22 November 2009

Whoops there it was

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's Little Einsteins. You could just tell that this surgery flicked another switch on in his little brain. His swelling is all gone and the scar on his head is healing well. We're getting used to his new look, but its not all that drastically different. The biggest thing right now is waiting for the last dissolveable stitch to pop in his left eye so he doesn't look like a squinting pirate anymore. Otherwise his eyes just look a bit more deep set than before now that the forehead comes out over them a little bit.

Isaiah's also been playing peek-a-boo with us on the floor. He darts back and forth from behind the couch or wall and just looks at us and giggles. Just before I started writing this post he was sitting in the Living Room popping his head through the archway looking for me in the Den anbd as soon as I'd turn to look at him he'd hide behind the wall and start laughing. He's also started waving anytime anyone picks up keys or goes by the front door. He's really stating to pickup on tons of things very quickly and its a great feeling.

Last but not least, those of you who don't know me personally don't know how much I love Christmas. Usually I've got the tree and outside lights up November 1st (I wait until after Halloween at least) but since we got back from Dallas that weekend and taking care of Isaiah I didn't get the outside lights up until last weekend, finished decorating the tree in the living room this weekend, and sometime this week we'll get the little tree up in the Den. I just love the lights and all of the memories around the season from growing up like St. Nick's Day, decorating cookies with my Mom and Sister, Midnight Mass on Christmas Eve after dinner at Grandma Mix's, the small family Christmas morning with Kielbasa and Cherry Pierogi for breakfast, and going to the Kiley's Christmas Party with my Dad. I miss my family back in Wisconsin so much this time of year and I use the excuse of decorating so early to have more of those memories around for longer amounts of time, plus it doesn't hurt that Isaiah love the twinkling lights.

09 November 2009

Weeee're Baaaack 11/09/09

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 and if you move him too fast you can hear it slosh around. it gives me the willys just thinking about it. That fluid also makes it uncomfortable for him to lay down so we haven't been getting much sleep lately. Rachel has been very kind to me and took the brunt of the duties last night since I went back to work today, and today we found out he has an ear infection in his left ear which was super swollen. Apparently there was so much wax in the ear that Dr. Leonard couldn't see his ear drum. No wonder he was so crabby.

So for sleeping the only thing that somewhat worked last night was him sleeping on me or Rachel since he was more comfortable sitting up. Today Rachel tried him sleeping hi upright in the stroller which we may try tonight to see if he'll sleep longer than a half hr to an hr at a time. Wish us luck!

05 November 2009

Lil' Stevie Wonder 11/05/09

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 hasn't desat'ed yet to our knowledge, with the only alarm I can remember being because he decided to pull off 2 leads and his pulse ox sensor off. I am constantly amazed at his progress and toleration for everything and we're just blessed to have such a resilient little guy.

04 November 2009

Visitors & thanks for the prayers 11/04/09

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.

Get your booty on the floor tonight 11/04/09

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 the pregnancy) She definitely deserves it, and since Isaiah's been so good I can definitely handle it.

PICtUre! update

Still in the PICU but moving soon

Today is only yesterday's tomorrow 11/04/09

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't open his eyes) so we haven't experienced much of his frustration yet, but I'm sure it will come.

Hopefully we will be moving from the PICU to the normal floor within an hr or two!

03 November 2009

He's out of surgery 11/03/09

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

Surgery Day 11/03/09

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 added bone at the bridge of his nose and a little bit of work to the top of his head as well. He's also getting a little flap of skin that healed oddly from his circumcision released. All in all a pretty full day.

So far all the updates from the OR have been good and he's reacting to the anesthesia gas much better this time around.

02 November 2009

Pre Op day 11/02/09

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 still while the guy tried to measure all these different points on his face. I'm not exactly sure what they were all for. They may be just for record, or they may need the measurements for the surgery to help map out what they are going to do, and know what size bone they need here or there and how they might need to adjust things.
We had pulmonology next which took nearly two hours. Bottom line is, his junkiness is mostly upper airway stuff and he should be good for surgery tomorrow. Last but not least was Dr. Fearon who was extraordinarily happy with Isaiah's hands and he told us we did a wonderful job with the bandages.
Rachel and I are absolutely beat right now and she's actually napping, trying to build up before we head to the hospital for surgery at 6am.

Thank you everyone for your continued thoughts and prayers

the trip out to dallas 11/02/09

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 super sketchy hotel. There was nastiness growing inside the AC unit so we didn't turn it on, and the whole place was just grimy and just didn't feel safe. I think the icing on the cake was when we were flipping through the cable channels was accidentally running across the unscrambled porn. Not a good experience.
We had hoped to meet up with another family, the Hurds, in Shreveport, but because we didn't get as far as usual on the first day, and the lack of sleep fearing for our general health and safety at the hotel in Clinton, we just ended up driving through to Dallas. We monopolized the Texas welcome center's family restroom for 20 minutes to give Isaiah a breathing treatment, and saw what I swear was monkey roadkill (like a ring tailed lemur) on the side of the road, but nothing else significant enough to write about.

01 November 2009

in the car day 1

In the car yesterday