A new year... part 1

So as 2010 has arrived and we've kept plenty busy. Gracie has been doing so well and has enjoyed an exciting holiday season. We attended 2009's MPS Family Conference last month for the first time and we really enjoyed it and learned quite a bit. The conference was held at Disney World this year so it was a pretty easy trip for us. We participated in a focus group for Genzyme (the company which provides the synthetic enzyme which Gracie received while being prepped for transplant), and then spent the next few days attending sessions specific to concerns that affect us directly- post-transplant issues, what to expect in adolescence for MPS kids, emerging research and treatments, and reproductive issues regarding testing and other options available for when we choose to have another baby- all very informative sessions. Gracie got to hang out in the provided childcare room while we attended these sessions and she really loved it. She really loves being around other kids, and we were really pleased that she took to the caregivers so easily. Never once did she cry when we left and I think the leaving was actually harder on us than her. This part of the experience has given rise to the idea of possibly putting Gracie in a childcare/school program soon. We're still thinking about it, and of course we need to be sure that all of her immunizations are up to date before she goes. Hopefully we can get that yucky business worked out soon and then explore some good options for her.

Also at the conference we were able to meet and spend time with other MPS families, which in my opinion was the best part. We got to hang with old friends like the Blancheri family and little Wyatt, and Danny Latham and his family as well. We met new friends too- I enjoyed spending time with Bella's mom, Elizabeth, Erica- an adult with MPS 1, and Brinley and L.B.'s moms- Mandy and Michelle, who after 5 minutes time felt like sisters to me. While the reasons we have been brought together are difficult, spending time with these people who know exactly what we're going through is such a comfortable and easy thing.

We spent the last 2 days at the Magic Kingdom and Animal Kingdom where Gracie succeeded in shutting both of the parks down. She rode a few rides and saw some wonderful parades and spent the day in the Animal Kingdom with our beloved "Aunt" Bee (aka Godmother Laurie) and just all-in-all really enjoyed ourselves. While some of the sessions gave us a hardcore reality check regarding obstacles to come, we still are so thankful for the successful transplant which saved our precious girl's life and we will face whatever comes with the same hope and determination, and with the unwavering love and support of so many loved ones.

Stay tuned for part 2- lots more to share!

hi.

Again, a long break in posting and with no reasonable explanation except that Gracie is doing great which leaves us with little to blog about! We've been very busy trying to get moved in to our new beautiful home and prepare for the holidays.

So far, we're living here, but we've been so busy that we haven't finished moving yet- and don't even get me started on Christmas. I am so behind! Hopefully we can get caught up soon and really enjoy this time with our families.

In more fun news, we leave tomorrow to head to Disney World for our very first MPS Conference. We're looking forward to meeting so many new friends and saying hi to a few we already know. And of course, this will be Gracie's first visit to Disney, so we're really looking forward to that part too. :) She has no idea whats coming and it will be interesting to see how she does with so much going on around her.

When we get home, Gracie's cousins will be here and the festivities will REALLY commence. I know we will all have a blast, as always. Just keep your fingers crossed that the GrinchPox stays away this year.

Much Love.

Sorry for the delay in updating...

...but Gracie's surgery went well. She ended up needing both the right and left sides done (there was a hernia in the other side, it just wasn't bulging out yet) so we have 2 little boo boos that we're watching heal. Other than that, Gracie is her normal self again, running around like nothing ever happened. Thanks so much for the prayers.

Much love.

Surgery.

Gracie's hernia surgery is scheduled for 9:15 AM on Monday morning. If you don't mind, say a little prayer for us. I hate putting her through procedures, but it has to be done. :(


Much Love.
xoxoxo

P.S.
We have a new Hurler friend in CO that we're following. Her name is Torie and she is a cutie. She's preparing for transplant now and doing ERT, but right now she's in the hospital due to some nasty infections in her central line. Please keep her in your prayers and visit her page and tell her hi. :)

http://toriebrady.blogspot.com/

No news is good news.

