Almost 1!!!!

So we are almost one - we are still a whopping 16 pounds and 1/6 of an oz. but oh well. He did grow 3 inches since he was 9 months so the HgH is definitely working. Our appointments this past week at Nationwide Children's Hospital went well. The opthamologist said that his eyes are definitely getting stronger and that he held the right eye very well at the appt.

We are now moving on up to a Pen type thing for our HgH shots, which they say will be much easier. The Dr. upped the dose. We are supposed to work on getting him to gain weight, but not to do it with bad stuff, try to just give him healthy table foods, vegetables and fruits. We have to limit the juice and calories from liquids and focus on getting more proteins to build his little baby muscle. She said not to worry about still having the feeding tube, whatever it takes to keep him growing.

I MUST post new pictures. He is getting so adorable. Not that he wasn't always adorable, but its just that now he just has to look at me and he can get his way. Which is going to suck pretty much with all of the behavioral issues we are supposed to expect. :)

Help is out there

Its amazing what services are out there to help people with special needs children. I generally feel kind of bad like I'm taking a handout whenever my husband and I both are blessed with wonderful jobs and can pay for trips to the hospital. Anyways, a lady from the help desk of Nationwide Children's Hospital called me and asked if we'd like to have a donated hotel room for our visit next week. I was confused at first, because I hadn't asked them for "help" or a room, they just called me, set it up and sent us the reservation information. She said its just something that local hotels do for families of children visiting their hospital that have to drive farther than 3 hours. Crazy huh?

Well we also found out that we have been approved to have our meals paid for on this trip and our mileage through another program that our EI told us about. Its pretty crazy, but really is a blessing. Of course now we kind of feel bad for the restaurants we normally go to on our trips - its not like we want to have people paying for us to eat at P.F. Changs or anything. So we are going to behave and eat at much cheaper places. :)

A few more . . .

Some cute photos to share

These are courtesy of Donna McComas of Amp'd Photography and the Littlest Heroes Project.

CDCSP Approved

We found out that the other assistance program we applied for (CDCSP) actually accepted our application - so we have in essence a medical card for the next year! So that is great. Having two insurances has been wonderful, but this is going to be sooooo good. It sure takes the stress off. Well at least until next year. :)

Waiver Denied

We got our denial for the Waiver application we had filled out for Isaac. MR/DD Waiver would give him a medical card to pay for his medical expenses. Since growth hormone isn't free, we were really hoping to get it so we wouldn't have to worry about keeping 2 insurances all the time.

Apparently PWS "is not an approved waiver diagnosis."

Of course its not. It is in a bunch of other states, why would WV be one of those enlightened states?? This is one of those situations that the rarity of it all becomes very very frustrating. Just like we did in the beginning when the doctors were clueless around here as to what was wrong with Isaac, we wish we lived somewhere else today.

Oh well, I believe we'll get it eventually. We just have to work a little harder for it. Go figure. :)