Great News

Test Results Are In - We're Good! Andy had another head ultrasound today, and it came back "fabulous" as his neurosurgeon said. We're shunt free (for the time being). His head has grown 2 cm since he was born, but he's still in line w/ the 75% he was born at, so for now, we don't have to go back to see them for a month - awesome news!

Andy was also cleared of "limited back time". When we left the hospital, he could only be placed on his back for feedings & short car rides. I was going nuts having been stuck inside for the last three weeks, so I'm really excited to get both of the boys outside for a walk. We are now able to hold Andy in any position (not just his side or belly). Our only limitation is that he can't be submerged in the bath tub yet; we'll take it!

Overall, Andy is surprising everyone with how good the news is. We are definitely taking those good thoughts to heart and praying that they continue down that path. We are scheduled to meet w/ Early On to see if he qualifies for services in a couple of weeks, and I do hope he does. Andy is going to need physical therapy to strengthen his calf muscles & other leg muscles for standing and walking later on. We're hoping that the hospital diagnosis speeds up this process and he can start any therapy he needs sooner vs. later.

So I went off again... in typical Dawn style. At the end of Andy's evaluation at Mary Free Bed, I simply asked when we would be returning. It all went down hill from there. Apparently MFB is way over booked (Andy is 132 baby with SB), and they don't have enough capable staff to handle those numbers. Normally, each child w/ SB visits the MFB clinic where they see a ton of different doctors/therapists all in the same visit; thus, cutting down on the number of outside appointments the parents have to make to see each person individually. Because of the high numbers, their solution to the problem is to have a "virtual" clinic where patients with low needs / high function (such as Andy) can see each doctor individually and the doctor's report will be accessible to the other doctors via the computer network. This will be true for other patients that are high functioning and also live close to GR. THIS IS WHERE I LOST IT! I told the doctor that that was not acceptable. Just because of Andy's current success & close proximity to MFB does not mean he shouldn't receive the same services as other individuals. At the same time, the increased appointments were going to be a huge problem w/ me b/c of taking time off of work. Needless to say, he wasn't expecting a tongue-lashing. In fact, I don't think many of the doctors are used to being talked back to or challenged. His simple reply was that unfortunately, most of the time available by the doctors is given to the "not so good parents". Tom was about to tell me to calm down when I cut him off and told him under no circumstances was our child going to suffer simply b/c some other parent couldn't get their act together. It will be interesting to see where we go from here. We have to go back to MFB later this month, and trust me I'll be armed and ready to fight if needed.

Overall, though, we are ecstatic about the good news! Robby goes back to the sleep clinic tomorrow, and we hope it continues there as well. Our fingers are crossed that maybe some day we will be able to have everyone in our house sleep through the night.