Thursday, July 17, 2014

Entering the 4th hour of our Neuropsychology appointment

.... and I'm going to try to give you a quick update. Tuesday was a good day for us. We only had 1 appointment- orthopaedics with Dr. Walker at 2pm- so we spent the morning hours at the Minnesota Childrens Museum. This is one of our favorite activities when we visit Minnesota! This year topped them all since their special exhibit was of Thomas the Tank Engine and that is one of Hank's favorite shows! Needless to say, we all had so much fun that we lost track of time and were almost late for our appointment!!!

Of course, the Ortho appointment always makes me nervous. We have been talking to Dr. Walker for several years about Gracie's hips and eventual surgery to reshape the malformation she has. Gracie's xrays showed no change from 2 years ago, so her hips are presently stable and there is no pressing need to do the surgery right now. He did recommend that we do it by the time she is 9 or 10, so we are looking at trying for sometime in 2016. I'm not looking forward to it at all, but it is an impending reality that we need to prepare for.

So, while I wouldn't say that trying to narrow down a surgery date will count as "good news", the fact that her hips have remained stable the past 2 years is definitely great!

Stay tuned for pics from the museum!

Wednesday, July 16, 2014

Pictures pictures pictures!!!

Enjoying the plane ride to Minnesota.

At the Mall of America's Nickelodeon Universe theme park, riding the Choo-choo!

Gracie riding Swiper's Sweeper.

Hank and Daddy on Blue's Skidoo.

Gracie & Magenta.

Mommy and babies loving the carousel!

Daddy and kiddos riding the Balloon ride.

Mommy and Hank hanging with Blue while Gracie and Daddy ride rollercoasters!!!

Update from Monday's appointments

Hi Gracie fans! I'm taking a quick minute of waiting room time to update you all on our appointments so far this week.

Monday started with Endocrine- where we met with our sweet Dr. Polgreen for the last time. She is moving to LA to continue her research on MPS there. We will really miss her. :(  As for the appointment, we were pleasantly surprised to see that Gracie had a little growth spurt! Yay! This means that her thyroid medication has been working. We still are looking into the option of the growth hormone therapy, however we discovered that since Gracie presently makes a normal amount of growth hormone, the treatment will not be approved by the insurance company. Getting around that issue will be a challenge, but its possible. We will have to look into that with our endocrinologist at home when the time comes.

We visited the BMT clinic next for labs and a general checkup. While there, we ran into our favorite geneticist, Dr. Whitley and a group of student doctors who were learning about Hurler's Syndrome and transplant. Gracie took a few moments out of her busy schedule to show them how awesome she is before getting her EKG and then meeting with Dr. Wes, a new BMT doctor on staff. He's very knowledgeable and funny, and we liked him right away. He was very impressed with Gracie the rockstar, and after she gave him an impromptu performance of 'Let it Go' she received a round of applause and a hi-5 and we were on our way. We were sad that we werent going to see Dr. Orchard this week, as he was the attending physician on the BMT unit this week, but right as we were leaving the clinic, we ran into him in the hallway and gave him a big hug! Being the great doc he is, he gave his awesome patient a quick exam in the hallway. It was too cute. He sent us on our way with a big thumbs up and a promise to see us again next year. We just love our Dr. O!

We finished our day with an appointment with Dr. Bothun, our Ophthalmologist. This appointment was really, really long, as it requires lots of different visual tests and then dilation of the pupils for examination. Gracie's eyesight is presently 20/50 which is pretty standard when it comes to MPS kids. Dr. Bothun expects that it will remain pretty stable at this point and should not require any surgical intervention such as corneal transplant.  We will be attempting to wear glasses again, hopefully with more success this time. Gracie and I are looking forward to glasses shopping and getting some super-stylish eyewear.

I'm going to stop here and try to upload some photos in my next post. I'll pick up with yesterday's events later. Stay tuned!!!

Monday, July 14, 2014

2014 check ups!

Ok, Gracie fans- we are back in Minneapolis for Gracie's 6 year post-transplant check ups once again! We have spent the past 2 days here running around and having a blast in celebration of Gracie's 7th birthday (which was Friday). So now we have to buckle down beginning tomorrow and start our long week of appointments to check on our girl's progress. As always, we're hoping for all good news... and praying especially for continued improvement in cardiology & orthopedics.

We'll update again when we can. Thanks for reading!