31 July 2017

Back to school!

Yes its July, and yes Isaiah has his first day back at school.  You can tell he's not too happy about it!  I think we're the earliest back to school I've ever heard of.  Seriously, who goes back to school in July already?!?!?  He does have 3 full week long breaks during the school year which are nice, but I wouldn't mind a little longer of a summer....

One of these days I'll get a good before and after comparison up here, but that would actually require me to have some free time....

18 May 2017

Home Safe and Sound

We're home safe and sound.  I'll do a bigger update here sometime this weekend with some good before / after shots hopefully.

16 May 2017

Introducing Isaiah 4.0

Right after they took the bar off in preop holding

The rest of the trip to Dallas was pretty smooth.  Yesterday we got some good news that his ears looked like they were healing well and that he wouldn't need another set of tubes put in when they take the halo off.  We also got to meet up quick with another Apert family, the Clarks, who were here from Ohio to have their daughter Haylee's halo removed as well.  Its always great to meet other families and they were nice enough to give Isaiah another gift of legos which he had to build almost immediately of course!

This morning we checked into the hospital at 7am, by 8:15 we were in the preop holding area and got a glimspe of things to come when they took off the front bar.  All in all it was a pretty quick surgery and he was in the recovery room by 9:45.  It was there we got to see Isaiah 4.0 for the first time with no halo!  He was still pretty out of it, but was asking for his ipad soon enough.  Even though we've seen the progression over the past few weeks, its just so different without anything else on his head.  We were so worried he had messed things up when he fell, but other than some bigger holes and scrapes by the pin sites he's doing fine.  I say 4.0 because this is the 4th different facial surgery he's had and each time his looks change some, but this one is by far the most drastic. He's like a new kid!  Even his voice has changed and is a bit more nasally right now.  

Our little cherub still holding tight to the halo
 We had to wait a bit for the anesthesia to wear off and then wheeled him to get pictures, xrays, and remeasured by Dr. Chan the anthropologist.  His cheeks are still a bit swollen and will be for a week or so, but the initial measurements are all good.  The happiest surprise is that his side to side measurements came back equal which means his face is almost perfectly symmetrical now instead of the left side being slightly smaller and narrower.  We left the hospital  a bit after 1pm, grabbed a quick bite at In & Out Burger and are letting the rest of the anesthesia wear off in the hotel before we figure out what else we may do today.

So far the funniest part is he wants to keep carrying the halo around like a stuffed animal.  I guess he got kind of 'attached' to his purple crown.  Tomorrow we drive back to Atlanta and will hopefully be able to stop off for a quick visit with a couple more families on the way home.

Thank you all for your continued thoughts and prayers throughout this journey.  We all appreciate them so much and we know its been a big help.  God does some amazing things and has put some amazing people into our lives and we're thankful for that every day of our lives!

Checking himself out in the mirror for the 1st time

14 May 2017

Ready to be done...

Getting ready to leave home
I had meant to update things earlier, but we've had a little too much drama the last few days.  Isaiah fell on Thursday and Friday and knocked his halo loose a bit .  Besides the temporary pain he had a good amount of blood oozing out of the pin sites on the sides of his head and it sent us into a panic thinking we got so far along and then messed everything up.  We called the on call physician and they talked us down a bit but Rachel and I have been in a pretty stressed out state since the falls and will be until the halo comes off on Tuesday and we know everything is okay.  Everything should be pretty much set by now, but we can't help but be sick to our stomachs about the whole situation.  Isaiah's acting fine for the most part which is good, but your prayers are appreciated for calming our nerves and that all is still well with Isaiah.

In Vicksburg, Train in the background
Tonight I'm writing from our hotel room in Shreveport, LA.  We left home about 9:45EST and got here just before 6.  The trip out has been pretty uneventful so far.  We did make our normal stop at the rest stop in Vicksburg, MS overlooking the Mississippi River and this time Isaiah got a treat and got to see a train lumber its way out of a tunnel, up a small hill, and over the river.  It really made his day. I think we've got about 2 and half more hours to go to get to Dallas tomorrow in time to see Dr. Peters his Dallas ENT to determine if he'll need new ear tubes put in when they take off the RED. We're just ready to be done with this all.  We've been so scatterbrained and running on such a high level of stress since Friday on top of all the worry and anxiety we've had around this the past 7 weeks we're just wiped.  At least Isaiah has been handling it all like a champ...

25 April 2017

The New Normal...for now

Ready to help open birthday presents
See I promised it wouldn't be two weeks!  Only 11 days this time.  Everything is still going well.  We got word from Dr. Fearon to stop turning the distraction screws on Wednesday last week.  The final number of turns was 63 and at 0.5mm per turn that means his midface was brought things out  31.5mm or about 1.25 inches.  Its really an amazing difference overall.  Right now he's wearing the device for 3 more weeks so everything can heal together properly and we're now scheduled for removal on May 16th at 7am back in Dallas.  It can't come off soon enough!  We've learned to live with it, but we all want it off.  Its become the new normal for now.

This past week my mom was back in town to help with the kiddos so Rachel could try to get some work done.  On Saturday we had a nice family birthday party for Christopher who turned 3 on Saturday and we'll have another one down the road some with all of his friends because we just didn't want to have to explain the device on Isaiah's head to fifteen 3 year olds or exclude him from the party.  Saturday night Rachel and I also got a much needed night off.  Once we had the kids pretty much ready for bed we left them with Grandma and headed off to a late dinner at Soho in Vinings and then a night in the nearby Hotel Indigo to actually get a full night's sleep without worry of the kids waking us up.  It was nice to have some time to just ourselves and try to relax a little.  Too short of a break, but definitely was nice.
Christopher's Birthday party Saturday

Isaiah's also gotten a number of cards and care packages from fellow Apert families as well as our family and friends too and he's loved them all!

