makes her happy or comforatble. We were supposed to get to church this morning with the boys but we are too tired to make that happen. Next week....

Doctor Visit Update

2008-12-29T22:54:00.002-05:00

Today Megan has had three sets of seizures. We were scheduled to see Dr. J today at 2 pm already. I asked him why this is happening and he said that he has no answer, this is how these seizures are. He wants to increase the dose of the ACTH starting tomorrow and see in one week what happens. He sees such improvement in her cognitive awareness that he does not want to let these seizures win. I can see that it has become different for him treating her since he has seen that she is inside there. That is the hardest thing to get accross to the doctors I think because they dont see what we see. How can they in their short visit. Meg is also never the same at a doctors office than she is at home. The chance they will get a look at a good moment is rare. I think he sees promise in her now. I know that cant change the incurable, but it can help with lots of other approaches. Everyone is asleep here and I should be too but the tension knots in my shoulders are so painful and keeping me awake.

I am also really debating how to go forward with future therapy. How much is too much? Am I trying to make her body do things it cant to reach the dreams that we envision for her? If she could tell me I am sure I would know these answers. I dont want to overdo it or underdo it. I have to find the balance here. Running all over the place all the time has not done very much to help her it seems since the seizures can undo it so quick. I will pray for guidance from up above to lead us in the right direction.

Have been thinking about this exerciser I saw at the World Disabilities Conference called the Quadrisizer (sp??) - it could do a lot at home and eliminate all of the running around and appointments and allow us to be in charge of each day again. I so miss that! The price tag is not cheap though. My friend Kristi in TN who has an 8 year old Mito daughter, Mayci is going to see it tomorrow I think since the company is about 4 hours from her in TN. The developer is a great guy. He built it for a family member initially. Kristi and I went to the conference together and I dragged her to the expo booth and told her I want one of these for Megan. She was impressed too. We met in Wisconsin over the summer and were instant friends. Aside from Megan and Mayci we seem to have a lot in common even though we are from different worlds - girl from Long Island originally and a girl from rural Tennessee. Who would think, right? Mayci also has had mycolonic seizures and is on several meds and is doing well right now. The HBOT has almost completely done away with the seizures for Mayci. She really benefited from it, but has had about 90 treaments in the heavy duty chamber. Write more later - going to try to sleep while Megan does.

Spare time??

2008-12-27T17:57:00.002-05:00

I am sitting here venting Meg right now so I thought I would make use of this "spare time" to update the blog with where we have been & why we have kinda dropped off the face of the earth. In late October when we were in NY for the wedding Meg got sick and also had a series of seizures. It always takes Meg so long to recover from being sick so we saw the neuro for a follow up on Nov. 17. I told him about the seizures and how I noticed that she is no longer focusing and her eyes look like a typewriter return constantly. I also was seeing her choking a lot right before our appt and feeding was increasingly difficult and I was even having to shut her feeding pump off because she was gagging from that too. Dr. J told me they sounded like myclonic seizures (in lieu of her normal complex/partial seizures) and he scheduled us for long term EEG the following Monday. We were able to capture sooooo many seizures in 24 hours. News was that they were what he thought and that the brain pattern did not have any regular pattern to it. Basically he said it was bad and these are the hardest types of seizures to control and she needed to start ACTH injections ASAP and we would have to wait and see how she responds to it. The drug was ordered on Tuesday before Thanksgiving and delivered the day after Thanksgiving. A 30 day supply is $73,000.00. Wow! We went back to Dr. J and stayed under his care from Monday through Thursday the 4th of Dec. 1st shot was given on Monday and I was petrified she would have a very bad reaction to it. Some of the side affects are really horrific, but there were not options. These seizures were taking her down so fast. She lost every thing she acquired since the prior June and it was really scary to see the neurological decline happen so quickly. I noticed in the 1st 24 hours that her seizures were happening less frequently. After the second dose I saw them happening a little less frequently. Megan also got an appetite on her to rival any man and ate like I have NEVER seen her eat before. She swallowed fine and digested pretty well and I did not have to vent her as much either. Really strange to see that. I can only guess that her brain knew what to tell her body to do without interference???? Her appetitie is still pretty good and she looks so healthy - she actually looks like she has a little pudge to her. She also has not been sick now in 7 weeks which is a record for her - longest she has ever gone without getting sick, even though the ACTH suppresses the immune system and increases your risk for infections. I have to contribute that to all of the supplements we have started. We were allowed to go home on Thursday because I was able to give her the injections okay (the needle is kind of long and the ACTH is gel and very thick going in) and she seemed to be doing better than expected. Dr. J was surprised himself. Her irritability was and is at an all time high though. The major problem with the treatement. She also became stiff all over. High tone kicked in even in areas she has not had before. She has always been more mixed tone but has become spastic and stiff everywhere. So now we are also on Baclofen for spasticity. I think Megan is on like 8 medicines 2 x a day now. That does not include her vitamins and minerals and supplements - the mito cocktail as it is known. It is crazy. Dont know how her body takes it. But I guess it would be worse without it. Week 5 starts on Monday which means I will only have to jab Meg for 14 more days. I hate giving her shots. I just HATE shots in general. Once we stop we dont know what to expect since noone can tell us. Everyone is different but hopefully it will squash the myclonic seizures/infantile spasms. From what I have read and heard any other type of seizure is better than these. Of course it will not "cure" her seizures. I get asked that a lot. It is just a treatment, not a cure. She will remain on seizure meds but which ones I dont know yet.

