Sunday, June 29, 2008

News Flash

1. Twenty-four weekers don't "catch up".

2. Even if 24 weekers did "catch up", looking cute in a picture would not indicate one way or another whether that had occured.

3, Even if 24 weekers did "catch up", they would only catch up to the level of a child at their age with their same disabilities.

To set the record straight in case anyone is confused:

1. Noah is not a "normal" 3 year old.

2. He will never be "normal".

3. He's doing pretty darn good for a deaf-blind 24 week preemie who spent 7 months in the hospital, eats a pureed diet, spins in circles when overstimulated, and vomits regularly. We're ok with that.

5. Telling us that he's all caught up is not going to make us feel better about our life and it might make us really annoyed.

Now back to your regularly scheduled blog.

Monday, June 16, 2008

Just a little bit of bragging...

Noah's CI has been activated for just over a year now, so his AVT therapist has been doing all sorts of assessments to see how much progress he's made. One of the assessment had a list of auditory benchmarks that kids with CIs should have after 1, 2, 3, or 4 years of AV Therapy.
Noah doesn't do some of the 1st year things - he's never been interested in imitating sounds in isolation, and as our audiologist will tell you, he's become quite good at not making any visible response when he hears sound. Fortunately his language skills make it clear that he can actually hear the Ling 6, even if he won't repeat them or drop a block in a bucket. What surprised me was the things he was doing that aren't in the first year's expectations. He has met all of the year 2 and 3 goals and about half of the ones for year 4. Apparently retelling an entire story from memory is a 4th year goal - who knew!
I really am amazed and proud at how Noah has taken off with his CI. Noah's speech is not just age appropriate for his actual age, it's advanced. And he's only been hearing since March of last year! He is picking up language incidentally as well, if not better, than his hearing peers. Wow! In light of this new information, we're starting to phase out AV Therapy. We'll be switching from weekly to every other week starting in July. There's a lot of important language development that happens in the next few years and we don't want Noah to get behind but at this point he doesn't need teaching so much as monitoring. Way to go, Noah!

If only he would learn how to eat...

Saturday, June 14, 2008

Oh where is my baby?

This has been a busy weekend. Noah has a new baby cousin as of this morning, and yesterday he got his new glasses. As is only right, Noah celebrates with a song...

Tuesday, June 3, 2008

I did it!

We finally made our reservation for the deaf-blind conference this summer and I'm so excited. Check it out!
Oceanfront hotel in Virginia Beach... Rachel Coleman and Josh Swiller as keynotes... No vomit or feeding protocol for 3 days (thanks to Grandma's babysitting)... Sometimes theres an up-side to having a disabled child! Brian and I are very excited for some much needed time away. I'm also looking forward to meeting other parents of dual sensory impaired children. Not to mention cable TV, room service, and someone else to make the bed.