Tuesday, July 19, 2011


It's been awhile since I've updated...Grayson has been keeping me quite busy!! In June we had the opportunity to take Grayson to Boston to attend SB Clinic there. The doctors were awesome! We were very impressed with their knowledge of SB and love for finding the best treatment. Since we had not had any bladder testing done in Florida, we were very happy that they did a VCUG study and urodynamics. The VCUG study revealed that he has level II reflux in his left kidney. Urodynamics revealed he has an overactive bladder constantly contracting and his bladder is tiny. =( We were very disappointed to hear this especially since we had been asking the urologist in Florida if everything was fine as far as his bladder and kidneys were concerned. He didn't want to do any testing unless there was a problem.  Well, honestly I didn't really like this approach which is what led us to Boston to see some of the best doctors in the country. They recommended we start cathing him and start Ditropan to relax his bladder. So, since we have returned we have tried cathing...unsuccessfully and have been waiting to see a new urologist here. Yep, it's been 6 weeks and we still haven't gotten in to see the uro. Our appt. is Friday...finally! We are taking the results from Boston and getting this urologist's opinion for treatment and hoping he can teach us how to cath.

We really, really also liked the neurosurgeon there! He agreed that since Grayson does not have hydrocephalus and is doing great physically that we did not need to do a sedated MRI at this time. We could wait till he was 2! We were very happy to hear this since our neuro down here was really pushing for it but we weren't comfortable sedating him for a MRI "just because". We did however get a Flash MRI done of the brain to make sure his ventricals were still stable. And thankfully they are! We have escaped the shunt!!!

Ortho, smortho...not our favorite part of SB. Grayson's hip dysplasia isn't improving a whole lot. While his hip is staying in socket, the socket is still very shallow. So he gets to stay in the hip brace a little longer. =( Also, his tibial torsion has not improved and the dr. said it is pretty severe  in his left leg. So we are now in new braces. I did some research online about treating ITT and found a brace called the "Wheaton Brace". So off to the ortho I went and home I came with a new prescription for the Wheaton Brace. The ortho dr. said this was our last option and if it didn't work he recommends doing surgery when Grayson turns 2. The Wheaton Brace seems to be a very good option. It keeps the knee bent at a 90 degree angle and puts all the torque onto the tibia not the knee or hip (which was the problem with our last braces with the thigh cuff). He only has to wear them at night and he can wear the Wheaton brace with his hip abduction brace. It is supposed to correct ITT in 6 months when worn at night. Fingers crossed!!!

Now on to some fun stuff! =) Since my last update, Grayson is a crawling machine and boy is he quick! I can barely keep up with him! He also started pulling to a stand a few weeks ago and is just beginning to try to cruise. He can take about 3 steps along the couch before stopping. We are just truly amazed at how fast he is progressing! We have even gotten him to take a few steps behind his toy walker (with our help of course)! All encouraging signs! 10 months ago I didn't believe he would be doing this well seeing as he functions at an L5 but our little guy continues to prove us wrong!

Here's a few new pictures:
Like I said, into everything!! This time he pulled the basket on top of him and trapped himself! Super cute!

Grayson LOVES climbing and sitting in his chair.

Again, into everything! This time its the dog food. This could be his most favorite thing in the house! Baby gate was a necessity! =)

Super cute in his giraffe hat. He never lets me put hats on him!

Standing and dancing to the music at his Leap Frog table. He LOVES that toy!

For all his hard work we rewarded him with his own kitten! He LOVES cats!!

Grayson and Yoda playing =)

A new favorite thing...standing in his crib tossing out his toys, pacis, etc.

Standing and pulling toys out of the basket

Getting his toys off the coffee table

As you can see he is quite mobile and really enjoying it! It seems like every time I turn around he's either standing or into something! And I LOVE IT!! So very proud of that little guy! We are very excited to celebrate his 1st birthday on August 2nd. Boy, did that year fly by!!