Isaiah 7.17 : Updates, etc.

So sorry for the lack of posts. It's be a couple of busy weeks since we got back from Dallas. A bunch of sleepless nights and taking turns having Isaiah sleep on us (and Grandma Hanthorn) since while he was swollen that was the only way he would stay asleep. Work has been busy for me which is definitely good, but in combination with the lack of sleep, it was getting draining for awhile. Also my best friend in Atlanta, Peter J, moved back to his native Seattle. He was a former coworker of mine at my old job and we both got laid off on the same day, so needless to say what little free time I had the last couple weeks I was trying to spend with my buddy. If I could somehow convince Rachel to write here there would be more updates, but enough about that and back to the man of the hour, day, month, year, nay millennium. Isaiah has been doing great, crawling around like crazy, babbling more and more and the other day he started raising his arms when they tell him to on Disney'...

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 things are progressing. His swelling is starting to go down, but his eyes are still swollen shut. Dr. Fearon came in this morning and thinks we could get out of the hospital tonight. He's coming back after his afternoon surgery to check in and we'll go from there. He even said if we get out of the hospital tonight we could get back on the road tomorrow morning. Isaiah's much more active after a pretty uneventful night. We brought along a little tikes keyboard my cousin angie bought him last time we were here and he's been blindly playing it in the crib. Even though we couldn't see the little sparkle in his eyes, you could tell it perked him up and made him happy. He's been pretty chill for the most part. He hasn't thrown a huge fuss yet, but he has had his crabby moments, mostly when you try to move him. His breathing has been great the whole time and the respiratory therapists haven't heard a wheeze since the night of the surgery. He has...

Tonight we had a visitor local to the Dallas area that has been following along with Isaiah's journey via the blog. We just wanted to mention a quick word of thanks to June and Mike Graham for the wonderful basket of Great Harvest bread and goodies and more importantly for their thoughts and prayers around Isaiah's surgery and healing. June stopped by the hospital tonight and we were very happy to have met her. She is, from what I understand, the mother in law of one of Rachel's father's employees at the Opera, Eric Mitchko. We're just constantly amazed at the number of people around the world thinking of us and praying for us. Just off the top of my head we know of people across the US, Canada, England, and even New Zealand. We are really in awe of the awesome power of prayer and how lucky we truly have been throughout this whole process.

So we finally made it to the regular peds floor around 3pm today. He's still sleeping a lot and he had a fever that peaked at 104 but is back under control to a more acceptable 100.3. We knew he would have a low grade fever for a day or so as the anesthesia worked its way out of his lungs. He's had a couple of bottles of juice now and some applesauce as well as some cereal puffs, but his appetite is nowhere near normal yet. If all goes well we should be discharged tomorrow and back on the road to Atlanta saturday morning. We're thinking about driving straight through if he can handle it to get him back in his own bed sooner than later. I'm going to be staying in the hospital tonight with him to give Rachel another night of rest after I came to the realization that last night was her first night away from Isaiah since he came home from the NICU (and therefore her first full night of uninterrupted sleep in almost a year and a half if you count the latter half of th...

Still in the PICU but moving soon

Dr Sacco just made his rounds and thought Isaiah looks to be ahead of schedule recovery wise. So far he's been mildly crabby, but not horrible yet. His A-Line IV is out, no more Foley bag, no more Blood Pressure checks every hr and his labs show that he probably won't need any extra blood. We've got him to drink about 8 oz of apple juice and being the independent little guy he is he HAS to hold his own bottle which is a little interesting since he still has a board on his right arm so he doesn't pull his fluid IV out, but he manages. We just have to correct it a bit so he gets the nipple on the sippy cup in the right place since he can't see anything since his eyes are swollen shut. The swelling isn't nearly as bad as I had imagined, but I tend to be a little overly imaginative sometimes. It is definitely significant though and today will be its height. He's been sleeping most of the time from what we can gather (since its hard to tell since he can...

The doctors just came out to the waiting room. All went well. Dr Fearon says 'he looks really different' which is a bit scary, but we'll find out in about 20 mins. Everything went good, very little neurosurgery needed, but they said we timed things right for the surgery as lots of little defects were forming in the bone. More coming to this post as we know

So Isaiah was pretty funny this morning going into surgery. He knew something was up when he saw the caged crib this morning and was not too happy to see it. After he got his goofy juice ( Versed ) he loosed up a bit. He didn't sing this time, but he did have his funny moments. He absolutely refused to lay down, but after the meds kicked in he had problems keeping himself up. He would keep trying to pull himself up on the side of the crib only to slowly fall over. There were times when it looked like he was posing for a boudoir shot because he was half laying on his side, but trying to push himself up. Hopefully some of the pictures turned out. We're just hanging out in the waiting room right now and Isaiah should be done with surgery around lunchtime sometime. I forgot to mention yesterday they are planning to move his forehead forward about 2 cm and do a bit of a lift to the corners of his eyes. There are various little other things being done, like a bit of add...

At the pulmonologists office. Doctor's visit no 5 of 6 today So today was pre operation appointment day. We had 6 different appointments, one of which was at Children's hospital closer to Downtown which is about 20-30 mins from medical city where the rest of his appointments were today. That first appointment at Children's was with Dr. Sacco, the neurosurgeon. He was very nice and had some great Eames furniture in his office (famous architects and furniture designers) He explained the whole procedure, we got to look at his MRI's which we hadn't seen the latest one of, and helped put Rachel and me at ease now that we met the other major surgeon for tomorrow. The rest of our appointments were back at medical city and we had to do the pre surgery checkin, imaging, labs, and anthropolgy all in one fell swoop of appointments. Isaiah did not enjoy the anthropologist measuring his face. Rachel was holding him in the chair, I would have to try and hold his head sti...

So we've made it to Dallas safe and sound. The trip out here this time was a bit interesting. We we're able to stop off in Birmingham on the way out and saw Jack and Sidney and their families (their blogs are off in the sidebar to the right) . Its always great seeing other families and catching up on how everyone is growing. On our way we realized we were running low on Xopenex, Isaiah's main breathing treatment right now, and we had to find a 24 hr pharmacy along the route which was a bit interesting. We finally found a CVS in Brandon, MS but since we had never been to a CVS we had to get into their computer, and then something must've got entered wrong so the meds were initially denied, and then we had to go through the whole thing over again, but we finally got the meds and we're glad we did since they've helped Isaiah a ton. We made it maybe a half hour past Brandon and stopped off in Clinton, MS and due to some miscommunication ended up staying in a...

In the car yesterday