I am thankful to God that Megan is doing better. I was really afraid she would not respond to this and then what? Her body could not sustain the way it was and I was not ready to go there. My eyes hurt from crying thinking about it. Ryan and I prayed the morning we went in to start treatment and Ryan asked God to please make this medicine work for Megan so she can come home. I prayed the same thing! James is old enough to read the information and was afraid her heart would fail on the ACTH. I could see the relief on his face when she was doing okay. Pat just seemed quiet and sad - depressed.

Time to feed chubby ubby - she is howling at me! Hope you all had a great Christmas and have a wonderful New Year.

Christmas Day

2008-12-25T22:09:00.003-05:00

It has been quite a while since I have been on here. We have had some seizure complications and have not had much time to update. The good news is Meg started ACTH by daily injection on December 1st to control the mycolonic seizures and is responding well.

It is Christmas Day and it has been a great one. Very calm and relaxing. Aunt Gwen, Uncle Mike, Amber and Erin are here from Atlanta to spend it with us. It has been fun to have them here. Meg loves to hang with cousing Amber too and it has been helpful to me. One of the side effects of the ACTH is "sleep disturbance". For here it means from about 1 am to 5 am. Amber got up with her Tuesday night and let me go back to bed. It was nice. Wish she could stay here but at 18 she has places to go!!!!

Meg is Laughing

2008-11-14T20:10:00.004-05:00

Wednesday night Megan pulled another all nighter. She was raring to go. I felt like death on Thursday but not Meg. I have never seen her so strong - and full of herself. She actually had some head control and was trying really hard to use her forearm to push herself up. Of course I helped her and she was soooooo happy and you could see the sense of accomplishment in her little face. It was great, but I cant go 24/7!!! I was crying last week and blubbered out - I just want to see her laugh!!! Well I got my wish - God was listening. It was awesome. James and Ryan were pretty amazed too. We filmed it so Daddy could see it when he got home. Grandma Judy came over and we showed her and she cried watching it. Nobody has ever seen her laugh. I can see that something is clicking - the HBOT definitely helps her, no matter what any Dr. says it makes her body work better. Also going gluten/casein/soy free has helped with her GI pain - the first 2 weeks was rough. It was like a torture process, but that is what the Dr. told me it would be like. He compared it too a drug addict going through detox and getting rid of the poison. And it was. He said that the gluten/casein was like an opiate on her brain. Honestly I was thinking I will try it - why not, but I can see more clarity in her cognitive awareness. She is also going to the bathroom every morning - even with all the rice flour, rice cereal, rice everything which I was sure was going to make her not go. I had been mainly relying on babylax enemas every 3-4 days since about July. Nice to see she is doing this herself. You take it for granted that doing that is just going to happen. Not for little ones like Meggie. I feel more positive again that she is better and have a renewed sense of hope and faith. I was really bummed out and was questioning why God was not pulling me through and helping me stay strong for Meg and how unfair it is that she suffers and cries so much AND NEVER, EVER LAUGHS. To see that renewed it all for me. Such a little thing for most, but I cant express how happy it made me. James asked to see the video this morning. He said Mom, just one more time before I go to school. He is so sweet. To be 13 and have such a big compassionate heart. Ryan has also been sick this week. Hard to take care of Meg and have Ryan home sick. He is only 6 and wants Mommy bad when he is sick and Meg requires constant one on one. I also wanted to keep his germs as far away from Meg as possible. She can not get sick. She is gaining a little weight back and cant afford to get sick again. So how do you take care of a sick little boy and a complicated little girl and everything else? Very patiently - that is how.

Family Good Times

2008-11-08T11:42:00.003-05:00

A Calendar Model!!!!

2008-11-06T19:07:00.007-05:00

I had so much fun with Megan having her pose for this calendar that will be out for 2009 to raise money for a new special needs/adaptive playground. Each month the Dream Calendar will picture a different child with some sort of special need or needs. I think Megan was the only child that could not sit up and could not "pose", but I cant help it - I am partial - I think she looks the best!!!!! I never thought that Megan would be able to do anything like this , but this calendar is right up our ally!!!! I wish she was aware of it - every little girl wants to wear a beautiful TuTu and MODEL!! She is going to be featured in July - which is why she is in a red tutu.

Rough Patches

2008-11-06T13:29:00.002-05:00

Cant remember what I wrote last - we went to NY for the wedding. It was beautiful. I wish we could have enjoyed it more. Meg woke up sick the morning of the wedding. 30 days on the dot- I could set the calendar by it. Same thing again only this time Zithromax did not work which means she had to go back to the Rocefferin shots. Also teething and got one new tooth. Any weight she gained is gone. GI doctor weighed and measured her Monday and she was 19.3 lbs and holding at 30 and 1/4 inch. The monthly illness undoes any progress she makes. Physically and nuerologically. We switched her over to Neocate too - it is so gross. But she is digesting it it looks like. When we vent her it is no longer like a bubbling volcano of undigested Peptamen. Just a lot of stuck gas now - not so much liquid which means it is making it past the stomach. Feeding issues are a daily battle. I think she associates food with pain now. She cries in pain with her GI issues - so hard too. It is so sad. I would not want to eat either.

