Find out how a rare breathing disorder has changed the life of my young son and my family.

Monday, December 11, 2006

Growth Hormone Shots, Medicaid, ARD Meeting, Wish List


I am now able to give Josh shots. In fact, I have given him three injections of growth hormones so far. He must have a hormone shot 6 nights a week. We have decided that Sunday evening will be his day off. Luckily, the shots have not been too bad for either of us - thank God.

The nurse said we could expect Josh to grow about an inch every three months. Some of the possible side-affects we have heard include headaches and joint pain from his sudden growth, but Josh has not complained of either so far. I have noticed that his heart rate has seemed to be racing some the last couple of days and even when he sleeps at night. And he has been extra sweatty. He even woke in the night last night because he felt hot and wanted his fan turned on.

Unfortunately, he has also experienced more frequent bed-wetting episodes. That is despite the doctor telling us to double the dose of the DDAVP nose spray that is supposed to help him maintain his fluids and keep from wetting the bed. We went to the doctor - the pulmonologist (lung doctor) last week and she always wants to keep an eye on his sodium level (among other things) so he had to have blood taken. And, sure enough, his sodium level was a bit high. So, we are having to keep after him to keep drinking, and drinking, and drinking!


We have sent in all the paperwork required for the Medicaid, and we've had the case manager and nurse visits. We heard from yet another nurse who needs to visit tomorrow afternoon. Then, we have to wait for approval to get into a particular nursing home room overnight - but there's a long waiting list of others waiting for that same room - so it might take as long as two months before Josh gets Medicaid. Then, once he gets Medicaid, we have to have his nursing company evaluate him for another program known as CCP - which should allow him the nursing hours he needs. THEN, maybe he'll be able to return to school.

ARD (Admission, Review & Dismissal) MEETING

We have another ARD meeting for Josh scheduled this Thursday at school. We already know the district will recommend Josh be moved from his current campus to another one whenever he can return to school. That is because it will be the only one staffed by an RN on campus. This has been a little unsettling for Josh to learn, because he has been looking forward to returning to the class of kids he left behind in September.

Josh is also still struggling - especially with reading anywhere near his grade level. It's not for a lack of his wanting to be able to read the words - but he has trouble with compound words and combination sounds. Some of it may be due to his hearing loss. Or it may have something to do with his illness - or both. But he does seem to do well with games like Sight Word Bingo - so I'm hoping to find more things like that to give him for Christmas. He loves playing those games with us and they teach him better than even some of his schoolwork does.


OK, If you've seen us at church or at a store or something, you know we've got Joshua's ventilator strapped to a little utility cart that is designed to go up and down steps. The problem is that it has these very small, rinky-dink wheels on it that like to slide back and forth on their little "axle" pole. I am really interested in finding someone who might be able to help us maybe to re-design the cart with better wheels and perhaps some kind of drawers or something to make it more efficient and easier to push around. Below are some pictures of Josh's cart.



Speaking of the utility cart, because Josh's bedroom is upstairs and we have his vent on a cart, it would be really nice if we could find a way to install a sort of platform to wheel the cart onto.. that would lift it up the stairs. Kind of like in this picture below (only it wouldn't be for a wheelchair):

I would also like to outfit our house with a few ramps so Josh can wheel his cart over the thresholds with ease. And I wouldn't mind pulling up the carpet - at least downstairs and putting down hardwood or linoleum. That would make it easier for Josh to get his cart around without getting stuck.

Anyway, I'll let you all know when we finally get to go in the nursing home so that we can get Medicaid, and I'll let you know of any other major break-throughs - like if we hear more about the Discovery Channel piece or something. Until then, we want to thank everyone who has remembered us in your prayers, sent greetings or donated to us in any way. These last several months have been pretty trying on us all - but with God, we are perservering and hopefully touching some lives out there with the Love of God.

Have a very merry Christmas everyone!!!


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