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.

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. :)

Day +664

Wow... look at that! We are at day +664 post-transplant. Sometimes I can hardly believe it has been so long since we were in our little room on Unit 5-D smelling the creamed corn smell of Gracie's new stem cells!

Gracie continues to do wonderfully of course and Mommy has been very busy with school which is definitely challenging and exciting. But it really has been a commitment and has taken me away from Gracie a lot. That part has been a bit harder than I expected. We're all being strong and working it out though and we know it will all be worth once December rolls around. :)

Mommy has Spring Break this coming week, but instead of resting relaxing in a warm, tropical locale, we are headed back to freezing Minneapolis for Gracie's big 2-year post-transplant anniversary! Despite the weather, we're really excited to be visiting with our RMH friends and of course our beloved docs and nurses who took such good care of our girl. We're sad to say that we will be missing our best transplant friend, Rylie, this trip, but we hope to see her next year, and of course we'll give knuckles to all the docs and nurses for her. :)

While we know that Gracie will continue to impress everyone up north like she always does, we have been wondering a bit about her hands lately- her fingers don't straighten completely unless we push them straight. Kids with Hurler's Syndrome tend to have lots of Orthopedic issues, and hands and fingers are at the top of the list, so while the issue didn't come as a surprise to us, we do want to have it looked at to see if we can prevent any further issues. Gracie will be having special testing done on her hands to see if we need to plan for any interventions to keep the problem from progressing. Gracie will also be having appointments with all of her regular specialists as well and we're looking forward to seeing how they think she's doing and if we're looking at any other problems right now. We know that she will probably need some surgical intervention on her knees and hips at some point, but we're hoping those will be down the road a bit.
So while we're really excited to show her off this year, we do have worries in the backs of our minds that some of her issues may have progressed. We're hoping for the best though, and we know that our folks in MN will guide us as we work through it all.
Please keep our friend Wyatt in your prayers for us, he is in MN right now and he is recovering from back surgery. We hope to be able to hang out with him, but he might be heading home by the time we get there. Either way, we pray for quick healing for Wyatt and a safe journey back home.
Please pray for our travels as well... we're flying out on Friday morning.

Much Love.

hi.

Again, a long break in posting and with no reasonable explanation except that Gracie is doing great which leaves us with little to blog about! We've been very busy trying to get moved in to our new beautiful home and prepare for the holidays.

So far, we're living here, but we've been so busy that we haven't finished moving yet- and don't even get me started on Christmas. I am so behind! Hopefully we can get caught up soon and really enjoy this time with our families.

In more fun news, we leave tomorrow to head to Disney World for our very first MPS Conference. We're looking forward to meeting so many new friends and saying hi to a few we already know. And of course, this will be Gracie's first visit to Disney, so we're really looking forward to that part too. :) She has no idea whats coming and it will be interesting to see how she does with so much going on around her.

When we get home, Gracie's cousins will be here and the festivities will REALLY commence. I know we will all have a blast, as always. Just keep your fingers crossed that the GrinchPox stays away this year.

Much Love.

Sorry for the delay in updating...

...but Gracie's surgery went well. She ended up needing both the right and left sides done (there was a hernia in the other side, it just wasn't bulging out yet) so we have 2 little boo boos that we're watching heal. Other than that, Gracie is her normal self again, running around like nothing ever happened. Thanks so much for the prayers.

Much love.

Surgery.

Gracie's hernia surgery is scheduled for 9:15 AM on Monday morning. If you don't mind, say a little prayer for us. I hate putting her through procedures, but it has to be done. :(


Much Love.
xoxoxo

P.S.
We have a new Hurler friend in CO that we're following. Her name is Torie and she is a cutie. She's preparing for transplant now and doing ERT, but right now she's in the hospital due to some nasty infections in her central line. Please keep her in your prayers and visit her page and tell her hi. :)

http://toriebrady.blogspot.com/

No news is good news.

Well, we are still bustling along in normal life with Gracie and things are going well. Gracie has been picking up more and more words everyday, so pretty soon we expect to have a chatterbox on our hands. She is a busy little bee and is enjoying life and all it presents her. Mommy and Daddy have been working hard to get the new house all ready to move into soon, and Gracie helped by picking out her new room. Of course, its not the one that Mommy and Daddy had planned for her to have, but who could possibly deny her? :) She loves the new house, and its in a great neighborhood with lots of little friends to meet and play with.

