Wednesday, May 13, 2009

An Update

I will warn you now this will be a long post but we have been pretty busy lately.
I think the best place to start is her therapeutic riding; she is doing very well and now rides a pony which is better for size. She does not fatigue as much now and can ride for longer periods holding her arms up, she still needs trunk support from 2 side walkers but she is doing well enough that she will soon learn to trot. As the weather is getting better she will be riding outside which is a nice change. Her favorite part of the morning at the barn is chasing the cats.
She is growing like a weed, she now weighs 33lbs and is 95cm. Growth is great but it is hard on her physically, she seems to grow overnight and it takes her 2-3 weeks to adjust to her height and she regresses with walking, for awhile she would not walk independently and cried if I let her hand go. Today was a good day she was more independent and she even stepped up a small step independently. Growth means new AFO's so she was casted today for a new pair, she requested ladybugs this time.
Her Developmental Paediatrician was happy with her and as Elizabeth looked at her and engaged with her the thoughts of Aspergers are now put aside (YEAH). As there is still no clear diagnosis she is referring us to see a Metabolic Doctor at Sick Kids, she is still concerned with Elizabeth's regression with growth and illness and wants a full work-up to rule out any other condition.
We saw a Genetics Doctor who was really nice and genuinely concerned. Ivan and I had a laugh as before we met her Ivan said if she asks if we are related I will pop her in the nose and of course the first question we got was 'Are you 2 related in any capacity?'. I know we both have big eyes but yuck, this question comes up with every new specialist. She has some thoughts and does not think CP. She wants to talk with her other specialists before she begins testing which was nice as she wants to avoid additional bloodwork.
Levo-Dopa medication was not for Elizabeth, she cried inconsolably even in her sleep , she was even more unbalanced, she was gaggy and began her night twitching again. We finally weaned her off it and she is much happier and less wobbly.
She had another 12 lead ECG and a 24 holter monitor and now she will be seeing a Cardiologist to review the results. I should know by now not to look at the monitor when they are doing this but I did and I got freaked out when I read the results (short PR, short QT, arrhythmia and anterior ischemia). This can mean that her heart is still irregular and getting worse or it could be that it is how it reads a child's ECG and she is fine and I panicked for no reason.
Elizabeth is becoming quite the Mommy's helper she wants to help me do everything (laundry, setting the table, cooking, cleaning) and has earned many stickers on her chore chart which she trades in for a toy. She is quite the riot and comes up with the funniest things; 'Momma where is Ivan is he coming home tonight?', 'Momma you smell like rotten eggs' (morning breath) and we are still are working on her not telling everyone with a bigger belly that they have a baby in it.
She is doing great with her CME exercises with Ivan, she happily puts her shoes on and off they go. We will be seeing Ramon at the end of the month and we will be working a new home program. It is going to be pretty crazy when Ramon is here as is he is at least an hour away but we have some weekend appointments and we have planned our work schedules around her sessions.
By mid June we will be ready for a vacation.


Anonymous said...

Really nice update! No burden to read about Elizabeth. Your experiences with diagnostic questions and medications are more common than is comforting. At the same time, there are parents and physicians who are quickly complacent with the first moniker placed on the child.

I watched the video - a couple of posts down.

Have your explored TheraTogs? There is a whole range of 'suit' designs for children with motor problems. TT are about midway from least to most complex. (I know you are looking for something else to do in your spare time. lol.)

My summer will be crazy, too, but I might not get a vacation until Aug!

Ellen Seidman said...

Hi there. We are actually about to leave for vacation, sitting here in hotel lobby, catching up on some of my favorite blogs before ship takes off.

I am so glad to hear that she is doing so well, I love reading the things she says to you. Max also did hipotherapy when he was little, and grew to love it--maybe we should try it again.

I hope the results of the tests are OK, and I really hope you guys are able to get a diagnosis. I can't imagine what that's like, we always knew Max was going to have cerebral palsy, and why. At least we knew.

Your story about "Are you two related?" made me smile.

Take care!