Friday, August 13, 2010

The ideal patient

Anna had two yearly follow-up appointments this week. One with her neurosurgeon, the doctor who closed her spine and revised her shunt, and one with her neurologist, the doctor who tracks her neurological development. Both doctors were so pleased with her development that she doesn't need to see them for another two years!

We really are so lucky to live in Boston and have access to some of the greatest hospitals and doctors in the country. Anna's neurosurgeon is well-known and has patients from out of state who come to Boston. There were two college students in the waiting area who both had had brain surgery. One was from New Jersey.

The neurosurgeon was a bit shocked (in a good way) with Anna's gait and ability to run. He brought the new neurosurgeon out of her office to observe Anna. The majority of children with this form of spina bifida cannot walk independently or need assistance, the most common of which is leg braces.

We've never been told exactly where the opening of her spine was. If you are online with other parents of SB kids, you will commonly see references to L5 or S1. We knew that Anna's opening was sacral based upon her medical records but that was it. When the doctor checked her back and scar, he commented, "Ah yes, that was a big lesion." So we immediately asked him if he could tell us what level it was at. He read through her records and estimated it to be L4 to S1/S2.

He debated having her go in for another baseline CT scan and whether or not she should have an MRI of her spine. I really didn't want her to undergo either procedure as she has already been through both but I can see why he would want them done. In the end, he decided that since she is doing so well and her last baseline CT scan of her brain was less than two years old, to hold off on those for now.

The only frustrating aspect of neurology is that we always see a new resident at each yearly appointment and the resident, as trained, goes through Anna's entire history. I don't see why they just don't read her records but, anyway, I don't remember when she sat up on her own or when she said her first word. Does that really matter now that she is more than three years old?

Anna was fantastic for both appointments. A little shy but she definitely warmed up for her neurology appointment and was answering questions while looking a book. Her neurologist said that she was such a great patient, he was thinking about not discharging her so that he could see her again each year. He also told us that she is very intelligent and should do well in school. That statement was based upon his observation of her answering and asking questions while looking at picture books.

It's funny because we were asked a lot this week by doctors and residents if Anna asks questions. Are you kidding me? That's all she and her sisters do now. It takes ten times as long to read a book to them because they ask 10 million questions on each page about everything and whenever I answer a question, they ask another question related to the answer I just gave.

I'll have to type out some of the questions they ask when I am reading to them because they are entertaining.

So all in all, the appointments this week were good except when her neurologist kind of dropped a bit of a bomb telling us that Anna has Chiari type II malformation, which is common with her type of spina bifida, but had never been discussed in great detail. So for now, we are keeping our fingers crossed that Anna continues to stay strong and healthy and happy.

Oh, I wanted to throw in that the resident today weighed and measured her. Anna is up to 26.4 pounds and is about 35 inches tall. Seeing that chocolate milk and ice cream are consumed in large quantities around here, I'm glad to see she's gained some weight.


BreezieGirl said...

I'm so glad her appointment went so well! What is the Chiari thing you mentioned? Would you mind going in depth a little about it?

Meg said...

Whoohoo! I say that good news deserves some more ice cream!! ;)

Sarah said...

Thank you both for your comments. BreezieGirl - I'll have to put that in another post. I was too tired last night. I'll definitely talk about it though.

Anonymous said...

That is good news. Did they really not know she had Chiari all that time, or did they just not want to tell you? Will they/have they checked Emily & Allie? Chiari and some other syndromes are associated with encephaloceles, but we didn't have an autopsy done on Caitlin, and nobody recommended having Julia tested for them, but I always wonder if I should.

Sarah said...

Hi Amy

No - Em and Allie don't need to be tested. Chiari is as a result of the spina bifida. I think 85% of babies born with Anna's form of SB have Chiari.