Wednesday, September 8, 2010

The New Normal

Well, we've started preschool!  Ben started at his new daycare facility yesterday, but his IEP didn't start until today (first day of school in our district).  We made a short visit to the preschool yesterday, just to suggest what his daily schedule is going to be like (the typical kids were there -- Jackson greeted him from afar with his usual enthusiastic "Benny boy!"), and then I took him to daycare, following the route that the "school bus" (minivan with multiple carseats) will take.  All went well, except that I forgot to tell the daycare providers that he still sleeps with a pacifier (I know, I know -- we're going to wean him off that soon -- terrible for oral motor development), and they didn't see the pacifier in his pack and figure that out until it was too late -- long story short, Ben didn't sleep a wink.  He was in fine spirits when I picked him up, but by the time we got out to the car the exhaustion kicked in, and he was a right terror for the rest of the afternoon and evening.

And this morning we went to preschool, just like a big kid, with our big kid backpack.  We made it there by 8:30 (just barely -- still working out some kinks in the morning routine), and Ben was again greeted enthusiastically by Jackson and the teachers.  Apparently he had a good morning there, despite the fire drill less than half an hour later (and I'm still fuming that they scheduled one on the very first day of school for all the special needs kids -- pretty insensitive; I will be sending a Concerned E-mail to the Appropriate Party).  Bus ride was fine (he reports that the bus driver is a woman, and he called her the Bus Captain), hand-off to daycare providers was fine, and (most importantly) he napped!  So all in all it was an excellent day.  I am sooooo happy and relieved.


deafdude said...

Everyone should first try stem cells before CI because CI prevents you from getting stem cells. Have you read the rest of my blog? I mention Connexin-26 and that even if I have this defective gene, I can still attain enough improvement where with HAs, ill hear similarly to CIs.

The culturally Deaf are against CI and cite their own reasons. Im not really against CI, but much prefer HAs as they are a noninvasive method of giving access to sounds and they leave your options to stem cells open. I was born deaf with 90db loss(slowly worsened to 115) and I attained the ability to speak clearly, understand some speech and read lips with analog HAs back then.

Your son has only 65-90db loss in his good ear(what was his bad ear at?), my hearing is 30db worse than that. I would stand to attain levels very close to CI with a 30db improvement in my hearing. Today's best HAs can achieve a 70db gain, so a 90db loss would be aided to 20db with HAs. I hope your son gets a big improvement with stem cells and/or genes in the future in his HA saved ear.

Melanie said...

Good for Ben! Can you believe how big our boys are getting!??! How did he do with the fire drill? I forgot about those...

Julia said...

Deafdude, thanks for getting back to me on that. My understanding was that stem cell therapy alone won't do anything for Cx26 deafness, because the real problem is lack of gap junction protein allowing the hair cells to stimulate the auditory nerve. Just replacing the hair cells isn't enough. So I think it will require both stem cell therapy and gene therapy to produce gap junction protein, and I've been told that human trials on this probably won't begin for at least a decade or more. Maybe I'm wrong about that. Also, with modern minimally invasive CI insertion techniques, there's a good chance that even an implanted ear can benefit -- perhaps not as much as an unimplanted one. Anyway, I'm so excited to see the stem cell therapy being implemented (at last!). Good luck with that, and I'll look forward to hearing how it goes.

Melanie, apparently he did fairly well with the fire drill, although we don't have any details. We tried to talk to him about it last evening, and he really clammed up -- obviously it had upset him a great deal, although it didn't ruin his day.

Joey @ Big Teeth and Clouds said...

Congratulations on your successful first day! It's such a relief to have everything go well, even with a fire drill. Seems rough for all to have it the first day. Try a normal day first.

Interesting comments too. I went to a research symposium on stem cells at AG Bell. It was mostly over my head, but the future seems very exciting.

deafdude said...

I replied to your comment in my blog and also invite you to check out my other posts. I still think stem cells can give a partial improvement for those with cx26 if their hearing is as bad as mine(115db loss) The fact your son has only 65-90db loss with cx26 means even if I have cx26 too, there still should be enough protein to allow me to improve to this point. For me, that's a good 30db better hearing than what I currently have.

Many people are still losing some or all their residual hearing even with today's CI. Id much rather have a possible 30db improvement in hearing, ill then be able to hear down to 20db with my HAs. This should give me better hearing than what a CI can offer anyway.

Ill accept whatever improvement I can get from stem cells. The worst that can happen is I lose $30,000 but at least I gave it a try and ill be giving genes a try next should stem cells not work well or at all. Thanks again for your time and check out my other posts in my blog, very interesting read!

Madeline said...

Yay for Benny!! Tell him I'm very proud of him and I think it's great that he likes school! :)

P.S. My roommate and I think it's hilarious and adorable that his friend calls him "Benny boy." It's like a British old man thing, haha.

leah said...

Yay for a good day at school! Boo to the fire drill on the first day- I still can't fathom what the school administration was thinking!

Don't feel bad about the pacifier. For a true confessions moment, Nolan still uses a spill-proof sippy cup and wore diapers to his first day of school (I put him in a pull-up today, and it was SOAKED when I picked him up). Ben's speech skills are amazing, so the pacifier can't be causing too much harm!

Elsie Hickey Wilson said...

Ah, yes, preschool happens! So fast they get to be experts on going to school! Little bumps along the way, but it is amazing how it all works out! So cute about Jackson and "Benny Boy!" They have been buddies for their whole lives!
Grammy Wilson is proud of big boy "Benny Boy!"....and of Jackson, too for being such a great friend!