Thursday, April 7, 2011

Baker's Appointment = Mommy's Nightmare

So yesterday was Baker's home-vent clinic in Birmingham. Usually, it is a pleasant experience, but yesterday just started off on the wrong foot. I knew Baker would be fussy since he was awake before 7 and I was right! We were supposed to be on the road by 8 but didn't get the van packed, Baker and ourselves ready, and gas for the van until after 9. THANKFULLY I planned for that! (We are NEVER on time for anything these days!! ) I learned that Baker doesn't like to ride in the van anymore. As soon as we put him in his carseat, he started fussing! We hooked up his movies and that didn't help.

Once we FINALLY pulled up at Children's Hospital, and started getting him out of the van and back into his chair, he was as happy as could be!!! We made it up the the sleep study wing (where his clinic is held) and he never once fussed or cried! He even showed out to the doctor! Singing, talking, and dancing! They were so impressed! Doctor said that she has seen so much improvement in him over the last 2 years! (Praise God!!) It is always nice when doctors, nurses, and therapist tell us that they have missed us cause Baker has been healthy! We sure don't want to visit them very often... much less spend the night with them!! HA!

He lost a little weight, so we up'ed his food per feed. They want him to gain weight, but due to his muscle weakness, he don't need to gain more weight than he can lift or move! We also talked alittle about getting him a motorized wheelchair for him to play around with outside, so that by the time he starts school, he will be able to maneuver it. I thought that was a great idea!! Spoke with our case worker and she is really trying to get us help with finances and stuff. Don't know if anyone is really aware of the struggles that Derek and I face due to our finances, but just so you will be more aware...
The only help that we get for Baker is SSI - a measly $250 bucks a month (doesn't even cover electricity for him) The only way that we get the SSI is if Derek and I work part time jobs and we still have to watch our hours. And in order for Baker to keep his medicaid, we have to draw something from SSI. Long story short, when I called the Medicaid office to ask if there was anything else that we could do, I was told that Baker would qualify for EVERYTHING that the state of Alabama has to offer if Derek and I would get a divorce. I quickly told the lady that divorce wasn't even an option. There was nothing that she could do for us... REALLY?? That was Medicaid's solution!!! So I have been struggling... with school cause I was at the point that I didn't know why I was even going. I wouldn't be able to work and keep Baker's benefits. And if I worked full time then Derek was gonna have to stay home... YEAH RIGHT... Derek can't even stay inside and watch tv. He has to be doing something productive! I just felt that we were being punished because we had a child with special needs, or we were gonna have to punish Baker cause we wanted to be productive citizens...

Ok... back to what I was say.... our social worker has found a loop hole for us, but unfortunately it takes a while for things to plan out. We have been on this list for over a year now and still waiting! (Please Pray that things will work out and we will qualify for this waiver SOON!!) It will allow us to keep Baker's insurance and not be held accountable for our finances... It is strickly based on Baker and his needs!!! HALLELUJAH!!!!

Well I guess I will start wrapping this up! We had a good trip, with the exception of Baker and his fussiness and the 2 hours to drive 30 miles!!!