Moving right along...

Literally.

Words cannot express the pride and joy I feel, so I'll just share it with you this way.

In addition to this amazing progress, Gracie has been given a green light to prepare to head home to Florida! We're in the process of making arrangements to bring her home in about a week! We are so excited to have our little family back under one roof soon and we are so thankful for all of the prayerful support, as well as all of the amazing cards and gifts that served to brighten her long days.

Gracie will continue her recovery and therapy at home, with a goal of walking unassisted and ditching her wheelchair by the time school starts. Please keep her in your prayers as she continues working hard to regain her independence. We are so proud of all she has overcome and we are grateful to God for keeping His healing hand on this precious girl.

Much love.

They say that God never gives you more than you can handle...

...I wish he didn't trust me so much.

So, all has been well in Minneapolis. Gracie has been resting and healing at the Ronald McDonald House in anticipation for her first big follow-up appointment which is tomorrow. We are hoping to hear great news from Dr. Walker, clearing her to begin weight bearing exercises like standing and walking. We're also hoping to establish a timeline for bringing her home as well, so we ask all of our Gracie fans to be in prayer with fingers-crossed that Gracie does well at her clinic appointment and also her first therapy appointment which will be after she sees Dr. Walker.

Last week, Gracie's Noni and Munts surprised her with a secret visit to Minneapolis. They had a few really great days together, and they spent some good quality time without the rush of many planned activities. If you're curious to see Gracie's feeling about the surprise visit, allow me to direct your attention to the photo below.  :)

While Gracie and her grandparents were enjoying a special visit, Mommy and Hank were busy taking care of things at home. Noni and Munts recently had a stray cat adopt them, then deciding to bring her kittens to live with her at their house as well. Hank and I spent most of the week at Noni and Munts' house, aka "KittyLand" taking care of the new brood and keeping the peace. On our last night in KittyLand, Hank suffered a nasty fall out of the bed at 4 am and managed to break his arm. Hank's Official Diagnosis: Supracondylar fracture of the humerus. This spectacular feat earned us a visit to the local hospital, and then a nice ambulance ride to ShandsUF.. where they dropped the bomb that Hank would also need surgery to place pins in his arm to aid in setting it. I laughed in the doctor's face when she told me that was what was going to happen. My Official Diagnosis: Slight Fracture of Sanity. We ended up having a lengthy wait for surgery, 6+ hours after it was originally scheduled and my sanity continued to splinter. However, Hank came through it like a champ and managed to consume 4 red popsicles for a late dinner after it was all over. He certainly earned them!  We were released to come home the next day with a heavy soft cast that will be removed on Wednesday. The pins will be removed that day as well, so please pray for our baby boy as I suspect that it will not be a pleasant ordeal to remove them. Also pray for speedy healing- thankfully he is not in much pain and is ready to get back to being the happy-go-lucky clutzy boy that we know and love.

Please continue to be in prayer for our family. I tell this story with humor because that's my coping mechanism, but in truth I am kind of hanging on by a thread. On the other hand, I am so grateful that my children are both on the mend, and are not suffering like so many other children and parents may be tonight as I write this post. In spite of the difficulties we are enduring, we are truly blessed with each other, a supportive family, wonderful friends, an amazing church family, and generous and understanding employers. Not to mention the many friends- known and unknown- far and near who are praying for us and sending their good thoughts to Gracie through the mail. 

If you look at the big picture- my cup runneth over. 

But honestly, I'm just trying my hardest to hang on through this wild ride. Thanks for your thoughts, prayers, and many kindnesses. Much love.

All is well in Minneapolis!

Gracie has been enjoying her time out of the hospital and back at the Ronald McDonald House. She has made lots of neat crafts, visited with many volunteers, petted several therapy dogs and so much more! We are so thankful that such a place exists and that we are blessed beyond measure to be a RMH family! The House and it's amazing staff and wonderful volunteers are totally focused on the needs of the families who stay with them, and especially the kids who live day in and day out there- often shuttling to and from the hospital and/or appointments. Théy foster a sense of belonging, fun, and even creativity with the many activities they provide.

