Ty and more Ty!!

There have been several things I wanted to write about this week and I have totally spaced them. So since it is 3:00 am and I am still trying to decide how to sleep ( laying down in my bed or sitting up in the love sac.) I thought I would try to get it all down.

First off... We took Ty back to the park in our neighborhood tonight. He LOVED it. He has wanted to be outside all day. In fact he has spent most of it outside. He went out and took out the trash this morning and stayed out and threw rocks, then washed down the house and the plants with Dad this afternoon. We tried to take a nap but he wouldn't have anything of that so we played and him and dad cooked dinner. ( which by the way was super yummy and I loved it.) After dinner we went to the park till I had to get ready for work. Ty LOVED the slide and he even went by himself but his all time favorite is ball with Dad. He laughs so hard. He gets so excited. His shoes are to big because of his braces and so we would try to stand up but he couldn't because his toes wouldn't bend. We took his shoes off and he was off. He was so funny. We can't wait for Grandpa to come so he can take Ty to the park.

Second.... We finally are going to see the "doctor who can't be named." We go on Monday. I have avoided this visit for 2 years. But his sleeping can't be helped by his pediatrician any longer. SO... wish us luck. I am having Dallas go with me because I don't want all the information myself. I need a big strong strapping man to come with me. News ( whether good or bad) is much easier to handle with Dallas there.

Third.... Several months ago I was contacted by the Jorge Posada Foundation to be a mentor and to participate with others who are just starting their Journey with Craniosynostosis. I was contacted with my first family the other day and we had a wonderful chat. They are heading into Primary children's in the next few weeks to meet the neurosurgeon team. We wish them Luck and hope that baby Peter will do well.

In response to that particular part of our lives I am going to share a few photos and later this week will share our story so that others can find it... Don't you love Google.

This was taken right before we had surgery. Notice the dent in his head. The "bump" is his reservoir that was taken out during his surgery. Notice also how Long his head is.



Immediately following surgery. Notice the change in his head shape. It was almost immediate. The tube is a drain that would be taken out a day or two later. The blue tube at the top is his breathing tube. He was still on the vent after his surgery. ( that was the hardest part for me.)

Ty's second surgery was a total skull reconstruction. All thought it was a little more invasive he had less visible signs of needing surgery again. In fact the only visible sign was his sleeping had change ( holy shocker) and he had had no head growth in over a year.

Here is the most recent. It was in February of this year.
Immediately after his surgery. He didn't need the breathing tube for a long time this time around but he still had some oxygen needs.



With his dad.. The crease on his forehead is the drain that came out later in the day. He was swollen but not as much as they had prepared me for.




The scar was done on the same one as the last surgery and it looks really good now. You can't even see it



The day before we were released. He seemed pretty happy as long as Dad was there.



We are headed down to get a CT scan and shunt series before getting discharged. Because of his shunt we had to stay an extra day to make sure we didn't have a malfunction. He looks like he likes the wagon but he really didn't. Glad I got the photo before the meltdown.



That is our journey in photos for those who are interested. In a few days I will re post his story. He is such a miracle kid. We sure do love him.