Not much has changed since the post "Nitty Gritty."
We left ECI at the end of July. By the end of August Ezra started PT with a physical therapist here in Cypress. I am very grateful for our therapist but he is not a pediatric physical therapist and I really think Ezra would do better with a pediatric therapist however there is not one in our area accepting new patients right now (we are on some waiting lists) so we will be thankful for what he is receiving and pray for an opening with a pediatric therapist!
Ezra will finally start Speech and OT next week! He received a second set of evaluations on Tuesday and Wednesday this week and I am really excited to get his therapy going. For those who don't know after leaving ECI it took me until September to find a place to do Speech and OT for Ezra but after the therapy place and the pediatrician office could not work together and tell me the truth (they both lied to me more than once) I decided to fire them both. I found a new family doctor, rather than a pediatrician, and a new therapy place.
Ezra's genetic testing results came in. There were 2 findings: 1. he has carrier status for a genetic condition but does not have the condition himself. 2. there was a variant of unknown significance (basically there is a variation in a gene that is known to cause a genetic condition but the variation Ezra has is not the variation that is known to cause the genetic condition - it is not known if the specific variation in Ezra's gene causes anything). We met with a geneticist and she does not think that Ezra has any known genetic conditions. The 2 findings in Ezra's genes are actually 2 findings that are also in my genes and I don't have the conditions so it is extremely unlikely that Ezra does. The geneticist does not think either of the 2 findings are the cause of Ezra's developmental delays. The geneticist recommended a renal ultrasound and echocardiogram based on the variant of unknown significance as that specific gene when changed/mutated can cause severe organ issues and while she does not think Ezra has any organ issues she thinks it worthwhile to get his organs checked out and cleared. We have taken care or the renal ultrasound and are waiting on the echocardiogram.
Ezra's nuerologist ordered an MRI and Ezra was scheduled for an MRI in November but due to his having a fever the day before we had to reschedule and it it now set for December 14.
I will be relieved when we can get all the testing recommended done and out of the way. I am thankful that we have all his therapies going, PT, Speech and OT but I am hoping we can get pediatric PT soon and that we can find a better time for OT (only available time right now is on a Wednesday - when I have Shiloh and Asher - during Ezra's normal nap time - sounds like a recipe for disaster...). If you are going to pray (and I ask that you do) please pray for pediatric PT and a better OT time. And mostly for Ezra's full healing and catching up on his developmental milestones!
I'm taking a facebook break and Chad never checks facebook so unless you comment on the blog, by email or txt me I will not know you have commented and as nice as your thoughts are I won't see them. I am only sharing this on facebook as I know a lot of people get to the blog from there.
