We have a favor to ask...

our loyal and wonderful friends and fans.

Tomorrow, Friday, May 15th, is National MPS Awareness Day. In honor of the children who fight their daily battles with this disease, and also the ones who have become angels, we ask that you wear purple on this special day. A ribbon, a shirt, a pair of socks... whatever you have to show your support for those affected by MPS and their families.

For more information, please visit www.mpssociety.org.

Thank you and we love you.

Our special friend Rylie...

... is celebrating her first Life Day today!!!! Hooray Rylie! We love you so much, special girl! Rylie's parents put together a beautiful slideshow of her journey on their blogspot. Go by and watch it and congratulate our transplant buddy on her 1 year milestone!!!

http://www.ryliehays.blogspot.com

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.

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.

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.

xoxo.

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!

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.

So far...

our efforts to find travel via Angel Flight and other such charitable organizations has not been going well. Most of the Angel services only provide travel for up to 1000 miles. We are almost 1500 miles from home. Also, the other patient travel service organizations say that they are unable to help us because they don't provide one-way travel. They could have possibly helped with roundtrip travel, but not just to travel home. Its a bit discouraging.

In the meantime, I am starting to contact the airlines who have programs to help with travel for sick kids ( we'd still have to fly on a regular plane, but they help with expenses), but those resources have been taking a hit due to the financial status of most of the airlines right now. We're hopeful that something still might come through for us... you never know.

Besides that, Gracie is still doing great. Our main struggle is still with the eating issue, but she is really trying. They took the fats out of her TPN hoping that it might stimulate her appetite, but she's still not taking in enough food to sustain herself. We are continuing to work on it though and Gracie is truly blooming despite the difficulty. I am really so proud of her. :)

Yikes...

Has it been so long since I've posted??? Oops... sorry to our loyal fans for the long delay in updating. So, since last week, we have been very very busy. We still have all of our family here, although Aunt Hyster and her crew will be leaving us tomorrow.

We have had a wonderful week of celebration with our wonderful family. Once everyone got here, we planned a cookout in the courtyard here with another family that we have become close to. Nuvy made a special friend with their little girl, and those 2 have played the day away for a few days... and then parted with tears when Nuvy ad to go back to the hotel for the night.

We had a birthday celebration for Gracie and all of the rest of us who have late June/early July birthdays and we had a yummy cake from Ben and Jerry's.... mmmmmm. Our new friends here gave Gracie some wonderful gifts that she has been playing with non-stop... along with the gifts that Mema brought with her from Jimmy's family.

Mommy has been indulging in some much needed sleep while Daddy is here to pick up the slack. Mommy even had an outing with the Kelly crew yesterday to the Mall of America while Daddy and Mema stayed at the RMH with Miss Gracie, who sadly is not allowed to go to the MOA for a while. Uncle Mack, Mommy and Hyster all rode on the Spongebob Rollercoaster in the amusement park and then we all took turns riding with Nuvy on the kiddie rides. Lucky me, I got to ride with her on the Blue's Clues ride.

Today we had to head back to clinic for another round of blood draws. Her counts are holding steady at 7.8 WBC, 5.5 Neutrophils, and her platelets jumped again to 203!!!! Very exciting. We have an appointment with the doctor again on Friday to recap on how we've been doing so far. I hope for another glowing report. :)

Ok, so I owe lots of pictures since it took me so long to post, so I will definately work on it and you can see how well our girl is doing.

xoxox.

Another Florida Hurler Baby

Today I learned of another little member of the Florida Hurler Club. He is an adorable little 8 month old boy named Liam. He recently started ERT. Here is the link to his blog. There was also a TV news story on a St. Pete television station about Liam.

http://www.caringbridge.org/visit/liamlarrow

A late night/early morning post on Gracie's "Life Day"

So in 12 hours from now, Gracie will be getting her new stem cells from a donated umbilical cord. She will get a fresh chance at life. We made it this far. I am so glad to be at this moment in time. I am even more glad to stop pumping my poor baby's tiny body full of chemo and work on trying to get her healthy instead.

Of course we have a very long and very tough road ahead. Gracie will get sick, go bald, and really fight for her life as her body struggles to accept these new foreign cells over the coming weeks and months. We will still be confined to this room for at least another month and we will have to really try and keep Gracie comfortable and healthy... and do our best to keep ourselves healthy too. I have to admit it- I am so scared.

