Tuesday, March 31, 2009


Gracie does not have GVHD!!!!!! Thank you, God!

The biopsy did confirm that she does have eczema which we had already assumed.

The plan is to begin tapering the CSA medicine starting on 4/15, Tax Day. I am so excited. It will be a slow taper because the CSA helps the eczema too and we'd like to keep from having a big flare up.

This is wonderful news and we are just so pleased that our little trooper has taken yet another big step forward. Go Gracie!!!!

Monday, March 30, 2009

Nemours tomorrow

So Gracie's surgery last week went beautifully. Her tubes were replaced and she had her biopsy. We also got the news that her hearing is perfect. Gracie appears to have no hearing loss whatsoever and her ears function normally in all aspects. What wonderful news! Yay Gracie!!!! Congratulations on your first A+ on a hearing test!

Tomorrow morning we head to Nemours for our regular check-up, and I hope to have news about her biopsy, and of course I hope for good news. Gracie has been such a trooper throughout this process, so I wish for her to be GVHD free so that we can head into a more normal life.

If it does appear that Gracie has GVHD, I'm not sure what the next step will be and when we will be able to begin weaning from the CSA medicine. I hope to have more to report back tomorrow. Until then, we'll be praying for good news and hope that you will too.

Also, while you are all praying, friends, please say a little prayer for our new friend Brinley. Brinley has Hurler's also, and he is in the transplant process and having a bit of a bumpy ride. Please also pray for his family who need to be strong and comforted right now.

Much Love.

Saturday, March 21, 2009

scooting along

Well, we're still going along our daily lives doing well. Gracie has managed to stay pretty healthy these last few weeks (knock on wood) and we've been busy.

On Thursday, we had our weekly early intervention with a few surprise visitors. Miss Rachel, Gracie's Developmental Specialist, was here as always. I guess I should start by saying that she visits us on behalf of the Early Steps program, but she is actually employed by the Florida School for the Deaf and Blind (FSDB). FSDB works with the Early Steps Program in specific cases and we are one of them. As most of you know, Gracie is neither deaf nor blind, but her diagnosis of Hurler's syndrome and it's effects on vision and hearing gives her automatic entrance into FSDB's program. So basically Early Steps has contracted FSDB to oversee Gracie's Early Intervention plan. Stay with me here...

So on Thursday, along with Miss Rachel's visit, we had a meeting with some people from the Division of Blind Services. The coordinator of the Early Intervention program referred us to DBS in order to make them aware of Gracie's condition and to have them help provide us with anything we may need to assist Gracie visually as her life progresses. We have no idea what will happen with Gracie's vision in the future, and the damage that she has now is permanent. Presently, she still has issues with bright light, particularly bright sunlight and camera flashes. As far as DBS goes, she doesn't exactly fit the general standard of the people who they provide service to, but again, it seems that her condition itself will allow her to fall under the umbrella of DBS and receive their services. We met with the Program Coordinator and also our family counselor on Thursday to discuss the purpose of DBS in Gracie's life. What I found most interesting is that they are both blind. The Coordinator is legally blind, but still maintains functional vision, and our Counselor is 100% blind- born with congenital glaucoma and having completely lost his vision by age 10. I was pleased to see how DBS not only supports the people they serve, but also provides them the opportunity to help others like themselves navigate the difficulties that visual impairment can bring. While I was expecting a mundane meeting outlining how maybe they can help Gracie once she gets in school, I was actually inspired by these men who were so excited to meet us and Gracie an offer us their services which could span Gracie's entire lifetime. It was a good day.

Monday brings Gracie's ear tube surgery and skin biopsy. While she is sedated, she will also have a special hearing function test that can only be given while she is sleeping. Gracie has had many hearing tests since birth and has yet to pass one. Most recently, she had a basic audiology exam, but due to her age it was just not pracitical and it was deemed inconclusive. This test will give us an idea of how Gracie's inner ears are functioning and it will let us know what, if any, hearing loss she may have. We're of course hoping for none, but many children with Hurler's suffer some kind of mild to moderate hearing loss. This test will tell us once and for all. I am anxious to get the results.

The skin biopsy is pretty important too, although lately we've been seeing Gracie's rashes get more red and become a little scaly. I see them mostly on her legs, ankles, and tops of her feet- which incidentally are the parts of her which rub on the carpet when she crawls. Very localized, not really spread in large areas. Coincidence? I don't think so. Looks like eczema to me, but we'll let the test results speak for themselves. We have a prescription cream that keeps it pretty controlled and Gracie doesn't appear to be in any pain or discomfort. I'm hoping to hear of no sign of GVHD and begin tapering off the anti-rejection medicine again.

Well, its pretty late and I think I've covered everything. We'll be heading to Jax bright and early Monday morning, we need to check in at 6:15 am and surgery starts at 7:30 am. Be thinking of our girl and pray for a quick and easy procedure and good test results.


Friday, March 13, 2009


Day +309
Can you believe that number! It seems only weeks have passed since transplant, but the days have slipped by quicker than I could have imagined. We are so thankful to be so far out from transplant and sharing all of these wonderful days with our beautiful Peanut.

Gracie continues to do well and stay mostly healthy (knock on wood) these days. She is still quite the busy girl and she is into everything. She's picked up a few more words, but the most notable one is "no". She uses it a lot. I'm sure you can imagine how this new development is affecting life here in the White house. :) Her pronounciation does lend a bit of humor to it, despite the frequency. She says it like "naw". Its really cute.

In even more exciting news, Gracie is well on her way to walking! She took her first steps last Saturday, March 7th! She can take about 5-6 steps at a time and we're doing lots of practicing. We are so excited to see her finally reaching this momentous milestone and we're hoping to see her really master walking over the next month or so. Of course, we say that now, but we'll see how we feel once she has us chasing her all over the place, right? I hope to post a video of her first steps here soon.

Wednesday, March 11th marked Gracie's 20 month birthday, and on that same day we received a wonderful gift of a family portrait session from the Make-a-Wish Foundation. A local photographer invited us to her studio (on her beautiful farm) and we spent a lovely evening playing and taking pictures. We meet with her again on the 30th to see the proofs. We are so excited and we appreciate both Make-a-Wish and Chontelle Brown of Cotton Blossoms Photography for giving us such a wonderful gift. We really enjoyed the relaxed way that Chontelle works and our session was so much fun. Feel free to check out her site, she does very nice work.

So for now, we're just hanging out and having fun. Gracie is scheduled for her ear tubes to be replaced on the 23rd and she'll be having a skin biopsy on that day as well. We're hoping to confirm that her rash is not GVHD so that we can begin to wean her from her anti-rejection medication again. Please say a few prayers for us as we have high hopes to be off this medication soon and begin living a more normal life one we reach our 1-year post transplant anniversary!