We went to the neurologist and to summarize he said that her head bob is not a bob but a rotation...now that that is corrected for all of you, he also said it is definitely neurological and not visual. As he went through her history from the NICU, he noted some enzymes and other things whose levels were off when she was born. Many of them, if they are still elevated could be part of her problem and lead us toward the solution. For whatever reason, her levels were never retested before she left the NICU, so our first plan of action was to get some blood and urine and test all of her chemical levels. If it turns out this is the problem, she will be referred back to the bio-chemical specialist she saw in the NICU and our odds are about 50/50 as to whether there is something we can do to help her out.
We are also going to redo the MRI. Yes, this means going under general anesthesia again, something she has never responded well to. It will take us several months to get an appointment for that so that will be in the future sometime. He will be looking for brain injury from her birth. Yes, they scanned her brain while in the NICU, but now that her brain has developed more, a minor injury that could have been missed early on might be visible now. If this is true, there is nothing we can do to help her out, it is simply brain damage.
If both of those come back negative, then we will start from ground zero and begin to search for the cause of her head rotation, including but not limited to a rare type of autism.
I know all that sounds so negative...we are still stuck in the waiting stage only now we know there is something going on with her brain. Are we worse off? I'm not sure, I'm still processing this information, but taking action of some sort makes me feel like we are doing something that could help in the end.
We DO have good news though...while the neuro was looking at her, he looked her right in the eyes and said, "You are one lucky little girl. No CP (cerebral palsy) in you. That's amazing!!" I know this means very little to most people, but it is written all over her discharge summary that she is super high risk for developing CP...so much so that it may as well say, "This child WILL have CP." So we can eliminate at least one disease that has haunted me for a while. Plus, right in the midst of all this, I am reminded over and over how God has protected and watched over her. I have to remember that most babies like her do not do nearly as well as she is doing. God has protected her in the past and He will protect her now.
So, poor M took her in to get her blood and urine drawn...four hours later, he was coming home. Em has developed veins that disappear as soon as a needle touches her skin. It takes a million pokes and this time around a syringe to get the blood they need. Thank you for your prayers. I am still stuck in a place of the unknown but it does make me feel better to just talk about it and get it out there...basically admitting to it and acknowledging its presence allows me to deal with it. I know I will continue to struggle with it, but it's nice to know others do too and I am not alone in this.
Oh, AND she's on the charts for height!! She made it to the 5th percentile in height and we can now stop feeding her pediasure and switch to regular milk! Yipee! That is a nice addition to the budget!
The rest of these pics are just hanging out with friends in the week we were home.
Peek-a-boo with Nana while Skyping is always fun.
Hanging out with friends in their sandbox and pool.
The two blondies...
They are teaching Em how to play dress up and it kills me that she is already trying to do it herself. :)
I kept telling them to 'look up' so I could get a pic but instead of looking at the camera, they would look at the ceiling. Yep, that backfired but it is funny, nonetheless.
They were measuring the floor tiles...until I said, "look up".
Calling already...
God Bless!!
