Hey There,
I wish I had better news to share...unfortunately, our follow up didn't give much new information. Our Maternal Fetal Medicine doctor brought in a specialist that has studied Skeletal Dysplasia cases for the past 30+ years to review the CT scan and our ultrasound today to hopefully give a firm diagnosis. The specialist explained that Sadie definitely has some type of Skeletal Dysplasia, that they know for certain, but they aren't able to pinpoint exactly which type she has because she is presenting symptoms for numerous forms.
They are still unable to tell us for sure whether she will survive outside of the womb, but from what they are seeing, if she does, she will not ever have normal leg or arm function and will be wheelchair bound. (This is due to the lack of calcification in the bones of her spine and hips; as well as club foot - the doctor explained that her club foot is so severe that the top of her foot actually touches her shin...y'all this BROKE my heart). As of today, her heart, brains and lungs look normal which is great news, but if her chest growth slows and doesn't form properly her chest will not have room to support her lungs which can be fatal to her.
We left feeling overwhelmed and confused... we were really hoping this CT would provide more clarity and at least allow us to mentally prepare for what we will be facing in the coming months. I will not lie to you and say this is easy y'all. I have cried all day... cried over my girl...cried over how this will affect Grant...cried over the things mean people will say about her. I'm human and I cannot comprehend why this is happening to us or how this could possibly be used for good, but I'm learning to trust without understanding.Drew and I are both mentally and emotionally EXHAUSTED but we are leaning on God, each other and your prayers for endurance.
~Jenny
No comments:
Post a Comment