28 February 2009

Weekend Update

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 embroidered on them.

We've got a bunch of planning to do yet, and we're hoping to get to the ocean for a bit of time either on the way up or down, but we're looking forward to it.

In other news, Isaiah may get to experience his first snowfall on Sunday. Supposedly we're supposed to get 1-3 inches of snow, but I'll believe it when I see it. Last time they said that last year, the one time it snowed here, we got a 1/4" dusting that melted on all the pavement. We just want to see what he'll do with the snow. Rachel and I take it for granted since we grew up in the north, but its something crazy special to the kids down here (and some of the adults too) I'll be happy to see something more than dusty flurries and just enough to cover our grass and make our house look pretty.

24 February 2009

Photo Update

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!

12 February 2009

Dr Update

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 done in one session of surgery as possible to eliminate multiple times of anesthetic and hospitalization. So if he needed additional small surgeries like tubes in the ear for fluid drainage or if he needed additional hand work when he's in for a cranial vault they would try to do it at the same time. It's all about improving his quality of life and keeping him out of the hospital less, and it potentially costs less because you eliminate multiple things involved with each surgery.

We were staying with my cousin Angie and her husband Michael (and their son Karsten) which made everything that much more affordable. We ended up going to the Ft Worth zoo saturday morning and started out on the road that afternoon to split up the drive. We stopped off in Vicksburg, MS for the night and finished off the trip on Sunday so I wouldn't be completely beat for work on manday.

It was a good idea, but all the driving and travel still really took it all out of me and I was just exhausted Monday and have had the onset of a cold since then. I've just got a tickle in the back of my throat from my nose constantly draining and have been coughing a bunch, but otherwise I feel fine. The more sleep I get the better I feel. I can't imagine how I would be feeling if we had decided to drive all the way through on Sunday.

03 February 2009

Road trip

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 the near future, but we can't afford another payment right now. We're not as bad off financially as a lot of people since we do have a small amount of savings, but we're holding on to that should anything happen to my job since its maybe enough to get us through a couple months.
I've taken on a part time second job, but its a commission based job that is no where near steady for income, but I also haven't had to put a ton of time into it. With the job situation out there how it is right now I highly doubt there's something part time Rachel could do from home. We had planned on trying to find something from home for her before Isaiah came along, and when he did we just kind of let it go to the background.
We'll figure it all out though, just needed to vent out a bit on the blog.

No matter what we're super excited to go to Dallas and meet with Dr. Fearon. It's added expense, but well worth it if it will ultimately improve Isaiah's life.