It’s been a hard week for me, quite honestly. It always is during this week of every year since Kayla’s been sick. I reflect upon how things are going and question God’s plan of allowing Kayla to have “special needs”. I know that things could be much, much worse and so therefore I am thankful. That doesn’t, however, suddenly make my desire for a full recovery vanish from my thoughts and emotions. The past few weeks have pretty much told us that perhaps a full recovery is not in the cards.
Before I explain what I mean about the future, let me tell you about how Kayla IS DOING now. She has had two rounds of botox injections that allow her weaker muscles the opportunity to get a little stronger (at least theoretically). The botox has worked very well in her foot and leg. She is walking very well these days and only begins to show signs of toeing in again when the botox begins to wear off. Her arm and hand do not show much improvement even with the botox. She has very minimal fine motor skill ability with “rightie”. She can clamp the muscles down but cannot open them back up again on her own. She has minimal ability to move her wrist up and down, but without prompting it just doesn’t take place. Cognitively she seems to be doing quite well—what a miracle! She is currently being given a psychological exam by the school system in order to decide how things are going from a clinical standpoint. She is a very happy little girl and is doing very well in kindergarten. I cannot say enough good things about her teacher, DeeDee Bennett. She has been great for Kayla and is so easy to work with for Paul and myself.
As for therapy, the school system has informed us that they feel Kayla’s impairment is not affecting her progress in school. That progress is what determines whether or not she receives therapy through the school system. We have agreed to allow them to do some developmental testing to have some true clinical data before we all sit back down together and make some pretty important decisions for Kayla’s future therapy and course of action. Kayla is still receiving private therapy once a week at the hospital here in Statesboro. I was informed yesterday that if we do not see some notable progress by the end of Kayla’s current plan of care that she would not create another plan for her. Basically that means that traditional therapy has done all for Kayla that it probably will do to help her recover.
I have been praying about where we go from here and hope that at least Paul and I will be able to continue to work with her to strengthen her right arm and hand as much as we can. There is also a research study at
Hug those you love and let them know how special they are. Don’t take a minute for granted! I’d love to hear from all of you!
Love and prayers,