I have had a lot of sleepless nights in the past 2 weeks. We actually did an entire all nighter this past Monday. I cant believe how old I feel. I was literally sick on Tuesday from no sleep. The whole room was spinning and I was nauscious. Feeling really sad these past two weeks and crying a lot. I keep hoping for a good day - a normal day and they never come. Sometimes you hit the wall and I hit it hard this time. There really is not anyone to talk to except for Pat because no one else REALLY understands - even as hard as they try to. I feel cut off from the rest of the world and dont know how to get back to it. There is no time to figure it out either. Most of the time I feel like I have got it and I have what it takes, but on days like today I am lost. Have to stay strong though. James and Ryan need me too and besides- Pat is out of town on business - no one to pick up the slack tonight.James has to be at King High tonight to volunteer for an event and I have to take him and pick him up. Little things like this take planning around here!

Have to start the food battle with Meg now so we can keep feeding her orally. If for nothing else to keep her mouth muscles working so we dont end up having to suction her. If it were not for the gtube feeds she would be an air plant by now!!!

Megan's Birthday

2008-10-29T10:39:00.001-04:00

This is Megans second birthday. She had a pretty good day actually. So much better than her first birthday. A lot has happened over the past 2 years. Lots of ups and downs, but I could not imagine our life without Megan. I am overwhelmed with love for our little girl - we all are. She is not lacking in the love department. Happy Birthday Meggie!!!! Lets make a deal to make every birthday a better one???

Fire Island

2008-10-29T10:32:00.008-04:00

Uh - Daddy was not supposed to put this picture of me sleeping with Ryan and Megan.......I guess he really likes this one so we will let it stay.

Too sleepy

2008-10-21T21:29:00.002-04:00

Megan has been excessively sleepy the past couple of days. Automatically I am worried because I am reading into it. She also is having watery stools that could clear a stadium - another sign of sickness looming. I hate it!!! We are leaving tomorrow to go to Uncle Jimmy's wedding in New York and I am praying that I am just being nervous. I have been packing tonight and it is unbelievable how many things I have to take for Megan. A whole pharmacy with supplies, hearing aid supplies, feeding pump, peptamin cans.....Dafos, shoes to use with them because it is cold up there - shoes to use without them.....

Packing for James and Ryan took 10 minutes each comparred to a couple of hours in Megans room. I am really exhausted and have not eaten yet today - hardly had anything to drink either. I need to try to take better care of my eating but it seems like something always gets in the way. James asthma has flared with the polyn and I could not find the heavy duty inhaler - I put it somewhere safe and boy is it safe. Had to go to the doctor for him today to get a new one but that was after we were at All Childrens for 2 hours in the audiology dept for the results of Megs latest ABR done a couple of weeks ago and to have her hearing aids reprogramed, cleaned - a tune up I guess. We also are introducing sign. I think I asked Meg in sign if she wanted to eat Mommy instead of if she wants to eat. My brain is trying hard to hold onto the signs we are starting with but sometimes I cant even call the right childs name out so this should be interesting. Poor Megan is going to say very inappropriate things someday hopefully.

New York should be beautiful - leaves changing, cool weather. We are taking the kids to a real pumpkin patch. None of them have ever been but it was always one of my favorite things to do as a kid growing up. Long Island really is pretty. Sometimes I wish we were there for the seasons and also because the climate would be better for Megan. The heat just kills her. We have to stay in so much over the summer that it gets depressing to me. Also makes the summer so much fun for me with all of the kids home!!!!!!!!!!!!!!!!!!!!!!!!!!

I am going to put Meg, James and Ryan on top of the biggest pumpkin and take their picture. I will post it when we get home.

Oh! The girl scout troop emailed me today and want to name/dedicate their spring triathalon to Megan - last year it focused on girls getting strong. How fitting!!! They said they have been following Megan for a while and the troop wants to do this. I was really touched. I of course agreed and volunteered us to go to one of their meetings so they can meet her. Pat thought it was really special too. Kids are certainly amazing.

My friends children are so compassionate towards Megan. Anna, Niko and Sabrina just love her and oogle over her. Corbin and Connor are always kissing her and coaching her on to move her legs and make all kinds of noises at them. They enjoy her. Tyler and Maggie never pass by Megan without stopping to talk to her or rub her legs or something. All of her crying does not bother them either - they dont get annoyed, they want to help her!!!! Ryan told me after her birthday he wishes he had the disease so he could take all of her hurt. I told him that I didn't because I love each of them the way they are.

Have to go now - going to eat something. Maybe everything.

Birthday Bash!!!!

