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s as though he could eat or breath but not both they did a blood gas in emergency and slapped him on a ventilator and he s been on one since that was in october of 1989 he spent the next four months in icu undergoing multiple tests that pretty much showed he was normal i don t think there was any such thing as smard back then i don t think kids that had it generally lived long enough to get a diagnosis and of course they hadn t sequenced the human genome yet from our and their perspective it was an orphan disease i remember several times throughout the years mda would have nothing to do with us because we couldn t give them a diagnosis actually they never did give us any help at all it s hard to explain how frustrating that was having a child with such major muscle nerve problems that he couldn t move or even breath and because we didn t have a name for it we were literally on our own you can see i have issues with them i hope others have fared better at seven months of age christopher came home on a hospital ventilator because the portable vents in those days were not adequate for a kid that small ventilators have changed a lot since those days what he has now is half the size of a brief case but superior in nearly every way to that first vent we were on our own no one had ever done what we were doing that we or the children s hospital knew of if the internet existed we and just about everyone else had never heard of it we converted a smallish bedroom into a hospital room with extra wiring and a sink installed against the wall and so began our new lives i am a dentist and jan had a number of years earlier changed majors two and a half years into a four year nursing program because she couldn t stand nursing one of those little ironies we knew the basics about cross contamination i knew a good deal about anatomy physiology metabolics endocrinology and pharmacology in the area of metabolics and nutrition jan has far surpassed me she has been doing research for years this brings up a point jan is very willing to share anything she has learned but she is every bit as interested in learning what you all have learned as well nobody knows better than us how a bit of info can make a difference as i look back i think what helped a lot in addition to our faith is that christopher was small we could easily move him around i could hold him in my arms and put him in my lap he could still move a bit for a couple of years and i can in my mind still hear him say pa pa he has been unable to speak or move for years and now and he weighs 160lbs another aside jan and i differ over the issue of he can t move from the chin down if we suspend his arms he can get them to swing back and forth enough to activate switches but he is unable to do much else he can t turn his head or breathe independently at all what i find fascinating is if it is innervated spinally it doesn t work if it s innervated cranially he s ok he can smile smirk look around laugh etc but it s all facial and head muscles he can turn on and off the most beautiful smile like a light switch his slight arm movement seems to be the result of some accessory innervation of the shoulder girdle from his cranial nerves i guess on this point i m glass half empty and she s half full we have had christopher at home now for over twenty years he has only been back to the hospital twice since he came home the first time it was for a neurogenic bladder we discovered he was not voiding well enough and his blood pressure went nuts until we could figure it out he now gets cathed several times a day the second time was for his lungs that was a couple of years ago and we almost lost him he was in icu for a month but he pulled through 3 comments filed under uncategorized february 18 2011 4 08 am profiling smard jaime s story jaime was born full term on the 10 th october 2009 we had a difficult last few months of pregnancy as she was small i had steroid injections and regular monitoring she was born only 3lb 15oz which shocked everyone and spent 5 days in the neonatal unit before being discharged she was a strong and feisty little girl from day 1 she could lift her head from lying and cry for england when she was a month old she stopped feeding as well and after a couple days our gp advised us to take us into hospital in the morning the following morning we took her in and she had sats on 70 and was rushed straight to resus she was diagnosed with a chest infection and was put on cpap she responded well and a week later was on nasal prongs only needing a small amount of oxygen whilst feeding her she suddenly went into respiratory arrest the doctors resuscitated her and took her back to hdu and cpap she didn t respond very well and deteriorated until two nights later we were woken to say she had been bagged for 3 hours was in 100 oxygen and things weren t looking good thankfully she s a fighter and she stabilised enough for them to transfer her to leicester icu and was intubated she continued to improve in icu but despite several attempts of extubation many of them because she s a madam and pulled the tube out she wouldn t tolerate longer than a couple of hours jaime was quite a puzzle to the doctors and therapists as she was behaving and moving as any normal baby in fact she was proving quite a hit with the icu staff as they weren t used to being able to play and interact with their patients and when she looked like she was going to start smiling it just added more play time into the day the doctors ordered a string of tests and consultants to review her and two weeks later we were no closer to understanding it until an eeg showed nerve weakness in her hands and feet we were told the most common diagnosis was sma type 1 or charcot marie tooth although they said she wasn t presenting as they d expect for these conditions our research into the conditions put significant doubts in our minds but never the less we had a nerve wracking wait until the results came back one of our doctors was working with a child in nottingham with a strange variant of sma but was about one we think this could ve been maddison and smard as diagnosis was mentioned from the beginning after one month in icu we made the difficult decision to have jaime trached in hindsight it was absolutely the correct decision as despite her strength and fight jaime was starting to look tired and drawn from being on the ventilator for so long our difficult decision was lightened as the day after her trachy was done she smiled for the first time a few days after the operation she was transferred to the high dependency unit which was a very nervous time indeed we were very worried that she d gone from having a nurse at the end of her bed 24 7 to being in a side room we both stayed with her taking it in turns to watch her sleep and on the first night she stopped triggering the nippy she was on pressure support and her sats plummeted in a few seconds having been through it once before we new to pull the emergency buzzer and we were amazed at how quickly all the staff on ward 12 piled in and how quickly jaime turned pink again jaime was moved to pressure control and the doctors on the ward decided the best thing was to get jaime bigger she was now 10 weeks old and barely 5lbs and they knew that the best chance jaime had was to get some weight so she had reserves pushing her respiratory function was the bottom of their list especially after we had the all clear