23 March 2017

So far, so so

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 hard stick and it didn't go well.  They needed 2 lab techs, the attending nurse, child life, and Rachel to get it done.  3 sticks a ton of screaming, but in the end they got what they needed.  Needless to say he wasn't happy and we still had X-rays and appointments with Dr Fearon, his cranio surgeon, and Dr. Peters, our Dallas ENT.

Isaiah and Dr. Fearon
He got into a pretty big autistic 'loop' for awhile until we were done with X-rays but luckily we had some legos that he could build while waiting to see Dr. Fearon.  He got to see the RED device and got his picture and we got most of our questions answered.  Still nerve wracking, but did ease some concerns.
We took a quick break for lunch and some time inside Monstro's mouth playing video games before seeing Dr. Peter's about his ear tubes that need to come out during this surgery.   At this point he was just done and we went back to the hotel to decompress for a while before heading over to the Children's Craniofacial Association's offices for a visit with everyone over there.  If you ever need a great cause to donate to go to www.ccakids.org and check them out.  They've been such a great help to us and the retreats they have are awesome for all the families out there with kids like Isaiah.


Hangin out inside Monstro's mouth
We then had a great visit with another Apert family.  Lisa Brown and her son Logan who is15 and has Apert like Isaiah brought him some wonderful gifts.  It was nice to put a face with the name and meet another family that we've been friends with on facebook over the years.  Its always great to get perspective from someone who has been there!

Last but not least my sister Rebecca just arrived to help take care of Elena and be here for moral support around the surgery.  Always great to have family around to help.

We'll be up and at the hospital by 6am tomorrow and his surgery starts at 7:30 and goes until about noon.  We appreciate all the continued prayers and will be updating the blog as we go tomorrow.

2 comments:

Taryn said...

Following along every step of the way and lifting everyone in prayer! Much love to you all xoxo The Skees Family

Malia said...

Continued prayers for Isaiah and the whole family. Godspeed!!!'

-Mat and Malia