2008-10-19T22:27:00.002-04:00

Wow! Today was the Birthday Benefit for Megan. It was beautiful out and it all came together great. We were so lucky that it was only about 80 degrees. I had been worrying that if it was 90 like it usually is that Meg would have to go home. She did great today and she looked so pretty. The turn out was more than I expected. Everyone there truly wants to help and the donations reflected that. All the kids had such a good time. The boys loved the dunk tank and football throw and the girls hovered around the face paining, tattoos and hair wraps. My sister and mom along with Leah and Alex (my nephew's girlfriends) worked their butts off all day long and I must say I was quite impressed with all of their work. Luptons Barbeque donated all the food - hamburgers, hot dogs, ribs, chicken, sausage - way more than they were supposed to. I think Pat and I both feel awestruck at the support there is for Megan and our family. James and Ryan had a great time too. James was off with his friends doing whatever 13 year old boys do and Ryan played so hard he looked like he was going to fall on the ground.

I think we helped to raise a lot of awareness about Mitochondrial Diseases. I know I did not know what they were until it was in my house. The United Mito Disease Foundation does not support HBOT but that does not mean I am not behind them 100% in their fight to raise awareness and to help find a cure. I think James wants to do something to earn some funds for the UMDF. It is good for him in more than one way obviously.

I wish I had more time to post updates but the schedule is so tough and there just needs to be more hours in every day. Or I need a housekeeper. I dont want anyone else taking care of Meg except for short periods, but getting the everyday stuff done here is killing me. I have thought long and hard about this and have decided that would work - not a cleaning person that comes every 2 weeks, but someone to come 2 hours every day just to make beds, dishes, a load of laundry, you know - the stuff that piles up if you dont do it!!! For my next birthday I will wish for that - LOL!!!

Yesterday Meg had her photo done for the Dream Calendar. www.thedreamcalendar.com is the site. It will feature a special needs child each month and all the proceeds are going to help build an adaptive playground here locally. It was exciting to do this with her. It is something you dream of doing with a little girl. I dont think she has a modeling career in her future though - she threw up on the red tutu in the first 5 minutes and refused to smile - however 5 minutes after we were done she broke out in a big one????

I am having some urine testing done that will be processed in France and detects all kind of things that our tests here cant pick up as well and depending on those results we might start altering her diet some - maybe the GFCF - dont know yet but I definitely know that her system is sensitive to everything and it can't hurt to try - once again - nothing to lose!!!! Mayci in TN has been doing it and her mom says it is unbelievable - she also has a mitochondrial myopathy and just turned 8 this month too.

Seeing Megan turn 2 and tasting birthday cake for the first time and enjoy it was the best gift in the world. Looking back at her 1st birthday I can see how much has changed. Being so engrossed it is easy to lose sight of that, but last year she looked like she was in a coma and this year she did not know it was her birthday but she got excited at the singing and had a little smile on. I will post pictures - I am so bad at actually downloading them.

Have to go now, so tired my eyes are crossing. Praying that everyone sleeps good tonight and I can get a full night in.........or something like that.

Updates on everything

2008-10-02T22:04:00.003-04:00

Cant believe Megan is going to be two in two weeks. We are all getting really excited about the birthday benefit that Renee Blain thought up. Pat and I know we live in a great community with good friends and caring people. We are very lucky and blessed. James wants to be in the dunk tank and Ryan just wants to have fun. I hope everyone has a good time. If anyone deserves a bash like this it is Megan. She is one tough cookie. We just wnet through a 3 week intensive therapy program that gave her three hours of intensive ot and pt with therapists that are NDT certified (neurological developmental training). Ariana, Trevor and Dayna at Innovative Therapies in Winter Park are awesome with her. Megan really worked hard - (she made sure she complained so we knew) - but she really connected with each one of them individually and I could see that she actually enjoyed a lot of it. She was communicating with them through her eyes and facial expressions and she had a sense of comfort that she developed so quickly with them. I am really eager to have her go back and learn some more. They set goals for her to meet over the course of the next year which we are going to work really hard to meet. One goal is for her to be sitting independently and initiating play with her hands on toys. It makes me excited to think about it. She is tolerating being on her belly more too which is such an important part of development that she was not able to get. The drive to Winter Park is about 1 1/2 hour with no traffic driving 70mph the whole way - about 100 miles from here. We went from Sunday nights through Friday nights and stayed at the Candlewood Suites. It would be impossible to travel in work traffic every day back and forth, especially since it would be dangerous for me to drive I-4 2x day with the very few hours of sleep Meg lets me get each night. Meg could not tolerate the travel time anyway. She freaks out and her stomach always hurts so bad with all of her GI issues which unfortunately do not seem to be improving at all. Some days I think it has actually gotten worse. I have been having a lot of feeding difficulties lately too - like she just does not want to eat - like food aversion - to everything. Really disheartening, but I have to keep trying to feed her orally. She needs those muscles in her mouth to work. Especially because I want her to be able to talk someday if she is able. If those muscles dont work, she definitely wont be able to. My experience here at home was so different from Wisconsin. I am so glad that I went to WI in June when I could. I missed Kristi, Shannon, Juanita and Dave a lot when I was away by myself. That experience was the best thing that could have happened for me. It was good for me inside and was a growing experience - maybe a healing one too. I felt like family to all of them and view them that way. If there is ever anything I could do for any of them I would do it in a heartbeat.