Today, Gracie participated in a play presented by the RMH kids. They performed Annie in a production especially for the families. Gracie played Cassie, one of the orphans. She did a great job saying her lines and singing and dancing (with a little help from friends pushing her wheelchair). Although I wasn't there to see it, the mere fact that she was a willing participant was enough to make me bubble over with pride. This kid won't let her recovery get in her way... Classic Gracie. It's no wonder she inspires so much love from those around her, she is truly a treasure and a precious gift from God. I thank Him everyday for such an amazing gift.

Gracie as Cassie in the RMH production of Annie!

Speaking of amazing gifts, I thought that our Gracie fans would like to hear this unbelievable news! Gracie got a chance to talk to the mailman yesterday, and he told her that she has received more mail than all the other families in the House combined! (FYI- the RMH houses up to 48 families at any given time!) We are both floored and humbled daily by the outpouring of support from both friends and strangers. We love each and every one of you who has brought a smile to our girl's face by taking the time to let her know that she's in your thoughts. Also noteworthy, Gracie has received mail from several foreign countries in addition to the many cards she's gotten from folks here in the USA- notably Thailand, England, Abu Dhabi, Dominican Republic, and probably a few others I've forgotten. That is truly mind-blowing to know that even people on the other side of the world are thinking of her! It's a reminder in these difficult times, in the wake of hate and tragedy, that this world is full of people who truly care for others... and that's our highest calling in life- to love each other. Thank you for loving our sweetheart. Much love to you all, wherever you may be. 

2012 Checkup Week

So again we are blogging on location in Minneapolis, for our 4 year check-up update!!! We got here last Friday (7/27) and spent the weekend doing lots of fun things before buckling down for all of our appointments this week. Friday night we went for a quick visit to the Mall of America where we picked up a truly fabulous pink hat that we have barely taken off since we found it. On Saturday, we went to the Como Zoo and Como Town and we enjoyed seeing the animals and riding lots of rides. Sunday took us to the Minnesota Children's Museum where we had a blast learning and pretending. Throughout the weekend, we enjoyed our stay at the posh Sofitel hotel where we practiced our worst french accents and just appreciated the gorgeous decor and big cushy bed. :)

Yesterday we began our appointments with Dr. Polgreen, our Endocrine doc, who is enrolling Gracie in a new growth study to follow the pattern of bone growth in children with certain types of MPS. It was a brief visit, spent going over the various scans and xrays required. Gracie was her usual charming self, and she really impressed Dr. Polgreen when she told us all what the definition of symbiosis is. :)  I wish I had a picture of the doc's face. It was priceless! We went on to a quick appointment at the BMT clinic for a history and physical before zooming over to St. Paul and the Gillette Clinic to see Dr. Walker, our Ortho doc.

I must admit, going to see Dr. Walker is always stressful to me. For the past few years, he has been warning us that Gracie would be needing some hip/knee surgery soon. This year I was really concerned that I would hear that the time had come. Thankfully, that was not the case- and we got the wonderful news that for now, her hips have stabilized and we can table the hip surgery discussion for another 2 years. Also, it appears that her knees are showing signs of improvement and may not need surgery at all. I was so relieved and excited to hear this news... it made for the end of a good day.

We also moved into the Ronald McDonald House yesterday evening, but we had to head to bed pretty early to prepare for our early morning appointment in Surgery.

This morning we were all up by 5am and we headed over to the hospital's surgery floor. Gracie is still so young, so many of her tests need to be done while she is under anesthesia. This morning she had an MRI, lots of blood draws, and a nerve conduction study on her hands to see how the Carpal Tunnel surgery from last summer worked for her. She went into the OR somewhere around 8am and we were able to see her in recovery by around 11:30am. She did great and tolerated the anesthesia very well. When she woke up, the first thing she asked me is if I remembered when Donald Duck was bitten by a baby duck on Mickey Mouse Clubhouse. :) Our girl was just fine and we had a good laugh with the recovery nurse.

From surgery, we took her to the cafeteria for lunch where she inhaled a chicken/cheese quesadilla! She was a hungry little monkey!

We headed upstairs to get an EKG, and then to meet with neurologist to hear the results of our morning tests. We were very excited to learn that her carpal tunnel surgery was a total success and that she has regained full conduction of the nerves in her wrists and hands. Woohoo! Her MRI looked great as well. Nothing concerning to report there which makes us very happy.

