Thursday, April 17, 2008

April 17th, 2008

Several things to talk about this week.

Let's see... Kinnick got her second tooth today... and still chewing on everything. Poor little Carver has none :0(

Carver has really been fighting his feeds since he received his G-tube. I'm not sure why. I've been trying all sorts of things to get him to bottle. He doesn't even want to eat his baby food. We've tried giving him a 5 oz bottle each daytime feed. Anything he doesn't drink, we push via the G-tube. We're lucky if he takes 1-2 oz of the 5 oz feed. Anything we don't get in him, we run via the G-tube while he's sleeping. I even held his nighttime feeds so he would be really hungry in the morning and that didn't work. He still didn't want to bottle. Does anyone have any tricks up their sleeve? I'm not sure what to do at this point.

My OT brought a splint for Carver's right hand this week. This will help keep his hand open. He wants to hold it in a fist all of the time. Hopefully this will help him to do more with his right hand.

We seen our ENT late last week. He's still recommending cochlear (bi-lateral) implants for Carver. However, this can not be done until Carver reaches 20 lbs. Our guess is that he should be close to 20 lbs when he is 1 year adjusted - July 11th. They would only implant 1 ear at a time with 3 or 4 months between implants. I'm told that it is important to have these done prior to 2 years of age. The brain needs these in place for developmental reasons ASAP. He agreed to another ABR hearing test prior to implanting. For some reason, I think Carver is starting to respond to loud noises. this is something that we weren't seeing before. I'm not sure we'll see a significant difference in the test, but it's worth looking at before committing to a major surgery that is not revers able.

I was able to get another RSV shot for the kiddos. My Pre-Auth through my primary insurance expired 3/31. However, Medicaid says they'll pay if my primary insurance doesn't pay. So, we'll be getting our last shots for RSV tomorrow.

Our trip to Detroit has been completely approved. We will leave Tuesday, April 22nd via a med flight. I'm hoping it's a short trip - no surgery. I'm not sure how many more times we'll have to return to see the ROP specialists. Hopefully the visits will slow down.

I managed to get my graduating 8th grader enrolled in his new High School. Thank you Bishop Carroll for allowing me to do this late.

I completed the MRDD (mentally retarded or developmentally delayed) application. This will allow me to get medicaid cards for the babies based on their delays without using our family income. My understanding is that there is currently a 2-3 year waiting list to receive the medicaid card via this program. However, the plan is currently being looked at to increase funds enough to allow everyone on the waiting list to qualify without waiting. I'm not sure how long it will take to get this approved, but I'm told it won't be 2-3 years. I'm hoping more like a few months. So, it is possible that if we lose our medicaid cards based on technology or income, we could roll to the MRDD program and keep our cards. The bad thing is that the MRDD program does not provide nursing. It does however allow me to hire my own help and the plan will pay their salary. It's not a great salary (I'm told $8-$9/hr), but it would help some of my costs.

Stacy and David....I hope we get to see you while we're in Detroit. We'll be on the Ped's floor.


24weeker's Mama said...

Aloha Shanon, i am sorry i don't have the answer for your question. Do you mind if i pass it to the preemiechat group?

Have a safe trip to Detroit & we'll pray for no surgery.


Anonymous said...

Wow! There is so much going on for you! I really hope Carver starts taking his bottle. Sorry, I don't really know of any super tricks :-( I'm glad some things are getting approved, you are going to be so good at all of this stuff, you should write a book! We'll be praying that the ROP trip goes quickly and that there is no surgery! Keep us posted. They are getting to be such cutie pies! I just want to pick them up and give them kisses :-)

Stacy said...

hey shanon,
we hope to see you too. we have a lot going on these days with conner but i will definately do my best to get to you (even if it's late!).