James and Ryan are doing good. James is going to be 13 and is making straight A's, playing football for the New Tampa Sharks and is on the Nat Jr. Honor Society. He has really become so grown up and self-sufficient since Megan was born. He really stepped up automatically - like he knew he had to. Ryan is 6 and it has been a little harder for him. James misses me, but Ryan reeeeaaaaalllllyyyyy misses me. I could not imagine being 6 and mommy being so caught up in all this other stuff and being gone so much. I was a mommy kid and it hurts me to know how I would have felt. I am glad he does not blame Megan for any of it. He loves her so much and is very positive that we are going to make her better. He did tell me that he does not want her to be 2 because he is afraid she might die when she is 2. That is so sad that he has to even deal with those kind of emotions at this age. I could only tell him that I did not think that would happen and we are working hard to make her feel better and be better and God knows we are doing all we can.

I look at her a lot and think about her future and what it will be. Will she walk? Sit? crawl? Will I ever hear what her voice sounds like? She does not laugh - she smiles, but never really laughs - I want to hear her laugh so badly - giggle and squeal. The hardest question is how long will we have her? And how will we have her - hopefully in a way that she is not in so much discomfort and distress. I want her with us no matter what of course and fear that something will happen. I dont think I could survive that. It would destroy me, all of us. I dont want to dwell on that and try not to.

This is how mine and Pat's journey is supposed to be and we both are good with it and know we are up for the job. The boys too - it is positively influencing them in ways they dont even know and making them strong compassionate people. They are going to be great Dads someday and their wives are going to be very lucky!!!!

Megans Story

2008-09-01T22:57:00.000-04:00

Megan was born October 17, 2006 after a healthy pregnancy and delivery. Pat and I were so excited to have a daughter. Her brothers, James & Ryan, were also hoping for a sister. The only complication we had was Meg failed the newborn hearing test which is quite common among newborns. Most pass on the next screen about 2 weeks later. Not Megan – at about 3 months old Meg was diagnosed with a sensioneural bi-lateral hearing impairment which is severe in one ear and moderately severe in the other. Right around this time we also noticed some odd facial expressions that concerned us. A neuro consult was scheduled that took place in March(first available appt.). This is when the rollercoaster started. By May she was having at least 8 siezures a day and her GERD was horrendous. It was so severe I was afraid to sleep (the little time that she did sleep at night) in case she choked to death on the clear mucous she was refluxing or had a seizure that might leave her dead. She was now about 7 months old, cried continuously. She had and still has failed to meet ANY developmental milestones confirming my early suspicions yet to be taken very seriously by medical professionals. Finally in June the siezures were captured on EEG (2nd hospital stay in 2 months & she was also diagnosed with a cortical visual impairment, likely as a result of seizure thought to be occurring by the hundreds each day. Now the Doctors were puzzled because she did not have any dysphormic features and had so many symptoms and so far the genetic testing had been normal. Several horrible diseases were presented to us and the unknown was so stressful along with managing every day life. Megan's body was there, but her mind was absent. Rigorous therapy was not helping either. In July a muscle biopsy was done as Mitochondrial Disease (www.umdf.org) was suspected. Getting the results was torture. I showed up for 3 appointments to review them, waited for a few hours in the waiting room with a screaming baby only to find out the doctors office had not secured the results from the lab yet even though they were in. In September I see another Doctor that we traveled for 3 hours to get to who when hearing the story calls the lab and instantly retrieves the results and tells us Megan has a Mitochondrial Disease and we should see an actual Mitochondrial Specialist. There are very few of these in the country. After scheduling with the team in California – twice – plane reservations and all, they cancel both times for scheduling conflicts. I decide that that does not feel good to me and we decide to go to NY to the specialist there. It is now December. Megan and I go to NY to get the exact mito disease diagnosed by the "mito" specialist & this Dr. was not so confident in the biopsy report & we then had more extensive genetics workup - all coming back normal in April. What a process!! Her MRI showed delayed myelination(white matter). MRS(brain study) revealed elevated lactic acid levels and abnormal metabolic ratios. Only lab that was off this time was increased lactic acid in her metabolic panel. Through this time she has been chronically sick, not responding to antibiotics for bacterial infections unless she is treated with Roceffrin by injection only. Cause of illness can not be found - every 3-4 weeks we go through this. She has intolerable back pain that hurts to move her with high fevers - not good for a child with siezures. She also has a GTube(feeding tube) that was placed in Feb. 08 for failure to thrive as she had not grown in almost a year.. She eats by mouth but is not advancing through this normally either. Her caloric intake by mouth is sufficient for her to be growing and thriving, but for some reason she is not. Now that she has the tube, we can see how long it takes her to digest food - hours.....not normal. I would be sick too. Her GERD has always been terrible and gets better with the tube in place and she also starts to grow with the supplemental nutrition we feed her through the bag and tube at night. She is still small for her age, but catching up. Her awareness also seems better to me, visually & mentally. Obviously her body has not been processing the calories she was getting properly and now that she is getting some extra (which would make most kids obese) and starting to come alive it is very apparent that her body is not metabolizing food properly. After she started receiving her medications through her gtube we noticed a decrease in her seizures.