The biggest thing we need prayer about now is that our health insurance is playing games with paying the surgeon.  They apparently pulled the Letter of Agreement we had between insurance and Dr. Fearon while Isaiah was IN surgery and had been for like 2-3 hrs.  We haven't seen the EOB yet, but we're livid and we were given no notice to even contemplate postponing or cancelling the surgery since he was already under anesthesia and in surgery for hours at that point. That's just not playing fair.  Its not like we hadn't checked literally the day prior to make sure we were covered.  Everything else was covered in network, every other provider, even the PICU doctors, which are never in-network, so this is just frustrating.  We're going through the normal appeals process first, but if it has to get to lawyers it will.  Dr. Fearon's office is working with us to help fight this, but if it doesn't work out we could potentially owe multiple 10's of thousands of dollars and it does make the removal surgery financials a little interesting as well. We're pretty confident we have a good case, but its just an exhausting and frustrating process to load on top of everything else going on.

Isaiah with the hair dye bottle he's been using to drink from

14 April 2017

Super Mega Update

Whoops!  I didn't realize its been almost 2 weeks since I last updated.  Even though we've had a bunch of help the last few weeks, its still a bit of a busy mess at home and I've been working more than my 40/week to play catch up on all the things I missed at work while we were out. Most importantly Isaiah has been doing really good!  Big update below, just click on 'read more' below the pictures.

Current front on shot taken 4/13
Current profile taken 4/13 - So different!

01 April 2017

Back Home

Leaving the Residence Inn
Sorry for the lack of updates.  It's been a bunch more work than we thought at first here, but every day is getting better.

   Isaiah is healing well.  He's still pretty bruised up under his left eye, but the right is almost clear now, just a little yellow in the skin yet.  Where they had his arterial line and iv's on his arms are still bruised as well, but slowly getting better.  His incision on the scalp still looks great and we've had no major issues with where the pins go into the sides of his head to hold the device on. The problem we still have is feeding.  He'll barely eat anything yet, and we have to force him to drink things. He won't touch pediasure, not even diluted half and half with milk.  We've tried Carnation instant breakfast mixes  and a couple other things but all he'll drink is apple juice, orange juice, or milk.  Its better than nothing, but not enough.  We still had the feeding tube in to supplement with pediasure that way, but we noticed it was starting to come out tonight so we pulled it out the rest of the way.   The good thing is he's figured out how to get a straw to work with the dental splint.  Juice box ones work best, but he can use a bendy straw if we cut it down some.  He's got limited sucking power so the shorter the distance the better.  Prayers are still needed that we can find stuff he'll eat or that he'll drink the more calorie laden pediasure again.  We can already see he's lost some weight, but that also could have to do with the fact he never had a transfusion and his body has been working overtime a little more than normal.
Sitting on the couch playing iPad

The other big thing is he's pretty sad about the bruising on his face and won't leave the house.  He barely even go out on our back deck yet where virtually no one can see him.  He just thinks he looks scary.  This is coming from the kid who's never really cared about what he's looked like before.  He's never been self conscious before and its killing us inside.  We knew the day would eventually come, but we didn't think this would trigger it.  It sounds like he's fine with the RED, but the bruising is what bothers him the most.  Hopefully he'll come around soon.

(Click Read More for the rest of the update and more pictures)

29 March 2017

Recovery Day 5 pm

Pretty good day all things considered.  We ate some of our first solids, and he's been steadily drinking milk from a hair dye bottle.  He won't do pediasure in the bottles yet so we've still kept the feeding tube in yet to do meds and supplemental feedings of pediasure.   Its getting better but we need him to east more on his own through his mouth.

The feeding tube is not something we were prepared for dealing with, but its making the pain meds way easier to do right now since he usually gags and throws up from the sweetness of the children's motrin/tylenols.  That should hopefully make the trip home a little easier tomorrow.
He likes to hold the front bar when sleeping

He has been sleeping a ton as I'm sure his body is jsut beat down trying to recover, but really doesn't seem to be in much pain at all and his swelling almost seems negligible compared to the Cranial Vault Reconstructions (CVR).  He is having difficulty somewhat getting comfy laying in bed on his sides or laying down to watch his iPad.  He's already used the front bar of the RED to hold up his iPad so that's one thing he does 'like' about it.  I've noticed him holding on to the front vertical bar while sleeping a few times.  He used to throw his hands or arm across his eyes, so maybe this is as close as he can get right now,

Tonight my cousin Angela came to visit.  She's actually a pediatrician here in Plano, TX and we've stayed with her in the past when we just have appointments, but her house is just a bit too far for when we have the major surgeries, especially with Dallas' upredictable traffic that's so similar to Atlanta.  Its always good to see family and catch up. We also met the Clarks who are another Apert family from Ohio.  Their daughter Haylee is supposed to be having the same procedure done on Thursday, but they've run into a problem with how their insurance initially coded something and are in jeopardy of having to delay the surgery.  Please send some prayers their way that everything gets resolved in time for the surgery to take place this week and that her surgery and recovery go as well as Isaiah's has so far.

Lastly I have to send out a big thank you to my sister Rebecca for taking time off and flying down from Minnesota to help us with the baby and everything while we're preoccupied with Isaiah.  Its been wonderful having family here the whole time, and she's done so much.  Considering all the typical stupid and mean things I did as a big brother growing up its great to know we can rely on each other for help when we need it.