On the other hand, I am so hopeful for Gracie and for the chance to give her a real future. A long life full of ups and downs, highs and lows, joys and sorrows. A chance to experience the world, to grow up, to know love and friendship, and the simple pleasures of life- smelling the cleans scent of rain, dancing on her Daddy's feet, eating an ice cream on a hot summer day... These are my hopes for my Gracie.... an ordinary life for an extraordinary girl.

Dear Lord, hear the prayers of my heart and bless my precious baby.

"Pop Tabs"

One quick request.

You know those little metal tabs on the top of coke cans (they are "pop" cans in MN - silly yankees :) )? Well, please don't ever throw them away again! They are made of pure aluminum (the rest of the can is an alloy), and are collected by the Ronald McDonald House to help fund all of the many great things that they do. I have no idea where we would be without them. They deserve any assistance to ensure other families will have access to the same benefits.

Honestly, I never thought I could feel this way about a clown. They usually give me creepy crawlies. "My name is Mack, and I'm in love with a clown."

So save them at home. Put a little box in the kitchen of your workplace to collect them. You can turn them in at any Ronald McDonald House, and if there is no RMH near you, I believe you can simply take them to any McDonalds!

Thanks!

B - I - N - G - O

Tonight was the big Bingo night at RMH. It was a lot of fun, but Uncle Mack lost about $500! Just kidding.... It was cool, a great way to socialize a little while also collecting some good loot. :) There were a bunch of donated toys up on a table (enough for all of the kids to have at least 2), and this is a fun and fair way to distribute them.

They have a very sweet announcer with a bad microphone (everything that started with "thirty" sounded like she was saying "forty" and vice versa), and one of those ping-pong ball machines where the air blows the balls all around until one gets sucked up into the tube... It was just like watching the Florida lottery on TV when they first started the lottery back in the 1800s... Back when Uncle Mackie was a youngin'. After someone wins, they keep playing until 6 or 7 people have won on the same game, to ensure that everyone gets to say "B-I-N-G-O" at least once.

They played 5 or 6 different times with different objectives - the postage stamp, popcorn, blackout, etc. There was one game where she just called out numbers, and if she called your age, you won. They called "35" and Daddy won a prize. But Sarah and I really won that time because everyone at RMH now knows he's the oldest of all 4 of us. I don't think they had a "0" so there was no way Gracie was winning that time.

We won 3 times total, so Gracie got a new baby einstein dvd, an over-the-crib mobile that will hopefully help her sleep, and a bathing kit to have fun in the tub (she loves the tub). YAY!

After B-I-N-G-O we had to say good night to our friend Wyatt, and his mom and dad (Nicole and Todd). They will be going back home to Pensacola on Sunday, but chances are slim that we will see them again. We wish them well on the rest of their appointments, and hopefully Gracie, Sarah, and Jim will be able to catch them in Florida sometime once they get home. I love that when we were saying goodbye they called me "Uncle Mack." :)

Rylie (the one who had insurance troubles) was admitted to the BMT today. We saw her daddy, and could see the nervous excitement to finally have the ball rolling. She starts her chemo tomorrow, so will be tracking one day ahead of Gracie. We also have another RMH friend with a different condition who was admitted on Wednesday and started his chemo today, so 2 days ahead of Gracie. Another great thing about RMH, when you will be spending as much time in a hospital as we will, it's nice to know a few folks around you who are not on staff there. It will feel good not to be all alone.

Uncle Mack is heading back to Chicago tomorrow for a few days, but will return early next week. I imagine Sarah will be pretty occupied for the next several days, but she will try to update you all when she can squeeze it in. If not, I'll call and have her dictate to me so you all know what's happening. Tonight's goodbye was sad. Next time Uncle Mack will see Gracie she'll be in the hospital. When I left she was trying to help mom and dad get the video conferencing set up to talk to Noni and Muntz. Technical difficulties.

Oh! I also helped mom and dad change her dressing, and her rash looks MUCH better. In fact, you almost don't see anything. In other health news, the nurses took some snot from her the other day, just to check for any bacterial or viral infection (a cold). After 3 days the cultures still look clear, so she is healthy and in great shape!

