Sonya Loves Her Doctor and Simon!

This past Friday we headed down to Baltimore for Sonya's bi-annual orthopaedic check up with Dr. Ain and a fun visit with her cutie Simon! The check up went relatively well with the small exception of her spinal issues. Before this visit we were considering just sticking with her OI specialist doctors at Dupont in Wilmington Delaware (closer to us than Hopkins by 2 hours). Well that all changed after we heard what Dr. Ain had to say about her spine. It turns out that Sonya's C1 and C2 areas have got a tad bit worse since her last visit. This is the beginning of kyphoscoliosis for Sonya. It's basically a combination of kyphosis and scoliosis, deforming curvatures of the spine. She does have several compression fractures along her spine in the L4 and L5 as well as T9 and T10 that were noted by her doctors at Dupont but they had not mentioned anything about her C1 and C2. Dr. Ain feels confident that there is no need for immediate concern over C1 and C2 just yet and we will just have to keep an eye on it. We will be going back to see him in another 6 months and we will be able to check it again at that time. If her condition worsens we will then start preparing for her first spinal fusion. I can't believe this has already started and that there is little to nothing that I can do to prevent it. We did get rid of her doorway jumper, excersaucer and bouncy seat and that's about all we can do short of keeping her from horseback riding, which is not in her future, so no worries there. Dr. Ain calmed my fears and assured me that he has worked on OI bones many times and that when the time comes for Sonya to have her spinal fusions and rodding surgeries on her arms and legs that he is completely qualified for the job! This makes me extremely happy because her ortho at Dupont is a bit old fashioned and believes in the bracing method, something that would end up being rather debilitating for Sonya, cutting her mobility down to practically nothing. He will not rod her bones! With bracing cutting down on her mobility, her muscles will weaken and weak muscles equal even weaker bones for person with OI making them more susceptible to breaks. I'm not sure if I had posted any info on rodding for OI kids before or not, but the majority of these fragile cuties get surgical steel telescoping (grow with the bone, not make the bone grow) rods to keep the bones from deforming with each break. When a person with Sonya's type of OI breaks, the bone does not heal straight, rather they heal bent, twisted or jagged. I can actually feel and see the bends in Sonya's arm at two locations from her ulna and radius breaks. It is a progressively deforming condition which will ultimately lead to life in a wheelchair very quickly and incredible chronic pain if the treatments of rodding surgery and Pamidronate infusions are not implemented. The protocol for rodding in OI kids is 3 or more long bone (anything that isn't a hand or foot) breaks within a year and it doesn't have to be the same bone that breaks over and over. Basically, a person with OI could break their right arm, right leg and left leg and there he/ she is, a good candidate for rodding. Sonya has broken 1 so far outside of the womb (they only count outside of the womb and her radius and ulna count as one because it was one incident), so only time will tell. Other than her change in the spine things are looking good for Sonya right now! She was very good for Dr. Ain as he examined her, as always! I think she really likes him and that makes it that much easier of a visit! I wish he was the one in the x-ray rooms with us, then maybe she wouldn't freak out and carry on like she does! She is just all smiles for him!


On to the fun part of our day.... Sonya loves her sweetheart Simon!!! Jenn and Simon met up with us at Hopkins after Sonya's appointment and the two of them were just so happy to be together again! Simon was all smiles for her! He has the best smile and I'm sure he gets whatever he wants when he flashes it! He played a "I'm going to be shy" front with Sonya and was caught giving her side glances and smiles! He was totally flirting! Such a ham! Sonya was in awe of him and watched him climb all over his mommy. Jenn is a very busy mommy, chasing him all day I'm sure! The two sweethearts shared the yummy cookies and freeze dried Gerber's Graduates yogurt puffs that Simon brought as a sweet present for Sonya. Simon even hand fed Sonya a few that he gave a kiss to before popping them in her mouth! How cute! Jenn and I even caught them playing footsies under the table (head over to Simon's blog for the picture which is so super cute, I missed the shot). I guess we have to watch out for these little ones! Jenn and I are not planning an arranged marriage, but these two are like PB and J! Ahhh young love!!!

I posted another short video of little Miss Sonya down below. Be sure to turn off the music so that you can hear her say a few of her words from her vocabulary of over 10 now. She is a bit camera shy at first and the part where I tell her she looks tired is just too funny. Even though she doesn't speak a whole lot yet, she understands practically everything now! Oh, and this week her favorite word is "NO". I think she uses it even when she means "YES"!