Isaiah 7.17 : Updates, etc.

Sorry for the lack of posts.  I've been back to work and most of my weekend was spent putting up Christmas lights outside since we were in Dallas the week before.  Isaiah loves them so much its my excuse to go a bit crazy.  I'm not to Clark Griswold level yet and I don't have them programmed to music or anything, just a bunch of lights.  I think I put up around 50 strings over the weekend which totals something in the 2,500 - 3,000 range of lights.  Last year a family down the block from us said its like Christmas exploded at out house.  There's another 10-20 strings I need to repair, but anyways, you're not here to read my excuses for not posting...   Isaiah is continuing to do well.  His swelling is down considerably, but there's still some in the center of his forehead and around his left eye.  The bruising at the bridge of his nose is gone and we're starting to get a good feel how his new face will end up looking.  One thing has us...

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,...

 It's late, but we made it home safe and sound!  Isaiah is cuddled up on his favorite spot on the couch while Mom and Dad unpack the car.

  Isaiah's favorite rest stop in Vicksburg, MS.  Two bridges, one of them a train bridge. A river, and a river boat all seen from one spot atop a bluff.  I think we stop here every trip no matter what.  Its at roughly the halfway point distance wise from home.  Even if we stay overnight in Vicksburg we end up stopping here so he can see the bridges!

Hoping this works on my iPhone. I apologize in advance for punctuation and spelling errors. Rachel's been giving me a break from driving after we passed Shreveport and we'll probably switch when we get to Vicksburg. Isaiah has been doing great so far in the car. He's definitely got his spirit back and is as stubborn as ever!  We've been having to bribe him to take his meds and as a precaution have been giving him Zofran to keep the nausea at bay. Other than that his swelling is continuing to go down but he's still pretty top heavy. A couple people have asked if there's anything they can help with once were home. We're surprised at how well he's doing so we think maybe just help with meals. We're supposed to keep close watch on him this week so quick heat up casseroles or fast food or pizza delivery place gift cards would be great so we don't have to cook too much. Other than that really continued prayers that he doesn't develop an infec...

Just crossed into Louisiana!

He got his waffle!  That's all he wanted for dinner last night, but he settled for french fries.  We're checking out of the Residence Inn and heading home today.  We're trying to drive it home in one fell swoop, but Isaiah is doing okay so we may stop off someplace on the way.  We'll probably upload some pics on the road from out phone.  Thanks for your continued prayers!

Despite all the throw up last night he was able to be discharged right around lunch today.  We got back to the hotel and have been hanging out on the floor most of the afternoon.  Isaiah is already doing much better.  I had to run out for some more Childrens Ibuprofen since we didn't realize the bottle we brought was expired.  I came back with lunch for Rachel and I and as soon as he smelled food he said he was hungry.  He had some Teddy Grahams and tortilla chips and has been able to keep all his fluids and med down.  He's also more back to his old self building lego towers, playing with his cars and watching monorail and roller coaster videos on his iPad.  He's still a bit of a wobbly walker.  I'd be too if my head weighed a bunch more than normal and the swelling is still affecting his vision a bit, but its getting better every minute.  Thats it for now.  If all keeps up like this we'll be on the road home in the morning.

Well that was a fun evening. We knew it would be rough, but at least it wasn't as bad as we had steeled ourselves up for.  Basically he wasn't keeping much down and he went back on the IV for fluids in the middle of the night.  Luckily the peak of his swelling seems to have been overnight when his eyes are supposed to be closed so we pretty blessed to avoid much of the panic and stress that goes with not seeing.  There was a couple of times when he was up vomiting that he would ask us to open his eyes, but he was sleepy enough that once we cleaned him back up and put his music on he'd go right back to sleep.  I went back to the hotel around 6:30 this morning to shower and grab breakfast and a few other things we needed.  Isaiah woke up soon after I got back and immediately wanted a tour around the unit again to go see Alvin and the Chipmunks, Thomas, and Mickey.  We tried to get him to walk around a bunch to help get things moving in his body.  It's ...

Last update 8pm 9:00AM   We got back into the PICU about an hr ago after getting one last night of good sleep since minimally one of us needs to be with him overnight when he's moved to the normal peds floor.  As you can see by the picture his swelling is up some, but he's still able to see somewhat.  Mostly out of his left eye.  The swelling will probably peak sometime tonight, but so far it doesn't seem as bad as we remember.  Famous last words, right?  Right now he's fairly lucid, but still very very tired.  He's been talking and answering questions.  He asked for his new Thomas pillow pet his teacher Miss Brittany got him on tuesday and we're currently watching the original Love Bug movie which he absolutely loves.  His A-line (arterial line) was taken out at shift change this morning and we're starting clear fluids and should be moving to the floor as soon as Dr. F swings by to write up the orders if all looks good to him and so long...

