I know I've said this before, but I can't say enough times how lucky we are to have the team we do for Ayden. I look at where he was two years ago entering the ECSE program and am just so happy with how far he has come. It is bittersweet to have attended our final IEP with them today, our transition IEP. Next year, Ayden will be moving to a different school, different speech therapist, and different teacher. All kinds of changes for him as he enters kindergarten. While we don't know who his teacher is yet for either...
Thursday, May 24, 2012
We Have a Kindergartner!
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Wednesday, May 23, 2012
Therapy Wins
We had our bi-weekly physical therapy appointment for Emma yesterday. It's pretty awesome to hear at the end that she is doing fantastic. As of 3.5 months, she is still meeting or exceeding all of her developmental milestones. It's also a big relief.
Each appointment we've had has brought with it a new problem or issue to work on and we've just taken each thing in stride. But now she's rolling over (tummy to back), enjoying tummy time, smiling, cooing, and just all around doing amazing. Our PT...
Thursday, May 17, 2012
Clinical Trials
Yesterday, FRAXA hosted a webinar about some of the current clinical trials for Fragile X. The webinar covered the two main types of treatments that are in clinical trials right now - GABA-B agonists and mGluR5 antagonists. It also covered some pretty detailed information about the clinical trials for STX209, AFQ056, and RO4917523. What was involved, length, qualifications, etc. Overall very interesting and informative stuff.
I'm not going to go over the information covered in the webinar,...
Monday, May 14, 2012
Mother's Day Surprise
With the warm weather, comes family trips to the park. As part of Mother's Day this year, we decided to have a picnic at the park with the family. Normally our visits to the park are fairly short due to the fact that Ayden is just not a fan. The park includes just a lot of things he is not fond of - differing terrains, climbing, sliding, swinging - you know, park things. Over the past two years though, we have really...
Tuesday, May 8, 2012
Minocycline - 1 Month Update
Well, we're a bit past the one month mark - but I've been so busy I never posted an update!I really wish I could say this has been our little miracle for Ayden, but that just isn't the case so far. I do think it has helped him in the month he's been on it, but it hasn't been as effective as I've heard with other FX kids. The good things we're seeing still include him attempting to communicate more and better. He is still pushing limits when it comes to using PECS and finding new and creative ways to tell us...