In the end of May we return to New York for a follow up and to find out what is next. We are told Meg will probably never walk, talk or have the ability to even sit up. Her immune system is weak and susceptible to infection which can be serious. A common cold could be fatal to her if her system can not handle it, and her life span will depend on these facts along with the quality of her every day care. The future for Megan looks bleak with no quality – confinement to a wheelchair with no purposeful use of her limbs, almost deaf and very visually challenged and dependent upon GTube nutrition to thrive. As you can imagine we were devastated & still have not shared these facts with her brothers. We feel that there is nothing positive to gain by burdening them with this. They don’t need adult burdens so young.

A day after the news Pat and I discusss how God is the only one who really knows the outcome and we continue to believe God and Meg's angels(I know she has them!) will guide all of us through this. We love Megan so much & are truly blessed to have been chosen as a family for such a beautiful, special little girl. I have come to realize things most can't-like the importance of the little things in life that seemed to whiz by me before. The smallest improvement or accomplishment by Megan are huge for us and for her. Most people would not even notice them. I also dont take each day for granted anymore. Holding her is the best feeling in the world – different than I can explain - & I am grateful that I am able to have that feeling.

We are considering revisiting the muscle biopsy as there is so much controversy in the information and diagnosis we have received from quite a few specialists. Having another muscle biopsy will not result in a cure, just more information so we are being cautious, especially because anesthesia is not good when you have a neurological or metabolic condition.

I have had Mitochondrial Disease Diagnosis confirmed and disputed depending on what specialist you speak to. There is so little known about the mitochondria and it is just coming to the forefront now. There is not any public research funding or grants and it is all private due to the rarity of the disease. What we know about it now is it is not curable, it is progressive and degenerative. Other than symptomatically managing pain and symptoms, basically when a child has the issues Megan has your child is put into a box and is left there until the inevitable. Cytochomre C Oxidase Deficiency Complex IV is the official “name” that was on her muscle biopsy. It is an electron chain transport issue. Mitochondria are the power house of your metabolism converting your food to ATP that is used for about 90% of your energy.

In summary she has a rare genetic disease that is progressive and to date has no cure or medically recognized treatment other than to treat the symptoms It is a neuromuscular and metabolic causing siezures, global & chronic developmental delays, and bi-lateral hearing and vision impairments. The metabolic part affects her immune system and the GI tract requring a GTube for nutrition to thrive. She also suffers from muscle weakness and fatigues easily. The only part of her system not subject to failure as we know right now are the red blood cells.

In June Megan and I left home for a month to try a possible treatment which does not have FDA approval for treatment of her specific condition/symptoms, but it is approved to treat various other conditions. Hyperbaric Oxygen Therapy has yielded positive results in many children with what is referred to as brain injury commony. Along with the HBOT( Hyperbaric Oxygen Therapy) you combine an Intensive Physical Therapy program to train the body in conjunction with “waking up” the dormant areas of the brain.

It was pretty tough on our whole family – physically, mentally and financially as insurance covers none of this type of treatment. Each round is about $10,000 not including any travel expenses. My husband and 2 sons, James age 12 and Ryan age 6 stayed at home. Every day brings new and different challenges for us as we find a way to try to function normally through all of the ups, downs, doctor visits, pt visits, etc. Thankfully we are still happy and keep finding we have strength we never knew we had. Another thing Megan has taught us.

Last week we ordered and received a “portable” HBOT chamber so that we can maintain the gains Megan made with our trip to Wisconsin and hopefully see some more improvement. The portable chamber is not as effective as the “hard” chambers in the clinical setting due to the amount of pure oxygen and the pressure level being less in the portable chamber. It is most effective to utilize both components though because you can not continually use the hard chamber as you would develop oxygen toxicity and you won’t see the gains in the portable chamber alone.

Some people would think why try something that is not guaranteed to help. I think, why not? And what is guaranteed in life other than each morning when Megan wakes up, God gave her and us another day. There is nothing that the doctors can provide so we can only go up. We also could not live with ourselves if there was a possibility that this could help and we did not try it. I think most physicians and parents who debates the success of this would feel differently if they had a child in this situation. The closest family members have difficulty understanding as they can not relate to what really is going on.

Today as I write all this I am sitting in a surgery center. Megan is undergoing yet another procedure and tomorrow I will be at Tower Diagnostics because she needs a PET Scan of her brain to show the dormant areas. This will be the only way to track if Hyperbarics is helping other than observation.

I see that she is making some progress with this so we will keep going forward as long as it is working. As parents you know your children better than anyone and I know our little girl is stuck inside of a body that wants to get places and we will provide every opportunity to enable her to do that and maximize the quality of her life.

August 16,2008

2008-08-16T08:31:00.003-04:00

We got the home chamber set up 2 days ago and used it for the first time this morning at 5:30 am. We tried to use it yesterday, but realized we had a zipper problem that would not allow it to come up to pressure (4psi). Meg and I hung out in there for about 45 minutes and my ears did not start popping so I knew something must have been wrong - only could happen in our house!!!! Things like this are funny to me now where they would have gotten me crazy in the past. Today we are going to visit Freedom Park in South Tampa. It is a park that was designed to intergrate play area for special needs kids and "normal" kids so they can plan along side one another. This has been an issue for us as we can not take the kids to the park together since thre is nothing for Meg to do and it makes us sad. We are trying to get some equipment that everyone can use here in Temple Terrace so it is something that can be enjoyed by Megan and her siblings without being isolated to a therapy room.

