The neurologist

On Friday morning we went in for our appointment. Derick filled out the paperwork, I sat in the chair holding Lily while she studied everything in the room, and I cried.

The doctor was amazing. I absolutely loved her. She spent 80 minutes with us playing, talking, and studying Lily. She didn't make any moves without Lily being comfortable, and she spoke to her like she was a human. I know why she has the reputation that she does.

To make a long story short-

Lily has weak muscles in her upper body. Not in the sense that we thought, but in the sense that her brain can't comprehend how to organize them or coordinate them to do what she needs. So, like, she knows that she has to roll over but she can't get her muscles coordinated enough to move her shoulder, put her arm up, roll, move her arm out of the way so it doesn't get trapped under her, and then lift her face off the floor.

The diagnosis currently is Hypotonia which basically is a broad term for low muscle tone. There is a benign form of hypotonia, but it's most commonly associated with Muscular Distrophy or Cerebral Palsey.

The good news is that this is the worst it will get. Lily will learn to compensate for that and will be able to do what she needs to do, but on her own time frame. The doctor wants to wait until Lily is closer to 2 to do an MRI because she didn't want to put her under or put so much radiation into her body at such a young age. She also said that a diagnosis of CP would come much later, and we might not know for sure if that's what it is or the extent of it until she's well into toddlerhood.

There are also many different forms of CP. The rarest form, affecting only 10% of kids with CP, is one that involves the organization and coordination of muscles. CP can range from so mild that the affected child will only have trouble writing to children that can't walk or breathe on their own. Lily's, thankfully, is much closer to the mild side.

She also said that in premature babies, CP is almost always found in the lower body or the upper body. In full term kids, though, it's almost always found in the left side of the body or the right side. That's very interesting.

I've also been reading a study done on babies born before 33 weeks gestation and babies born after. It proves that children that are born before 33 weeks have a much harder time reaching and grasping for things. They are at a huge risk to having Hypotonia and CP, and also at not meeting gross and fine motor skill milestones. It's all very interesting to me the more I'm able to absorb.

I feel relief. Now I know that A. I'm not crazy and B. we know where to go from here. We're of course continuing with the PT and OT. It might go much longer than we anticipated, but that's ok too.

I get very deffensive when people ask questions about Lily. They are innocent questions, but I freak out. Much like I did when we first lost the boys, but Lily is always with me and she's really cute : ) Anyway, the first thing I get deffensive about is when people ask about her birthmark on her nose. Except they are to dense to ask if it's a birthmark so instead they insist that Lily fell or she scratched herself. They immediately feel stupid for asking when I not-as-nice-as-I-should-be explain that it's a birthmark. Frankly, I'm getting tired of people asking. But now, naturally, I find myself getting more and more deffensive when they ask if she's crawling. I want to scream at them! But I can't go into the whole long explanation, can I? What do I say to them so that they can understand that she is not physically limited and they shouldn't expect her to be, and so that they can understand that she is in no way limited intellectually. In fact, I'm pretty sure she knows more about what's going on than I do. It's going to get worse as they ask if she's talking or walking and I just don't know what to say. Heck, I don't even know what to say to my family. Suggestions? Anyone?

I feel silly for being so worried. I know that it could be much worse. I know that there are so many families going through so much worse. But all anyone wants is a healthy baby. All anyone prays for is a healthy baby. And when your baby isn't, your whole world is consumed by it. Every thought. Every reaction. Every emotion. I never thought in a million years that I'd have to take Lily to a neurologist or that she'd have a reason to go. Although, I never thought in a million years I'd visit my sons in a cemetary either.