In honor of our country's independence, Noah decided July 4th was a good day not to vomit. There have been quite a few days lately where he hasn't vomited throughout the day, but bedtime Prevacid tends to bring up anything not digested yet. Yesterday he got his Prevacid as we were setting up for fireworks. A new strategy? I'm not sure evening fireworks is a practical bedtime routine, but whatever works!
Days in 2008 so far: 187
Vomit free days: 1
If he doesn't vomit from now until next year, almost half of 2008 will be vomit free! A girl can hope, right?
Saturday, July 5, 2008
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...
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.
Friday, May 30, 2008
My Deaf Weekend
Other than occasional times when Noah will notice an ASL conversation nearby or someone sees Noah's CI and approaches me, I don't pay particular attention to the hearing status of the people around me. This weekend was different.
On Friday Noah and I were at the mall when a man came up to us and shoved a paper in my hand. It said something like "I'm Deaf and I support myself by selling these ASL fingerspelling cards. Please give as much money as you can." I make it a rule not to hand out money to strangers unless I know what it'll be used for so I didn't buy his paper but it led to an interesting conversation. He eventually noticed that Noah responded to my signs close to Noah's face and not his 4-6 feet away. When he realized that Noah was deaf-blind he went away feeling sorry for him. I was struck that the seemingly intelligent and mentally stable adult supporting himself by begging for sales at the mall deserved more pity than my son. I don't know what Noah will accomplish, but it certainly won't be that.
Today we spent part of the afternoon at Noah's favorite place: King's Dominion (or as he calls it "Queen Dominion"). The difference today was that it was Deaf and Hard of Hearing Awareness Day. I was certainly aware of a lot of people that were using ASL, although I was disappointed that there weren't any other CI users (that I saw) or any information about oral language or CIs at the information tables set up. Maybe they should call it Deaf Cultural Awareness Day instead? I was afraid that Noah might be harassed by someone who is anti-CI (surely there was one person there somewhere!) but he was nice enough to cover himself from head to toe in vomit shortly after we arrived and overconfident mommy didn't bring an extra harness so he was CI free for most of our time. He switched easily to ASL, though (I assume because there were so many other people using it), so it didn't have a negative impact on his day. I had wanted to go to one of the interpreted show performances, but a rather nasty thunderstorm found us huddling in the build-a-bear store and we were about done for the day after that.
I'm intruiged by deaf adults. I try not to stare, but I'm sure sometimes I do - I want to take in as much as I can. We get a lot of stares too, and I don't mind. I know everyone's just jealous that I have the cutest sweetest 3 year old ever.
On Friday Noah and I were at the mall when a man came up to us and shoved a paper in my hand. It said something like "I'm Deaf and I support myself by selling these ASL fingerspelling cards. Please give as much money as you can." I make it a rule not to hand out money to strangers unless I know what it'll be used for so I didn't buy his paper but it led to an interesting conversation. He eventually noticed that Noah responded to my signs close to Noah's face and not his 4-6 feet away. When he realized that Noah was deaf-blind he went away feeling sorry for him. I was struck that the seemingly intelligent and mentally stable adult supporting himself by begging for sales at the mall deserved more pity than my son. I don't know what Noah will accomplish, but it certainly won't be that.
Today we spent part of the afternoon at Noah's favorite place: King's Dominion (or as he calls it "Queen Dominion"). The difference today was that it was Deaf and Hard of Hearing Awareness Day. I was certainly aware of a lot of people that were using ASL, although I was disappointed that there weren't any other CI users (that I saw) or any information about oral language or CIs at the information tables set up. Maybe they should call it Deaf Cultural Awareness Day instead? I was afraid that Noah might be harassed by someone who is anti-CI (surely there was one person there somewhere!) but he was nice enough to cover himself from head to toe in vomit shortly after we arrived and overconfident mommy didn't bring an extra harness so he was CI free for most of our time. He switched easily to ASL, though (I assume because there were so many other people using it), so it didn't have a negative impact on his day. I had wanted to go to one of the interpreted show performances, but a rather nasty thunderstorm found us huddling in the build-a-bear store and we were about done for the day after that.
I'm intruiged by deaf adults. I try not to stare, but I'm sure sometimes I do - I want to take in as much as I can. We get a lot of stares too, and I don't mind. I know everyone's just jealous that I have the cutest sweetest 3 year old ever.
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