Wednesday, July 31, 2013

So far, so good

Gracie has done very well so far. Monday was lab day, and thanks to the numbing cream, the blood draw was a breeze! We also got to see our BMT doc, Dr. Orchard. He was (of course) very impressed with Gracie and pronounced her "awesome!" But of course, we knew that. 

The rest of the day was filled with scans and X-rays which Gracie did with no trouble at all. At 3 pm, it was time for our big challenge... our first MRI without anesthesia. We were worried about Gracie's ability to remain motionless for such a long time, but as usual, she rocked it! She did so well, that she managed to cut the expected MRI time in half and she didn't even get to watch the full LaLaLoopsy video on the supercool video goggles she was wearing. We were beyond proud and she really impressed the MRI folks as well. :)

The best part about getting the MRI done like a big shot was that we got to cancel our Tuesday morning Surgery time and slept in! Yay! In the afternoon, we went to the Spine clinic to meet Dr. Schwender, a specialist in back issues for MPS patients. He commended Gracie on how clear her MRI pictures were and called her a rock star! He also told us that we should not need any kind of intervention with Gracie's spine as it has been stable since transplant and will likely not change as she ages. Great news!!

Today is a busy day with lots of appointments. Right now we are at the Research Center doing a Dexa scan and a few more tests for the Endocrine study we are enrolled in. Later we have our Neuropsych testing, followed by lots of appointments like Audiology, ENT, Pulmonary, Cardiology, and Ophthalmology. We'll be updating on those later. 

Please keep Gracie in your prayers... especially as we see our Cardiologist. We're hoping to hear that she has had some improvement in the size of her aortic root from last year. Fingers crossed.

Monday, July 29, 2013

First day of appointments

Here we are at our first appointment of the day in the Journey Clinic, which is the BMT clinic here at the Amplatz Children's Hospital. Next we'll have labs (note the numbing cream in the picture) EKG, x-rays, bone scan, and full spine MRI. Lots of tests that we'll hear results from as we go to all of our appointments through the week. 

So far, Gracie has charmed everyone as usual. We are so proud of her.

She is having her Echo done right now... Keep your fingers crossed for a good reading and positive results.

Sunday, July 28, 2013

Gearing up for another Minnesota Check-up Week!

Hello loyal Gracie fans! Long time no see! Wow, what a year its been!

This year has brought a lot of changes to our family- Mommy's new job at the VA, Gracie's Kindergarten year, and most importantly, the arrival of Gracie's baby brother Hank in January! We have had so much happening and it has all been good.

Gracie had a wonderful Kindergarten year! She loved her teacher and friends, and she did very well. Mommy and Daddy are so proud of all of the hard work she did. :)

She is also working hard at being a wonderful big sister, and her baby brother just adores her. They are wonderful friends and love each other dearly. We'll see how long that lasts. :)

We leave today for our 5 year anniversary check-up week. We are praying for all good news, especially in the areas of Cardiology annd Orthopaedics. Keep Gracie in your thoughts as she endures test after test, and full days of appointments. We are planning to do some fun stuff for the end of the week as reward for all of her hard work.

Stay tuned for our 2013 Minnesota adventure!