Wednesday, June 11, 2014

Elliott is 6!!!

  I'm sorry I haven't really updated this for a while (Hangs head in shame).  The last few weeks/months have been really busy so please be patient with this post as I am almost certain it will be scrambled!

  Elliott and I went to Denver Children's hospital May 15 for his halo placement.

Elliott waiting for surgery

Notice that his foot and leg are "casually" completely backward? That would be Ehlers-Danlos for you ;)

Living in an orphanage and never having the stability and love of a family really takes it's toll on a little person, and that has become increasingly evident over the past month.  It started when we got to the hospital and Elliott's anxiety became increasingly worse with every person that walked into the room. 
Surgery itself, which involved drilling eight screws into Elliott's skull, surprisingly only lasted about 40 minutes.  As far as pain management was concerned Elliott did really well.  Emotionally Elliott woke up to a halo drilled just above his eyebrows and PANICKED!! Let me tell you! They gave him something to help with the anxiety and it was still awful.  Can you imagine waking up to this:

Well, neither did Elliott.  After a few days he adjusted and started to really love being the center of attention - everyone in the hospital knew who he was since mostly he spent his time riding the elevator and in a contraption like his he was hard to miss:

He learned to take his own vitals (well, almost) and the nurses adored him.  He was even nominated as hero of the month!!!

 We were in the hospital for a week and it was hard. The last day there Elliott really started to show some of his old orphanage behaviors. We were discharged on Wednesday, but not before getting evacuated to the hallways for a tornado warning and YES This is a real picture of the tornado happening right by the hospital while we were there and No, I didn't take it since I was stuck in the hallway ;) :

Once we got home I was hoping things would settle back a little bit, but the reality set in for both Elliott and I.  The fact is that Elliott is supposed to be in traction from the moment he gets up in the morning until he goes to bed.  The traction set up prevent shim from being able to move independently and he can't even look down to see his own food or look up to talk to anyone taller than him.  He drops things and can't pick them up, he doesn't have a lot of play skills because he never learned how to play (a simple thing that we all take for granted - knowing how to play) so most of what I hear throughout the day is: Mommy, can you help me? (*pick up a wash rag) Mommy, can you help me (*Play with this toy) Mommmmmy, can you help with my jacket?  Mommmmmmmmy, can you help me pick this up?  Mommmmmmmmmmy, can I please take off my halo? (Which is not an option without anesthesia and a surgeon) Mommmmmmmmmy?  Mommmmmmmmmmmmmmmmy?  Are you getting the idea?   We are READY to get this traction nonsense taken off!

Now, having said that, we have worked on finding things for him to do that he likes and that will keep him entertained for at least 5 minutes, including busy bags, a busy board, glitter jars, and scissors with paper.  (Ahem, most of those don't work for him because he wants mom to do them all for him - sorry, buddy, I can't play for you)   He is adjusting though and physically we have seen his spine go from a 90 degree curve to about 65 degrees.  We will go back in about a week to hopefully see what comes next.  Our likely options will include a cycle of traction/bracing/traction/bracing etc... or growing rods which will need to be adjusted every 6 months or so.   If we continue with the traction cycle Elliott will have a lot of frustrations and it still includes some type of surgery every few months, if we go with the growing rods we will be looking at a very intensive surgery, possibly a feeding tube temporarily to help him gain as much weight and strength as possible leading up to and immediately following the surgery.  Either option is stressful and will be difficult, but the reality is, that with the severity of Elliott's scoliosis we can NOT do nothing.  His lungs and internal organs will be severely compromised and shorten his life if we leave it - those are the facts Jack.

Alright, so this is getting to be a long post and I really need to be taking care of those little rascals that are currently either playing with play-doh, in the sandbox, or throwing little pieces of paper that have just been cut to bits (Can you guess which one?) with the exception of Lance-bo who is contentedly sleeping in the living room ;)

Here are a few more pictures of our newest 6 year old!!
Roasting marshmallows

FINALLY we get to go home and look what fun and enormous equipment!

Elliott celebrating his 6th birthday
After a day or two Elliott finally discovered the purpose of that triangle above his head:  It's a perfect place for his foot!

Working out those arms!

1 comment:

  1. Awesome update Melissa! Been praying for you guys! Wow! What a lot, but God has definitely gone before you and paved the way! Love you from NH!