Here we go again...

Today I took our sweet Londyn to the University of Utah to see a Neuro Plastic Surgeon.  When Londyn had her first brain surgery, the neurosurgeon placed a drain into her ventricle to drain out the fluid and blood that had accumulated in her brain.  He didn’t check on her for a few days and ended up over draining her brain, which caused her sutures (bones that form in your skull) to collapse in. They were now overriding which gave her a very odd shaped head. Her pediatrician sent me to this surgeon in hopes that we could help reshape her head by using a helmet. There is a very narrow window you have to fix a babies head shape. Once the baby turns 9 months old, your window has usually closed. Since she is now 7 ½ months we wanted to get on top of it. When I saw the surgeon today, he discovered that her sutures have already fused. Some of these aren’t even supposed to fuse until you are in your 20’s. He said at this point, we are way beyond a helmet and that it would not be possible to fix Londyns head that way. She is going to have to have a full cranial reconstruction L This entails cutting her head open from ear to ear, taking out all of the bones in her head, reconstructing the bones while they are outside of her head, and then placing them back inside of her. This is a HUGE surgery and as you can imagine, we are pretty scared and nervous to say the least. We could use any prayers or good vibes that you can send our way. We are heartbroken that our angel has to go through yet another brain surgery, but we know it is something that will be good for her in the end.  The surgery is very important so that we can make sure that her brain growth is not inhibited because her head is too small. This brings me to the silver lining in all this (yes there actually is a silver lining.) When they did a CT scan on her brain today, we saw that her brain has continued to heal and get better. It is an absolute miracle and it is astounding to me how much she is being watched over. We continue to see miracle after miracle with this child. We are so blessed to have her.

            Also, recently the doctors have been very concerned about Londyn’s lack of weight gain. She has been being very closely monitored by her incredible pediatrician, GI specialist, and feeding therapist. We had a swallow study done to see if there was a chance that she could be silently aspirating. It basically comes with the territory of a baby with her same neurological make up that they at least have some sort of abnormal swallow. After the swallow study, her doctors were shocked to find that she has a totally and completely normal swallow. Once again, she is a miracle. Her doctors have been throwing around the idea of placing a feeding tube in order to give her the nutrition she needs. Her GI doctor is not on board with that though. He has A LOT of faith in her and believes that she can work it out. He obviously isn’t taking that option off the table, but he is giving her every possible chance to prove that she can do it on her own. It feels so good to have someone who believes in her and really cares about her as a human being (not that all of her other doctors don’t.) Her pediatrician also had her do blood work to see if she was anemic or malnourished from the lack of food. Once again, she surprised him. Everything came back normal. She has been so watched over and protected and I could not be more grateful. Please keep our angel in your prayers. She could really use it right now.