Isaiah 7.17 : Updates, etc.

So the little guy is nearing 8 months old now. He's pretty much been sleeping through the night for the most part, with occasional nigh terror like cries and with a little whimper he usually falls right back asleep. It's been nice to be able to get sleep again. So we're going to Disney World in a few weeks. March 16-20th to be exact. My Mom's got a time share in Orlando, my sister is coming down from Minneapolis, and hopefully we'll be able to meet up with my Uncle Bob and Aunt Connie and possibly my cousin Dave and his family who all live in Naples. I haven't been to Disney since maybe 2000 so I'm sure a lot has changed, but I'm super excited. I know Isaiah won't remember much if any of it but both Rachel and I need a vacation of sorts and this fits the bill. Since my Mom has the time share all we have to pay for is park admission (which isn't that cheap), food, and gas. We totally have to get Isaiah some Mickey ears with his name embroi...

Yeah yeah , we know, totally slacking off lately. But until I can find the time to post some more we've got a whole big batch of nearly 70 pictures for you to enjoy! We're working on figuring out a way to download the camcorder pics and videos without buying a new computer as of yet so these are all with my old camera. There's a bit of a gap between Christmas and late January but we'll fill it in eventually. Enjoy!

So Dallas was great. It was a long drive out 13.5hrs with all the stops we needed to make on Thursday, but we made it through in one day. Friday we saw Dr. Fearon and he was absolutely great. He really knows Apert kids. This is kind of what he's built his practice around and he had written a good number of the 'books' on treating Apert Syndrome and some of the techniques. Basically going to Dallas will take the place of 5 of our current Doctors. We would eliminate the need to see the hand surgeon, the foot surgeon, neurologist, neurosurgeon and craniofacial surgeon we have locally. He can monitor Isaiah from afar with MRI's ordered by our pediatrician, and reports from our eye doctor that can monitor his intercranial pressure (ICP) by looking at his optic nerves. We've started the insurance petitioning process and if all goes well he'll have his first hand/foot separation in April with the second one 12 weeks later. He basically tries to get as much don...

So the Mazda's in the shop again in preparations for the trip to Dallas. We knew there was a slow leak in the oil pan gasket and it needed an oil change, but they found another leaky seal and now the repairs are over $600. In the last 6 months we've probably spent over $2K on the Mazda and that's the supposed good car (from this century and just barely under 100,000 miles). That's the car we run Izzy around in since the car seat actually fits in the car and the car in general is in better shape (or so we thought) and just feels safer. We're starting to get more worried about money since Rachel is no longer getting disability checks and she just can't go back to work with all that Isaiah entails right now. Rachel's Toyota, a '98 Corolla with over 140,000 miles on it is holding on, but we've spent nearly $1000 on that car too in the last 6 months between a new serpentine belt, starter and battery. We know we need to replace one of them here in th...

So we had a phone consult with Dr Fearon in Dallas this afternoon and we've decided to go meet with him to have a more full consult and possibly to take over Isaiah's coordination of care and his major surgeries. Its still early on for the final decision which is why were going to Dallas. We were figuring there would be a long wait to get in as a new patient but somehow we got squeezed in on February 6th. That's 1 week from today!! Its still sort of sinking in a bit that were going so fast, but it'll slow down once we have to try and petition our insurance to have him actually do the surgeries. One additional great thing is that my cousin Angie lives just outside Dallas in Coppell, TX so we're able to stay with her while we're there which should help us save some money. ACK!

So here's the weekly wrap up. We had a relatively busy week this week. Wednesday was our trip up to Shriner's in Greenville, SC and after our visit we've pretty much eliminated that as an option for his hand surgeries. Nothing against Shriner's hospital, after all free care is free care, but their idea of what they could give Isaiah for functioning hands just didn't meet with our approval and we weren't comfortable going to a place without a pediatric ICU in case something serious happened. It was a bit of a bummer, but at least we went and we know now. Thursday Izzy had his weekly Physical Therapy (PT) visit. His therapist showed him how to knock over blocks and he seemed to have a good time doing it. Maybe it had something to do with the fact he was given licks off of a cherry dum dum sucker as reward, but he liked doing it. His face is hillarious when he has the sucker though. After he gets his lick in he closes his mouth all cute and pulls his lower ...

So Rachel took him in for his 6 month checkup yesterday and he ended up weighing in at 17lbs 10oz - exactly 50% in weight. I forget how tall she said he was but he was in the 95th percentile for that, but only 10th percentile for his head circumference. These are against typical babies which explains the height and head circumference differences. We're off thr Zantac cold turkey to see if he will have any acid reflux, but still on the flonase. We also started him on solid food purees yesterday. He had his first spoonfuls of pureed squash and seemed to enjoy it. Considering it was his first time being spoon fed anything, he did pretty good. He doesn't quite open his mouth all the way yet, but I think he'll get the hang of it pretty soon. He nearly ate the whole gerber package and we were hoping to maybe get him to eat half of it. Tomorrow we head up to Greenville, SC for our intake interview with the Shriner's hospital to see if he'll qualify for care. Its no...