Summer’s annual check-up with her neurosurgeon went well. He was running an hour late – which seems like a really long time when the waiting with an active 3.5 year old. Summer amused herself by taking 45 pictures with my cell phone camera, mostly of her feet, the floor, etc…
She played shy during the appointment – would not let the Dr. near her, but he managed to get a look in one of her eyes, and had a feel of the back of her head where her shunt is. All age appropriate behaviour, as she only sees him once a year so there is no familiarity between them.
I have forgotten how sad I feel after this appointment. For all the good, there is a looming bad that we don’t think about every moment – what happens if her shunt blocks or malfunctions. We educate her teachers, warn of the signs etc. but what if… Part of our appointment is ‘the discussion’ – education – about signs and symptoms of what to look for. And then there are the ‘warning stories’. He tells us about people that wait too long, dismiss symptoms, and pay the ultimate price. It is a sobering reminder and it kicks you in the gut. I know we are so fortunate to have come this far without a malfunction and hang onto the hope that when it presents we are prepared.
Right before Neuro we went to WCH to have the 6 week follow up AHA (Assistive Hand Assessment). Summer was in good form, charming, polite and playful. The session is videotaped and the assessment is made on second viewing of the tape. It can be deceiving. When she had her first follow up, I thought she had done significantly better – but when I compared my video that I took, I could see only small improvements.
We also received the report from the first AHA performed 3 days after uncasting. She went from 43/88 to 47/88 – which doesn’t seem like a huge improvement but the assessment tool looks as consistencies of movement. I am pleased with the results. Even small improvements are amazing. It has been proven through an fMRI (functional MRI) scan that CIT can result in ‘neuro-recruitment’ – brain growth. Pathways in the brain that are practiced stick around – and the ones that are not used fall away – the use it or lose it scenario applies. The fact that she can overcome high tone in her hand to build some motor patterns is impressive.
Maureen also measured Summer’s legs. It is a crude measurement but it showed 1.5 cm difference, so we’ll schedule and X-ray to obtain a more accurate measure so that we can see the orthotist to have a sleight lift put on her shoe. She’ll also be getting new hardware in the next month or so – a new AFO. She has grown 2 inches since December – so it is time.
We had a good time with Barb and Laurie – bless them for having us time after time on our trips for Summer’s appointments. We celebrated Barb’s 60th Birthday on Saturday night with dinner out, and a couple game of cards after. Barb and I ruled the deck this weekend – I think we won all the games – except maybe one…
On Sunday, we met up with the Miller’s at the science centre for the afternoon. Summer had so much fun with Matthew, Eric and Emilie. I think her favourite part was the pretend market with all the pretend food and the pretend check-out. Gramma would be proud of her little shopper. It was a busy afternoon – though not that crowded – but completely over stimulating – for an adult. Unfortunately we ran low on batteries for the camera so there are not too many photos (sorry!) The Miller’s will come to our place for a weekend in July – Summer is super excited, and very excited that they will bring their dog Kiki.
No comments:
Post a Comment