It has been a very long time since I last wrote an update on Tinsley. Let’s just say that for the most part things have been going swimmingly. Swimming being something that Tinsley cannot do until he no longer has a trach (although I am not sure how well he would do with that anyway).
Dr. Escobar, Tinsley’s developmental specialist, explained that it is as if he has been in a serious car accident and needs the extended period of time to recover. Tinsley definitely has some physical delays, which are common with babies with achondroplasia, but with his added medical complications he has a few more.
However, his brain is very sharp! Everyone comments on how intelligent he obviously is and how amazingly social he is. He is excelling beyond expectations in both of those areas. Tinsley has an amazing attention span (the envy of his mother) and even without language he tells us how he is feeling.
As an example, we had a nurse that is new to the agency come and train with one of our regular nurses. Tinsley refused to nap the entire time she was here and as soon as she walked out of the house he feel asleep until the following morning. This from a baby who has yet to meet a stranger.
Though he has delays he is working very hard at catching up. It seems to me that once he gets the idea of what he needs to do he is willing to make a go of it. We have been so thrilled to see him bring his hands to his midline to reach for toys. Then smiled proudly when he transferred his rattle from one hand to the other. And our hearts lept when he brought his Sophie to his mouth to lick and chew.
The most recent bit of excitement was on Thanksgiving day. We had planned to go to his Grammie and Grandpop’s house in his car seat. Up to this point he has hated being in the seat and we have had to opt for a car bed to help him feel more comfortable. The entire hospital staff have over and over confirmed that the car seat is safe, but he was not interested. Both parents and nurses have been working with him diligently to develop tolerance for the car seat and it finally paid off. He was rather upset when we put him in it to leave, but once we got him in the car he was cool and feel asleep. When we went to go back home, he easily sat in the seat and again fell into a comfortable sleep on the way home in the dark.
God continues to generously share his mercy and providence for Tinsley. We have been blessed to have a work crew take care of our yard and have been so blessed by nurses who are not only competent, but who love Tinsley and our Lord. God continues to provide strength for us even on days when the ventilator will not stop alarming for no reason, when insurance companies cannot figure out our basic problems, and when headaches creep in and lay hold. I could never fully share how fully we have seen, heard, and known God’s hand in the events that have transpired since April.
Again, I can never share an update without again thanking each of you who read this for your prayers, gifts, time, calls, texts, and so many ways you share your love for us and our son. We long for the day that this will all be over so that we can share our dear one with you in person. Until then, may God richly bless you in his loving-kindness as he so dearly has us.