So that wraps up the first 2 days with nothing but good news to report so far. We have lots more coming up in the next few days. We start our day tomorrow with a visit with the opthamologist, followed by ENT, an ECHO and our cardiology appointment (another nail biter for me). We'll be sure to keep you all updated. Thanks so much for all of the thoughts and prayers.

Much Love.

The Spoils of War (aka RMH Bingo)

We won 2 games of Bingo tonight here at the RMH. Anyone who has played Bingo here knows that its a serious sport around these parts. We are so thankful to have scored these awesome prizes!!

Thanks so much to the Ronald McDonald House for all the fun and smiles they give to the families here.

A new day, a ZOO day

So today was a much better day for our girl, despite those pesky hand bandages. After a late breakfast, she perked up enough to attempt an outing to the Como Zoo, a small (but totally awesome) zoo and conservatory nearby in St. Paul.

We ended up having a wonderful day. Gracie really enjoyed looking at all of the exotic animals, eating tons of cotton candy, french fries, and rock candy lollipops. :) Then we hopped over to Como Town, a small amusement park in the zoo, and Gracie proceeded to ride several rides (even big ones!) despite her bandaged hands. I was so proud of her for being such a brave girl! :)

We have a follow-up appointment scheduled for Thursday afternoon, but that's the extent of our Dr. stuff for the rest of this trip. We'll find out then how long the bandages must stay on, and what kind of OT we should expect for when we go home.

I guess we really need to be attempting to come up with more day outings to keep our girl occupied until we leave on Sunday. :) Not sure what we'll do, but I know that we're probably in the right place to find out. We'll stop by the RMH program office tomorrow and see whats up. :)

For now, pictures from our zoo day.

R&R at the RMH

Gracie has been resting relatively comfortably at the RMH for a couple of hours now. She HATES her bandages, despite their snazzy colors, and she is super frustrated at not being able to use her hands. :( I really hate that for her. Her independence is so important to her.

So far, I have not heard any complaints of pain, but I am hoping to get her some Ibuprofen on board soon in order to get the jump on any breakthrough pain that might show up. Other than that, we're to keep the bandages clean and dry until Thursday, when we have our follow-up appointment with Dr. VanHeest.

So, let me backtrack and tell you a little more about our conversation with Dr. VanHeest when she finished with Gracie's procedures. I put a picture below of what the Carpal Tunnel is so you can see what kind of damage the compression of those ligaments can cause. Dr. VanHeest said that when she released the band of ligaments that was causing the constriction of the tendons and nerves, it looked as if there had been a rubber band there in that spot. There was an indentation left by the tightening ligaments in the tendons and learning this made us all (including the Doc) very glad we went ahead and took care of this problem sooner rather than later. Who knows how much longer she would have had function in those nerves, tendons, and muscles????

Her trigger digits were similarly identified. Dr. VanHeest found areas of the tendon sheath where it was obvious that it was catching and causing the triggering to occur. It was just a matter of cutting the sheath away to allow the tendons of the fingers to move freely. Trigger digits can be painful when attempting to straighten them, and as time passes they can become permanently contracted if left untreated. See below for an illustration of what I mean.

So that's what happened this morning. Gracie has really been a champ through the whole process. We are so proud of her.

Thanks for the prayers and love being sent out for us. We feel it enveloping us at all times.

xoxo.

Thursday already?!?!?!?

So we have been here in Minneapolis for something like 5 days already, and it has really flown by! We have been busy, busy, busy! Between the full days of appointments and then hanging with our Hurler friends back at the RMH, we have had little time for blogging. I'm going to try and catch up by giving a condensed summary of the appointments we've had so far, and anything that needs further explanation I'll address in a later post.

Monday-

Our first visit was to the BMT clinic where after a disastrous attempt at drawing Gracie's blood, we saw several of our old friends... most notably our BMT Nurse Coordinator- Teresa, and Dr. Orchard- one of our 2 beloved BMT physicians. They were so excited to see Gracie running around and showing off. They were impressed to see how big she is and how much talking she does these days. :) We spoke for a few minutes about the study that Dr. O still has in the works for doing the enzyme infusions post-transplant, but nothing was decided yet and once the study is up and running, we'll discuss it more.

Next we had several X-rays and a Bone Scan so see how her growth is going. We will get those results later today when we see the Endocrine doc, but this year G "took her pictures" like a pro. :) It was a nice change to not have to hold her down during an X-ray.

