Meet Mikayla our little blessing. She is a vibrant and beautiful 2 year old little girl. She will capture your heart and make you smile who just happens to be Growth Hormone Deficient as is relates to Ectopic Pituitary Dwarfism. We have finally learned the world must conform to Mikayla not Mikayla to the world.
With this blog we are hoping to bring awarness and sensitivity to all People accross the world big or small. We believe with knowledge comes compassion, and we hope to pass on the knowlege we obtain along the way to all that stop her.
Mikayla was born January 22, 2007 6lbs 12 oz 21" long. The world was good now that she had joined our family . It wasn't until Mikayla was about four months old that we were told at here Well visit something might be wrong.Mikayla had fallen off the dreaded curve and was labeled "Failure To Thrieve", but WHY? Like all parents this is the kiss of death. Well of coarse my mind was telling me the worst. I unfortunately watch all those TLC shows like Mystery Diagnoses my mind was already off and running. Little did we know after a long two year search this was only the beginning of our flight.
We saw more types of doctors , had MRI, Sketatal Surveys, Bone Age and got more maybe diagnoses than I have seen doctors in my life. The scariest diagnose was Hypoachondroplysia(a mild form of Dwarfism)which was not confirmed. Now looking back I am not sure who it was more scary for Mikayla or me. I selfishly thought to myself why me. Why is this happening to me but now I am ashamed to say that I could even think that way. It was happening to Mikayla. That fist year and ahalf really took a toll on our family. I couldn't be happy being a good wife or mother to my other children until I knew what was wrong with Mikayla. I had been raised a Christian and my faith is strong but when something happens to your children you can easily find yourself questioning.
But as usual God is good, he finally brought us some peace. Maybe not the way we would have liked it to be but the was it had to be, we met our Endocrinologist and she was the missing key. We had been searching and searching for a diagnoses for so long but what we didn't know was only once we unlocked the mystery the real work would begin. Mikayla has been receiving four types of therapy (OT,PT,DI,Speech). and she also receives a nightly injection of Growth Hormone more than likely for life. I am not quite sure who it hurts more me, her, or her father. This diagnoses comes with other complications such as Hypotonia(low muscle tone this means even heart and vocal muscles) Hypoglycemia (low blood sugar) risks of high cholesterol due to not processing fat correctly, and of course short statue. Now she is monitored at three month intervals.
We are now trying to take life and what it throws at us day by day. Mikayla is doing great and growing wonderfully. To date she have grown 3 1/2 inches the first six months Growth Hormone Therapy. She is still -3% on the DREADED curve but is expected to enter it shortly. I was told the first year should have seven inches of catch up growth for her. I can't even imagine her that big.
I understand how you feel, Bill and I have been going through the same with Nate, except he is growing too big! He receives PT and OT. Since I got back from NJ he's seen 4 different specialists. He bounces off the walls and screams in frustrative fits everyday. His developmental pediatrician put him on Adderal because of safety issues (he tries to jump out of the car), but with that medicine he became even worse. He started to thrash into walls, scream for 5 hrs straight and couldn't focus on anything, not even to speak. Needless to say, we took him off after 1 1/2 days. But still to this day we are searching for what's wrong. I know my son and I see something missing. Bill and I are constantly questioning what is happening, so we completely understand what you and Chris are going through. I am very happy to see you received an answer of what's wrong, that makes life a little easier.
ReplyDeleteThanks for sharing,
~Kristin