We're getting closer and closer to Gracie's hernia surgery which is scheduled for Oct. 19th. Poor kid. We're told that she'll have a very short recovery time- good thing because Gracie is a bundle of energy these days.

Healthwise, other than the hernia we're doing great. Gracie is off all medicines and that is making everybody happy. But that means the time has come now to get Gracie back on her immunization schedule though, and Mommy is REALLY not looking forward to that. :( We'll have to be sure to have lots of ice cream and stuff on hand for afterwards, I guess. Just thinking about it is making Mommy anxious. Poor baby.

Pics to come soon. Thanks for checking in on us. Xoxo.

Has it really been so long?

Its hard to believe that over a month has passed since my last update! Well, Miss Gracie continues to be her awesome little self, and true to most 2 year olds, she is running her Mommy ragged! She is signing more signs than I can even think to count, and she is doing some good talking too- although we are really working on that part. She squeals (more like ear-splitting screams) frequently these days and I am considering investing in some earplugs. :)

Healthwise, she is still doing great. We are on a 3 month schedule for her follow up visits and she has had no problems as far as post-transplant status is concerned. Her hernia is still with us, although we have finally gotten scheduled for our repair surgery on October 19th, yet another month away. As it turns out, we will not be removing her ear tubes as we had hoped to do while she was already in surgery. Hurler kids tend to have some slight malformation of their Eustachian tubes and are therefore more prone to infection. Since the eustachian tubes do not finish growing until at least the age of 7, we have quite a ways to go until we find out what will ultimately be the result. Our ENT says that if the ear tubes should fall out on their own and we see no signs of infection, we can see how well she does without them, but he recommends not removing them right now. So, there you go. Gracie is also scheduled to kick her last post-transplant medicine by the end of the month and we are so excited! It just goes to show how far we have come from last year. We have so much to be thankful for.

In other news, we are hoping to close on our new house in a few days! Another exciting adventure!!! We are so thankful that our friends and family gave us so much support during Gracie's transplant which has enabled us to take this wonderful new step in our lives together. Without your help, we would still be buried under a mountain of medical bills. God bless you all and thank you from the bottom of our hearts.

Much Love.

All has been quiet on the Gracie front...

for the summer... until now. After a relatively easy summer, with significant reductions in medications and doctor visits, Gracie has thrown us for a loop, yet again. It seems that she has developed an inguinal hernia. This type of hernia is located in the groin area, and is causing much more concern than her ever-present umbilical hernia. An inguinal hernia can cause a portion of the intestine to become entrapped, which can of course be very dangerous. Gracie has an appointment with the pediatric surgeons at Nemours as soon as possible, meaning 1 week from now. Of course, I am not too happy with this situation as it will give me one week to stress out and obsess over this thing until I know when it will be taken care of.

We went to our local pediatric clinic yesterday, just to have a set of medically-trained eyes take a look it. It is definitely a hernia, and while we need to quickly get it repaired, it is not a hugely pressing concern. It is reducible, which means I can gently massage it back where it belongs. It is not hard, painful or red, and it reduces itself on most occasions. So far, it hasn't managed to slow Gracie down any either. Her bowel movements are still pretty normal, and she is still all over the place, as always.

I'll keep you all updated on how things go, however, I ask you all to keep Gracie in your prayers. Pray that this hernia remains as it is, and does not become entrapped or dangerous.

And in return, I will finally make good on a long overdue promise... PICTURES!

Gracie's 2nd Birthday!

Naughty Mommy...

blogging without pictures yet again. Sorry all. I blame it on readily available technology. We now own 2 digital camera cards capable of holding thousands of pictures at a time. Therefore, the need to dump them onto my computer to make more room has decreased greatly. That and I'm just plain lazy. I do promise to post pics soon, you will not believe all of the wonderful things our awesome girl is up to these days.

So on that note, I want to announce that Gracie is officially off her anti-rejection med!!! This latest achievement came about last Tuesday, and honestly, I must say that I have really been enjoying not having to worry about meds every morning and every night. As of right now, Gracie has one medication (general antibiotic) that she takes on Mondays and Tuesdays only. It is a wonderful feeling to know that our daughter's life is inching closer and closer to what could be called "normal". :) We joined a weekly 2-year old program at the local library last week as well and Gracie had a total blast! She adores discovering new places and playing with other kids. Its such an amazing feeling to watch her with these children, playing and smiling and just being a kid.

