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.

Surgery tomorrow!

Good evening to all from the PICU at the University of Minnesota Masonic Children's Hospital! No worries... we are only here for observation as Gracie gets a medication to help her heart pump more effectively during surgery. Her leaky valves are still leaking (as expected) and her very cautious cardiologist is still playing it safe. Of course, we are completely on board with anything to maximize Gracie's safety during this procedure.


We had a surprise visit from our surgeon tonight, we certainly were not expecting to see him on Memorial Day! He came by to check on Gracie and answer any questions we may still have. Our nurses were certainly surprised to see him here and they said we must be VIPs! :)  We laughed but truthfully, that is one of the reasons we choose to continue come here for treatment. There has never been a moment when we felt like Gracie was not their priority. Even if they've needed to make a change or reschedule, it is always done with utmost care and consideration for the events that follow.


Gracie has a had a good day here in the PICU today. She has been spoiled and pampered all day. From having her toenails painted to eating tons of junk food in bed, she has definitely been enjoying the attention from all of the doctors and nurses who visit. Not to mention having her Mom here to baby her. She took a walk around the unit a little while ago, enjoying a nice stretch of the legs while she's still able to.


Surgery is scheduled for 1:30pm tomorrow (2:30pm eastern time) and Gracie will have to have nothing but clear liquids by mouth after midnight, so we are tempting to keep her up late and stuff her belly in the hopes that she will sleep in a little bit tomorrow. The staff here are on board with this plan and ready to protect Gracie from anyone who tries to bust in wake her up early tomorrow. We'll see if it actually happens.... stay tuned.  :)

And the worst blogger award goes to......

GRACIE'S MOM!!! (boo, hiss, *throw rotten tomatoes*)

Yes, here I am crawling back with my tail between my legs to dust off our poor little neglected blog. I have no good excuse, just straight up haven't gotten around to blogging. I hope our loyal readers (if we have any left!) will forgive me.

On May 8, 2011, we reached our 3 year transplant anniversary and Gracie is still doing wonderfully!!! Praise God!

She completed her 1st year of Pre-K and had a complete blast! She loves her teachers and friends, and we are thankful for the opportunity to place her in such a wonderful program. She will go back to Pre-K again next year and then when she is 5, we will enter kindergarten. Gracie has other plans, of course, and she plans to go straight to Kindergarten tomorrow. :) Needless to say, everyone at Westside Elementary is in love with her....not that they can help it, of course.

We are getting ready to head up to Minnesota for our 3-year post-transplant checkup. As always, we have a full week of appointments and tests scheduled with all of our wonderful physicians and we are looking forward to seeing everyone. This trip we will sadly miss our beloved Dr. Tolar (Mommy's forever crush), but we will be seeing Dr. Orchard in his place, and we aren't complaining about that. :) We dig Dr. O too.

We are definitely interested in hearing what all of our docs have to say, but we are especially interested in seeing how Gracie's growth is going to see if we will eventually need to give her growth hormone shots. Also, her hips and knees have been a little bit of a concern and we had originally looked at having surgery this summer, but the timing was just not good. I'm hoping to get a better idea of how necessary this surgery is in the near future, and make some plans. Last year, her hands showed the beginnings of Carpal Tunnel Syndrome, a common occurrence for Hurler kids, and so we're interested in seeing if its progressed any further, and what we need to do about it. Lastly, we want to talk with the pulmonologist regarding asthmatic-like issues Gracie seems to have occasionally when she gets a bad cold.

It will be a busy trip, and we are so excited that we will be able to spend a little bit of time with our Hurler friends Rylie and Wyatt who will be having their checkups too. :) And of course, we can't wait to see Jerry and our friends at the Ronald McDonald House who have always been so wonderful to us. We are also looking forward to seeing the brand new Amplatz Children's Hospital for the first time. We hear that it is totally amazing!!! Our friend Rylie's Daddy and I sat on a parent panel when they were planning the BMT unit and we got to weigh in on ideas and share experiences. Can't wait to see how it all turned out. :)

So that's all for now. I will try to be a better blogger while we are there and keep everyone updated on all of the appointments. We'll see how it goes.

The last picture is kind of old (from back in October), but Gracie insisted that we put this picture of her friend Pat on this blog post. :)

The Pox that Stole Christmas

Hi, All. Aunt Hys here again with a holiday bummer anecdote for you...

