We arrived for our first appointment and sat in the waiting room for over an hour. My mom and the kids came with us because we were going to go to the Museum in between appointments. I should have known it wouldn't work out like we planned! We saw the genetic counselor. Nothing much was new there. I had seen a genetic counselor in Rochester, but only because I wanted a third child. Otherwise, we probably wouldn't have seen one! She wanted to talk a little about me and the kids and our history. She said even though I am not a carrier, there is still a slight chance that Caroline may be a carrier. I was a little confused because I thought since I wasn't, her chances of being a carrier was zero, but there is a slim chance she can be. When she gets older, she will have that decision to make...on whether or not she wants to be tested. The thing that gets me is that even if I were to get tested before kids, it would have shown that I wasn't a carrier, so look where that would have gotten me.
After the Genetic Counselor left, the PT came in. She didn't bring wonderful news (like we always got from the clinic at Strong). Brayden's heel cords and hamstrings are VERY tight. She said he is on the road to an early seat in a wheelchair. This was really hard to hear because we are no where near ready for that. Will we ever be though? Probably not! In order to keep him on his feet for as long as possible, we really have to start pushing the stretching. The problem is that Brayden fights us (and she even saw how he fights us so I was glad for that). Todd finally told him that if he doesn't stretch, he will be in a wheelchair. He said he didn't care. He does care, that's the thing. We are going to just have to make it part of our routine!
She showed us a lot of stretches to do at home. Some we knew and some we hadn't seen before. By that time, Brayden calmed down and we actually stretched him in front of her so she could make sure we were doing it right. Then she observed him walking, running, etc. The suggestion we were given? Serial Casting. She ran it by Dr. Wong and she agreed. Because Brayden's range of motion was limited, they feel serial casting is going to be a good thing for him. At first my heart sank, but after she explained it I think it will be a good thing. For those of you who don't know what that is, it is when they place his foot at a 90 degree angle (or however degree they can get it too) and then they cast it. Basically it is a nice, long stretch! After a week, they will take the casts off and stretch him, see if the range of motion is better and cast him at a better angle. He may have these on for 2-4 weeks (changed weekly). This made Brayden VERY upset. We told him we could wait til after the summer so he can swim, but he is afraid of starting 2nd grade with casts on his feet because the kids will tease him. He just breaks my heart! When we get home, I will call around and see what we can figure out.
The MRI showed minimal scarring on Brayden, but they thought it looked great! They checked his spine and hips. After we are done with the serial casting, Brayden will have to wear night splints (AFO's), which again just gives him a nice long stretch while he is sleeping. I tried telling him they have some pretty cool looking "night boots" and he said he doesn't care. :-( Again, something we will have to work on.
We decided to not meet with the counselor for the third appointment. We really have no need to yet, since we have a stroller to use on long distances.
We did a lot of waiting today. This was Brayden waiting for us to talk to the PT.Dr. Wong was really busy so she didn't have much time to sit with us to wrap up the appointment. We ate lunch and went to Pulmonology early hoping we could get done early and head to the museum. No such luck. We waited 1.5 hours for Pulmonology. See, doctors appointments can last ALL.DAY.LONG! Anyway, pulmonology said he looked great!
We will be going to Cincinnati every 6 months. We really appreciated all of the appointments we had and know that Brayden is in good hands! We went back to Newport, KY for dinner at Don Pablos aka "Don Queotes" as my mom called it! Here is a view from the balcony of the restaurant! Beautiful scenery!
We will be going to Cincinnati every 6 months. We really appreciated all of the appointments we had and know that Brayden is in good hands! We went back to Newport, KY for dinner at Don Pablos aka "Don Queotes" as my mom called it! Here is a view from the balcony of the restaurant! Beautiful scenery!
Caroline's newest trick..."SOOOOOOOOOOO big!"
After dinner, looking at the ducks and the boats!
Beautiful sunset!
We were going to take a trolley ride, but the guy was rude and told Todd he should eventually be brought back to our van. Then he said in an hour or so. Ummm, no thanks! So we started driving home and met this really nice guy! We went on a carriage ride that was WELL worth the money spent! He was so good with Brayden! Brayden was afraid we wouldn't all fit in the carriage so he said Brayden could ride up with him! Here are the boys petting the horse!
Caroline was a little intimidated!
Here is the whole family! 
Grandma and the kids!
Just the goofy boys!
Think I can drive this!?
Yep! He sure did! This guy taught Brayden how to drive and actually let him drive for a good half of the way! He said Brayden did an awesome job...like he had done it before!
Another beautiful view!And don't miss the video of Brayden driving! He was so excited! I have never heard him talk so much, but he sure had a lot to say to his new friend! This guy, like I said, was awesome! He told us next time to get in touch with him and he would take us across the suspension bridge to Cincinnati and into Covington! Brayden was so excited and held onto his business card to show Todd (who ran to get the van). What a great way to end a rollercoaster of a week!
(oh and don't mind me talking to Caroline about how she is stinky! We forgot the diaper bag in the hotel and she is on antibiotics. Yikes!)
No comments:
Post a Comment