A much needed family vacation

2008-07-28T01:59:00.000-04:00

We went on a family vacation on July 19th and got back home last night. James and Ryan could not have been happier to have Meg around jamming up their action.

The most noticeable difference I can see is Meg's vision. I also THINK she is hearing better - or she is processing what she was already hearing???? So hard to tell, but something is going on new in that department.

Her ability to stay awake is improved which is good because we can get more aggressive with PT and hopefully get her sitting up. I imagine a view of the world from your back is really boring - especially now that she has seen it from an upward view.

Pat and I are focusing on more HBOT. I also got a referral from my Uncle Charlie in Melbourne about Childrens Hospital of Philadelphia which is interesting because I met a surgeon from Philly coming home from Wisconsin and then today the pharmacist at Publix (Mike)(who handles A LOT of stuff for Megan) & I were talking and his nephew has a very rare genetic disease which is different than Megs, but has some very similar features is being handled there and I have his brothers phone number and doctors name to contact for the metabolic, GI and immune system issues. Something keeps pointing there for some medical follow up.

We are going to be world travelers soon. Thinking I should just learn how to fly a plane, or get a tour bus????

Thanks to everyone for your support. Some of you who know Wendy (my sister in law) generously donated money to a Bank of America account for Megan. Words cant express our appreciation to Wendy for taking the time and energy to arrange it in the middle of her chaos and to all of you who pitched in for the benefit of my little girl.

Thanks for sharing our hopes and dreams. This is the kind of stuff that renews our faith and turns these dreams into realities.

Love To All -

The Garrett Family

Terri, Pat, James, Ryan, and MEGAN

Article published in the Temple Terrace/University Beacon

2008-07-16T03:00:00.000-04:00

Temple Terrace infant Megan finds hope in new therapy

Doctor after doctor told Terri Garrett that her little girl had a severe hearing disability and that she might be blind. IfTerri had listened to the doctors and not pushed as she had, things might be different.

Her soon-to-be 21-month-old daughter, Megan, might not have fmally discovered her hands, put weight on her legs, or said "Hi!" to her 12-year-old brother who has never heard her speak
before.

The doctors didn't listen when Terri mentioned the seizure-like behavior little Megan was exhibiting. Megan didn't have the seizures in front of the doctors - they didn't have proof.

They told her she was hysterical. That she was overreacting.

"I swear you just get dismissed," Terri said.

She finally caught Megan's seizures on tape and took it to a neurologist - finally some hope. The doctor believed her. But the doctor didn't know what was causing it - or how to treat it.

Terri was told that her baby girl wouldn't live to see her second birthday. Megan turned 21 months on July 17th.

Terri was told she should just take little Megan home and make her comfortable.

Terri knew she couldn't do that. There had to be more.

Coming home from the upteenth doctor's visit, Terri retrieved the mail and ran across a magazine article about Shannon and Grace Kenitz.

"It was like reading my life,"Terri said of reading about 9-year-old Grace, who doctors said wouldn't celebrate her second birthday.

Grace is diagnosed with the same Mitochondrial disease that Megan has - Cytochrome C Oxidase Deficiency Complex IV..

Grace's mother also refused to listen to the doctors, who told her that she should take Grace home and make her comfortable.

Shannon,who lives in Wisconsin, found a treatment that seems to work wonders for Grace. It's the same treatment Terri is getting for Megan. It's called Hyperbaric Oxygen Therapy.
Essentially, it.'s a chamber in which the patient stays for a period of time - in some cases wearing a hood over the head - and is immersed in high-pressure 100 percent oxygen.

For those with Mitochondrial Disease, the increased oxygen seems to help stimulate the patient's mitochondria to produce the energy it is supposed to. "Mitochondria are responsible for creating more than 90 percent of the energy needed by the body to sustain life and support growth", according to the United Mitochondrial Disease Foundation. "When they fail, less and less energy is generated within the cell."

The Garretts talked it over and decided to give the controversial treatment a go despite its nearly $10,000 price tag. The Food and Drug Administration has not approved HBOT for the treatment of Mitochondrial Disease and many doctors dismiss it as a waste of money.

"What do I have left?"Terri remembers asking herself of the options for Megan.

Though the Garretts have health insurance, the policy does not cover the HBOT treatments; meaning the family must come up with approximately $10,000 each time Megan goes to Wisconsin.

Megan and Terri are currently in Wisconsin, finishing up their first round of 40 HBOT sessions. They are expected back to their Temple Terrace home this week.

OnJuly 4, Terri's husband and sons came to Wisconsin to visit them and to meet Shannon and Grace and another family from Tennessee dealing with the same illness.

That's when Megan startled her eldest brother by saying "Hi!"

She never spoke before the HBOT sessions. Megan also never noticed her hands before. Or looked at her mother before; "It's like the haze is gone,"Terri said, her voice cracking with emotion as she recounts the struggle her daughter has gone through.

Megan is now reaching for things with her hands. She's also discovered how tasty they are as she constantly slips them into her mouth.