Updated 2:30 - Just wanted to do a real quick update. Surgery went great.  Dr. Fearon was very happy with what they were able to get with his skull.  They could tell space was really starting  to get tight around his brain and they were able to improve things up there for him greatly.  He's in the Pediatric ICU and mostly still sleeping everything off.  Swelling isn't too bad yet, but we know it'll be coming.  He had a little work done on the bridge of his nose to bring that forward a bit which will help protect his eyes and also make his forehead advancement less noticeable.  Most people might not notice, but I could see it right away. One thing that's always hard to get used to is that our kiddos faces change after every surgery.  You sometimes never know what they're going to end up looking like.  We're just happy he still has a little bit of a crooked nose and that same smirky smile will be back once the swelling goes away.  Thi...

Scroll down for updates as they're available 8:15 AM Well a little more than a half hour ago they took Isaiah back to finish prep for the surgery.  The surgery itself only takes around 2 hours but he'll be asleep for 4-5 hours.  The first hour is prep, parting his hair and clipping it back out of the way, cleaning the site, etc.  Your continual thoughts and prayers are appreciated. One thing we learned today is how they harvest his own bone for the surgery which we weren't too clear on before, or if we were, we had forgotten over the past four years.  Apparently the skull has typically three layers sort of like an oreo cookie.  There are two outer layers of bone with, for the lack of a better term, creme-like center layer.  They'll take out portions of his skull and actually split it like an oreo, doubling the amount of bone they have to work with to put back in place.  As time goes by that split bone will grow back the additional layers of the or...

DISCLAIMER - Skip this post if you're squeamish.  I realized not everyone knows exactly what Isaiah is having done so I thought I'd use this post to describe it quickly and its a bit graphic. Isaiah is going to have what they call an Anterior Cranial Vault with a number of other small procedures around his nose and eyes.  Essentially they are going to reopen the incision scar Isaiah has from ear to ear from his previous surgeries and rearrange the bones in the front of his skull to give the frontal lobe of his brain more room to grow.  It's a bit of a puzzle like process where they cut out certain areas and put them back in a different place and the neurosurgeon helps to stimulate the brain to grow in the direction of the area they are opening up.  In order to do this they stitch his eyelids shut and sort of peel the skin of his face down. While open he'll get some bone grafts at the bridge of his nose to bring it out further and also have the corners of his eye so...

Sorry this might get a bit rambly.  It's been a long day and our stress levels have been so high lately I'm a bit punchy even though its only 8pm here. We made it through all the pre-op appointments today and even had a little fun.  We started off the morning at Children's Craniofacial Center's offices which are right here near the hospital in Dallas.  We visited for a little while with Char, Jill, and Annie in the office and found out that Jill's family has history in my hometown of Racine, WI and that she's from the Milwaukee area originally like Mom and Dad.  Isaiah got another stuffed animal, this time a kangaroo from Kohl's Care.  I'm pretty sure that's got to put him over the 100 mark on stuffed animals, or at least it feels like it. His first appointment was at 11 with imaging and he did pretty well sitting for his 'before' pictures.  They document his head in general, but mainly his forehead, and they took a number of pictures o...

Just time for a quick update.  We've made it to our home away from home, the Residence Inn Park Central.  We've probably spent more nights here in the last 5 years than any other hotel.  The drive was mostly uneventful, which is good.  I worked most of the day yesterday and we left Atlanta last night and stayed over at my cousin Walter's house in Tuscaloosa, finally getting to meet his fiance Jess.  It was much too short of a visit, but we're grateful for their hospitality.  We drove the rest of the way to Dallas today and are slowly getting settled into the hotel for the night.  Isaiah is all tucked in and had his story read already so I think that's my cue to get off the lap top and get some much needed sleep myself, while we still can.

 I lifted this from Rachel's Facebook, but thought those of you that follow us here would like to know as well.     "Thank you to all my prayer warriors who have been praying about our insurance stuff for Isaiah's surgery. I got word today that all our providers have successfully set up agreements with our insurance company to have their services paid as 'in network' for the surgery. Yay! Now we just have to make it through the next week"  While it doesn't mean everything is covered 100% it is a great relief to us that things will go through at the in network rate or minimally at a lower pre-negotiated rate than us being stuck with the high out of network rates. We appreciate everyone's prayers and know everyone will be praying for Isaiah on the 15th and during his recovery.  We have also been asking people to lift up the surgical team of doctors and nurses that will be caring for Isaiah at Medical City Hospital in Dallas.  Especially Dr....

This week has been exhausting.  Rachel and I are both pretty spent emotionally preparing for this and Isaiah is mostly blissfully unaware.  Every time we bring up we're going to go to the hospital he says something to the effect of "I no go to hospital, I ok!  Maybe tomorrow."  His 'maybe tomorrow' is his polite way of saying no to everything.  We also have the added fun on my Mom and sister coming down for the weekend to celebrate my Mom's XXth birthday.  I'll leave it blank, but lets just say its a milestone birthday.  We've been planning on this weekend for months.  Even before the surgery date was set.  The stress of tidying up the house and having to prep for the trip 3 full days early has gotten to us a bit.  At least its family coming and house doesn't have to be spotless, but it's been a bunch to juggle. Plus if you aren't friends with us on facebook and haven't heard already we've just announced that Rachel's pregnant w...