Monday, August 5, 2013

We said farewell to Minneapolis today..

And we chose to bid our goodbye to the Twin Cities today with one last visit to our favorite new discovery of this vacation... Izzy's Homemade Ice Cream in St. Paul. Home of the Izzy Scoop. Yum-MY!!!



Oh man, this place is unreal. They have awesome favors that change on a daily basis, and the best part is that you don't have to choose just one! Each cone or cup comes with a little Izzy scoop of a second flavor! It's awesome! As a matter of fact, the first day we stumbled upon this amazing place, it happened to be their 13th anniversary and they were giving away an additional Izzy scoop in celebration. Score!



Is it bad to admit that we went there 3 times in 1 week??? Yes, it's THAT good.


So we say so long to Minneapolis for this year. As always, we loved being there, seeing our doctors, and spending the time together as a family. We are so proud of Gracie and all of the hard work she did this year. I know her docs are proud of her too. She is our amazing little girl who has overcome so much in her short little life. 

She is my hero.

See you next year, Minneapolis!


Sunday, August 4, 2013

A quick summary of the last few appointments..



Here is Gracie getting her MRI done on Monday like a rockstar!!! We're so proud of her.

Ok, so we really only have Endocrine left to report on. The news from the Endocrine doc was not really good, but it certainly was not a surprise to us. Gracie is obviously vertically-challenged, and her short stature is because of the Hurler's Syndrome. Over the past few years, her growth velocity has slowed tremendously and she is now in the 3rd percentile for her age in height. This is very common in kids with her disease. 

To start, her doctors have now started her on Synthroid to try and boost her thyroid to try and amp up her Human Growth Hormone production. We also are going to need to have a full HGH work up done in the next few months to determine if she will need to start the hormone injections. We are assuming that she will eventually need them in order to maximize her growth as best we can, however we certainly are not looking forward to the idea of daily injections. Poor Gracie. :(

There was a concern last year the she may be entering early puberty (God help us all!!!), and although the tests are not back yet for this weeks visit, the doc feels that this is not the case. I certainly pray that it isn't... We will be anxiously awaiting those results for sure!

All in all, that sums up Endocrine. That was definitely the worst of the entire week, and since we were expecting to hear most of it, we were prepared and it wasn't bad at all.

We then went to hear the results of Gracie's Neuropsychology testing. I know its no surprise to anyone to hear that Gracie is super smart. However, they did see some small issues with her attention span, and also with some minor anxiety, which you'll read about in a few minutes. There is nothing abnormal about these issues in Hurler kids... It's pretty common

One other thing though- Gracie was not able to see her orthopedic doc this week. This is concerning because he is the guy who will tell us when we will need to get hip surgery. Now for those of you who are unfamiliar, most Hurler kids require hip surgery while they are young in order to correct a malformation of the hip joints. This surgery is very difficult and of course, it is very hard on the kids. Dr. Walker has continually told us year after year that we will need to have this surgery "in a year or 2". Last year he predicted that she would need it probably at age 7. I am hoping that after he reviews this year's X-rays he will not tell us that we need it sooner. Please pray that Gracie's hips remain stable for the next "year or 2" again. I'd really like for her to be able to understand the surgery when she has it. And I'd also like to be more settled into my new job before this all goes down.

On to Friday! Friday's MRI was a total bust! For some reason, Gracie just flat-out refused to do it. After her 1st MRI, this took us by complete surprise. It was unfortunate, especially since it was specifically for a research study, but we just could not talk or bribe or threaten her into doing it. She was more anxious than I have seen her in a long time and it made me a little worried. I will definitely be watching her anxiety level more. 

So there are all of our appointments for the week. Mostly good news. I can handle that. Your continued prayers are of course appreciated. Please keep it up. We know that they're working for sure!


God bless!


Friday, August 2, 2013

Another MRI...

means that Mommy has a few more minutes to make a quick blog post. So, lets sum up the appointments we've had the last day or 2. On Wednesday, Gracie had a super-full day. She started at the research center with a Dxa scan and Biodex testing as part of an Endocrine study (I think we need a Biology cheat sheet for those tests) and then moved to a long appointment with Neuropsychology where they spend lots of time playing brain games and doing work to see how G is doing cognitively. After that we went back to the clinics for several appointment, beginning with Cardiology. 

So, remember I asked for extra prayers for good news in Cardiology??? Well, thank you for sending them because they worked! For the last year, Gracie has been on medication in an attempt to shrink her enlarged aortic root. The medication is working and there has been some reduction in size which is a huge relief for us. If it had continued to enlarge and stretch, she would be in danger of a rupture which would be very bad as I'm sure you can imagine. She also is showing some improvement in her leaky aortic valve that we've been watching for years.. that was a pleasant surprise as well. All in all, we are very pleased with what Dr. Braunlin had to tell us.

We moved on to Audiology and ENT. Gracie made another A+ by having some hearing improvement when listening to the low tones she was not hearing before. Yay!  ENT with Dr. Rimell was short and sweet as usual. Her ears, nose, and throat are fine.

Ophthalmology was another good appointment for Gracie. She is still farsighted, but does not require glasses. Her corneal clouding has remained stable. Her ocular pressure was high again this year, but Dr. Bothun feels that this is just a fluke with the measuring instrument since her actual visual testing went so well and is not indicative of any issues which would include increased pressure. He gave her lots of praise for how awesome she did with her testing and sent us on our way.

Coming up... Thursday and Friday appointments. 


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!

Tuesday, July 31, 2012

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.