Please wish us luck tomorrow and put Gracie on the top of your prayer list. Thanks so much again for the support.

Happy 9 months, baby girl!

Our Gracie is 9 months old today! We are busy busy busy packing and getting everything ready to go tomorrow. We will arrive in Minnesota on Saturday armed with one headstrong baby, 2 hopeful parents, and 4 suitcases stuffed to the limit with clothes and baby toys.

Gracie continues to do great. Wednesday was our last ERT at Shands and a sad goodbye to the wonderful team who worked with us. Kathy and the rest of our beloved nurses, along with Dr. Kelly, threw us a wonderful farewell party. They had set up our little area with lots of balloons, ordered pizza from 5-Star (YUM) and showered "their" baby with tons of fun presents. They also gave us a framed picture of all of us together to take with us to Minnesota so that Gracie will still have her nurses fighting over her. What a wonderful group of people. I must say, that while the Shands team had a rocky start, they pulled it out in the end and we must give the Shands BMT Team a big thumbs up and a lot of gratitude. We're looking forward to sneaking back to visit in a few months and surprising our dear friends. :)

Gracie showing her beloved Nurse Kathy how yummy a tube of Lansinoh is!

News!

Yup thats it. We're officially in the news. The local paper will be running a story on Gracie today. So all of our local fans can open their Lake City Reporters and read about us and our journey. For our non-local fans... I think it might be on their website in a few hours. http://www.lakecityreporter.com/ Here's hoping, anyway. Tony Britt was a kind and patient reporter, and I know he'll do Gracie's story well. I can't wait to wake up and read it.

On that note, its off to bed for Mommy who has a big day tomorrow of packing and finalizing everything.

xoxox

Turn off the waterworks!

Mommy is getting increasingly more emotional as we countdown the days to our departure. Reality has set in. Gracie and I are moving away from our loved ones for a significant amount of time. Not only that, but we will be entering a pretty scary type of environment. Hospital rooms, chemo, machines beeping all day and night... doesn't sound like much fun. But we will make the best of it and keep our eyes on the prize- a triumphant return home with a Gracie full of healthy, active, enzyme-producing cells! Our tickets are booked and let me tell you how hard I cried when I booked those one-way tickets to Minneapolis. :(
At least I can keep telling myself that Gracie will never remember any of this and find that comfort in even the worst of times. She's my little trooper, and she's shown such amazing grace (pardon the pun) in dealing with everything thus far. I just know in my heart that she will continue to fight this fight in her own special way. God bless her little fighter's heart.
On the upside, I am looking forward to spending some time with our Uncle Mack again though. :) He's always been a huge light in my life. (no blushing, Mackie!) What a lucky couple of girls Gracie and I are to have such an amazing family on both my side and Jimmy's!
Mema and Great-mema have been tirelessly making little tube tops to cover and hold Gracie's central line and I think Great-mema is busy working on a few fashionable hats for Gracie's bald chemo head as well. I can't wait to see them. :)

Matches confirmed!

We got word last week that our matches have been confirmed and testing is complete! They are ready for us to come back on April 14th. So, the plan is to go to MN on April 12th. I am so excited! Hopefully we'll be able to move into Ronald McDonald house immediately, but they stay pretty full so we have to make other arrangements for the first few days just in case.

Gracie has been doing so well. She's been such a happy girl and that makes Mommy and Daddy happy too. :) This week her cousins Nuvy and Van are in town so we've been busy doing lots of visiting and playing.

We had a wonderful Easter! I wanted to leave a pic or 2 of her in her beautiful BabyNV easter ensemble. So here they are.

Hope you all had a blessed Easter as well.

Ok, so a normal life update for our adoring fans

Gracie is a busy bee between all of our Dr. visits and infusions. She is currently a complete log roller. She can roll from back to front and front to back these days, so she rolls all over the place all the time. :) She also likes to roll onto her tummy and try to get her legs under her. Looks like she will be mobile pretty soon. So far the only progress she makes in that arena is to turn herself around, kind of like a hand on a clock goes around. Its pretty cute although she is easily frustrated at her lack of mobility right now.