So, everyone was down in L.C. for Santa's big show, when Van, my 1-year-old son and Gracie's adoring cousin, who had been sporting (for several days) something that might loosely be called a "bumpy rash", but might have been a hyperactive flea, spiked a fever.

Nobody panicked. Gracie and her parents went home to hold their breath while I called the pediatrician. Verdict, bring him in to rule out chickenpox. Chickenpox!!!!

I hadn't thought of chickenpox.

In an HSCT family, this translates roughly to "Run for cover!" We were a thousand miles from our doc's office, so we were left with the local urgent care joint. So it was. I packed him into the car and thought all the way to the urgent care place about how I put off that chicken pox vaccine because we didn't want to expose Gracie to live virus, and, irony of ironies, I had by that action potentially exposed her to a very mean mother of a live virus in the rootin', tootin' intact-guns-blazing chicken pox disease itself.

We had a peripheral blood draw. (Fun!) And a sort of nebulous diagnosis of "Viral rash, may-or-may-not-be-chickenpox-so-go-stay-in-a-hotel-for-a-couple-of-days" and orders to come back on Christmas Eve for the "is you is or is you ain't chickenpox" appointment.

Hello Mr. ...-ist! Merry bleepin' Christmas!

Van remained in quarantine at Noni's house, riding the Tylenol rollercoaster. Gracie and her family remained on clock watch, waiting for Van's 24 hours fever-free. December 24th, I hauled him back in for confirmation that we were safe from the chicken pox. I was sure the doc would let us off the hook. Alas, the most I could get out of her was "It doesn't look like chickenpox, but it doesn't look like anything else either, so it still might be chickenpox. Here let me swab his throat for strep." The throat swab produced a gusher of barf the likes of which I've never seen, and came back negative to boot, but there was still the fever.

I'm calling it Grinchpox until somebody tells me different.

So Gracie had to stay home Christmas day, and it was the first Christmas in 30 years that we all missed Sarah. Sarah just smiled at all my futile apology, saying "It's all so we can have many more Christmases with Gracie, right?"

...And that's the important thing. Merry Christmas and Happy New Year to everyone!

Please forgive the lack of updates...

but the past week or so has been pretty crazy. We spent last weekend in St. Augustine for the Annual Kelly Family Reunion and we had a wonderful time. Gracie was an angel and she very much enjoyed all of the excitement, not to mention all of the fawning over her and how wonderfully she's doing.

Unfortunately, Mommy managed to pick up a nice cold while we were there and so after returning home we found that the inevitable happened... Gracie caught it. She started running a fever on Monday afternoon and it was off to the ER for blood cultures and a dose of antibiotic, just to be on the safe side. The next morning was our scheduled appointment at Nemours for a checkup as we continue Gracie's taper of anti-rejection med. While there, she received her follow up dose of antibiotic which is standard protocol for any fevers. We also discussed the appearance of a small rash on the back of her hand, and the spreading of a larger rash on her neck and behind her ears. While Dr. Joyce suspected eczema or just plain sensitive skin, we could not overlook a more ominous possibility- Graft-vs.-Host disease. The anti-rejection med that we are weaning off of is also the primary means of defense against GVHD, so with the suspicious timing of these rashes, we had to acknowledge the possibility of GVHD being the culprit. Therefore, the taper has been temporarily halted while we try and figure out why she has the rash. We were sent home with instructions to apply a topical ointment to the rashy areas for the next week or so and return the 15th for a follow-up. If the ointment takes care of the rash, then it is probably not GVHD. If not, Gracie will be scheduled for a skin biopsy so that they can see if it is really GVHD that we are up against.

Thankfully, her skin immediately began responding to the ointment and the rash is going away- and so are our fears of a future with GVHD. Also, her blood cultures so far have shown no growth of any funky infections. It seems to have been nothing but a viral cold and some random itchy rashy skin thing. With that good news, we have been given the green light to consult with surgeons at our upcoming appointment about getting Gracie's central line removed. We are so excited to be approaching this big step. No central line means a big step in returning to normal life. Gracie will no longer have something dangling from her chest as she has had for the past year. She will not be forced to sit still while its flushed on a daily basis. She will be able to be bathed more regularly without being subjected to a full dressing change immediately afterward where she must lie perfectly still with her hands held down so that she does not pull the line or contaminate the exposed entry point. She can be tossed in the air like most babies are without being afraid that the line might get pulled or otherwise compromised in some way. It will be yet another defining moment in Gracie's recovery.

