Saturday, December 31, 2011
Saturday, November 26, 2011
Friday, October 28, 2011
Too much information at one time
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!!!!
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!!!!
Wednesday, October 19, 2011
Thursday, October 13, 2011
Another round
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.
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.
Sunday, October 9, 2011
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.
Saturday, October 8, 2011
Thursday, September 29, 2011
Longest cardiology appointment ever..........
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!
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!
Tuesday, September 27, 2011
New twist
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.
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.
Sunday, September 25, 2011
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.......
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.......
Monday, September 19, 2011
Almost 5
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.
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.
Monday, August 8, 2011
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.
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.
Tuesday, April 5, 2011
Is it April already?
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.
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.
Tuesday, February 8, 2011
More pictures
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.
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.
Wednesday, January 26, 2011
Special Child
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
Tuesday, January 25, 2011
A post from another mito mom that hit a nerve or two....
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
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
Wednesday, January 12, 2011
Surgery Success
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.
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.
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