Isaiah 7.17 : Updates, etc.

 We made it safe and sound to Dallas.  Drove from ATL to Monroe, LA on Sunday and Monroe to Dallas on Monday.  Pretty much the whole trip on Monday was in torrential rain and we saw a number of cars skidded off the road and in the ditch, but we made it through it all.  We've settled into our home away from home at the Residence Inn near Medical city where we always stay and today was Pre-Op appointment day.  We had a string of appointments from 10:30-3 pm and Isaiah was a trooper   We started out with pre-registration so we don't have to deal with it at 6:30 tomorrow morning, then had pictures, and saw the anthropologist, Dr Chan, to register all his current measurements.  She was happy with his growth and said we're pretty lucky he's within 2-3mm of being symmetrical across his face which isn't always the case with how much revision Apert kiddos have to their faces.  We then saw the intake nurses, child life, and got some labs done.  We grab...

 The blog is back,  and you know what that means, another surgery.  I rarely update this anymore as the day to day is pretty much the same and very busy with my work and 4 kids.  Rachel doesn't like to write here but I still like to do this from time to time to update people who've been following along with Isaiah's story we may not be facebook friends with, etc.   The whole crew squinting in the sun    First a little game of catch-up. Since the midface 4 years ago Isaiah's been doing pretty good.  He's been breathing much better overall, even had a sleep study with no apneas! We still have ups and downs, but most issues have been relatively minor and not surgical.   One of the bigger things we've been dealing with behavior issues mostly as of late.  Some of it is the autism and some of it is related to the scarring he has in his frontal lobe from his first cranio surgery at 7 weeks old.  We've been on a carousel of differ...

We'll be updating this post as the day goes on so check back every hr or so.  We're at Medical City Hospital in Dallas, TX. Main Craniofacial / Plastic Surgeon: Dr. Jeffrey Fearon ENT:  Dr. Brian Peters Our last look at this guys little face like this :( 6:00 - at the hospital waiting to be taken to surgery prep 7:00 - most of the doctors have been by to visit quick.  Isaiah got his 'goofy juice' to help him relax and with the separation.  We've got some funny video of him trying to play angry birds go while 'under the influence'  7:40 - They took him back to the surgery room 8:00 - Dr Peters came out to say his ear tube removal went great - He only had  the typical 10% holes in his ear drums.  We'll follow up with ENT in Atlanta and if we need new tubes they'll do it here when he gets the RED taken off.  Basically this was a piggyback procedure since he was already going to be under and its such a quick surgery.  ...

Hanging out by the fountain in the lobby The trip out here was pretty uneventful.  Elena's not as good of traveler yet as Isaiah and Christopher were at this age, but we'll get her there! Isaiah and Dr. Chan Anyways today was the marathon of pre-operative appointments.  We got to eat our Texas shaped waffles for breakfast this morning and had to be at the hospital by 8:45.  Isaiah got to be a supermodel and get his pictures taken by Mr. Max.  I wasn't in there to see if he did the Blue Steel Zoolander look, but it is his go to.  Then we got to see the new Anthropologist Dr. Chan who took all sorts of measurements of Isaiah's face and skull.  He was pretty happy yet in there since there were Minion stickers everywhere. After that it started going a bit downhill.  By this point he was already getting tired of being traipsed around and wanted to go back to the hotel, but we had to do blood draws/labs for the surgery.  He's a notoriously h...

So we officially have a surgery date.  7am on March 24, 2017 Isaiah will be going back for the RED surgery.  Having the actual date set just makes everything sink in so much more.  Rachel and I were in a fog for much of yesterday evening.  We knew it was coming and we know of plenty of people that have gone through all of this or will be doing the same surgery within months of us, but it doesn't make it any easier.  Maybe we were in denial for awhile, or simply just chose not to think about it, either way its hard to think of much else right now. Right now we're trying to figure out what help we'll need before, during, and after the surgery as people have already started asking.  We've never gone through one of Isaiah's major surgeries with other children before and now we have two!  We've always been so steeled up that we could do this on our own before, but inside we know we really can't.  We're even just having problems trying to explain it t...

Isaiah, Christopher, and me at the Train Show last weekend. It's always bittersweet to resurrect this blog.  Usually it means Isaiah has a surgery scheduled since this is one of the easiest ways for us to share with everyone that may not be linked up with Rachel or my social media accounts.  Well here I am updating this again as we prepare for the surgery we've been simultaneously dreading and excited for, the RED surgery.  It's one of the most involved and serious surgeries Isaiah will undergo, but its also one that will have the most drastic change in his appearance and will make him look a bit more like a typical child.   For those of you new to Isaiah's story and Apert Syndrome here's a link to Isaiah's surgeon in Texas' website  .  Isaiah's next surgery is the midface advancement (LeFort III) using the RED (Rigid External Distraction) technique, or simply "the RED" as most of the families with similar syndromes call the surgery and w...

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...

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...

