Thursday, September 17, 2009

September 17th, 2009

We still have a lot going on. I did want to show everyone the neat toys that Carver got from the Blind/Deaf funding. They fund educational toys, etc. for Blind/Deaf children. This organization will follow Carver through school and help fund things he needs to function in school. There are several other items on order. These are what we've received so far with the help of our vision teacher who works for Rainbows United...

These are his Jigglers. They vibrate. He loves chewing on them while they vibrate. He gets a real big kick out of them. The first few attempts to bite them brings a big smile to his face. I think they tickle him.

This is a flexible device that you can wrap around him and then he can use the switch (it lights up and vibrates when pushed) to activate the vibration himself.

This is another item that attaches to a switch. When he presses the switch, the bells go in a circle and ring (REALLY LOUD). He really likes the bells. The switches are great for learning cause and effect.

I can't wait for the other items to come in. These give Carver the ability to operate his toys by himself.

We're still working on getting funding for a Pony gait trainer for Carver. They run around $2,500. So, not something that you just cut a check for. The MRDD program has up to $2,500 per child available right now for items like this. So, we're hoping that Carver qualifies. We've also asked for several other items like a bath chair, swing, peanut ball, stair/slide/tunnel unit, and pedals for Kinnick's tricycle.

I'm still waiting on the Disability Determinations. We filled out paperwork today to continue nursing in our home. It looks like we'll continue to qualify. We have to do this every 6 months. This will also qualify us for the Medicaid Cards in December/January. We have to apply every year for the Medicaid Cards. Currently, we are qualifying based on disability - the nursing helps support the disability.

Carver is scheduled for his second Cochlear implant on September 30th. I can't wait to get his second ear. We've waited so long. I think it's going to make a big difference.

K&C are both scheduled for swallow studies October 19th. This will tell us how they manipulate their food and swallow it. It will also track the food as it goes down to the stomach. We're still concerned that Kinnick is getting food into the lungs due to her paralyzed vocal cord. Since the vocal cord doesn't move (out of the way), it can cause the food to go in the wrong direction. She's getting lung infections about every 8 weeks, so the thought is that it's probably due to reflux (fundo no longer working), or aspiration when eating.

Kinnick is scheduled for a PH probe, lung swab (to check for food getting into the lungs), and to have a look at the fundo on October 20th. This is a 24hr stay at the hospital, so I'm not looking forward to it. Again, this is an attempt to get to the bottom of the continued lung infections.

Carver is scheduled to have another sleep study done on October 27th. This is to see if the T&A removal cured his sleep apnea. So far, we haven't had any blue spells since he had them removed in July. He currently has a cold, so this will be a good test. The added swelling from the colds in the past would trigger blue spells.

Kinnick and Carver got their flu shots Tuesday. They will be getting the H1N1 shots when they come out next month.

We're still working on the plan for future therapy for Carver's hearing loss. We will meet a new Teacher of the Deaf next week. I'm hoping it goes well, but a little concerned that she's never worked with CI children and she's not an AVT. So, I'm not really sure what she's going to have to offer. I'm hoping for the best.

Older brother, Gregory is transitioning nicely into Public school (Sophomore year). I was pretty stressed over the transition. My kids have all gone to private Catholic Schools, so I was really worried about the change. So, far, Gregory is really liking the new school (and it's in our back yard) and his grades are now A/B - mostly A. So, I think we made the right choice.

That's most of what we're up to. I looked at my September calendar and we have appointments every day except 4 days in September. Several days, we had 2 appt in a day. I don't know why it's been so crazy lately. October isn't looking any better.


TMI Tara said...

Jigglers - that's what they're called! I have to tell you a story....

Chloe's therapist had an alligator jiggler, and Chloe loved it. So when we got home from therapy, I decided to try to find one online.

I googled 'vibrating alligator.

You DO NOT want to know the images that resulted from that google search! OYE!

Anonymous said...

Wow! You have a lot going on! We'll pray that all these appts and stuff help find some good answers and help the kiddos!
PS I love all the new toys! Those look like Carver will love them!

Anonymous said...

Very impressive post! I just gave the url for this post to another mother whose child has vision impairment. Thanks! Barbara