Friday, August 22, 2008

Be it ever so humble....

there really is no place like home.

We're here! So Miss VIP Gracie flew home in serious style via private jet on Wednesday afternoon. The flight was smooth and a short 3 hours. Gracie played and slept and watched Teletubbies and enjoyed a mask-less flight while Mommy and Daddy enjoyed plenty of legroom, large tray tables, and plush leather seats that recline all the way... wow! It was amazing. Thank you so much to our benefactors, pilots and friends who went out of their way to bring us home in such comfort. We are truly grateful for all of the care and kindnesses that made this come together for us.

As we approched the runway of Lake City Municipal Airport for landing, we were able to see a small gathering of people waving with a banner and balloons, and a fleet of Columbia County EMS ambulances with lights flashing to welcome us. At that moment my husband and I smiled together with tears in our eyes knowing that we are so blessed to have such a caring community here in Lake City. Our hearts could not have been more full than at that moment.

Gracie exited the jet and was greeted with smiles, tears, and cheers from so many of our loved ones and she, of course, smiled and showed off for this new adoring audience. :) It was a truly triumphant moment in her battle against Hurler Syndrome and I can't wait to tell her about it over and over as she grows up.

Here are a few pictures from our arrival.

Landing in our awesome ride!

Ambulances from Daddy's work with lights flashing just for us!

Pulling up to the hangar.

Here comes the Peanut!

What a bunch of crybabies! Gracie, Mommy & Daddy with Noni, Munts, and Mema. :) Gracie was the only non-crybaby.

The beautiful banner from our church family.

With our awesome pilots! These guys were amazing.

First steps on Florida Soil.

Our wonderful friends while they were waiting for us to come home.

I have so many more great pics from our arrival. I'll try to get a few more up soon.

We're settling in at home and trying hard not to let Tropical Storm Fay rain on our parade. Miss Gracie has been having fun discovering all of the "new" toys and stuff which has really been fun to watch.

She is turning into such a character.

More soon.

Wednesday, August 20, 2008

One Their Wa-ay-ay... Home Sweet Home!

Well, Fay or no-Fay, Gracie and her parents are supposed to be on their way home as I type.

They will be arriving at Lake City Inter-continental Airport this afternoon/evening. :) I have mixed emotions... I'm so so happy for them. It's hard to imagine Sarah being away from home for 4 months! But I'm worried about the weather, and I'm headed to Minneapolis tomorrow to pick up my Jeep (it has been there all summer), and was really really hoping to give Gracie and Sarah another hug and kiss before they headed back. Oh well. Getting home sooner is best for them. I know they are nervous, leaving the exceptional care team in Minneapolis, but they have contacted a doctor at Nemours in Jax who has a little bit of experience with Hurler kids.

Give them a warm welcome. And get rid of that pesky storm. I can't stand the thought of Fay welcoming them back to FL...

Uncle Mack

Saturday, August 16, 2008

Get out your rain sticks and start dancing...

Take a look at this.

That's the projected path of our friend, Tropical Storm Fay. Take a look at where she is supposed to be on Wednesday afternoon.... RIGHT ON TOP OF LAKE CITY. Grrr.

I heard from our pilot this morning and he informed me that if she continues on this track, then we won't be able to come home until Friday. Booo. Of course, if thats the weather we have to look forward to at home, I'd just as soon stay here a few more days anyway. The weather here really is beautiful. I know I will really miss that aspect of Minnesota life.

So shake your rain sticks and tell Fay to go elsewhere so we can come on home.


Friday, August 15, 2008

A multitude of angels...

will come together to fly us home on Wednesday, August 20th... only 6 more days!!!! Yes friends, you can take it from me, prayer works hand in hand with wonderful and caring friends who work tirelessly for a cause. In this case, the cause is Our Gracie, who will be flying home in safety and comfort in a private 7-passenger jet that has been offered to us, provided that we pay for the costs of fuel and the pilots. And so far, members of both our community and family have donated quite a bit to help cover those expenses. Jimmy and I are truly humbled by the outpouring of love, support, and generosity we have received since this whole process began.

Oh, I forgot to mention the best part! We will be flying home. HOME! Meaning that we will be landing in Lake City... no long car rides home! We'll be there already!

So to celebrate, a random array of Gracie pictures. Enjoy!

Tuesday, August 12, 2008

A bittersweet farewell...

Sadly, we had to goodbye to our special friends, the Hays Family- Lyle, Jade, and little Rylie. We've mentioned Rylie several times in our blog, she has been Gracie's transplant buddy, and she also has Hurler Syndrome. She was transplanted the day before Gracie and our families have walked this bumpy road together. To see them go was both a joy and a sorrow. We are so happy that they are finally home, but we miss seeing their faces each day and sharing news and stories.

We managed to snap a few pictures of the girls together, although you can all see how sad Rylie was to be leaving her friend behind. :) We promised them that we would try to schedule our follow-up appointments together so we can watch our girls grow and thrive despite this disease they share.

Our friend Rylie

Rylie and Gracie

Aww... Gracie is consoling her sad friend.

Our new friends, Jade, Lyle and Rylie Hays

Hope you guys continue to do well at home and we plan to see you in November.

Friday, August 8, 2008

Day +92 ... Tube in, tube out x 2

Ok, so we've made it to the 90's and we've had a few moments of excitement in the past few weeks.

So Gracie's eating situation has not improved enough, so this past Tuesday we decided to put an NG tube in to try and get her tummy stuff moving. Well, she got it in around 1 pm, and by 11 pm, it was out. Our girl did not like it at all. So Wednesday morning we head back to clinic with our tubeless Gracie and had them replace the tube. It seemed that she was tolerating the second tube much better, and so Wednesday night, Gracie had her first formula feeds through the tube overnight. I was delighted to see Gracie wake up on Thursday morning with a full tummy and the tube still in.

So on our blissful Thursday morning as Noni was packing to head back home, Gracie began to vomit. She vomited quite a bit of the formula she had gotten overnight, and then surprise.... she also vomited the tube. So out it came again.

It has stayed out this time, and our Doc has decided that Gracie is just not ready for it and she needs more time. So in the meantime, we will continue to try and get her to eat the regular way and we'll revisit this issue sometime next week.

Gracie ate the equivalent of a whole cheeto at dinner tonight, so at least I can say that she's trying. :)

We're getting closer and closer to coming home and I am so excited. Although I must admit that I will miss Minnesota... and especially the gorgeous summer weather. I laugh everytime the humidity climbs to 60% here and everyone starts complaining about how muggy and sticky it is. Too funny.


Saturday, August 2, 2008

Day +86 - uphill battles

So I want to thank everyone for taking up our cause and trying to help us find travel home. We're still praying that we'll have something private come through for us by early next week. If not, we'll look into a non-stop commercial flight and hopefully we can get upgraded to first class so that Gracie can be slightly more comfortable. We'll just see how it goes. Again we really appreciate everyone's efforts in trying to find us a better option. Its so heartwarming to know that Gracie is so loved by so many (us too!).

So on the Gracie front, we're still fighting the eating battle. She's definately more open to eating and she tries really hard, but the nausea is really tough to overcome. Our doctors ordered the fats to be taken our of her TPN last week and it seems to have improved her appetite a little, but she still isn't eating enough. We've decided to try a different tactic today and attempt to keep something in her belly all day. Maybe if her belly isn't completely empty, the food will stay down better. Here's hoping anyway. We go back for a weight check on Monday. If she's lost too much weight, then it will be time to discuss other options. :( I'll let you all know how it goes.

Thank you for all of your continued support and prayers. We're really looking forward to getting home soon and seeing you all again.