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!

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.