Then we hopped over to the Gillette Children's Clinic to see our Ortho doc, Dr. Walker. We were very anxious to see him and check out Gracie's hips and knees for her possible upcoming surgery. His report was better than expected. Her hips still need to be addressed, but it is not an urgent issue. He'd like to do the surgery sometime within the next 2 years, so we have time to make plans. He's actually seeing some improvement in her knees (YAY), so we're not really looking at doing anything to them unless we do the hips sooner rather than later. Overall, that's good news for us.

Tuesday-

Tuesday morning we went for an echocardiogram of G's heart. Again, she was well-behaved and relaxed she watched Strawberry Shortcake and listened to her heartbeat and watched the colors on the echo screen. All in all the test went well.

We left the echo appointment and went up to the surgery department to be sedated for our EMG (Nerve Conduction test- testing for Carpal Tunnel Syndrome) and the MRI of her brain and spinal cord. Unfortunately, there was a delay in the OR and we were stuck in pre-op for several hours. Gracie did not go to the OR until almost 1 pm, and she was so hungry and thirsty by that time that she was miserable. The procedures themselves took some time as well and we didn't see her in the Recovery room until almost 5 pm. Mommy was a little more anxious than usual after all that time, but Gracie recovered like a champ so we hit the Noodle place for dinner on the way back to the RMH.

Wednesday-

1st thing we had to do was an EKG prior to our Cardiology appointment. Unfortunately, Gracie did not have a good experience on Tuesday night with removing the electrodes for the heart monitor she had to have during surgery, so she was not happy with the idea of more stuff being stuck to her body. She loudly protested the EKG, but with the help of some Strawberry Shortcake, and a vivid light-up magic wand, we were able to get a decent reading.

Dr. Braunlin (the Cardiology doc) came in and let us know that we had some good and not so good changes on our Echo. However, she was quick to say that she had not been able to pull the Echo up on the computer herself and study it, so she didn't want us to worry yet. The good changes are that Gracie's heart walls have thinned more and look very good, and her Ejection Fraction (more on this later) remains unchanged at 36. Her EKG looked good as well, However, there is possibly an increase in the amount of leakage from her aortic valve, which is unexpected this soon after transplant. Her aorta itself seems to be larger than it should be as well. Dr. Braunlin assured us that she will check into it and make sure that we know what we're looking at, but that either way these problems do not need to be dealt with at this time. We need to plan for another Echo in 6 months at home at Nemours. In the meantime, Dr. Braunlin will look at our Echo herself and let us know.

We went to see Dr. Bothun in the Ophthalmology clinic next, and he was really happy to see how well our girl is doing. Her functional vision is very good, however she is still far-sighted (which we learned is not the the opposite of nearsightedness- we'll explain more about that later as well.) and since the issue does not appear to be correcting itself, we may want to consider getting her some glasses to help. It's not a requirement, but it could potentially help her eyes to correct the issue themselves. We'll come back to this later.

Thursday-

This morning we had our Audiology exam and visited with the ENT doctor, Dr. Rimmel. As it turned out, Gracie had a LOT of wax in her ears, so before we could take the hearing test, we had to get a good ear cleaning. Gracie was NOT happy with this, but we got it done, and the doc was able to get some big, yucky chunks of wax out of Gracie's ears. Imbedded in the wax that came out of G's left ear, we found her long lost left PE tube... turns out that it has been out of her eardrum for a while, making Gracie tubeless. So we did the Audiology test and G got a normal score. The doc came in and looked and pronounced that we no longer need our ear tubes. YAY! No more ear plugs in the bath or pool. Good news from ENT!

We're leaving now to see the Endocrine doctor. We'll report back as soon as we can.

Its been an exhausting...

but very good week.

We leave tomorrow to head for home and we are frantically packing and cleaning our room here at the Ronald McDonald House. I have lots more to update you all on regarding all of our appointments, but it will have to wait until we are back home and have a bit more time on our hands. Sorry to disappoint.

Please pray for safe journeys home for us and our wonderful friends.

Gracie needs a new pair of shoes!!!

Well, my time for blogging is short these days as I have discovered. :(

It turns out that the only time I have for blogging is late at night when I'm dying for a good night's sleep in a comfy bed. Since we all know that won't happen in a SleepNumber bed no matter what, here I am with a summary post of the last few days.