Well, we are still bustling along in normal life with Gracie and things are going well. Gracie has been picking up more and more words everyday, so pretty soon we expect to have a chatterbox on our hands. She is a busy little bee and is enjoying life and all it presents her. Mommy and Daddy have been working hard to get the new house all ready to move into soon, and Gracie helped by picking out her new room. Of course, its not the one that Mommy and Daddy had planned for her to have, but who could possibly deny her? :) She loves the new house, and its in a great neighborhood with lots of little friends to meet and play with.

We're getting closer and closer to Gracie's hernia surgery which is scheduled for Oct. 19th. Poor kid. We're told that she'll have a very short recovery time- good thing because Gracie is a bundle of energy these days.

Healthwise, other than the hernia we're doing great. Gracie is off all medicines and that is making everybody happy. But that means the time has come now to get Gracie back on her immunization schedule though, and Mommy is REALLY not looking forward to that. :( We'll have to be sure to have lots of ice cream and stuff on hand for afterwards, I guess. Just thinking about it is making Mommy anxious. Poor baby.

Pics to come soon. Thanks for checking in on us. Xoxo.

Has it really been so long?

Its hard to believe that over a month has passed since my last update! Well, Miss Gracie continues to be her awesome little self, and true to most 2 year olds, she is running her Mommy ragged! She is signing more signs than I can even think to count, and she is doing some good talking too- although we are really working on that part. She squeals (more like ear-splitting screams) frequently these days and I am considering investing in some earplugs. :)

Healthwise, she is still doing great. We are on a 3 month schedule for her follow up visits and she has had no problems as far as post-transplant status is concerned. Her hernia is still with us, although we have finally gotten scheduled for our repair surgery on October 19th, yet another month away. As it turns out, we will not be removing her ear tubes as we had hoped to do while she was already in surgery. Hurler kids tend to have some slight malformation of their Eustachian tubes and are therefore more prone to infection. Since the eustachian tubes do not finish growing until at least the age of 7, we have quite a ways to go until we find out what will ultimately be the result. Our ENT says that if the ear tubes should fall out on their own and we see no signs of infection, we can see how well she does without them, but he recommends not removing them right now. So, there you go. Gracie is also scheduled to kick her last post-transplant medicine by the end of the month and we are so excited! It just goes to show how far we have come from last year. We have so much to be thankful for.

In other news, we are hoping to close on our new house in a few days! Another exciting adventure!!! We are so thankful that our friends and family gave us so much support during Gracie's transplant which has enabled us to take this wonderful new step in our lives together. Without your help, we would still be buried under a mountain of medical bills. God bless you all and thank you from the bottom of our hearts.

Much Love.

All has been quiet on the Gracie front...

for the summer... until now. After a relatively easy summer, with significant reductions in medications and doctor visits, Gracie has thrown us for a loop, yet again. It seems that she has developed an inguinal hernia. This type of hernia is located in the groin area, and is causing much more concern than her ever-present umbilical hernia. An inguinal hernia can cause a portion of the intestine to become entrapped, which can of course be very dangerous. Gracie has an appointment with the pediatric surgeons at Nemours as soon as possible, meaning 1 week from now. Of course, I am not too happy with this situation as it will give me one week to stress out and obsess over this thing until I know when it will be taken care of.

We went to our local pediatric clinic yesterday, just to have a set of medically-trained eyes take a look it. It is definitely a hernia, and while we need to quickly get it repaired, it is not a hugely pressing concern. It is reducible, which means I can gently massage it back where it belongs. It is not hard, painful or red, and it reduces itself on most occasions. So far, it hasn't managed to slow Gracie down any either. Her bowel movements are still pretty normal, and she is still all over the place, as always.

I'll keep you all updated on how things go, however, I ask you all to keep Gracie in your prayers. Pray that this hernia remains as it is, and does not become entrapped or dangerous.

And in return, I will finally make good on a long overdue promise... PICTURES!

Gracie's 2nd Birthday!