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...

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...

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...

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...

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...

Sorry about the lack of posts until this morning about this, but I don't like writing about our travels on our blog until we're close to being home again so we're not advertising to the world wide web our home is empty and waiting to be robbed. Am I paranoid? Probably, but I feel better anyways. Anyways, if you didn't know, we're on the return leg of a whirlwind trip to Dallas, TX for Isaiah's annual check up with Dr. Fearon, the guy that gave him his fingers, toes, and his latest cranial vault. We did all we could in Atlanta first (sleep study, MRI) and really only had a half hr appointment with the good doctor for him to look everything over and physically see Isaiah and feel his head, but the news we got in that half hour was great! Isaiah's MRI looked good for lack of Intra Cranial Pressure (ICP) and his sleep study which is looking for sleep apnea, while slightly elevated for a normal child, was not too bad for a kiddo with Apert. We need another ...

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...

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.

The preop appointments went well for the most part. We do have a bit of a worry though. Apparently the hospital is not considering themselves in network right now because Coventry did not pay them according to their contract for the last surgery (something like only $2000 out of the $35,000 they should have gotten) While we understand why the hospital is leery of getting a letter of agreement worked out again especially since Coventry didn’t honor what they signed last time, but it would’ve been nice to know this before the trip. Instead we learned this at check-in when they asked how we’d be paying the $10,000 out of network deductible. Well we haven’t paid anything other than the deposit to Dr. Fearon and we’re sitting in the surgery waiting room as I write this at 8:45am on the day of surgery. Dr. fearon’s office is making some calls and hopefully it all gets worked out, otherwise we may have a fairly big bill in our future. Before that ever happens we have a bunch of differe...

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...

Sorry I haven't updated in a few days. The good news is we haven't been back to the ER, the bad news is when Rachel took him into see our pediatrician on Monday she discovered Isaiah had dual ear infections on top of his other maladies. For a couple of days there he was on 8 medications. We're down to 5 now including his nebulizer treatments. He's doing better but still has the occasional coughing spell and is vomiting once in awhile. In development news he fully flipped over on his own finally and didn't like it one bit. He hates his tummy time since his hands are so sensitive, but for the last month he's been hanging out on his side a bunch more so we knew it was only a matter of time before he would make it all the way over. He's a bit delayed in doing this compared to an average kid, but much of it has to do with his hands sensitivity and the pain/discomfort being reason enough not to try to do it on his own earlier. Speaking of his hands, we just ...

So Dallas was great. It was a long drive out 13.5hrs with all the stops we needed to make on Thursday, but we made it through in one day. Friday we saw Dr. Fearon and he was absolutely great. He really knows Apert kids. This is kind of what he's built his practice around and he had written a good number of the 'books' on treating Apert Syndrome and some of the techniques. Basically going to Dallas will take the place of 5 of our current Doctors. We would eliminate the need to see the hand surgeon, the foot surgeon, neurologist, neurosurgeon and craniofacial surgeon we have locally. He can monitor Isaiah from afar with MRI's ordered by our pediatrician, and reports from our eye doctor that can monitor his intercranial pressure (ICP) by looking at his optic nerves. We've started the insurance petitioning process and if all goes well he'll have his first hand/foot separation in April with the second one 12 weeks later. He basically tries to get as much don...

So we had a phone consult with Dr Fearon in Dallas this afternoon and we've decided to go meet with him to have a more full consult and possibly to take over Isaiah's coordination of care and his major surgeries. Its still early on for the final decision which is why were going to Dallas. We were figuring there would be a long wait to get in as a new patient but somehow we got squeezed in on February 6th. That's 1 week from today!! Its still sort of sinking in a bit that were going so fast, but it'll slow down once we have to try and petition our insurance to have him actually do the surgeries. One additional great thing is that my cousin Angie lives just outside Dallas in Coppell, TX so we're able to stay with her while we're there which should help us save some money. ACK!