Overwhelmed

I wanted to start with some pics of the girls.

Lily's new sunhat!

Waiting for the doctor (again).

This is going to be a long post. The last few weeks have been a whirlwind replete with visits to specialists, a certain girl turning 7 (!), and a minor flood that invaded our sheds, the playroom, and nearly got into one of our cars. Hence the title of this post. I'll break the new info out by specialist.

Neurologist

A few days after seeing the ortho we headed back to the neurologist to actually look at the MRI images. I'm just going to sum up here since there were a lot of technical details. Lily's diagnosis is secondary microcephaly, agenesis of the corpus callosum, enlarged ventricles, and cortical dysgenesis. What does all this add up to? Essentially, Lily has less brain mass than your average 8 month old.

This is not going to spontaneously resolve. No sudden brain growth spurts. Brain growth just doesn't work like that. She will be behind her peers consistently for the rest of her life. Right now we don't know how far behind that will be. Actually, we probably will never really know.

The take away is: don't try putting her in classes with children that are younger than her (i.e. sticking her with 4 month olds, which is about where she is developmentally). What she needs is individualized solo and group therapies to help her attain skills.

Neurosurgeon

We went back to the guy who originally missed the fact that Lily was missing an entire structure of her brain! This was, basically, to get it corrected in the medical file so that we don't run into any issues getting treatment at a later date.

He's a real piece of work. He never bothered to say sorry and his excuse was "Oh, I didn't realize no one had had the brain talk with you". Oh really? Had he bothered to even glance at her chart he might have realized he was the first "brain person" we had been to see. Ah well.

The one valuable piece of info: Lily's ventricles have not enlarged between January and March. Her condition, at this point, does not seem to be degenerative. Thank goodness!

Audiologist

After much poking and prodding, we managed to get a hearing test. She measured normally int he mid frequency ranges but didn't seem to be able to hear higher pitched noises. But it may be because she was recovering from a cold and had fluid on her ears. So we go back in one month to check her again. *sigh*

Opthalmologist

This was the appointment I've been most worried about since eye conditions seem to be a common by-product of her condition. After much shaking of various toys, the opthalmologist concluded that Lily tracks objects well vertically, but not horizontally. The caveat is, she does not track normally for an eight month old, but since all of her development is behind this may be on par with the rest of her development. We will have to wait and see.

After that, she had her eyes dialated. Her optic nerves are a normal size (yay!). But they are partially pale (they should be a pink color). Some kids with pale optic nerves have normal vision; others have partial blindness, which is not correctable. Again, we must wait and see.

In addition, her left eye turns in slightly so we'll be doing eye patch therapy over the next month to help strengthen her eye muscles. That's right. Lily will be a pirate (with a ladybug eyepatch, no less) for approximately 20-30 minute a day.

Orthopedic surgeon

We got a second opinion and went to a highly recommended ortho. He wants to do a fluoroscopy procedure in the next couple weeks and see if we can get Lily's hips back in socket and in a cast. If that does not work, we are almost assuredly looking at surgery to put them back in the sockets. I'll post more as we get closer to the date.

Alright, if you've made it this far, thank you for sticking with me. If not, I understand. It's a lot. I haven't had a spare moment to post in the last two weeks and now you see why. I will try to do a non-medical post later this week with some thoughts about Lily and Elise, pictures, and I'm going to put in a sidebar with links to sites that have been helpful through all of this.

If I seem sarcastic or short on description/reactions, it is because I am. It is a lot of information to take in a short period of time. I'm still processing and reading and trying to feel out how to react to all of this. We are happy that it seems that she will be with us long-term. But when you have a child there certain things you take for granted (them laughing, talking with them, running, playing) that are now very much up in the air for Lily. It is a mix of emotions and grieving is definitely a part of that. I think I will post more about it later, when I am feeling more eloquent.

For now I am running on this quote from a podcast I listened to recently. The man telling the story had just found out his daughter, who had cancer, had reached the end of treatment and there was nothing else that could be done. At the same time, he was earning his living as a comic and had his first big break. He was falling apart until he heard a voice in his head tell him: "Man up! Life is not a sitcom. Things do not wrap up neatly at the end. This is the real s***." It isn't pretty or particularly well spoken but it reminds me that there are others going through much worse and we will get through this too.