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Monday, December 29, 2008

Doctor Visit Update

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.

Saturday, December 27, 2008

Spare time??


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.

Thursday, December 25, 2008

Christmas Day




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!!!!

Friday, November 14, 2008

Meg is Laughing

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.
video

Thursday, November 6, 2008

A Calendar Model!!!!







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

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!!!

Wednesday, October 29, 2008

Megan's Birthday

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










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.

Tuesday, October 21, 2008

Too sleepy

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.

Sunday, October 19, 2008

Birthday Bash!!!!

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.

Thursday, October 2, 2008

Updates on everything

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!!!!


video

Monday, September 1, 2008

Megans Story

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.

Saturday, August 16, 2008

August 16,2008

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.

Monday, July 28, 2008

A much needed family vacation

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

Wednesday, July 16, 2008

Article published in the Temple Terrace/University Beacon

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.

Sunday, July 13, 2008

Taken off the list for stem cell reinfusion

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!

Saturday, July 12, 2008

We made it home today.

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.

Friday, July 11, 2008

The first set of hyperbaric treatments

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.

Tuesday, July 1, 2008

Classic Meg and Ryan interaction

Daddy's little girl...

Meg at the beach - Spring Break 08

Beauty takes pain


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

James amazed with his baby sister



James amazed with his baby sister the day she was born & he still looks at her this way. I love it.

Megs favorite spot. Mommy likes it too.

Standing up! Wow!

Therapy - bearing weight on her arms!!

Hyberbaric Oxygen Therapy - HBOT

Tuesday, June 10, 2008

Big Day Today

Big day today - lots of good stuff happening. Duke University has said that Meg is on the "possible" reinfusion list. We will have to wait and see. Also, Wisconsin Hyperbarics has set aside a grant for Meg to cover 50% of her first round of treatment but we have to decide by tomorrow if we can do it. I will be gone with Meg from June 23rd to July 18th.

Great treatment, but so hard not to be able to see the boys for so long. I hope they understand....