Vanderbilt Update

Yesterday we went to Vanderbilt for Christian's 6 month check up before I get to the outcomes of that appointment I must first share with you a little something before the trek to Vandy.

Being the smart cookie that I am, I thought it would be a good idea to keep both boys out of school that morning and not give them their ADHD medicine. I wanted to make sure that it was in full force for the appointment and give it to them about 30 minutes before we left Jackson. Mind you Vanderbilt is about 2 hrs and 15 minutes from Jackson. Appointment at 3:0o. Ohh the many mistakes I make!


By say, 9:30 I was about to loose my cool. Fighting, arguing, spilling of milk X2, running after the cat..umm, yelling, fighting some more, a water fight, yada yada yada..... You get the picture. I knew I just had to hang on til at least 11:30. But I was clearly out of patience so with one (take a guess) screaming child at the door, I decided I had " important things to do" and was going to leave. Just as I got to my car, he went back inside, good and stay in..the whole neighborhood doesn't need to see your crazy self. I started to back out and he " re-appeared".....this time with a tube of toothpaste. What in the world? I sat for a second watching him in disbelief at what I was thinking he was going to do and what he actually did! He took that tube of bright blue Colgate and proceeded to " squeeze" the living daylights out of it...just like I'm gonna do you when I..oops, there I go again, telling on myself! So, out of the car I go, counting to 100 VERY quickly, and just as I reach him, ( the pile of toothpaste is rather large by this point) the front door opens and out walks Chuck. He took one look at Keaton and the toothpaste and me, and then I gave him the " good luck with that" look and went back to the car. Oh, Keaton got what he needed because when I got back to the house after my " errands", it was QUIET in the house...and why didn't you do something earlier??? ( referring to Chuck here, not me)


Ok, so I decided it might be best to dose out the meds...a round for everyone. On the road we go and medicine in full force. The rest of the trip went fairly well, other than getting off the elevator and as it closed I looked behind me and Keaton decided he wasn't getting off ! Too late, the door closed and bye bye Keaton... thankfully he returned back down without getting off on another floor!


So, now for the " update" on Christian's status. It went really well. This new dr is from Johns Hopkins and even worked at Cincy Children's (which is top dog for DMD). This is our 3rd time seeing him and every time we go, I like him even more. Our first appointment, he had this "bow tie" that he wore...funny I know, but it worked for him. This time he was in a nice suit..good job, (must have a misses). Anyway, we were evaluated by a Physical Therapist, which is something new that I think he started. Although we have PT in Jackson, we have never seen one at Vandy, so this was kinda cool. She gave us a few pointers, checked out his new braces, talked about " stretching exercises" and what have you and decided he was in good shape. We may need to look at certain "night splints" to help keep his feet from turning in and stretched sometime down the road..but for now, good to go.


Here is a picture of the PT showing us a way to stretch him. Since we just got a new set of braces, I now have him sleep in them so that in the morning, it goes right in with little stretching...save me some time, and you know I can use that !!!

Next Dr. Burnette. I had to ask..." Say Doc, do you want to be on my blog?" Bahhahahha, sure.

So, snap I did! Here he is talking to Christan about his wheelchair. He only uses it for long distant walking, and like at Vandy...the parking garage and crossing the streets and everywhere we have to go..it's just easier on him.


Next, Keaton acting good..just HAD to capture!

The next few pic's are of Dr. Burnett using his tool that can kinda measure Christian's strength. He has to push and pull against it. He does this at every visit, he showed a little decline, but nothing major...

another shot of the strong-man action...






Here is another picture of a "wedge" that is at a 20 degree angle that he made that can help in keeping kids with this disease stretched... say, anyone out there..can you make me one of these??? I'm afraid that if I leave this for Charles to do, it might be made with a muffler and rims...and a motor attached to it...

See, he can't even keep his feet all the way down... that is why this thing is soo good.

Anyway, overall...great check up. Dr. Burnette was pleased with how he is doing, next visit will be the " big one" again with a Cardiology exam to follow his regular check up. But this Dr, is really wanting to be "up" on the latest research and is even going to attend the PPMD ( Parent's Project Muscular Dystrophy} conference next summer. This is an organization that was founded by a mother of two boys with this disease... I can't even imagine having two son's with this disease. After we found out that this is what Christian has, we were terrified that Keaton might have it. But luckily, he did not. Anyway, this lady started an organization that funds research specifically for DMD. It is my best means of support for what we are going through. They have been truly an amazing organization to be a part of! I have met many parents that we each lean on for moral support...check it out if you want..parentprojectmusculardystrophy.com

Well, that about sum's it up...Here is a picture of Christian acting funny before he Dr. came in..he was trying to do a "wheelie" ... AND, Keaton in the background trying to figure out how to make the bed move up and down...