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.

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.

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!

2012 Checkup Week

So again we are blogging on location in Minneapolis, for our 4 year check-up update!!! We got here last Friday (7/27) and spent the weekend doing lots of fun things before buckling down for all of our appointments this week. Friday night we went for a quick visit to the Mall of America where we picked up a truly fabulous pink hat that we have barely taken off since we found it. On Saturday, we went to the Como Zoo and Como Town and we enjoyed seeing the animals and riding lots of rides. Sunday took us to the Minnesota Children's Museum where we had a blast learning and pretending. Throughout the weekend, we enjoyed our stay at the posh Sofitel hotel where we practiced our worst french accents and just appreciated the gorgeous decor and big cushy bed. :)

Yesterday we began our appointments with Dr. Polgreen, our Endocrine doc, who is enrolling Gracie in a new growth study to follow the pattern of bone growth in children with certain types of MPS. It was a brief visit, spent going over the various scans and xrays required. Gracie was her usual charming self, and she really impressed Dr. Polgreen when she told us all what the definition of symbiosis is. :)  I wish I had a picture of the doc's face. It was priceless! We went on to a quick appointment at the BMT clinic for a history and physical before zooming over to St. Paul and the Gillette Clinic to see Dr. Walker, our Ortho doc.

I must admit, going to see Dr. Walker is always stressful to me. For the past few years, he has been warning us that Gracie would be needing some hip/knee surgery soon. This year I was really concerned that I would hear that the time had come. Thankfully, that was not the case- and we got the wonderful news that for now, her hips have stabilized and we can table the hip surgery discussion for another 2 years. Also, it appears that her knees are showing signs of improvement and may not need surgery at all. I was so relieved and excited to hear this news... it made for the end of a good day.

We also moved into the Ronald McDonald House yesterday evening, but we had to head to bed pretty early to prepare for our early morning appointment in Surgery.

This morning we were all up by 5am and we headed over to the hospital's surgery floor. Gracie is still so young, so many of her tests need to be done while she is under anesthesia. This morning she had an MRI, lots of blood draws, and a nerve conduction study on her hands to see how the Carpal Tunnel surgery from last summer worked for her. She went into the OR somewhere around 8am and we were able to see her in recovery by around 11:30am. She did great and tolerated the anesthesia very well. When she woke up, the first thing she asked me is if I remembered when Donald Duck was bitten by a baby duck on Mickey Mouse Clubhouse. :) Our girl was just fine and we had a good laugh with the recovery nurse.

From surgery, we took her to the cafeteria for lunch where she inhaled a chicken/cheese quesadilla! She was a hungry little monkey!

We headed upstairs to get an EKG, and then to meet with neurologist to hear the results of our morning tests. We were very excited to learn that her carpal tunnel surgery was a total success and that she has regained full conduction of the nerves in her wrists and hands. Woohoo! Her MRI looked great as well. Nothing concerning to report there which makes us very happy.

So that wraps up the first 2 days with nothing but good news to report so far. We have lots more coming up in the next few days. We start our day tomorrow with a visit with the opthamologist, followed by ENT, an ECHO and our cardiology appointment (another nail biter for me). We'll be sure to keep you all updated. Thanks so much for all of the thoughts and prayers.

Much Love.

The Spoils of War (aka RMH Bingo)

We won 2 games of Bingo tonight here at the RMH. Anyone who has played Bingo here knows that its a serious sport around these parts. We are so thankful to have scored these awesome prizes!!

Thanks so much to the Ronald McDonald House for all the fun and smiles they give to the families here.

Goodbye casts... Hello splints

So the casts came off today and Gracie's incision sites look great! Dr. VanHeest was very happy with the way her hands are looking, although Gracie was not happy at all. She wasn't really in pain, but when she saw her hands she completely freaked out! Poor baby. I didn't think about how scary it would look to her, just that she would be happy to get the casts off. We covered them up with bandages pretty quickly to calm her and then exchanged the bandages for a stocking-like thing to wear under the splints. Then a pink lollipop completed the calming process.

We then headed over to Hand Therapy to get our custom splints made. This process was pretty cool. The therapist melted a piece of plastic in warm water and then shaped it to Gracie's hand and arm and let it cool. She added the velcro straps to hold it on, and Voila: Gracie-splints! Pretty cool stuff.

Gracie will have to wear the splints for 4 weeks. Her fingers are free to allow for movement. She will need to work them a lot to achieve the maximum benefit of this surgery so we will be doing lots of therapy- both at home and with a hand therapist. We'll need to do Hand Therapy visits for 6 weeks. After that, we're hoping that Marcie (our OT at school) will be able to work intensively on our fine motor skills in order to catch us up.

That's the plan for now anyway. :)

We're getting ready for Bingo Night at the RMH! Woohoo! We'll let you know if we win!

A new day, a ZOO day

So today was a much better day for our girl, despite those pesky hand bandages. After a late breakfast, she perked up enough to attempt an outing to the Como Zoo, a small (but totally awesome) zoo and conservatory nearby in St. Paul.

We ended up having a wonderful day. Gracie really enjoyed looking at all of the exotic animals, eating tons of cotton candy, french fries, and rock candy lollipops. :) Then we hopped over to Como Town, a small amusement park in the zoo, and Gracie proceeded to ride several rides (even big ones!) despite her bandaged hands. I was so proud of her for being such a brave girl! :)

We have a follow-up appointment scheduled for Thursday afternoon, but that's the extent of our Dr. stuff for the rest of this trip. We'll find out then how long the bandages must stay on, and what kind of OT we should expect for when we go home.

I guess we really need to be attempting to come up with more day outings to keep our girl occupied until we leave on Sunday. :) Not sure what we'll do, but I know that we're probably in the right place to find out. We'll stop by the RMH program office tomorrow and see whats up. :)

For now, pictures from our zoo day.