for sma type 1 and cmt with the future unclear but looking brighter we enjoyed our first christmas with jaime and she got thoroughly spoilt in total we stayed on ward 12 for a year and they were very successful at putting weight on jaime and at 3 months i could finally start buying her newborn clothing rather than prem unfortunately with weight and height gain came muscle weakness initially in her legs which she couldn t lift and then by 5 months she stopped lifting her arms and at 6 months after a severe chest infection she lost the ability to swallow and move from the neck down these were very difficult times and coincided with getting the confirmation of smard we did what every parent does and googled smard and came across daily dakin which was amazing we saw this amazing little boy who had an amazing quality of life and we were determined to give the same thing to jaime we got in contact with dakin s mum who put us in touch with madison s parents who were only an hour away from us in the uk we joined smaspace and after so many months in isolation with jaime s condition we loved being able hear about other peoples stories and experiences they offered us real hope that jaime could start to move again once she stopped growing she had a gastrostomy at 7 months and from the age of 10 months she started to regain some movement initially her arms moved in the bath when she was 14 months old we were finally discharged from hospital which meant leaving all her friends from ward 12 and trusting a new set of staff in the community coventry has never looked after a child with jaime s dependencies and so was a great challenge to them and despite a few initial hiccups 2 months later it s all going brilliantly and we enjoyed our first christmas at home with jaime and once again she got spoilt being at home was a huge step change for so long we had had a daily commute down the motorway to visit jaime for just a couple of hours each day her grandparents spending the day with her we have had to alter work hours and the way we live at home to make everything work which is a huge strain but we re getting used to it and we just need one smile from jaime to know that it s all worth it once we were at home jaime really started to flourish she started to talk over the vent although we re yet to get past ra ra and ba ba and she now cries for attention again after only a few weeks at home her physical strength is returning she s started to swallow cough burp and projectile vomit again so we re back trying to get her to eat although it s just a game to her at the moment her arms and shoulders are starting to get stronger and she can roll cars on her table and she can turn her head from side to side jaime s personality and strength is an inspiration to us all and everyone who has been involved in her care has been amazing the generosity people have shown towards us is un repayable and we re permanently indebted to everyone who saved our little girl and continues to make her one of the happiest kids i ve ever met in april all our lives change again when our family grows and jaime gets a little sister 2 comments filed under uncategorized january 26 2011 5 17 am hi all i apologize for the lack of posts dakin was sick over new year s and we have been reeling from that in addition to all the regular smard stuff so i am sorry and i promise i will do better which brings me to my points 1 i am hoping other smard parents will want to contribute to this blog if you are interested let me know and i can add you as an admin and you can post whenever you like 2 i thought it might be fun to share adaptive ideas with one another so if you have an idea that works for your little one write me up a post with some pics and i will post it i will be posting an example with dakin s marionette strings tomorrow 3 comments filed under uncategorized january 1 2011 6 29 am if you have read welcome to holland you will really appreciate this i was approached by dana through email a few months ago as she was trying to share this it is amazing check out her blog amsterdam international to fully get this post please read or re read welcome to holland before starting thanks in the special needs world there is a poem essay whatever called welcome to holland it is supposed to explain what it s like to have a child with special needs it s short and sweet it skips everything while welcome to holland has a place i used to hate it it skipped over all of the agony of having a child with special needs and went right to the happy ending the raw painful confusing entry into holland was just glossed over and considering the fact that this little poem is so often passed along to new moms of kids with special needs it seems unfair to just hand them a little story about getting new guidebooks and windmills and tulips if i had written welcome to holland i would have included the terrible entry time and it would sound like this amsterdam international parents of normal kids who are friends with parents of kids with special needs often say things like wow how do you do it i wouldn t be able to handle everything you guys are amazing well thank you very much but there s no special manual no magical positive attitude serum no guide to embodying strength and serenity people just do what they have to do you rise to the occasion and embrace your sense of humor or grow a new one you come to love your life and it s hard to imagine it a different way although when you try it may sting a little but things weren t always like this at first you ricocheted around the stages of grief and it was hard to see the sun through the clouds and forget the damn tulips or windmills in the beginning you re stuck in amsterdam international airport and no one ever talks about how much it sucks you briskly walk off of the plane into the airport thinking there must be a way to fix this please please don t make me have to stay here this isn t what i wanted please just take it back the airport is covered with signs in dutch that don t help and several well meaning airport professionals try to calm you into realizing that you are here oh and since they re shutting down the airport today you can never leave never never this is your new reality their tone and smiles are reassuring and for a moment you feel a little bit more calm but the pit in your stomach doesn t leave and a new wave of panic isn t far off although you don t know it yet this will become a pattern you will often come to a place of almost acceptance only to quickly re become devastated or infuriated about this goddamned unfair deviation to holland at first this will happen several times a day but it will taper to several times a week and then only occasionally a flash of realization your family and friends are waiting some in italy some back home all wanting to hear about your arrival in rome now what is there to say and how do you say it you settle on leaving an outgoing voicemail that says we ve arrived the flight was fine more news to come because really what else can you say you re not even sure what to tell yourself about holland let alone your loved ones although you don t know it yet this will become a pattern how can you talk to people about holland if they sweetly offer reassurances it s hard to find comfort in them they ve never been to holland after all and their attempts at sympathy while genuine you don t need their pity their pity says wow things must really suck for you and when you re just trying to hold your...