Tuesday, April 28, 2009

Good and bad news...

So lets start with the good news... Gracie is well and has had no issues to speak of since our last update. She has been busy as a little bee and keeping us on our toes, but as far as her health is concerned, we have nothing but good days to report.

Gracie is getting braver when it comes to walking. She still prefers to crawl most of the time, but she will walk between people or furniture with little to no coaxing. She's also taking many more steps at a time lately as well. We're expecting her to just get up and start walking around on her own soon.

We are keeping the eczema pretty much under control with some steroid cream and we are slowly weaning off of the CSA, but it will be a long and cautious road.

Gracie has picked up a few more words, but "no" is still at the top of the list. However, I think it will soon be dethroned as Gracie's most frequently spoken word as "Yo Gabba Gabba" pronounced "yoyoDabbaDabba" is quickly moving up the ranks. :) She loves that show.

In other good news, we got our pictures from our Make-a-Wish portrait session, and we are so pleased. We hope to have more done as Gracie grows and as we expand our family. Here are a few of our favorites.

Now, onto the sad news... we have been following another Hurler child very closely through their transplant in Minnesota and we are sad to say that he was unable to survive the complications of transplant. Little Brinley became an angel yesterday evening after a long and hard battle. His family is devastated and could use some good thoughts and prayers. His fight for life has continually reminded me that we are so very lucky to have Gracie still with us, and to treasure every moment with her. Please lift the Craig family up in your prayers as they prepare for life without their precious Brinley.
Also, please offer a few prayers for our friend LB, as well. He is also having a few complications while recovering from transplant in MN and we are praying for a speeding recovery for him.

We are looking forward to our upcoming trip to Minneapolis in 2 weeks and we can't wait to see our friends, Rylie and Wyatt. Sadly, we will not be meeting the Craig family as we had hoped, but we do still hope to meet LB's family when we get into town. Gracie has a full week scheduled, but we are so excited to learn that Uncle Mack will be flying in for the weekend when we first get in! We haven't seen him since Christmas, so we are really excited for our visit.

Much love.

Tuesday, April 14, 2009

Hi all.

We're just chugging along here in Gracie-land. We had a wonderful Easter with our cousins, Van and Nuvy, and Gracie has really loved having other little guys to play with. Maybe Aunt Hys can convince the elusive photographer aka Uncle Kent to give us some pics to post since Mommy and Daddy have not been taking many lately.

So far, so good on the health front. We are anxiously awaiting tomorrow when we get to begin our taper of the CSA med. Gracie had a follow-up appointment with the eye doc today at Nemours and she did very well. She's still not so cool with the whole "bright light in the eyes" exam, but the doc says the haze on her corneas is minimal and her vision seems to be normal. We're always happy to get good news.

In other news, Gracie has managed to pick up a bit of a cold thats been passed around the family, but it hasn't slowed our girl down any. She's getting pretty tough nowadays. We're spending more and more outside and she is just loving it. Managing the eczema can be a challenge, but we're working on it.

Right now, we're patiently waiting for our trip to Minneapolis to have our 1 year check up and we're making plans for a big trip to Disney World in December to attend our very first MPS conference! We are so excited to be able to plan this trip and we can't wait to meet lots of new friends and attend seminars about MPS and its effects on the lives of these kids.

Mommy has been stewing on and gearing up for a huge change in her life which has been inspired by Gracie. After we return from our trip to MN, Mommy will be going back to school to begin the Nursing program. It will be a long road that we will have to do in baby steps, but I feel that having gone through all we have with Gracie, I have a strong desire to give back the kind of care we received through our own process. Leaving Gracie will be the hardest part of it for me I'm afraid, but I know that she will be fine and that this will be a huge step for myself and our family. I am so thankful to have had experiences that have shown me that I can do things that I never thought I was capable of. Its just one of the many lessons Gracie has taught me over the past year.

Much love.