Friday, November 14, 2008

Real update

Sorry is something doesn't make since LOL I don't feel like rereading it again.

Since Corbie's Nissen Fundoplication surgery there has been a few bumps in the road, his g-tube site got very irritated & one of the little incisions got infected, he was hurting pretty bad, now his tummy is totally healed & he's feeling great but he has started this weird snorting/gagging issues, I won't get into details but after some work I finally got the doctor to listen to me. He's now on Zytec, also less stool medication but that has nothing to do with the gagging. The Zytec is to help loosen up the secretions, so he can swallow them easier. The snorting is still there but the gagging is gone.

Corb has also been doing very well with his home therapies. We started brushing & joint compressions-SI (sensory integration), spinning, swinging, floor time & practice eating different foods again. It feels great to be back in a routine.

Monday 11-3, we had an appt with one of Corbie's doctors & we have decided to go ahead with the Baclofen Pump trial. The trial is scheduled for Dec 1st I'm VERY excited & a little nervous, the trial is around here but the doctor wants the actual pump placement to be be done in the Cities (3 hours away). On Monday 11-10, I decided to call the doctors office, I left a message stating that I wouldn't be able to make it to the cities ever, because on Wednesday 11-5, we went to Hudson (3 hours away) & the check engine light came on & was on just about the whole ride home so I won't be driving that far away anymore, well the doctor personally called me, we talked about why I couldn't make it down there & he said he wants whats best for Corbin & the doctors in the cities are whats best so he said I promise you, I will get a ride there & back. WOW!!!!!!!!!!!!!!!!!!!!! (the family & child social worker from the hospital in the cities already found us a ride when ever we need it)

The reason we went to Hudson on Wednesday was because a very special lady, we know was able to get Corbie a special fund & we choose to use the funds to go back down to Hudson for evaluations, home programming & then some therapy equipment, that would help with the home program the therapists come up with. I haven't ever posted about this yet because I wanted everything to play out first. So the evals are done, now we just wait to find out about the equipment.

Another thing going on is that at St. Luke's where Corbin goes to for therapy, as of yet he still only gets OT. PT & ST have been trying to get coverage from Medical Assistance for a year now, with no luck. I talked to the ST that would have Corb if it ever gets approved & he said he wasn't comfortable doing feeding therapy anyway so Corb had an eval with the other ST there & we will see if she can get him approved.

And I also have been in contact with an advocacy place in WI & we now have an attorney to help fight the screwed up system. I have also decided that if this other ST can't get things approved, we are going to have to go to another facility.

One thing I learned in Hudson that I think will be a big help is, if Corb does get the pump, there's something called “New episode of care” that should make him more inclined to receive, more intensive therapies so we will be shooting for PT, OT & ST each 2x a week right away (after he feels better after the surgery). I'm going to demand he get better services because he will need to relearn everything he knows now & MORE & I'm only one person.

Now for sleeping...
As I said in my earlier post Corbie did great last night & just about every night now he might fuss a little but he totally falls asleep on his own. (Besides last night) he was still waking at least once a night. I'm hopeful that this awesome behavior will continue!!!!!

Oh one more thing our new worker seems to be a nice girl & I'm hopeful that she will work out.

Caradie & Corbin

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