Friday, December 18, 2009

December 18th, 2009

It seems like the appointments never end....

K&C both had EUA's to check the pressure in their eyes. Carver's is in normal range. He has scar tissue blocking nearly all of his pupil. This prevents light from getting into his eye - leaving him without much vision at all. He is scheduled to have this removed 1/5/2010 by a doctor here in town. Kinnick's eye pressure continues to be too high despite the added eye drops. She will require another specialized eye surgery that has to be done in MI. We're trying to get the MI eye appointments scheduled. It's always a bunch of work to get everything booked. Lots of insurance approvals and travel arrangements.

I can't remember if I posted about Kinnick's PH Probe study, or not. She had over 100 episodes of non-acid reflux incidents. They believe this is what's causing the lung infections. We're scheduled to see the GI doctor the first week of January.

K&C got their 2nd H1N1 shot today. Kinnick got her 2nd synagis shot on Monday. She's getting old enough to know what the alcohol smell means - I'm not talking about the vodka tonic that I need to assist with the shots - jj.

K&C have nasty colds. They seem to be tolerating them pretty good, but I'm a nervous wreck. I'm always afraid of the worst.

Carver continues to have a large seroma over his second CI. We tried a steroid and an antibiotic. The seroma went down in size, but quickly returned. The doctor said that we could go ahead and use the CI. We're going to just wait for the seroma to dissolve. He said it could take up to 6 months. They could aspirate the fluid, but just sticking it with a needle could introduce infection, and that wouldn't be a good thing. So, instead we'll play the waiting game. However, he has been doing very well with just one CI. We've been using some of Kat's ideas around prelinguistic communication type activities, and he's really catching on. It's very obvious that he knows what we're saying, and he knows when certain items are being presented to him. Kat will be back on 12/28/09 to help with some more activities.

I got Carver's approval for another year of medicaid. I sent in to have Kinnick's approved. This always stresses me out. We have private insurance, but the medicaid is a huge help. Our medical bills are still out of control.

Carver got his Pony gait trainer the other day. He's about an inch too short to use it. I'm going to have to be creative to figure out a way to make it work. I really want him walking in it. We also got Kinnick's wheelchair/stroller. It's a kidcart. I've actually been using it for Carver. We love it. It breaks down very easy. It has trunk support, head support, a seat belt, and a chest support/belt. It also tilts. He was finally able to go to an appointment without laying in his stroller. He was able to sit up and see the world around him. Carver is also getting a wheelchair. His isn't finished, yet. They custom make them. The kidcart is pretty generic, so it doesn't take long to get.


Tiffany said...

I'd love to see a pic of Carver in the Kid Cart. Can you post one?

shannnah said...

Hi :) Your little ones are adorable...I was wondering if the doctor in Michigan that you see for eyes is Dr Trese? He is the best I take my son to him...we have to do another surgury to remove vitrious fluid son was born full term with something similar to ROP but it is called PFVS he has limited vision as well as pressure in both eyes...his right eye is much better then his left which has very little sight left right now (which is why we have to get another surgury done on it :( good luck with your little ones is so hard but every little new thing they do is 100 times more rewarding cause you know how hard they work for it...hope Kinnick's procedure in Mich is successful :)

Sherri said...

I will be praying for you guys and the upcoming appts. I can only imagine how hard these are especially during RSV season :(