As of now, we have completed our first week on the minocycline. It has been an interesting week because I've been paying close attention to anything abnormal with Ayden and of course our Michigan weather took this week to drop the temperature back down after being warm for a week. Between the temp change and the high pollen counts allergies have been out of control.
I've been logging observations each day to see if there happens to be any patterns of change with Ayden over the course of the week and am not surprised...
Saturday, March 31, 2012
Tuesday, March 27, 2012
The Hassles of Therapy
We have been attempting for almost a year now to get Ayden some occupational and speech therapy outside of the school setting. To say it hasn't been going well may be a mild understatement. Speech TherapyAfter looking all over our area for a speech therapist that took insurance, we finally found one at Sparrow Pediatric Rehabilitation. Then called and found the waiting list was six months. SIX MONTHS. We were lucky enough to get him in a bit early though, and last September had (yet another) speech evaluation...
Monday, March 26, 2012
Light It Up Blue
Fragile X is the most common known genetic cause of Autism. Approximately 15-33% of all children with FXS have Autism. (and around 2-6% of children with Autism are diagnosed with FXS as well).
One week from today (Monday, April 2) landmarks, homes, and businesses across the world will be turning their lights blue in support of World Autism Awareness Day. This is the third year Autism Speaks has run Light It Up Blue which was started to shine a light on Autism and help to raise awareness.
You can learn more...
Saturday, March 24, 2012
Minocycline - Day 0
So here we are...medication in hand! Tomorrow we start Ayden on minocycline. Getting the right form/dose of the medication is a bit of work, but I think once I'm used to it, it won't be so bad. We currently have him on gel capsules, but since they don't make them in a low enough dose we have to split them open into water and give him the doses that way. We're hoping to find a pharmacy that can fill a script for 50mg tablets even if we have to order them. I know Ayden will take that so much better...
Friday, March 23, 2012
Minocycline Update
I posted before about the minocycline trial running at the UC Davis Mind Institute and how we had been approved for the first leg of clinical trials. The timing ended up not working out with the baby, so the plan was to call after Emma was born to see where they were with the trial. When I fianlly made the call this past week, I found out that unfortunately the funding for the minocycline trial was not renewed. Thankfully, the staff at the FX Clinic at MIND is amazing, and they sent us information to give...
Monday, March 19, 2012
Language Update
We have been seeing some slight improvements in language for Ayden recently. I always hesitate to say anything or get excited about him saying new words because he often loses them after a short amount of time - but here it is anyhow! Of course each time I hope it will be different and the words will stick around, but I have yet to see that happen.
This time though..well, it feels different.
We worked a lot on getting Ayden to say "mama" since he was making the M sounds so well. Work like that is always...
Friday, March 16, 2012
Pretend Play
Pretend play is something that is a very large struggle for Ayden. Not because he can't do it, but he just doesn't want to. As I've mentioned before, we have a difficult time finding ways to motivate Ayden to do things and we have yet to find anything that will motivate him to "pretend". Until recently.
A few months back, Grandma brought a gift for the boys. A cute little rabbit puppet. Ayden was not impressed, but Issac fell in love instantly and claimed it for himself. He named the rabbit Frank....
Thursday, March 15, 2012
Meeting Baby Sister
As I mentioned in my earlier blog post, we welcomed our baby girl last month. In the time leading up to my due date, I had been slowly working with both of the boys trying to help them understand they would have a new baby around the house soon. I sat with both of them together as I don't get feedback from Ayden and was hoping Issac would help a little with that.
We first started by just talking about the baby in mom's tummy....
Wednesday, March 14, 2012
And Baby Girl Makes Three
We had the pleasure of welcoming our third (and final) baby last month. Things are finally settling down, and everyone is getting used to having a newborn around again. Baby sister is doing well, and both older brothers are very much in love. I have some wonderful stories about the boys and how they are handling having Sissy around, but for now enjoy some pictures.
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Saturday, March 3, 2012
One Year
It's been a year since we had our official diagnosis of Fragile X for Ayden and what a year it has been! I was just reading through my first post about how Ayden has been developing, and even though I knew he had made large strides it's amazing to see how I felt a year ago compared to how I feel now. I am not going to dwell much on sadness or feelings from that day a year ago - because we continue to look forward. Each day is a new day, each task is a struggle in a different way. Looking back does no...