OT was great. (Occupational Therapy). She loved Taizi and her summary was "hmm. He's a mystery, isn't he?" :) The great news from that visit is the entire wall was a mirror and he showed ZERO interest in it! I was shocked! We've kept him away from mirrors for 5 months and clearly that is moving him in the right direction of interacting with others instead of just zoning on his familiar world.
We then went to Physical Therapy. This was funny. Taizi started laughing hysterically and the PT thought it was so cute until I told her this means he's scared and wants out of here. Just to prove my point I suggested we put him on the mat so she could see him crawl. "You think he will crawl for me?" "yah...just watch.". He crawled. And crawled. And crawled. And did not stop. All the way off the mat and down the very very long hallway to the door! He wanted out!! :)
Here he is! She was shocked. She kept saying "leave him he'll come back" Nope. He didn't even turn around. He wanted out of there! I walked down the hallway and stood by him and put out my hands. He reached for me. But was very disappointed we did not go out the door!
I asked her if we could try a small walker with him as I believe he would use it! She got one, it was so cute. She had removed his pants, shoes and socks to watch his movements. She said he does need orthopedics but was afraid he would rely on them too much so she wants him to develop more muscle first.
How cute is that? :) He has a prescription to get his very own!
It gets a little long sitting in 5.5 hours of doctor appts. Me at 28wks pregnant...just so you know I was truly there...! :)
From there we met with NeuroDevelopment going over his plan and that one of my favorites...nutrition! I LOVE LOVE LOVE our CranioFacial team. They love Taizi and we just love working with them. Well, the greatest compliment I have ever received was when my nutritionist asked if I was a Christian. I was shocked and said "yes, I am!" she smiled and said "I knew you were within moments of meeting you...you shine." I think our greatest prayer in our life is that Jesus would shine through us and our journey.
We talked about both of our families and she talked about her own son who was born with severe special needs. She said everything changed when in a moment, she surrendered and realized the eternal perspective of what she was doing. Day in and day out 24/7 care...all the headaches of that changed when she saw this from God's view. And it transformed her own heart. Oh..how we relate to that. The toughest call God has ever given Dean and I...is the call to Taizi. I feel so poorly equipped it's not funny. It feels so overwhelming in every selfish regard imaginable. Yet we know that we know that we know...He called us to him. And we see the changes in our hearts...our own lives...because of Taizi. And it's all about daily surrender. This isn't about me, Lord. Help me see...this just isn't about me. Loving Taizi...is about loving You.
We went to our friends for the night. Got the kids tucked in for bed and we stayed up and chatted with our friends. Our kind, generous friends that with little notice opened their home to our large family to bunk wherever we could! Amazing.
We left at 6:30 ish the next morning for Taizi's sedated procedure. Taizi, Izrael and Zihao (always Zihao) had been very sick with a bug all week. We were nervous about this b/c obviously for any sedated procedure you should be healthy. Taizi still had a bad cough and really congested nose. We called as we got closer and they said "no...we need to reschedule". Honestly the only pain was that we woke so early when we could have slept in! :) But other than that, we would rather err on the side of caution. Besides...we go so frequently...it's totally ok. We rescheduled for 25th. Maybe we can combine even more on that day, I'll call ENT to see.
We got home in good time and got everyone tucked in early.
As I was brushing everyone's teeth I saw Azlan's head as he turned to get into bed:
Lovely. Oh...lovely. Non stop. April 18th marks 1 year since his surgery. And we have had this exact thing happen NON STOP. It oozes something, gets red, swells rediculously then goes away. Repeat. Ahhhh! Clearly it's not an infection b/c he's been off antibiotics for a long time and it's the same cycle. But perhaps this option is worse. It seems to be an allergic reaction to the titanium or a better way to say it is...his body is rejecting the implant.
This morning it was much more red, swollen and had clearly had continued to ooze through the night as we had to remove all the dried goo from around the screw. So glad to be able to be working with Children's now and getting the care he needs.
Today during school I remembered I had received an email to call Make A Wish. I made that call at 9am. This is how it went:
Me: Hi, I'm calling for ____ who emailed me a few days ago to call...?
Her: Yes! What is your child's name again?
Me: Taizi Walker
Her: Yes let me look up his file. Oh yes....he has been approved to make a wish!!!!
Me: Oh. My Goodness! :)
I got off the phone and told the children who erupted into a full blown celebratory dance! It was pretty amazing.
What an incredible organization. I hope this encourages people to give generously to them. Our family has been spending a lot of time on Taizi's medical care and there is no end in sight of that. Our 8 other children have never once complained, never once...about endless hours to Seattle (7+ hours in the car each trek!) and endless hours in waiting rooms and cold, rainy, Seattle playgrounds while Mommy is in the office with Taizi. It's so wonderful for all of us to receive this amazing, amazing gift right now!
The wish we believe Taizi will most enjoy is a trip to Give Kids The World, Orlando, Fl. For a few reasons. He loves activity. He loves being out and busy with the family. And...we hope to be able to meet with my entire family there! And we know...if he could express it, he would wish for that too! :)