First off, surgery negotiations with the providers and insurance company are still in progress and looking positive.   It’s almost a full time job for Rachel dealing with all this, especially when certain provider’s staff don’t feel like they’re giving it much effort at all.  I guess we can expect some of that since we 'choose' to go to Dallas because of what some of the Doctors here in Atlanta did and were saying they were going to do, but to us its not really a choice.  Unlike 4 years ago Rachel is working now, albeit part time, but it eats up a bunch of time and is making her worried about having enough time to ready her mind for the surgery.   I don’t know if you ever can really get yourself psyched up for these things.   I think you can only try to clear your mind of everything else that gets in the way, but even that’s difficult at times.   We’ve been lucky to have a very supportive family and since we’ve finally found a home church here in Atlan...

It's been over a year since we've posted anything worth much merit.  All in all that's been a good thing.  There has been little to report beyond an official diagnosis of Isaiah being on the low end of the Autism spectrum and starting Kindergarten this year.  Things are changing in short order though.  This Novemeber we'll be travelling to Texas so that Isaiah can have another cranial vault surgery done by Dr. Fearon.  It'll be his first major cranial surgery in nearly 4 years.  We've been very lucky that's his growth has been progressing nicely these last few years but his head growth has dropped off a bit recently, and that's why we're having the surgery.   It's a bit strange right now to think that in a couple weeks we'll be back in TX.  4 years ago we had just finished his fourth surgery in under 18 months and it all seemed like old hat.  Now its sort of this Deja Vu like feeling like we've done this before, but not quite.  Our big...

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...

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...

Thought I'd sneak this in before bed since I won't want to do it early tommorrow before I head back to the hospital. Isaiah is doing pretty good. His pain seems to be managed pretty well, its more the frustration with the casts and his headband and IV tap in the head. The prelim from the ECHO on his heart is a negative on the murmur, or at least they said all looks normal on first glance. The cardiologist is going to take a closer look and be in the room first thing in the morning. Dr. Fearon showed us the surgical pictures of his fingers and toes and they looked great. It was just awesome to see 5 fingers on each hand. It makes me cry happy tears just thinking about it. We only had to wait 378 days to see them. He also said once he's all healed up in the hands we should try to get the head surgery taken care of before the end of the year and that that would most likely be the last surgery for five years or so!!! Anyways, a good note to go to sleep on.

Isaiah got out of surgery today at about 12:30 cst and got through it all fairly well. He now has 10 fingers and 10 toes! They're gift wrapped in some blue casts and we'll get to see them in person for the first time in about three weeks unless he pulls a Houdini act again. The new pulse ox (SPO2) sensor worked great and the nurses seem to like it other than it only works with the newest readers which not all the rooms have yet so the vendor had to set up something special in our room so it reads into the central monitor computer the nurses can see at their base station. He didn't seem to react well to the anesthetic gas today. First he started trying to chew the mask when Dr. Blakeley started administering it and then his Blood pressure and heart rate would drop some so they ended up using more narcotics than last time so he's been sleeping pretty soundly since getting out of the OR. When the heart rate dropped the anesthesiologist noticed that it sounded like his ...

We were up bright and early this morning at 4am to give Isaiah his last bit of juice before the 4:30 cutoff. As we were getting ready he went back to sleep and we noticed a bunch of thunder outside. There ended up being some pretty major storms this morning so we hopped in the car and were trying to beat out much of the rain that seems to be dogging us the whole trip. As we were about to get on 35E there was the worlds longest freight train crossing in front of us and it took nearly 10 minutes to pass by. We were anxious enough for the surgery, but the looming storms made us that much more frantic. Eventually we were on our way again and got to the day surgery unit before the sky opened up on us. Unfortunately we left the camera in the car so I had to run back out to the parking lot. By this time it was absolutely pouring and I got soaked, but we got some cute pictures and two hours later I’m dry. Another new thing is that Isaiah is testing out a new pulse ox sensor. He’s the ...

Well we're in our home away from home right now, back in the hotel. Dr. Fearon came by this morning around nine and said everything looked good. Isaiah was breathing fine, took the bottle fine, evacuated his fluids fine and to top it all off was fighting to get the IV off his head and the Pulse ox sensor off his ear. His pain level seems pretty well managed and once the iv and O2 sensors were off he was a bit happier. He's just running a bit hot right now, no fever, but just sweating because of the casts and the fact its 91 here today. We're laying low in the hotel today and actually taking off for home tomorrow so we have the weekend back in ATL to recover and get into a groove sort of before I head back to work.

So surgery went well. Rachel and I spoke with Dr. Fearon briefly after the surgery and got to see some quick pictures of what Isaiah has hidden beneath his casts. We've got 6 fingers and 6 toes right now and it sounded like Dr. F said that it looks good for getting 10&10 with the second stage of surgery in 12 weeks. We got to go back into the recovery room at about 12:15 and despite being a bit crabby Isaiah looks pretty good. His face is a bit swollen so he's sleeping off the pain killers with his eyes slightly open, but he's breathing fine. He's got casts up almost to his shoulders on his arms and almost all the way up to his groin on his legs and big puffy padding around the casts right now so he doesn't whack himself too badly. As Dr Fearon puts it, he kind of looks like those big wheel bikes from the 80's with his big blue arm casts. I'm sure he'll be crabby when he wakes up more and probably in a good amount of pain too, but we're happy t...