One Year Ago - My Three Sweet and Beautiful Children
Well, Folks this will be my very last post.
I chose to take you on our Gluten Free journey - simply to share the experience with you. And if I can speak from the heart for a moment - I was hoping to share a miracle with you. Hoping that going Gluten Free would be the answer to many unanswered questions. I'm sorry to say that that was simply not the case for us.
Don't get me wrong - going GF has definitely been a benefit to Jet. Just not as huge as we had hoped and prayed for.
Before I say good-bye, I will update you on what has been going on with Jet because I know that there are a few that are curious.
After several appointments with his Geneticist over the past month we have learned that:
1. All of Jet's urine tests came back normal. Those tests were basically testing hormone levels or any type of deficiency that may be associated with developmental delay.
2. Jet has a slightly larger than normal liver, but still not large enough to be considered abnormal.
3. Jet has a very tiny duplication on his x chromosome. The specifics for that are, Xp22.31. He does not have an entire X chromosome - which mean he would have Turners Syndrome. He only has a VERY TINY duplication, just on little bitty spot duplicated.
So what does all of this mean?
Well to tell you the truth - I have no idea.
There is very little known about Xp22.31. A recent study that was done said that it could put you at risk for developmental delay or it could mean nothing at all. It might also mean that Jet might not be able to produce sperm.
In the world of genetics there is a lot more knowledge on partial deletions than on partial duplications. However, the world of knowledge is growing extremely rapidly - so in another 2 years they may have more knowledge on it.
If this duplication is indeed causing Jet's developmental delay - it basically leaves us in the same boat. We don't know his prognosis. We don't know if one day he will eventually catch up to his peers. We don't know if he'll ever be able to talk. We don't know anything.
Since this is my last post I might as well get really personal here.
I serve a God that separated day from night and gave us air to breath. A God that is all powerful. I love Him with all of my heart and I have since I was 14-years-old.
He has given me an amazing Husband and three exceptionally beautiful and wonderful children. He brought my mom back to life when I saw her dieing and through that restored my relationship with my Dad. My God is Good all the time and He has been so faithful to me, despite my sinful nature.
Every time I come close into melting myself into a little puddle He reveals Himself a little more. He has always provided the right people at the right time for Jet. We have INCREDIBLE therapists and Jet loves all of them so much. We have Great doctors that have helped us turn over rock after rock after rock.
If you read through the Bible, especially the Gospels - it is full of Jesus doing miracle after miracle after miracle. Healing people right and left. (I could be wrong in this statement and if I am - please please please correct me.) You never see Jesus say "No" to parent that has laid there sick child down in front of Him. You don't even hear him say, "Not right now" or "In a minute" - He does it immediately.
So why is He saying those things to us? My expectations for God are extremely high because I know in my heart of hearts that Jet could wake up in the morning and say,"Good Morning Mommy." My God is a "Sun Stand Still" God. He could it. But why isn't He? I don't know - I wish He would tell me His plan. I would trust Him and I would be obedient in whatever He was calling our family to do. I guess right now He's calling us to wait. So... we'll wait.
But until He chooses to make our "Sun Stand Still," I will continue to flip over the rocks because I'm a mom and that's what moms do.
Next month we have an appointment with a Defeat Autism Now doctor in Tulsa. Jet is not autistic but he does have autistic traits - so maybe this doctor will be able to help.
And finally, Thank you for walking us through our Gluten Free Challenge. Thank you for praying for Jet and for the rest of us.
Please continue to pray for a miraculous healing in our child - I know God can do it. And what a story that would be.
I love each of you.
I will probably start a new blog in the next couple of months, so keep your eye out for that.
THE END
