He had is Physical Therapy evaluation yesterday evening. We went to Theraplay here in Cookeville and met with Christine Taylor. She worked with Owen for about an hour. She said he had some "quirks" that were not typical for a kiddo his age. For instance, his fontanelle (soft spots) have closed prematurely. They typically close anywhere from 2-3 years old. This is probably why he has Metopic Synostosis (ridge on his forehead). After doing research, this is can often cause developmental delays. Which as most of you know, we are battling with right now.
He also had what she called "poor muscle tone". However, she said his joints were tight, while most children his age with poor muscle tone are more "floppy". Not really sure what that means. Regardless, she recommended he has PT once a week. He starts next Thursday.
I have yet to talk about Owen's MRI results on the blog. Honestly, I have struggled with what to say. The results came back as showing "delayed myelination". If you are anything like me, you have never heard of that in your entire life.
The definition of delayed myelination is: A wide variety of abnormalities. The causes of delayed myelination include congenital malformations, chromosomal, metabolic and degenerative disorders.
In terms of delayed myelination, this is often a diagnosis seen in babies that are born prematurely. The myelin sheath is a covering that wraps around nerves in the brain. The myelin sheath allows for the signal traveling down the nerve to not decrease in speed. It is similar to the rubber covering electrical wiring. MRIs of the brain can look at specific parts of the brain and assess whether the amount of myelin covering the nerves is a normal amount or if there is a decreased amount of myelin visible. Unfortunately at this time, doctors do not know the long term significance of this finding. Some patients who are found to have delayed myelination eventually go on to develop normal amounts of myelin, while other patients continue to have a diminished supply. At this time, it is
also unclear what types of long term symptoms patients like Owen may or may not develop.
We pray that Owen is one of the patients who go on to develop normal myelin and live a typical life. However, there is no way to know or change the outcome. Only God knows the plans he has for our sweet boy. Doctors have said he is "abnormal", "atypical", "sensitive", "quirky", and just plain "different". I may or may not agree with what they say about my son, but I do know one thing, he is very special. In an out-of-this-world way. He has a calling on his life to do great things. He may not be MVP on the high school football team, or Valedictorian of his graduating class, but he is the center of my universe. I want him to know one thing, no matter what happens in this life, or what diagnosis he gets, I will love him regardless. He will always be the most perfect little baby that I held in my arms for the first time almost a year and a half ago. I am nothing short of BLESSED that I am his mommy. I thank God for him everyday.
So where do we go from here? We have an appointment with Dr. Reimschisel at Vanderbilt in March to work on a "game plan". He is a doctor specializing in child development, biochemical genetics, and neurogenetics. I know he will not have all the answers but hopefully we will have a better understanding. We are so lucky to have such a fabulous children's hospital so close by with specialists for Owen. God has answered so many of our prayers.
What I am asking is for you to continue to pray. We need prayer warriors lifting up Owen's name. Brandon and I have such a strong support system in our wonderful friends and family.Whether you listen to my frustrated, helpless, and occasionally emotional phone calls, offer an encouraging word, or simply pray for this sweet boy, we want to say thank you, thank you thank you! And to those that have never met Owen, and still pray, thank you too. We appreciate it so much. We love you guys.
Until next time!
No comments:
Post a Comment