Isaiah 7.17 : Updates, etc.

So the little wiggle worm, AKA Isaiah, managed to shake off one of his casts this evening much to my dismay. We knew it was coming loose somewhat since the end of it had ended up down by his elbow and he just kept shaking it more and more. I was washing bottles in the kitchen and next thing you know Rachel is yelling so I come into the room only to see the little guy holding up his hand, pointing it at me almost as if to say, 'hey look what I found!' Me, being not so good with blood and wounds, even after 9months of this all, went into a little bit of shock before realizing we had yet to buy the saline and bandages we needed for his dressing changes since the casts aren't supposed to come off until a week from Wednesday. I made a late run to Walgreens and grabbed some contact solution and the other stuff I needed to get us through the night. I want to let you all know, we've been told its okay if the cast come off early, we just get to start the process of changin...

Sorry I haven't updated in a few days. The good news is we haven't been back to the ER, the bad news is when Rachel took him into see our pediatrician on Monday she discovered Isaiah had dual ear infections on top of his other maladies. For a couple of days there he was on 8 medications. We're down to 5 now including his nebulizer treatments. He's doing better but still has the occasional coughing spell and is vomiting once in awhile. In development news he fully flipped over on his own finally and didn't like it one bit. He hates his tummy time since his hands are so sensitive, but for the last month he's been hanging out on his side a bunch more so we knew it was only a matter of time before he would make it all the way over. He's a bit delayed in doing this compared to an average kid, but much of it has to do with his hands sensitivity and the pain/discomfort being reason enough not to try to do it on his own earlier. Speaking of his hands, we just ...

Well happy 5th day of the New Year to be exact. Things are going here. He's been really crabby the last couple weeks, probably from being paraded around so much and with all of the going to visit family and family to coming visit us we think he's been a bit overstimulated. We completely love that he got to spend so much time with family and I'm sure he'll be better in a few days now that things have died down some. Not much news in the way of hand surgery stuff. We're still sitting at the same place we were before but Rachel and her Dad have started to see what help some of his contacts can help us out with so there's a reasonable amount of hope. Rachel and I are both a little worried about waiting until April for his surgeries which is the soonest the Shriner's up in Phila. could get us in. For lack of a better term his pinky pads (the areas of skin where his pinky fingers would be) are very sensitive and we think it may be preventing him from crawlin...

Well good news and bad news regarding Isaiah's hands. We could possibly be having his first surgery as soon as 12/24, bad news is our specialist will no longer be with our insurance after the new year which poses a pretty big issue since our insurance currently has a 70/30 $20,000 deductible for our of network providers and that only covers the 'usual and customary' rate so anything Coventry deems above the UCR is our responsibility 100%. We're trying to see if Coventry will allow our speicialist to be considered in network for him due to the fact there aren't any other doctors locally that can handle this type of surgery, but that could take a few weeks. We do have a possibility of getting into the Shriner's Hospital in Philadelphia (their hand center) and the doctor that would be doing the surgery is the one that trained our specialist here so we know he is a good doctor. We're still early on and ultimately trying to keep it local if possible, but we ...

Thanks to the generosity of my work, I've got a laptop with me today. Mostly to check my emails since I've got a project just about complete that needs quick answers. Unfortunately I can't seem to reply on my work's exchange server so I'm taking a break to update everyone. First off we had to stop feeding him milk or formula at midnight last night so we kept him up as long as possible since he usually only sleeps 5 hrs straight after the first time we feed him and put him down to bed. Sure enough he woke up at 4:30 hungry and we were able to give him some pedialyte to hopefully tide him over, which suprisingly worked! We've been at the hospital since 7am this morning and anethesia took him away at 9am to prep for surgery. They started the actual craniotomy at about 10am and we're just waiting now to hear when he's done. He'll go to the recovery room after that and then stay here for the next few days. We were told yesterday he's not going to...