We received word from Minnesota a few days ago that Gracie's enzyme results are back. Now this news is of the upmost importance because it is the reason we had the transplant in the first place. Remember, Hurler's syndrome is due to a deficiency of the enzyme alpha-L iduronidase in the body. The report states that she is now producing enzyme at a level of 58.2. This result is NORMAL. We are so pleased and proud that Gracie has officially trumped this dreaded disease. We are in no way out of the woods yet, but we are definitely moving in the right direction. We still must be very careful to prevent illness and infection as Gracie's immune system continues to recover from transplant, and we also need to continue to watch her engraftment staus to make sure that she remains fully engrafted with her donor's cells. It will be another good year or 2 before we can breathe easily. And while Gracie has beaten the odds thus far, Hurler's is an ugly disease that has lingering effects. It is not known what obstacles Gracie might have to overcome in the future and what limitations Hurler's Syndrome may have left her with, but we know our little champ will be ready to face them all head on.

With much love and joy.

Gracie steals the show!

As promised, here is the clip from the Minneapolis Fox news station where Gracie and her Dad and mouthpiece Mom had their cameo appearance alongside Kenechi Udeze, a Minnesota Vikings defensive end and fellow transplant recipient at the Celebration and Reunion.

If you keep watching, you can see Gracie flirting with one of our beloved doctors, Dr. Orchard, who heads up the Pediatric Inherited Metabolic Disorder division of the Blood and Marrow Transplant Program. He's a cool guy and Gracie always has lots of smiles for him.

Video Clip: Udeze's Mission

Read the news story: Kenechi Udeze Attends Benefit to Crusade for Bone Marrow, Blood Donors

Enjoy!

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.

Reflections...

Its not often that individuals get to experience they type of outward support and love that we have been shown since we began this journey. Our families, friends, and especially our church family have given of their time, talents, and hearts in a way that humbles both Jimmy and me. Although the road we are walking is a difficult one, we walk it with complete understanding of the support system that God has so generously blessed us with, and despite the hardships, we are so thankful to have had the opportunity to see love in such a tangible form.

This past weekend we celebrated with friends and family as they again came together to support us with a party and silent auction in honor of our Gracie. It was a night of fun and laughter, and Gracie was as charming and smiley as ever. Our girl has touched so many, but it is us who have been given true enlightenment. We could never begin to express our thanks to the many loved ones who have supported us through our ordeal, and our hearts remain full of peace and hope knowing that no matter what, we will be held tight in the arms of such loving comfort.

Thanks to all who love our Gracie and us.

heavy hearts

I'm so sad to tell you all that another Hurler Angel has gained his wings today. Liam lost his battle this afternoon and is now home with God and Hurler free.

Our hearts and thoughts are with the Larrow family. We hope that they may find some peace and comfort in this most difficult time.

Prayer request...

Ok, to all of our loyal prayers out there. Thank you all so much for your continued prayers for Gracie. Keep them coming, she is doing great.

I have a special request for our personal praying posse, would you guys please lift up our new Hurler friend Bella and her parents- Elizabeth and Charles- in your prayers as well. Bella is 15 months old, lives in central Florida, and was diagnosed last month. Right now her parents are battling their insurance company to cover her ERT treatments. Please pray that aresolution comes quickly and that Bella can begin treatment. As many of you know, every moment counts with this disease and they need to get started ASAP.

If you'd like to know more about cute little Bella, she is in our MPS links list on the right hand side of this page.

Thanks all.

News!

Gracie is growing up!

Just last week she cut her first tooth. I totally forgot to blog about it. (yes- it seems late, but Hurler kids get teeth a lot later than most... we were expecting to wait a few more months yet!) Its so cute. I wiggle my (clean) finger in her face and say, "you gimme that toof!" and she opens wide for me to feel it. What a silly little peanut.

Also, she's crawling. Not much, but enough to get her where she wants to be... which is usually on Mommy. This is a huge step because Hurler children also have less range of motion in their joints than most other kids, so crawling (which utilizes the shoulder joints a LOT) can be problematic or even painful. So while she's not really what I would call "mobile", she is crawling short distances and it seems to not hurt her at all.

Way to go Gracie!!!!

A Boxing Match On A High Wire

Testdriver here, posting from afar.

Gracie's Mom, Noodles, Noni and Muntz are all holding it together in Minneapolis and I'm here in Philly, a million miles away, with my two healthy, but likely plague-ridden babies, who are not allowed to visit immune compromised people on a BMT unit, and would probably not mix well with lots of tubes and cords and things that beep around, anyway.

