08 February 2017

It's a Date

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 to Isaiah because what we have said so far isn't really sinking in. I know we'll need some help with the other kiddos, and meals after the surgery probably wouldn't hurt, plus Isaiah might like getting some cards or small gifts at the hospital in Dallas.  We just don't know exactly what we need, but we know we need everyone's support!

Right now we could really use your prayers and good thoughts.  Not only for Isaiah and his doctors and nurses, but for Rachel and my strength and well-being these next few months.  Once we get a better handle on everything we'll let people know what we think we'll need in the ways of physical help around this all.


03 February 2017

Surgery on the Horizon

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 will be happening mid to late March.  The next paragraph is a edited overview of the surgery from Dr. Fearon's website which you might want to skip if you're squeamish:

They will reopen Isaiah's existing scar across the top of his head to access his skull.  The bones of the midface are cut across the top of the nose, along the floor of the orbit (under the eye), and down the sides of the cheekbones. No scars are put on the child’s face. After the bones are cut, the midface is moved forward, the skin is closed and a halo is attached to the outside of the skull with 8-10 screws. A splint (U-shaped piece of plastic) is attached to the upper teeth and two wires extend forward from this splint to attach to the halo. The forward pull of the midface comes from the dental splint. The parents, or the child, turn two screws on the device 2 to 3-times day in order to slowly bring the midface forward.  Seven to eight weeks later the device is removed in a much shorter outpatient surgery.  
You can see how much his midface area is retracted.
This surgery helps address the slower growth of Isaiah's midface.  Right now the area around his nose is somewhat retracted since it grows as a slower rate.  The surgery will try to actually over correct Isaiah's mid-face and pull it further out that what would look normal right now so that he can grow into his new face and hopefully not need another surgery of this type in the future.  It also has the added bonus of improving the space in his skull for his upper airway, protecting his eyes by deepening the orbital openings, and alleviating sleep apnea among other things than just being a 'cosmetic' surgery. It's something we always knew he'd have to do, and while its not a medical emergency to get this done right now (we were actually hoping to delay this surgery until next summer) we're rushing right now to get this surgery and the halo removal surgery in before my health insurance potentially changes with the uncertainty of the current presidential policy changes.  Oddly my work's policy renews 6/1 every year instead of the more typical 1/1 so while we don't know if anything will change, we don't want to take any chances that the hospital and support doctors in Dallas that are currently in network right now may not be come June.  We just don't want a repeat of the $67,000 hospital bill from one of Isaiah's earlier surgeries that Rachel worked for months on to go away.

Your prayers are greatly appreciated!