Ty has this thing where we make a list, we talk about the list and he “checks” it off. It is kinda funny to hear him say it, and he even does it when he is all by himself.
Example : “ Mom what are we doing today?”
Me: “ School, doctors and then home.”
Ty : “ School- Check, doctors- Check and home- check”
The lists and checking could go on for hours. He loves to do it at the end of the day, when we have a HUGE list to check off.
After our trip to Utah and I was horrified as to how loose his legs were and our appointment with the new physiatrist, I got some opinions of other moms of CP kiddos and decided that we really needed to see a orthopedic doc to make sure we weren’t hurting anything in the long run. And that the end result was what we were looking for.
We made an appointment for the new CP clinic that Dr. S is putting on at PCH. But, what we didn’t know, was that you had to be a established patient. So we got put in the day before the clinic. I was a little disappointed but found that this was the FIRST one!
Dr. S was AMAZING! What makes him so much cooler, is that he has 2 kids with CP. They just turned 16. He has sat in our seat before and he was so easy to ask questions too.
He was concerned about our course of action with persistent phenol. He doesn’t love it. We have found that most don’t and we are kind of on our own. We can’t find a doctor down here that does it and so we do have to go to Utah for it. So we are looking at some other options.
He was concerned that we were not seriously looking at any types of surgeries to help loosen his muscles. But the biggest concern is his ankles. His toes will always be the way they are and they will always be a little deformed but overall he really needs stuff done with his ankles to improve the quality of life and walking.
Another big concern is that we have not ever had xrays of his hips. We did ONCE when he was a baby at Shriner’s but no one has ever mentioned it before. This kind of freaked me out. My friends kiddo had surgery and it did not look pleasant so I was not looking forward to the idea that we overlooked something that is kinda big. The other big concern was that I was not expecting xrays so I didn’t bring another person to hang out with Grayson. Since they wouldn’t let G stay in there I had to leave Ty alone.
We went to the xray room and Ty climbed right up and talked to the lady and was so so so good. I was a little worried about leaving and stood outside the door waiting for a cry or a scream or something and it never happened. When they came out the door, Ty said mom, that was awesome and I can spell xray. He handed over his sticker and we were done.
His hips are OK. Not perfect, but OK. They don’t think that we will be needing surgery on them any time soon and we are OK. So really the only thing they want me to think about is the Heel surgery. We all have such a different idea of what to do. Every single doctor we have seen in the last 2 months has a different opinion.
We left the appointment feeling pretty empowered. We headed towards Tempe where our dad works so that Ty could go to the beach. We used our stinky diaper plastic bags to gather up a rocks and we had our left over lunch to feed to the birds.
We had a great time. Ty and Grayson chased birds for a while. Dallas was happy to see us. I was able to go to a Relief society activity that was very awesome. So it was a good day.
Good information, good day, great kids.