Isaiah 7.17 : Updates, etc.

Man have we got one crabby little kiddo.  I mean I know I'd be crabby if I had just spent 12.5 hrs in the car yesterday and my head still weighs more than normal.  He does have all his spirit back though.  He wants to do everything himself which is great, but also freaks Rachel and me out. The top heaviness makes him a little more uncoordinated than normal and even just transitions from laying down to sitting up can result in a pendulum like swing back down to the other side of the couch or bed.  His energy level is still pretty sapped though so we kind of do one thing of playing or a bath and rest on the couch for a while and watch some of the Chuggington DVD's he got as a present.  He's still sleeping quite a bit, but we make sure he keeps rotating to the swelling doesn't build up on one side.  He was also super excited to play with the rocket my cousin Angela Lowe and her husband Michael gave him in the hospital.  We haven't shot it off outside yet,...

Blood, Sweat, and Tears: that's pretty much the best way to sum up the last 24 hrs. The sweat was no big deal, just a ton of yard work in the heat and humidity yesterday. The blood and tears are another thing. To start it off, last night we had Isaiah's long overdue sleep study to see if he will need additional surgeries to clear his airways, check for apnea, and see if he may need a CPAP or other breathing assist at night. We were not looking forward to it. We know how crazy Isaiah is in his sleep and that's partially why he's still sleeping in a crib since he thrashes about so much. He had something like a dozen different wires mainly attached to his head, a pulse ox on his toe, bands around his belly, and a breath sensor taped under his nostrils. Needless to say he wasn't too happy and was up seemingly half of the night crying in frustration and annoyance. He really hated the breath sensor to the point when we were holding his hands he would try to get ...

In all honesty we've been back since Friday night at about 11pm after driving straight through from Dallas. We were happy to be home and sick of hearing the Playhouse Disney CD that was seemingly the only thing that could keep Isaiah calm for about 8 hrs worth of the 12 hr drive. If I have to hear the Handy Manny theme or Monster Hoedown anytime soon again I may scream. It wasn't until we were around Tuscaloosa that I tried another CD that didn't send him into a crying fit and that was daddy's Arcade Fire CD which lulled him to sleep with the orchestra backgrounds and church organ. The last few days have been relatively good. He's almost back to his normal activity level which is both good and bad. Its great that he's playing and crawling around but he's as fearless as ever and leading with his head which is still very swollen and full of fluid. I said it on facebook already, but his head both feels and sounds like a water balloon. It's squishy an...

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...

We're finally getting abit more sleep now. Isaiah virtually slept through the night for the first time on Tuesday, from about 9pm to 7am, but he's yet to repeat the feat to my chagrin. At least he's usually only waking once a night now though, so there's still hope! Anyways his development is coming along quite nicely. He's figured out he can move his head on his own now and enjoys looking around the room a bit. He's also loving the fact he can make his bouncy seat bounce all by himself. He just gets this huge smile on his face nowadays like he's proud of his accomplishments, however small they may be. (Both Rachel and I get that big smile on ours the same time too!) We're constantly amazed at how happy and bright he's become since the craniotomy and hopefully it was done in time to prevent, or at least reduce the amount of developmental delays he may endure. I've been fairly busy and was back in Minnesota last week for my Buddy Steve and ...

So good news, lately he's been sleeping more and more through the night. We haven't gotten to a full night yet, but the other day he was down from 8:30-5am! Both Rachel and I were like ' did you get up in the middle of the night to feed him and not wake me up?' but nope, he slept that long. That was Monday night and the last couple nights have been pretty much the same. Rachel's been trying to side sleep him to work on the flat spot on the back of his head. Our Physical therapist from Babies Can't Wait gave her some good pointers that help keep him from wiggling out of it. She also gave us this special chair to sit him in since his legs are getting a little 'froggy'. Its basically designed to help keep his legs more in vertical alignment with his body than to allow him to end up a bit bow legged which is where he is starting to lean a bit. Development wise he's still swatting at toys very well, he's getting more and more tolerant of tummy...

Sorry for the lack of updates lately. We've been rather busy. I was in Arkansas for work earlier this week and we've had a ton of pre surgery doctors appointments and we've got more before his surgery on Wednesday. Additionally my Dad, my sister Becca and her husband Anthony were in town from Wisconsin and Minnesota Thursday through Sunday night which has kept us rather busy as well. We did take a ton of pictures and he had his first excursion out to the Atlanta Botanical Gardens where he did fairly well so we'll have an update with those pics and more sometime this week whenever I have some spare time to upload them. I'm trying to work as much as possible today and tomorrow before the surgery in case I need to be off more later in the week, but as of right now I've just got Wednesday off for the surgery and tomorrow afternoon for a couple hrs for the appointment we have with the hand specialist. On a good note he is starting to sleep longer in the nights the la...