Today felt like the Wizard of Oz came to visit in Virginia. I'm normally at UVA for most of Cary Lynn's care but her neurosurgeon from birth came back to VCU where all of her records are located. For years UVA has begged for them but VCU really doesn't enjoy sharing.
We had concerns. We've actually had them for awhile and it was mentioned that we should get a second opinion so I went back. They say the road to truth and justice is paved with answers so we hoped that we could figure out what's going on with our sweet girl.
I will say, VCU is a different experience from UVA. This isn't a good thing. But we needed answers. Today we started getting them.
Cary Lynn had something called a rapid MRI. A rapid MRI is in theory where you are awake and get your head scanned in 10 minutes by a super powerful machine. Easy right? Hahaha!!!!
We came in and had to wait an extra 30 minutes. Then they had to put Cary Lynn in a papoose wrapper so she wouldn't fall off. They gave her movie goggles and headphones so she could watch a movie, which thrilled her. Then they gave me earplugs and left the room.
About 3 minutes in the alarms go off and all the techs come running in the room. I think my kid has a major complication as they are rapidly reaching in the machine and yanking her out. I asked if she was OK and they unwrap her, look her over, and state that her headphones and movie goggles are wrecking the MRI machine. So after I look my kid over to make sure she's in one piece (she's giggling the whole time) and I get over my urge to throttle the techs for peeling 15 years off my life, they remove the movie stuff, give her plain headphones and we go for take two.
This time everything works and we are told to go home. I didn't like that. UVA always gives results right away and checks to make sure the MRI didn't flip her shunt. But we went home because I really had had way too much fun already and needed chocolate and a nap. Cary Lynn giggled and babbled all the way home so I'm pretty sure she was unfazed by it all. I wish I could let things roll off my back like that.
Today we went back. Today I saw my daughter's brain imaging for the first time in two years. Today I saw both the good and the not so good.
Let's start with the good. Cary Lynn has hydrocephalus due to a grade three brain bleed. She has something called a VP shunt.
As you can see in this picture, a shunt is placed into the brain and it drains extra fluid from her brain into her abdomen. Cary Lynn, at birth, had a very large head built up with extra fluid. This is dangerous. A shunt relieves the pressure and fluid build up in her brain. If she didn't have a shunt the fluid would take over and kill her.
When we last looked at her brain she had quite a bit of fluid. Enough that others were pretty worried. When I looked today that fluid in her ventricles has reduced some, which would explain why her head has "shrunk" a bit. The Dr. liked that part. So that was good. The shunt is working and after six years seems to know that mama can only handle but so much.
So here's where my daughter decided to get "fun". Cary Lynn sustained quite a bit of damage pre and post birth. The Dr. was there for a good chunk of this. He explained to me that he can fix fluid levels but he can't give back what is lost.
Cary Lynn was born with a damaged Cerebellum. For those that aren't fluent in brain here's it's basic job description: The cerebellum receives information from the sensory systems, the spinal cord, and other parts of the brain and then regulates motor movements. The cerebellum coordinates voluntary movements such as posture, balance, coordination, and speech, resulting in smooth and balanced muscular activity. It is also important for learning motor behaviors.
It is a relatively small portion of the brain -- about ten percent of the total weight, but it contains roughly half of the brain's neurons, specialized cells that transmit information via electrical signals.
The cerebellum is located behind the top part of the brain stem (where the spinal cord meets the brain) and is made of two hemispheres (halves).
Sooooo, when she was born that little area of her brain was damaged. It then started to disappear. Since her first MRIs she has less and less cerebellum. Today it's pretty much all gone and it's anticipated by the next MRI that it will be gone.
You can live without a cerebellum, but it makes things a lot more challenging. Imagine you buy an Iphone and you can play all the apps, receive calls and texts, snapchat, but you can't MAKE A SINGLE PHONE CALL. Does your phone still work? Yes. Can you use your phone? Yes. Is it going to make your life more difficult? Yes!!!!
We also have whole brain issues. There was damage and loss to other parts, but not as profound as the cerebellum. To add to the fun she also has parts of her brain that have been smoothed by damage. You brain has bumps called gyri and sulci. It is important to have these. They hold neurons and are part of the key to development and smarts. Not having them means delays and damage.
This was a hard visit. I looked at my daughter happily playing with her stuffed monkey and trying to kick the Dr. in the shin every time he came near her. She has pink cowgirl boots and they are lethal. I asked the Dr. what he thought. He was quiet for a moment and then said, "We don't always have the answers, but sometimes we have something better. We have miracles. This little lady is a survivor. She's come a long way. Let's take it one day at a time."
So that's what I'm going to do. We have some answers, and now we've got a plan. It involves more doctors, but sometimes you have to put on the boots and kick some doctors in the shins to get things done! My miracle and survivor is a fighter and taking it one day at a time, we will go far.