"You cannot tell me it is not in conjunction with hyperbaric" Terri said of her daughter's progress. Megan has also been undergoing physical and occupational therapy to build up her muscles and coordination. She's able to stand up with assistance and put weight on her legs.

Along with the HBOT treatment, Megan has also had to have a feeding tube at night to fulfill her nutritional needs - since her cells produce only 5O percent of the energy they're supposed to.

"She's finally grown," Terri said. "She's gained some weight. She's coming alive.".

Before the treatments, Terri said her daughter was "a brain stuck inside a body that doesn't work." But now that she's undergone nearly 40 HBOT sessions, Megan is starting to come around and take notice of her surroundings.

Terri is planning on taking Megan back to the Wisconsin facility next month or early September for another round of sessions.

The treatment, the cost of travel, lodging, food and therapy will run the family in the neighborhood of $10,000 - again . . .

On top of that, the Garretts want to buy a home system for Megan that she can use in between major treatments inWisconsin. A home system is expected to cost approximately $20,000 after getting all the other periphery equipment needed.

"We're 'going to be living in a box,"Terri said, if the family doesn't find some way to offset the medical and travel expenses. She would like to hold a fundraiser; but hasn't had the time to think it through yet.

How you can help/where to learn more:

To offersuggestions or' financial support, e-mail Terri Garrett at terrigarrett7@gmail.com.

Go to Megan Garrett's Caring Bridge Web site to learn more about her condition, the treatment she's receiving and about her family. The site is located at http://www.caringbridge.org/visit/megangarrett.

You can also go to the United Mitochondrial Disease Foundation website at http://www.umdf.org.

Taken off the list for stem cell reinfusion

2008-07-13T02:06:00.000-04:00

I heard from Duke University and Meg has been taken off the list for stem cell reinfusion. They said that she is not a candidate with all of her medical problems. I was not too shocked to hear that. I kind of expected it after our trip to New York in May.

We will keep moving ahead on this path and see where it goes!

We made it home today.

2008-07-12T23:47:00.000-04:00

It is good to be here but I feel sad to have left Wisconsin also. It felt so good to finally be able to do something for Meg other than give her medicine for symptoms.

We are going to talk about a return trip for September and we are working on the home chamber - Thanks to all of the emails and good wishes.

The first set of hyperbaric treatments

2008-07-11T02:22:00.000-04:00

It has been a while since I have had time to update, but better late than never.

We got to Wisconsin on June 16th and started treatments on the 17th. The first thing I noticed is how Meg's vision got noticeably better and her eyes got very clear and bright. She seems to be tracking most of the time and I think she can see farther distances than before.

Her energy level is unbelievable. She is not tiring so easy and has so much more stamina to accomplish therapy. Also mentally she is much more present. Physically she has finally discovered she has hands - I am not sure she knows what they do yet, but she knows they are there and I am guessing she likes the way they taste.

She really is enjoying getting her hands in her mouth when she eats and then rubbing it into her hair......its all good - I have been praying to be able to be frustrated with little things like this. I can't wait for her to tell us NO! and then run away like a bad little girl - it is going to make me so happy.

I am seeing so many little things, but they all add up to so much. From what I have learned this is typical of the first 40 treatments, The next two sets of 40 should knock us off our feet. We come home on the 17th and I have to start to make arrangements for 40 more in conjunction with the intense physical therapy she is getting. That is going to be a challenge to have to leave the family again. I miss them and I know they miss us too.

It is hard but we have pulled together for Meg. James and Ryan could not get enough of her when they came out to see us over the 4th of July. James said she said Hi to him and he was right.

On Tuesday, July 8th Meg busted out a - "HI". It was crystal clear and everyone in the therapy room was silent - I think in shock for a moment - then it was pure excitement. She said it a couple of times today too. Everyone here is great.

I have came accross some genuine people here who know where I have been as they have been or are there now and are so supportive. It has been perfect for us.

Mayci is another little girl treating here now. She is 7 and has mitochondrial disease. Her muscle biopsy showed the same as Megs - Coenzyme C Oxidase Deficiency. Check out her website if you can @ www.westtennesseecares.com.

Shannon is Grace's Mom (the article I read that got me here) and she has the biggest heart. Grace is amazing and so funny. James and Ryan really enjoyed her and were happy to hope that Megan will be able to progress as Grace has and start having some fun for a change.

By the way, Meg is smiling a lot more - she thinks she is funny too! Her temper is still pretty fierce, but she comes by that honest..... must be from Daddy (we have to blame someone). I cant say thanks enough to everyone for all of your help and support.

Thanks especially for all your prayers - God heard us. I want to thank Him the most for everything he has given us and for enabling us to have a baby as sweet as Meg and giving us the abilities to care for her. It has broadened our life so much and changed it forever for our ENTIRE family and many of our friends.

Classic Meg and Ryan interaction

2008-07-01T17:47:00.000-04:00

Daddy's little girl...

2008-07-01T17:46:00.000-04:00

Meg at the beach - Spring Break 08

2008-07-01T17:45:00.000-04:00

Beauty takes pain

2008-07-01T17:43:00.000-04:00

Halloween fairy costume does not look so comfortable, but it sure does look good. Beauty takes pain.

Meg's 1st birthday-on Mommy's lap

2008-07-01T17:42:00.000-04:00