From my phone updates, I can hear us collectively holding our breath. We're waiting, waiting, waiting for cell counts to creep up, waiting for fluid balances to normalize, waiting for meds on drips to be titrated ever-closer to Gracie's exact need for them. Gracie just got knocked down by the medical blow of a lifetime, and we're all holding our breath, watching her try to get her feet back under her, watching her reel and stagger, and imagining how her head must be spinning.

The balancing act that is maintaining Gracie's body's stability right now is really something to behold, a high-wire act like nothing you can believe.

It starts with a side effect of chemotherapy--immune suppression--served as the main course, in order to erase her body's ability to make blood and other fast growing cells, but that means wiping out ALL KINDS of fast growing cells (the reason chemo was originally developed and used in cancer patients--kills those fast-growing tumor cells) like the lining of the mouth--and the rest of the GI tract, the hair, the lining of the urinary tract, various organ tissues, everything.

So now that those cells are also compromised, there are new problems. Mouth sores are one very painful problem--mediated along with other painful problems--by narcotic pain medications. Narcotics, particularly in people as small as Gracie (easy to overdose a little baby) have to be carefully, carefully titrated, to avoid their own cascade of side effects, the most dangerous of which is respiratory depression. It's a delicate balance. She's gotta breathe.

It's also important to protect that urinary tract. If you can't make urine, you're pretty much sunk, so keeping the chemo from compromising her urinary tract function is extremely important. How to do it? Get that stuff through her body and out as fast as you can. To dilute it, she has to have LOTS of fluids through her IV, and then she gets loop diuretics to help her punch-drunk kidneys move all that fluid out. Sounds sensible and simple, but it's another crazy balancing act. If the diuretics are too weak, and she gets more fluid than her kidneys can manage, the extra fluid will back up in her blood stream and leak into her lungs (the "wet lung" we keep hearing about) impairing her breathing again. Too much diuretic and there is danger of her losing important electrolytes (like potassium) which are essential to muscular function, and importantly the function of her heart muscle. So, these electrolyte levels also have to be carefully balanced.

She gets an antibiotic drip, which prevents invading bacteria, or even her own native cultures, from growing out of control and infecting her immune compromised body. She continues to receive enzyme replacement therapy, which provides her with the critical enzyme until the donor cells can start growing in her bone marrow and producing enzyme on their own. I'm sure she gets much more besides, these are just the list we've discussed on the phone.

All this is to illustrate how absolutely miraculous the success of this treatment is for children like Gracie. It's a monumental undertaking for all concerned to maintain artificially these balances that, for most of us, nature maintains effortlessly. As the graft takes and her cell counts improve, Nature will take over again, where medicine is doing all it can to keep up.

I know it's starting to sound like there's an echo in here, but we are so grateful to everyone who's following Gracie's journey, and for everyone who thinks about her and prays for her, and loves her. We can't thank you enough.

"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!

ERT #7

Our 7th ERT was Wednesday and I must say, it was the best one so far. No mishaps at all, and the process went smoothly and much faster. We were really impressed. Gracie again did beautifully and she actually seemed to enjoy her dressing change. She stayed still and quiet through the entire process!

So despite our early experiences, it seems that Shands is finally catching up to our expectations. We had a nice chat with Dr. Kelly about Gracie's cord blood matches and upcoming transplant, and she is very confident that Gracie will do well. She is still very healthy and showing lots of improvement developmentally. She even brought Gracie a sweet teddy bear to play with. :)

Developmentally, Gracie is doing great. We're finally hearing some structured babbling- despite having no news from Early Intervention about speech therapy. Grrrr - I need to call them today. She's also sitting up on her own, playing with 2 toys at the same time, and trying to crawl and clap. We are so proud of her! She's still loving trying new foods... she's really taken a liking to papaya these days!

Anyway, we're slowly trying to gear up for our trip back to MN. I am excited to get going with Gracie's transplant while she's doing so well, but I must admit, I am not looking forward to being away for so long. :( I am going to miss our daily life here so much- our friends, family, and especially our church family are so important to us. I know that we will be well taken care of in MN, but as everyone knows, there's just no place like home.

Two More Cents

Here, now! Let me jump on the Shands Stinks Soap Box too, for a minute. You know I can never leave well-enough said alone.