So I left off with Dr. Whitley on Monday, and after leaving his office we headed downstairs to get a chest x-ray and an EKG. Gracie screamed through the x-ray, but surprisingly, she napped during the EKG which was nice.

That was Monday. Are you tired yet?

Tuesday was expected to be a lazy day for us. Gracie had an MRI and Retina Scan under anesthesia scheduled in the morning and the afternoon free. Unfortunately, that was not how it happened. We arrived at the surgery wing at 10:30 am and we were quickly shuffled back to the pre-op area. We got to our room and looked around the corner to see Rylie and her parents whose surgery had been scheduled for 7:30am. They were still waiting. This was not a good sign.
Long story short, Gracie did not go into surgery until 2:30 and did not come out for almost 3 hours!!!! We finally dragged ourselves back to the RMH around 7:30 pm with an extremely grouchy and hungry baby and 2 worn-out and stressed parents. Yuck.

Today we hit the ground running yet again with an appointment with Opthamology, Pulmonary, and an Echocardiogram. After the Echo, we went to the rehabilitation center to see Occupational Therapy and Physical Therapy specialists and do some developmental testing. She did well in OT, but the PT was a little disappointed that Gracie is not walking everywhere yet. :( We promised her that we've been working very hard on it, and she said that its really her biggest delay right now. She also recommended that Gracie get some new shoes with hard soles to help stabilize her ankles and feet so that she can gain confidence and possibly have better balance. So after leaving the Rehab Center, and a quick trip up to 5D to see our special nurses from transplant, we hopped in the car and headed to Target to get Gracie some hard shoes.



Cute, huh?

And just for fun, here is a quick shot of Wyatt, Rylie and Gracie with their Daddies- Todd, Lyle, and Jim.



The kids have all enjoyed playing together when we have a chance, and its been so nice to have good friends here.

Tomorrow brings another full day of appointments, starting with another NeuroPsych evaluation. Also somewhere in there we have cardiology, orthopedics, and BMT clinic.

So far though, everyone seems to be happy with Gracie's progress- and aside from the PT issues, Gracie is looking great. :) We hope to continue to have great appointments and more good news to share.

I'm beat, I'll try to update more tomorrow. xoxo.

We're here!

Sorry I haven't posted sooner, but we're safe and sound in Minneapolis and having fun. We got to have a short but great visit with Uncle Mack and we met up with Rylie and Wyatt and their parents for dinner and a playdate yesterday evening. We'll try to post pictures soon.

More Later.

xoxo

Busy Busy Busy...

Well, our trip here to Minneapolis has been a busy one, and we really have enjoyed being here and seeing so many people who are so special to us. We've also had fun visiting a few of our special Minneapolis restaurants and favorite stores, and Gracie has charmed and smiled her way through every moment of it.

So for the important news...
Gracie's appointments on Thursday went very well. Everyone we have seen are just amazed by how wonderful she looks, how happy she is, and how much she has improved. Gracie's transplant doctor, Dr. Tolar told us that he is usually hesitant to say it but that Gracie is a true example of a successful transplant. My heart soared at that statement, and I could not help but to give him a huge hug and thank him incessantly. We discussed the next steps that Gracie will take, and provided her engraftment is still good and stable (we'll get that news in about a week or so) we will begin to start tapering her CSA (anti-rejection med) over the next 6 weeks or so, and we will also be able to have her central line removed in the next month as well. We are so excited!!!!
Gracie also had an appointment with her neuropsychologist, Dr. Bjoraker. This was another great appointment! We went through a few hours of assessment testing and it turns out that Gracie has made some huge strides in development since transplant as well. She has almost overcome the setbacks she suffered due to the transplant and she never ceases to try something new. We are just so proud of her and Dr. Bjoraker was really impressed with her progress.
We also sneaked up to Unit 5D to surprise our special friends who took such good care of us when we were inpatient. We were so happy to see 2 of our most special nurses, Carolyn and Jenny, and Gracie was happy to see them too! She gave Jenny some big snuggles and lots of smiles all around to everyone. We chatted for a few and caught them up on all of our great news before we had to let them get back to work. From the unit, we headed to the rehab center to visit with our friend and awesome speech therapist Mary. Gracie gave her a big hug and more snuggles and we shared with her how well Gracie is eating and babbling. Gracie even said a few "dada's" for her. Mary was so happy to see her Gracie and she was also impressed with all that Gracie is up to these days.
The next day we went back to rehab to visit with Susan, our physical therapist, and Gracie had no trouble showing off all of her motor skills- crawling, cruising, climbing, playing, pulling up... everything you can think of. Susan was also really impressed with how far Gracie has come in just a few short months.