She also can sit up completely unsupported. She's still a bit tippy, but for the most part she is getting pretty good at it.


New stuff- we got Gracie a new stroller for our return to Minnesota. Its way cool and around here we call it the Cadillac. :) Fancy contraption to the max! Gracie still has a bit of stranger anxiety, so I wanted a stroller that could have her face me or face out depending on how she's feeling that particular day. And as I looked for one, I realized that as simple as that requirement is, there are not many strollers that will do it. And those that do are pretty pricey. Well luck was on our side this past Sunday when on a whim we visited the local Home and Patio Show and saw that a baby store in Gainesville had a booth there. I spoke to the lady about my fruitless search and she pulled out this cool stroller that had an easily reversible handle and all-direction wheels. Cool stuff. She was giving us the demo and then she opened the canopy all the way and it seriously extends all the way down almost to the baby's knees! WOW! And with a light-sensitive baby like we have, that was a really attractive feature. It was still a bit pricey, so Jimmy and I decided to make another lap around the booths to think about it. The saleslady clinched the deal when she offered us a discount to take it off her hands right then and there. SOLD!

So far, Gracie seems to really love it. She seems really comfy in it and not anxious at all. We're all very pleased with the purchase so far. Now time will only tell if it can handle the snowy slush that will be awaiting us in Minnesota. :) You never know.
Here it is, the Bumbleride Flyer in Ruby Ruby. :)



Other than that, Gracie is just being Gracie. She loves jumping in her jumpy chair and pulling off her socks at every opportunity. She is enjoying trying some new foods... most recently pureed carrots and here are a few pics of her enjoying her dinner last night- pureed spinach and raisins. Yummy!




I'm strong to the finish, 'cause I eats me spinach!

ERT #4 today

...and I'm a bit worried. Gracie has had a cold for a week now and she sounds terrible. She's congested and stopped up and has this terrible hacking phlegmy cough. Its yucky. :( I hope this doesn't effect or delay her treatment today. I must admit, its a bit scary to hear her breathing be so noisy like this and those awful coughs. Breaks my heart.

Home...

We are so glad to be back home! Gracie is feeling great and we got a pretty decent night of sleep last night. FINALLY.

So I have to note here that my Gracie is officially a great traveler! She really loved flying! When we would take off, she would smile and her eyes would get so big. It was the cutest thing.

So since Uncle Mack keept you all updated about what we were up to in Minnesota, and Aunt Hyster did the clinical teaching of what we're facing with this disease and transplant situation, I am hoping to have a few opportunities over the next few day to sum up how we're feeling. Maybe the more emotional side of this journey we've begun. Since thats the part I'm most familiar with, the part I really know, I guess thats where I will start for now.

I hope I can keep the blog good and alive though... Gracie is definately demanding of most of my attention, but I will do what I can to keep this great blogging momentum going. :)

I'll begin with today. Now that we're home, I'm torn between feeling happy to be back with our family and friends, to anxious because we are still having to deal with and treat this disease away from our trusted and specialized doctors. That is a bit on the scary side. I'm still learning to properly care for Gracie's central line, and we're having to give her some antibiotic drops for her ear tubes as well. Things seemed a bit easier when we were in the frozen north, knowing that the hospital was right across the street full of doctors who know all about Gracie's condition and the particular weaknesses she has. That makes me that much more committed to keeping her line sterile and keeping her generally healthy over the next 2 months... so we can stay away from any other hospitals if at all possible. Fingers crossed.

Gracie is definately glad to be back home. She really missed her jumpy chair while we were gone and she's gotten in it at least 3 times in the 12 hours that we have been back. :) :) Its good to see her in there and happy... it seems normal. Like life before we started all of this.

We have lots of pictures to post from our trip and I hope to get them on here soon. Stay tuned.

And let me say again from the bottom of my heart: Thank you all so much for your love and support. Our families, old friends, church family, my BBB girls, the MPS families, even people we don't know... everyone who has come here and supported us and Gracie through this hard time have a very special place in our hearts. We are so blessed to have you all in our lives. Thank you, thank you, thank you.

Another day of Doctor stuff...

... on my Peanut's 7 month Birthday. :(



Happy 7 months, Sweet Baby Gracie. Mommy and Daddy love you so very much.