Isaiah 7.17 : Updates, etc.

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....

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

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. ...

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 i...

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 al...

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!

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 tu...

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 be...

We got discharged from the hospital a little after 5 pm yesterday. He's doing pretty good. I'll try to get a longer update in when I have a chance but it's a bunch more work on our own!  We're re still tube feeding but we started some soft solids today. Some syrup soaked Belgian waffle some tiny cut up grapes. This is probably going to be the biggest hurdle early on here. He's not acting like he's in much pain and he's getting more used to the halo. He's been a bit more talkative but still mostly one or two answers. Here's a little video of him this morning. Enjoy!

Look at that cherubic face! The rest of yesterday went pretty well.  We moved out of the PICU in early afternoon and have been on the regular floor since then.  He's been up and walking more and healing pretty well.  Pain has been managed well too he just wants the RED off his head already.  All in all he's recovering very well and we'll probably be discharged today. We still have some challenges though.  Feeding is still an issue.  He still has the ng tube in and oral feeding is not going the greatest.  He can do juice and water somewhat but needs to be reclined not to drool.  The feeding tube freaks Rachel out a bit, but we need to keep it in until he can take enough by mouth regularly and not throw up. The other issue we have is that his stools are so loose every time he passes gas he has an accident.  We've gotten better this morning about going to the bathroom, but we've had 4 such accidents the last day and it doesn't bode well ...

Another night in the PICU, hopefully moving to the floor later this morning if all goes well.  He's got a feeding tube in his nose that they've been doing med and feedings through since the IV failed yesterday afternoon.  His hand is still a bit swollen, but not nearly as bad as before.  We've gotten up to use the bathroom a couple times since they removed the foley.  As Olaf says 'All good things, all good things'.  Rachel stayed the night again as I've been close to losing it emotionally the last day or so.  I felt like there was too much movement in his midface when he was scrunching his nose with the nasal trumpets in.  He would scrunch and his whole midface would move like 3/4 of an inch and make this crunching / clicking noise.  I first thought it was the sound of his bones hitting, but realized later it was the dental splint.  It just gave me the shivers and I'd start flapping.  I just don't do well with blood and all this stuff...

Little man is in a ton of pain right now so prayers are still very much  appreciated.   As he's more and more aware of everything around him and on him and his cries of pain and frustration are getting louder and more frequent. It kills me to see him like this and I wish I could take it away. He grunted in anger at Dr Fearon when he saw him before lunch when he showed us how to turn the screws on the RED. Apparently he's done really well since he didn't need a transfusion and around me 75% of kiddos getting this surgery need one. He's already gotten up and walked about a quarter of the PICU and we've started feeds through a feeding tube. Right after they took his arterial line out his other iv started failing and his left arm and hand swelled up and turned purple. They had to remove the iv and his hand is back to its normal color but we're still waiting for the fluid in his arms to dissipate but it's definitely getting better slowly. Everything went so...

Last night I went back to the hotel with Aunt Rebecca and Elena while Rachel stayed in the PICU with Isaiah. We're trying to rotate so one of us gets a good nights sleep at least.  He was awake more overnight.  Apparently Rachel said there was one time he woke up long enough to say 'My head hurts' and went promptly back to sleep.  Mostly he was up briefly to moan or whimper since I can't even imagine the pain he's probably in.  There was a steady stream of Minion movies, Wall-E, and other disney flicks on the tv all night long. The orange things in his nose are the nasal trumpet  He also apparently coughed out a pretty big blood clot about the size of a golf ball that required a good amount of clean up.  Not fun sounding, but its good he was able to cough it out since its not something they probably could have suctioned out.  After that his airways were more open and his blood oxygen levels stayed much higher.  He's been on some good pain ...

We're in the PICU with him now.  He's not waking up much and we need to make sure he does more soon.  He's got nasal trumpets, a feeding tube, suction tubes in his mouth and all sorts of other goodness going on right now in addition to the RED device  (the big purple thing on his face) I'm going to try to put all the pics behind the jump, so skip over if you're a little squeamish. If you want to see pics click 'read more'

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...

Short update. We're making our way down the road. After a late start on the road yesterday we made it to our hotel in Vicksburg about 9:30 central time. We're just about all packed up again and should be in Dallas by dinner time. A couple people have asked where to send cards. Well try to figure out tonight if the hospital or hotel is better. Update: 3/24 - I forgot to check on this, and at this point it may be best to save anything being mailed and send them to our house.  2326 Milstead Circle NE - Marietta, GA 30066  We should hopefully be home Friday March 31st. Otherwise Isaiah will be at Medical City Hospital in Dallas until at least Tuesday. 7777 Forest Lane Dallas, TX 75230

We're getting down to it now.  A week from today Isaiah will probably be coming out of surgery right around lunch time.  I still don't know that we're ready mentally and he's still kind of clueless about it all despite all our prepping.  He knows he's going to see Dr. Fearon, and he's going to the hospital for surgery and he's seen pictures of the RED, but I'm not sure its all sinking in.  Work has been a mad dash for both Rachel and me the last couple weeks.  While both of us can work from the road somewhat, I don't know how much we'll actually get done, so we've both been trying to get as much tied up and taken care of as we can before leaving and its been taking a toll especially since we both work for very small operations.  Hopefully this weekend we can wrap up what we need to do personally to be ready for the trip and coast on our of here on Tuesday to start the drive to Dallas. Helpwise right now the biggest thing we always need...

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...