It has been put forth in discussion that the Shands team may expect to get a "by" on blowing the coordination of Gracie's treatment, as they have taken on the management of her ERT as a "professional courtesy" to their colleagues at Fairview, who are going to pull down the lion's share of the cash from this cow by having scored the transplant itself. That idea makes my heart sink.


ERT may be a simple procedure, but it is no shave-and-a-haircut routine. After all, HSCT is also a simple procedure. The chemotherapy to prepare the patient is not revolutionary, either. It's the surrounding care: attention to the patient's inherent and precipitant conditions, and anticipating her evolving needs, that determines the difference between great care and substandard care. Someone who is experienced with Hurler patients and their families, and we are assured that this is what we are getting, would be hip to the reality of Gracie's parents' experience, their sense of urgency, and the degree to which they have become absolute hostages to the scheduling of Gracie's health care matrix.

This kind of ham-handedness is, I think, a symptom of a carelessness that, even in small things, cannot and should not be tolerated when the stakes are this high. It makes one wonder what other, less obvious but more dangerous slips might occur because something just didn't get done. It's an old and often sad tale. Little mistakes can cause big problems for vulnerable patients. Someone on this team really should acknowledge this openly to Gracie's family.

They really should.

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.

Gracie's Ready to Rumble

Sarah, Jimmy, and Gracie arrived today in Minneapolis and have the first meetings with doctors tomorrow AM. Please keep them in your thoughts. Sarah said Gracie is a great traveler and that she loved to fly. She was in a good mood and didn't fuss at all. Chris says it's because deep down inside, Gracie knows where she is going and is fully on board and ready to fight. We're ready in her corner....

In Chicago, we had some winter weather and my flight was canceled today. I hope to arrive tomorrow around noon.

The Mommy Speaks...

What does one say, do, feel when told that your daughter, your baby, your first child has a terminal disease? How do you keep moving when the world seems to spin out of control and your shoes are made of cement? How can you possibly believe that anyone in the world could have ever felt how you feel now or gone through such a terrifying ordeal? These are the things that whirl around in my head during my every waking moment and most of the moments that I should be sleeping.

Now I know the answer. You just do. You just go. You just move.

In my case, I was lucky enough to have a big push in the form of my 2 bossy, overeducated, and generally AMAZING older siblings. I know where to go, and I mostly know what to do. I have the opportunity to fight for my daughter's life and thats exactly what I intend to do. How fortunate am I to have a loving and supportive husband to join me in my efforts to thwart this enemy we call Hurlers. And with our army of family and friends we will go to the greatest of lengths for our Gracie.

Nothing about my journey with Gracie has been very easy, from conception it seems that we have dealt with one battle after another, but this bumpy journey has been filled with all the love and happiness that a mother could wish for. And as far as I am concerned, its not going to stop now.

With the help of the folks at the University of Minnesota, I intend to share a long lifetime of love and snuggles and smiles with my precious baby girl. My Gracie is a fighter, and so is her mom. So we will leave for the frozen north next week with fear, but mostly with hope that we can give our daughter the best life possible. That is what being a mother is all about.

born at the right time

Meet our baby Grace. Gracie is 7 months old and has been diagnosed with Hurler syndrome. Yesterday morning it was a death sentence; a family tragedy. Today, it is a staggering blow, but not one without hope. It is the beginning of Gracie's story, and it is quite possibly the beginning of a much longer and happier story than might have been anticipated in even very recent years.


This is not my story. My story is one of ordinary babies with ordinary problems, and one near miss. This is my sister's story. My niece's story. It is no near miss, but a direct hit, and yesterday, it set my sister's family reeling.


If there is a hero in Gracie's story, it is my brother. He is the guy who walks the walk. Within an hour or two of Gracie's diagnosis, he had found the only two programs in the United States specializing in Hurler syndrome, spoken to a research physician at the University of Minnesota (the other program is at Duke University), and scheduled a phone conference with a nurse associated with the Minnesota program.


In short, we are initially impressed with the people at Minnesota. The program as described to us, is comprehensive in its scope of treatment. They are ready to start working right away, as Hurler's is a degenerative disorder and time is of the essence. It is refreshing to have a shared sense of urgency with one's doctors, no?


And so, baby Gracie's first step into Hurler Syndrome will likely be toward Minnesota, and very soon. She steps into what is unfamiliar ground for just about everybody, and thankfully so. Had she been born at another time, she would face only a short, sad walk to the end of Hurler Syndrome.