Saturday was the day of the Blood and Marrow Transplant Program's 40th anniversary celebration and reunion. What a wonderful celebration!!!! We are so glad we stayed for it and we had so much fun. Gracie was great and I think she was the youngest transplant recipient present. She met lots of people, yound and old, just like her and Jimmy and I were both touched and inspired by the presence of so many survivors. We heard from the doctors who started the BMT program here at the U of Mn, and even from a Minnesota Vikings Football player who also went through a transplant here this summer... just like Gracie.
And wouldn't you know it, Gracie the celebrity and her mom and dad were on the local news here in Minneapolis last night! We hope to have a link to add here to the blog so you all can see, otherwise, we'll try to post the video here in the next few days.

We have lots of pictures to post as well so we will get to that asap. We'll be flying back home tomorrow and while we have had so much fun back in Minneapolis, we are looking forward to the many comforts of home.

Much love.

Safe and sound on our old stomping grounds...

We're back in Minneapolis and in the RMH. We met up with our friends Rylie, Jade and Lyle, and we also got to spend a little time with our friend Kam's mom, Kelli. We really enjoyed all the time we were able to spend catching up. There are not many people we know still here... its funny to be in such a familiar place with so many unfamiliar faces. I keep looking for all of my fellow transplant moms and Jimmy keeps trying to go to our old room. :) Too funny.

We have several appointments tomorrow and we're really looking forward to seeing some of our favorite docs and nurses in clinic tomorrow.

Gracie has been doing great and she's having a blast. She was following her big girl friend Rylie all over the place and she is totally enamored with her. We got some great pics that we;ll try to post tomorrow.

Sweet dreams from chilly MN.

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 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.

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.

xoxo

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.

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. :)

Day +80... in the home stretch- literally!

So, I can safely say that provided that we have no major medical events, Gracie and I will return home sometime around August 20th or soon after. Our final appointments will occur on August 18th and consists of the following: An MRI, X-ray, and Lumbar Puncture (Spinal Tap) under sedation, followed by a general checkup at the BMT clinic and then a visit with our Neurologist, Dr. Charnas.

So between now and then our prevailing dilemma is to figure out how to get home. Obviously we need to fly, however Gracie's fragile immune system makes us a little wary of flying a commercial airline. We all know how germy those planes can be! And I can't even bear to think about making Gracie wear her mask through a long flight and possibly a layover and then another flight. Ugh, poor baby. So, right now I am in the middle of contacting the many Angel and Mercy flight organizations to see if they can help us. They network with volunteer pilots with small aircraft and also large corporations with private jets and try to match them up with patients in need. We're really hoping that this will work out for us, so send out some prayers for an angel to swoop in and bring us safely home.

Gracie is still doing great and working hard trying to eat and with her physical therapy. She's definately making progress in both areas but its slow going. I am so proud of her for being such a trooper, even when she just doesn't feel like it. She is definitely an amazing little girl. So we'll just soldier on with the feeding, meds and physical activites and hopefully Gracie will continue to improve.

Much love.

Day +77 PICS!

Gracie continues to do well, have good counts, and has become increasingly more playful and active. All in all, she is doing well. Right now our challenge is eating, and its a tough one. She is really trying though, despite the nausea and what I percieve to be a lack of appetite. She likes yogurt and cheetos a lot! And she surprised us yesterday by finally drinking from a sippy cup! This is a huge accomplishment and a big step in the right direction. It means she is not only allowing the tip into her mouth, but she is sucking too. YAY!!!!

She's also getting a little hairy from the CSA (medicine she takes to prevent GVHD), so her eyebrows are getting a little bushy and growing together some... and right up her forehead. :)

Here are a few pics I snapped the other day while Gracie was trying to cruise (she's almost there!)... I think they turned out so cute. I hope you like them too.