The New York Trip .... part two!

Well, had a few days off that I hadn't planned on - have been ill and then decided to actually have a night to myself lol! ;-)

So .... left Dr Axelrod's office on Monday with plans to schedule another appointment once she had the medical information she needed from the team here (ie which tests etc still required to be done) and heading to Connecticut to see the OT, specialised in Sensory Integration.

Tuesday 27th October:

Melissa Chaikin Kahn (the OT) was also just as sweet in person as by e-mail, and has to be one of the loveliest people I've ever met! Alyssa was immediately impressed! :-) Melissa explained that the first part of the 3 hour evaluation had to be done without myself or my mum etc there, and that I should take Alyssa into the sensory room and try to leave her without a fuss. Normally, Alyssa doesn't really mind what's going on ... as long as I'm there ... but Melissa and her team took her through and she just went quite happily! (I did hear her calling out "mum" a few minutes later, but she wasn't concerned and was very easily distracted by them - so she was perfectly at ease). After the initial assessment part was over, we (mum, my niece Alychia and I) were all invited in for the second part. Alyssa was very pleased to see us, but looked like she'd been having a great time!

It was very obvious that she was already exhausted, but she's a very determined little girl and kept trying her hardest to keep going with all the different activities asked of her - despite finding a lot of them really difficult! There was one part where Melissa wanted Alyssa to sit on a swing that rotates 360 degrees and asked her to throw bean bags into a rubber ring lying on the floor - from a swinging position. Alyssa's proprioception and low muscle tone made this extremely difficult for her, and she fell off the swing countless times and hit the mat. With the level of energy Alyssa has to put in to use her throwing arm - in addition to the fact that she has very poor control of her lower body - meant that her entire body just followed her throw! Her lack of pain sensation then compounded this, so she didn't care when she hit the mat each time! She did manage to stay on the swing once told to hold on with one hand, while throwing with the other ... and she then managed successfully to throw the bean bag into the ring! But she still had to be told to wait until the swing had slowed before attempting to get off it. Her poor velocity-perception (no doubt also compounded by her Pain Insensitivity) meant she didn't even think to wait until it was slow enough to get off it, and tried to get off it when it was still going pretty fast ... and fell off! Lol! So there was a lot of learning curves for her ... very quickly!

It was really hard work for her, but she did enjoy it. Melissa and the other two girls (who were taking notes the entire time) were discussing what Alyssa's strenghts and weaknesses were, as she did the various exercises and things asked of her. Melissa is the only person to-date who has been able to account for Alyssa's sudden "pallor" episodes, and noted that she went very pale with white lips - something she has done repeatedly, which testing for various things has never given an explanation for - whenever she was required to do any "rotary" movement. So things such as rolling on the floor, spinning or even just any task that required her head to tip, made Alyssa turn pure white, start yawing and "shut down." There is clearly some type of vestibular component to these episodes, and I was very grateful to Melissa for having noticed these things.

To be fair; Alyssa did actually scare Melissa the first time it happened (and this is true of many situations where other people have been watching her, because it's happened so often), so this is probably why she paid so much attention to it. But still, it answers a lot of questions and explains why any physical activity exhausts Alyssa so easily! Any activity which requires her to physically pull her body over obstacles, or get up from a lying position causes her to use her head as a stability aid ... and this is obviously causing her more problems than I originally realised. I merely put the exhaustion down to her being so hypotonic, and that she just needed to use more energy than everyone else in order to achieve the same results. But it is that AND the vestibulary problem that are complicating things.

Melissa had to create a program for Alyssa and I to follow at home, based on that one 3-hour session (she normally does this after having a block of 6 sessions!) so there will be some fine-tuning but I have no doubt that it will help Alyssa! She showed me some of the exercises I have to do with Alyssa - built up gradually - and we could see a difference in Alyssa's posture after just a few! :-D

I also told Melissa about Dr Axelrods' concern regarding Alyssa's knees/hips and I spotted a knowing look between Melissa and the other girls ... so clearly they'd already been wondering if there was an orthopaedic issue going on unnoticed. They seemed relieved that it had already been spotted!

We had a long chat about Alyssa's biggest problems, and which areas she needed work in and agreed that I would go back before the end of my NY trip to organise some parent training, so she could go through the various exercises that would be expected of me, once home! I was very grateful to her (and the other girls!) for managing to fit everything they did into that one 3 hour session for Alyssa, and totally impressed by the whole thing! Alyssa was absolutely exhausted by the end and slept the entire way home, but she gets exhausted very easily anyway so ALL physical activity affects her in this way. But as soon as she came to, she wanted to go back and play with Melissa! :-)