Friday, February 15, 2008

We made it home!

And in one piece surprisingly!

What do you suppose the Neurosurgeons first words were when she entered the room? " I'm not sure who scheduled your appointment here or why, unfortunately there isn't much I can help you with since I am a surgeon and this isn't my area of expertise." Arrrrrrrgggghhhh! Didn't I say that? Didn't I say I wondered why we were seeing a Neurosurgeon since they perform surgery on the brain?" I am so friggin pissed!

Anyways, we saw two different Drs. in that office. I explained to her what we know, and don't know to her. She examined B and told us that it looks as though the two sides of her body are different, the right side being bigger than the left. She noted that her legs are not only different lengths they are a different mass. She also felt around her collar area and said she wondered if there were abnormalities in her clavicle bone since it seemed to protrude. She asked if she'd ever had and echo done and I told her no that that was once of my concerns; if she has some "syndrome" that has yet to be diagnosed wouldn't they check all of her instead of only her head? She agreed.

Next we saw Dr. Goumnerova. She viewed the MRI and CAT scan images and said that her head is on the smaller side but not in the Microcephalic range so that is good I guess. She did say that her brain is abnormal and malformed and her corpus callosum is underdeveloped which means she does have hypoplasia of her corpus callosum. She also agreed she was hypotonic all over. I pointed out the narrowing of the front part of her forehead and she said she has some obvious frontal bossing which I explained that the Neuro that saw her here in Maine said it was because her brain hadn't developed as it should therefore it hadn't pushed her skull out. She just shook her head and said she'd like for us to see a craniofacial specialist. She also said that she could be having seizures that do not show up on an EEG. Thank you very much, cause I knew that! Grrrr.

So we will be seeing the geneticist a neurologist and the craniofacial specialist. The receptionist said he'd schedule those three appointments for us and would be in touch within the next few days. I am going to insist that her whole body be examined when we see the geneticist. I did some research last night and there are Genetic syndromes that affect the skeleton and I don't know if she has been tested for any of those types of syndromes. Maybe there is a problems with her bones, the bones in her legs are different, possibly her collar bone and it looks to be her skull as well. I'm also going to try and get a measurement of her arms to see if those also are of different lengths.

And we will be getting a GPS system. We got lost twice cause Mapquests directions suck, Dale was super ass cause he was driving and stressed out. The rain was unbelievable, it poured so hard that we could barely see anything. The highway speed was reduced to 45 mph so it took us longer to get there than it normally would. We just made it to the aquarium. We had to park in the parking garage which was $25.00 and then walk to the aquarium. By the time we got inside we were soaked. We paid $40.00 to get in and spent less then an hour there. Once we got to the hotel we were soaked once again cause we had to park behind the hotel in their garage. I was so glad to get settled and get my dry PJ's on. And man, I could never ever live in Boston. The traffic is insane and the drivers are so aggressive! I guess that is why we call them Massholes (Sorry Aunt Cindy). And I had to chuckle at our shuttle driver, he was a hoot. He just turned when he needed to turn, never waited for anybody to stop for him, they just force you to stop! And the pedestrians are fearless, I would be standing there all day before I dared put a toe in the street. They just walk across the road without even waiting for traffic to stop. It's crazy! Makes you appreciate Maine, that's for sure! The hotel was nice though. We were up on the 9th floor so the view was neat. It sucked trying to keep Devin out of things though, we will be bringing some outlet covers on our next trip. And note to self: bring a magic eraser so you can get the pen marks off of the bathroom door.

I'll try and get few pics up later today, I've got a ton of cleaning to do.


AnnD said...

Gah! How frustrating to continually be told: "We're not sure, we have more testing we want to do and while you are at that, we also want you to see this doctor and this doctor and this doctor."

Massholes....muhahahaha! I'll have to remember that one!

Minilegs said...

one step closer to learning more things. Glad you're keeping positive. You wouldn't like it here in AZ. People from all over the country and from foreign countries trying to drive...makes me insane! haha

hugs to Brooklynn

Jerinda said...

I agree with Melanie, you are one step closer. ((Hugs)) for all of you. This must be so hard!