Wednesday, July 29, 2009

One year neurology follow up

I just can't believe that one year has passed since our last appointment with Dr. Ness.

That only means that Addie has been doing wonderfully and our prayers for a seizure free child have continued to be answered!

I was looking forward to our appointment with Dr. Ness. I couldn't wait to update her on Addie's progress and I was very selfishly looking forward to finding out if Dr. Ness had seen any more patient's with Microcephaly.

The nurse set up the alphabet game so Addie would have a way to pass the time while we waited. Addie was more content to sit and play with her baby instead and didn't even make it to letter "B" before she was squirming to get back over to the table.

How often do you have a nurse/doctor do something like this for you while you wait in an exam room? We know how very lucky we are to have access to such a fabulous neurologist!

Addie did so well the entire time we were in the exam room. We had a bit of a wait, but sweet Addie was more than happy to examine her baby time and time again. She knows how to play doctor by having the baby say, "ahhh", looking in baby's ears and checking baby's tummy.

When Dr. Ness came in, she brought a med student with her. I can't remember a time that we have seen her without an intern or therapist or someone else with her. This is perfectly fine with me. Seriously, how often will these people get a chance to see a child with Microcephaly doing so well?

This poor guy that was with Dr. Ness looked absolutely petrified. I had a visual image of him sweating buckets and vomiting before going to the hospital that morning. He obviously did not want to be there. I figured he was probably forced into a neuro rotation and it had to be the very farthest away from what his actual specialty was supposed to be.

Dr. Ness asked him fairly quickly after entering the room to tell her what Addie's diagnosis is. The poor guy was speechless. Literally. After a few moments of silence, I told him that it was okay if he guessed wrong, that it wouldn't upset us. Still nothing....after a few more moments, he finally gave an answer. :) Bless the poor guy, he couldn't have been further away from the diagnosis....

I couldn't wait any longer and I started rattling off all these amazing things that Addie has accomplished in the past year. Dr. Ness stopped me and told me to tell this poor guy what I was told when Addie was born.

So I did...word for word.

I had no idea that Dr. Ness even remembered what I had told her about the previous neurologist or what that neurologist had said about Addie. I don't expect for any doctor to remember intricate details about Addie or anything that I had said to them. I was very impressed.


Addie was very content to show off her walking skills and walked back and forth between Dr. Ness, the stroller, me and the guy who I was certain was approaching full v tach by this time. I was so proud of her for cooperating! She let Dr. Ness examine her without fussing and she even showed off a little with her speech and comprehension!

See...Dr. Ness has never tried to put a cap on Addie's development, she is just following along with us in this wait and see world and I know without a doubt that she is here for us for anything that we might need.

The only concern that I addressed during the visit is Addie's distress in the car. Dr. Ness knows that this has been a problem since Addie was born. She readily agreed with me that she didn't believe it was a behavioral issue. The issues presented in the car are all neurological. She said what I had already figured, that Addie could be nauseous, dizzy, have headaches or even stomachaches each time she is in her car seat. It felt so good to have Dr. Ness back me on that theory. We are at such a loss of what to do to help Addie and even Dr. Ness didn't have any suggestions for us for our everyday car trips. She is checking into a few things, but there is no quick fix in sight.

It just breaks our hearts...

We have the all clear until next year! We won't have to go back for a visit...unless something happens or unless we feel we need to. Dr. Ness felt there was no reason to do another MRI right now. If concerns arise or new technology becomes available, then we will talk about further testing.

So, for now we just continue in our wait and see world and take joy in knowing that our miracle baby continues to beat all the odds!