Tuesday, February 3, 2009

Let me Clarify

I think I might have scared a few people in my update about Arthrogryposis. When I talked to Dr. Burne at the Diagnostic Center, I asked her "So is arthrogryposis what we are looking at?" and she told me yes. In my head, I was thinking that she meant that we were pretty darn sure that was the case, and it was pretty well diagnosed.

I had an appointment with Dr. Luikenaar (my regular OB) and we went over the notes on file from Dr. Burne. Dr. Luikenaar is the greatest doctor for me. She eased my worries about the concerns and let me know that they could be caused by any number of things. She said that the baby wasn't moving as much as Dr. Burne would have liked to see, but that might be a one-time thing......"maybe the baby was tired, and had a long day and didn't want to move..." Dr. Burne included in her notes that there was an excess of amniotic fluid. The only reason that is a cause for concern is that some forms of arthrogryposis effect the tongue. So if there is more amniotic fluid than normal, the baby may not be swallowing correctly. Dr. Luikenaar said "sometimes that just happens, and there's a little bit more fluid, and that's fine." We also talked about how it's a really good thing that I am feeling the baby move around. Dr. Luikenaar said that's great, and even a little surprising, because it's so early to be feeling him move. But she did say to keep track and notice any changes or patterns so that if the movement fades, or happens less often, we might want to make note of that.

So there hasn't been a diagnosis of anything other than his club feet, and that he's a very stubborn little boy. What we are doing is watching him to see if any other symptoms of arthrogryposis or anything else come up. There are also a few neurological disorders that are associated with these feet/hand characteristics, but those symptoms won't show up until he starts developing (or not developing) certain skills outside the womb, such as eye contact, response to voice or noise, etc.

Just as a reminder, we did see some movement in my last ultrasound, just not as much as we would have liked to see. Dr. Burne, Dr. Luikenaar and I agree that having an ultrasound every month to check his growth and movement is a good idea. So I will definately have my share of ultrasounds by the time I meet this little trouble-maker of ours.

So I hope I didn't scare anyone about anything, and I just wanted to clarify and update on the newest information that we have.

I Love you all and thank you so much for all of your support. You're the best family anyone could ask for.


Torrie Nicholas said...

I think it's good to keep getting routine ultrasounds just to keep an eye on your stubborn boy!! :) It will help the doctors have a head start on what to expect and to help you out also. Thanks for the updates.

Bleu and Mickaela said...

That's the goal, to keep ahead of the game incase we need to start any therapy immediately.. they will for sure want to start the casting for his feet asap because the tendons and muscles are easier to manipulate when they are young. But if there are any other immediate needs, we hope to have that figured out ahead of time. love ya!