Thanks to everyone who attended! Tuesday Dylann had her MRI. Her neurologist ordered this a few weeks ago just to be sure that there wasn’t anything congenital going on with her brain or spine to cause her joint issues. It was a little scary as she had to be sedated the whole time and it took over an hour. That being said, she did absolutely wonderful and I was told by her nurses that she was their most favorite patient ever.. can you hardly blame them? :) We got a call probably 30 minutes after we left the hospital from her MD telling us that her brain and spine look just perfect :). The only incidental finding they noted was that she only has 4 lumbar vertebrae. He said that most people have 5 but some do have 4 and some have 6 so it’s a find that means absolutely nothing. I will say that this probably isn’t going to help her in the height department since each vertebrae is 2-3 inches long when we are fully grown. With my genetics and a missing vertebrae… probably explains her 2% rating on the height chart LOL. Whatever, the images were just fine!!
This week she also had an appointment with a pediatric cardiologist. At her 1 year appointment she still had the heart murmur. Our pediatrician said he was not worried about but wanted to refer her to a cardiologist just to check things out. When I called I had hoped to have it this week since we were already going to be done there for another appointment and they made it work. They did an EKG and spent 5 minutes listening to her in different positions. He also said that her heart is just fine! He said he isn’t even going to do an ultrasound or ECHO cause it’s a classic case of an innocent murmur. They have X-rays that show the size is fine and her EKG had normal rhythms. He said that when listening it’s considered a vibratory innocent murmur and is just the blood moving around. He said they can come and go and that he has no concerns about her heart!
Then we went off to genetics for our annual follow up. She was also thrilled with Dylann’s progress. She said that the only thing left they could offer is the large genetic testing where they check all the genes. After a discussion we decided not to do that at this time. The bottom line is, she is sure that Dylann has nothing progressive after seeing her today and with the tests we have already ran. She feels that this large panel will only get better with time and that waiting would allow them to continue to enhance it. The only reason I think we might consider this in the future is that if Dylann decides to have children someday, it seems like she should be able to know whether or not there is anything that could be inherited and what that would mean. So, we have time to decide that and most likely will get more information the longer we wait. Dr. Dugan said she is not really convinced that it is anything genetic at this point and could have been just a small thing that happened while I was pregnant that caused a developmental disruption. She would like to see more arthrogryposis research be done prior to doing this extensive testing. She also said that Dylann is doing the best out of any child she has seen in her career with joint contractures and that it’s really a miracle with the increased range of motion that she has gained in her joints since birth. :)
Today Dylann went and got recasted. She is still looking a little better and they are continuing casting. Her left foot is still being a little stubborn but her right just keeps getting better. The appointment was just with the caster so the MD didn’t see her. At the next appointment with the MD early December the caster said we probably will be talking about when to do the heel cord release. Sounds like Dylann was able to bend her knees more today and move her left leg very deliberately at the knee and hip today which we hadn’t seen before!
Next week there are NO appointments!!! This has only happened one other time since she has been born and it was because we were in South Dakota! Happy Thanksgiving everyone!
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