I wake up groggy in a hospital room, the reality of the previous days events come crashing over me, beating me down and pulling into a state of despair like a crashing wave. My princess is sick and mommy and daddy can’t help. Any strength saved from last night so that I could hold it all together is gone, tears burn hot on my face.
I hold my sleepy angel and rock her back to sleep. She is so perfect, beautiful and smart… But her body isnt working properly, her motor skills are severely regressing. In the summer (5- 8) months she was maturing beautifully, hitting every milestone that she was meant to, sitting, jumping holding her little head high. Today she is unable to sit, her head wobbles, she has a strong preference for her right side and her legs are often stiff. In one short month and a half she has regressed.
The doctors think that her problem is Neurological. The first test that they do is a CT scan so that they can rule out masses (tumors), excess liquid and any apparent causes. On what I though was a positive note the test came back without anything major appearing that would explain Lauren’s condition.
So far we have seen six different doctors all of which have noted down every detail of my pregnancy right up until today, we’ve been asked about illnesses in our family and for any details that we may have missed.
Based on what information has been heard the Neurologist thinks that Lauren may have a recessive genetic disorder. This would happen if both Stephen and I happened to have the same error somewhere in our genetic code. It didn’t come up in our cases because you need two errors for the problem to manifest. (I’m sure that this was a dumbed down explanation). There’s so many diseases that it could be that I don’t have the strength to even think about it right now, not before they actually figure out which one it could be. Regardless this news is not comforting, most of these diseases are not treatable and in some cases other milestones can go.
I pray that there is another answer, some simple solution that has been staring us in the face that no one has seen yet.
We have only started the testing and seem to have a big road ahead of us before we will have a better idea of what is going on.
I ask you to pray with us for Lauren. At this moment there is nothing more important that we can do right now.
We will keep posting her progress through our blog.
A picture of our Princess smiling through it.