In early June, we head back up to Delaware to Alfred I. Dupont institute to follow up with the Cohen's skeletal dysplasia doctors. We originally would not have been going back until this fall but we moved the trip up because the doctors wanted him to have an MRI no later than a year from his last one. And because they wanted to do the MRI in extension, flexion, and neutral to check thoroughly for foraman magnum tightening and spinal cord compression( common issues with some types of dwarfism). Because of anesthesia concerns and needing to do different positions while under anesthesia, we decided to go ahead and just mover up our appointment and do the MRI up there, where they are used to that type of MRI and comfortable with his needs and what they are looking for.
The trip started out a bit rocky as Cohen came down with a horrible stomach bug that just kept lasting and lasting. We kept thinking he would be better before we needed to head out but he wasn't. We planned on arriving in Delware on a Monday evening but heading to Durham on Sunday to drop Cort off their with his awesome Aunt Jessie and Uncle Sean. They were insisted that we come and they still keep Cort even though they were risking getting sick and we're so glad we did. Even though Cohen got sick right before we left on Sunday, he never got sick again!! And was all better by the time we arrived in Delaware. Thankfully, no one else got sick either!!
Our travels went well, especially since Cohen was still a bit tired and weak from being sick. However, we were traveling on Memorial Day and traffic was terrible. Our 6 hour trip from Durham, ended up an almost 10 hour trip!!
These pics were fore Cort...he loves tunnels...
We were able to stay in the Ronald McDonald House again which was great!! And Cohen did great at the hospital, even calmly waving to me as the doctor took him away. I haven't talked about this on here because I've been so behind but Cohen has been having MAJOR( and that's an understatement) separation anxiety so this was a huge deal and such a blessing. He handled the anesthesia really well and came out it, seeming rejuvenated even!! We wondered if he was maybe a little dehydrated from being sick and the IV actually helped him feel better. He LOVED the blue slushy that they had him drink before we left!!
You can see his blue mouth from the slushi in this one if you look closely...
His appointments with Dr. Mackenzie and Dr. Bober also went well. The MRI results came back with no compression or narrowing in any position. Things looked so good that they said we probably didn't need to even check again for 3-5 years, which was different from the yearly suggestion they originally made!! The other two things that were worthy of noting was that they said his hips are most likely going to require surgery at some point in the future. The ball of your hip is suppose to come off you femur at an 20 degree angle and his are more straight. We don't have an projection for when we might have to fix this but just a wait and see based on his development and pain level( we don't believe he is in any pain right now). The other big thing is that they are sort of giving him back his Odontochondrodysplasia diagnosis. You may remember, it was originally taken away because they located the gene and can't find it in Cohen, and because his teeth are not affected by it. However, they really feel like everything else connects so well, that most likely, as with many disorders, there may be more than one type of some variations even in the gene marker. Regardless, we still just keep on the path we've been on with Cohen, trying to stay a step ahead with his medical care since there is not a lot information out there even with a diagnosis.
They were happy with his development overall but would like to see him talking more - and so would we. He hasn't really increased his vocabulary at all since the first few months he started talking. We also continue to have problems with his eating - not chewing things properly, swallowing things whole. (We recently did a swallow study and our working on getting some more oral motor therapy to help with this - I'll do another post on more details with this).
Because we had been before and knew what to expect we were able to make this trip a little more fun and mix a little vacation like things in it!! We went out to dinner with Chris' cousin, Allison( who lives in Philadelphia) and some yummy pizza. I'm bummed we didn't get snap a picture when she was with us!!
We also went into Philly on our day off to the Philadelphia Zoo. We got to meet Melissa and Sonya, some friends we've met through blogging. Sonya has Osteogenesis Imperfecta, another type of dwarfism, and is just a few months older than Cohen. The kids had such a fun time and it was so great to meet them in person since we already feel like we know them!! Sonya's even cuter in person!!!
They weren't really in the mood for a picture but we gave it a try.....
Cohen loved the Merry-Go-Round
Sonya wasn't super sure about it...
On the way back home, we stopped in DC and enjoyed a fun, free( other than the expensive parking and food!!) day at a few of the museums. We went to the national history museum and the air and space museum. Cohen really enjoyed it. And we enjoyed a day of fun focused on him.
Our ride home went much quicker, though Cohen was a bit more restless in the car since he had all his energy back!! We drove to the Columbia(since Cort had been handed off to the grandparents for the weekend) and visited with family too. It was a full week for sure, an overall good trip, and we were excited to be back home!!
