Heath's Journey 6/5/09

mujul79's picture

Yesterday was Heath's 2nd EEG. It was a much more extensive test then the first EEG they tried to induce his spasms not just observe him and I should have the results by Wed. Parts of it he had to be awake for and parts of it asleep and some of it was him watching strobe lights. He had no big events but did do some odd moments after the light.

Once we got home he started having lots of spasms and has continued doing them many times in the last 24 hours. I question if the EEG started the increase. I have stopped counting as it has been to stressful on me to know the number and just holding him, when he is doing it. I know I need to diary it but it is just so stressful.

I just had to stop typing and tape him. He was doing well over 15 min of it while on my lap so the Dr.s will see him in a video not in the bouncy chair. They are so common but look so strange that Tessa is now starting to ask "why is he wiggling?" And now every time he starts if I am not in the room Peter or her yell to tell me "Heath is wiggling" I think this HELP has also caused me to know just how often he is doing it and it is much more frequent then I ever thought, as at time I was working and he was in the other room with the kids in the swing or jumper and they did not know what he was doing until we explained it to them today. After an episode of clustered events he sleeps a few hours but it seems not long after each time he wakes they start back up this has been going on since Sunday.

When on tape and not in the bouncy they look a little different. While the huge tossing the arm back and tucking the chin in stays the same, more body moments I was blaming on the bouncy contuse between. His eyes seem to vibrate, he gets spaced out, he won't make eye contact or respond to his name, at times his head bobs and lips smack, he is doing small but noticeable non stopping movements, they look like circles with his ankles and wrist. also out of the bouncy he does toss both hands up during an event or pull he legs up. All of this I have gotten in more then one video. I can't seem to pin point his triggers I kept thinking maybe it was the toddlers running around, the fan, to hot, tired, waking up, even after a feeding he has had a few or swing in the swing but non of then seem to have to much common other then the kids. Until the one I just taped and the kids have gone with Aunt Jenn and are not here to over stimulate him. Even the shopping cart one I was blaming on the noses in the store, but this last one he was laying on my lap on the boopy with non of the above triggers. Position is not a factor they have happened, laying on his back, on his tummy, sitting up and reclined I am trying to catch video of him doing it in all the positions. Through it all he just stairs and a few times he will try and make eye contact with me between a spasm during a cluster, but he always has this moment at the end that lets me know it is over or close to being over (they space out towards the end) as he gets this big grin on his face as if to say to me "Mom I am still here" and you can see that change happen as I tape.

The good news. He was 7 months yesterday and he is starting to respond to sitting if propped up for 3-4 sec before he falls and at times puts limited amounts of wight on his legs before he crumbles and he has MASTERED rolling from his belly to his back and is trying to roll back.

Do I have hopes and dreams for him sure. I want him to play t-ball some day and I want him to go to school move out and get married. But my right now goal is just to get a diagnoses so we can better help him. Right now I want him to lead a normal life and do all the things without sitting on the side line. I am looking for a infant life jacket that will support his head should he have a spasm in the pool this summer.

As far as his apnea is. He has not set it off in 2 months until last night he set it off 2 times. Praying he is outgrowing it, but have lots of questions if the lack oxygen with the apnea is causing the spasms or is it the spasms related to the apnea and all just symptoms of something bigger going on.


MissyJ's picture

Submitted by MissyJ on

You have done a really good job with capturing in words (and I'm sure video) all that Heath is going through. I know that it can be difficult for others observing to distinguish between normal body movement/facial expressions - but you have provided the details needed between what is normal for him and where he struggles. Certainly that was evident on the video. I know you have dreams for Heath in the long term.. and for now, focused on the present in getting him the help he needs. (((HUGS))) You remain in my thoughts and prayers. You are continuing to remain his best advocate! Thank you for sharing his journey with us. ~Missy