February 1st, 2008

Kinnick's tummy continues to be an issue. We measure it before each feed and listen for bowel sounds. Her tummy seems to go back down to where it was prior to the last feed, but we're not hearing very good bowel sounds. She seems uncomfortable when she is feeding. The doctor ordered an enema and Miralax on Wednesday. The enama seemed to work. She had a huge plug that she couldn't get out. I'm not sure what the Miralax did. She cried a lot, so I think it was cramping her tummy. We'll continue to watch her. I think she may still have a plug in there - her tummy is just so big and it feels loopy.

I put Carver back on 1/4 lt oxygen. He was having the same strange de-sats even during the day with 1/4 lt. I suspect that he has had a little bug. He has been spitting up more then normal and has been fussy. He did better today, so I'll see what his sats do over the next couple of days.

Kinnick is still on 1/2 lt oxygen and is doing good.

My Kid Screen case manager applied for a TA Waiver for Kinnick. This will allow us to keep her Medicaid card for another year. We should know if she was approved within the next couple of weeks. Unfortunately, my case manager is unable to apply for the TA Waiver for Carver. The current waiver requires the child to be on at least 3 technologies if you are not poverty level. If you are poverty level, you only need 1 technology. Sounds like discrimination to me. Apparently, their has been a lot of talk about the discrimination and a team has been meeting to have the ACIL and TA Waiver combined. Once they are combined, the program will be based strictly on technology - not income. So, someone poverty level will not qualify any differently then someone that is not poverty level. Both will have to meet the technology requirements. There has been talk about allowing a child with continuous oxygen and an oximeter to be approved for the program. If this happens, carver will be eligible. However, the new guidelines will not go into effect until July. Carver loses his Medicaid card at the end of March. So, we will have a 2 month gap with no Medicaid coverage. We have private insurance for him, but it doesn't cover Home Health Care. Unfortunately, you can not take a child to a daycare center when they are on continuous oxygen and have an oximeter. Actually, I believe we have one facility in the city and there is a huge waiting list to get in. Even if we could get in, I wouldn't want to take him due to his cronic lung disease. He would be exposed to every other child in the facilities colds and etc. It's also difficult to find someone qualified to care for him at a reasonable rate in the home or that is willing to take on the responsability of making sure he is oxygenating properly and increasing oxygen if needed. I'm not sure I would want just anyone making that decision, anyway. So, it really doesn't leave the family much choice. One of the parents has to give their job up to stay home with him.

I met with a social worker from Rainbows today. She gave me information on another program MRDD. This program is not income based. It is for the Mentally Retarded and Developementally Delayed. Kinnick and Carver would qualify due to their Developemental Delays. This program will give us another case worker that should be able to help us get funding that we might need in the future for any special needs the babies may have. It can also get small amounts of money to help with in home care if needed. There is another piece of the program that we would not qualify for until the babies are 5 years old that could potentially get them approved for their Medicaid Cards. So, this may be our long term way of getting approved for a Medicaid card without being poverty level. For all of my Kansas Preemie mom readers. You might want to take down this number.... 660-7640. This is the number for the Sedgwick County Developemental Disability Organization. You can call them to apply for services. I'm told that you need to sign up by at least 3 years of age. There is a 2 year waiting period to get the service that gives you the Medicaid card when the child is 5 years old. You can apply early, so don't wait. If you wait till the child is 5 to apply, it could take till the child is 7 to get his/her Medicaid card.