However, we have recently discovered that Gracie's true love is the water. She cannot get enough of it! From the cold Ichetucknee Springs, to a friend's relaxing pool, and even the rain puddles in Noni and Munts' driveway- no amount is to small for Gracie to enjoy. She takes after her Mommy in this regard- when I was little I was known in our neighborhood as Sarah-fish. Well, our little Gracie-fish is giving me a run for my money these days. The squeals of joy and splashing hands and kicking feet make my heart smile in the biggest way. I cannot even adequately explain how the sheer joy bubbles up inside me to see her so happy and carefree. Her ear tubes presented a slight problem at first, but Gracie has learned to tolerate her ear plugs pretty well, since she realizes that wearing them means she gets to be in the water. :) Smart little booger. We're looking into seeing if we can get those pesky tubes removed in September, but thats still in negotiation at this point. We'll need to chat with quite a few docs before we're comfortable doing that, but we are holding out hope that maybe it will happen.

Gracie has picked up quite a few signs and a couple more words recently as well and she is walking full time. She has mastered standing up without assistance, and there is truly no stopping her when she gets going. We are truly so proud of her. She is still having Early Interevention services on a weekly basis, and her therapists are so delighted with her progress.

Saturday brings her 2nd birthday and we are so looking forward to giving her the BIG gift. We got Gracie her very own playhouse, pink and purple with a little table, a phone, and working doorbell. I can hardly wait to give it to her!!!

We hope that you are all doing well and we so appreciate your continued prayers and support. Our Gracie is the true definition of a miracle and we know that each of you have played a huge role in getting us this far. So thank you all for loving us and our girl so much.

xoxo

Hi all!

Well, Gracie continues to do well, although her eczema is still giving us a bit of trouble. Of course, there are worse things to deal with as we well know. She is happy and walking all over the place, which we are so happy to see. And we're hoping to soon be reporting that she is speaking more and more, although it appears that we may have to wait a bit longer for that. She is still saying words she knows and signing enough to get by for now. Hopefully, we'll be on the road to talking more soon.

We are continuing on our slow taper of Gracie's anti-rejection medicine and hope against hope to be completely off of it by the end of this month. This will officially remove the immune suppression from Gracie's health profile and allow for more interaction with other kids. I'm really looking forward to getting her more socialized and we're even beginning to consider possibly putting Gracie in a part-time 2 year old program (if we can find one we like) or attempt to find some sort of Mommy and Me program where she can have some more formal socialization with kids her age. This will probably be a bit of a challenge here in the metropolis of LC, where the kind of programs that we're looking for are not usually found, but I'm hoping something will come up that will work for us.

Thats basically all the info I have for now. We're all doing well and staying busy this summer. I have really been enjoying school so far and looking forward to getting more into my studies. I hope all is well with all of you. I hope to post some pictures soon, stay tuned. :)

A summary of our 1-Year Post-Transplant Check-up!

Get comfortable, folks.

So sorry for the delay in posting this. It is definitely a long read, but for those who are interested here is a basic summary of all of our appointments from our trip to Minneapolis. I know I gave some info already, but I think I'll just do a general run-down of each area all in one post!

Neuropsychology- This appointment was to do an assessment of Gracie's skills and development. Dr. Bjoraker was pretty pleased with Gracie's progress all in all, but there are a few areas where she is delayed. Her biggest delay is in her Gross Motor skills. This is because Gracie is still crawling to get where she wants to go. Once she starts walking full-time she'll be back on the right track to catching up. And to our delight, she is walking more and more everyday! Her Fine Motor and Expressive Language skills are only slightly behind where they should be and we are happy to hear that. Her Receptive Language skills are right on track for her age so we were overjoyed to get this news.

Genetics- Dr. Whitley did a brief exam of Gracie in order to check her progress post-transplant. He feels that she is doing great and has had no further progression of the disease. He had us collect a few urine samples for GAG (glycosaminoglycan- the stuff that accumulates in Hurler patients) analysis. We have not gotten results back from these test yet. We also discussed briefly the ongoing research in gene therapy to attempt to cure Hurler's and then had a chat regarding testing in possible future pregnancies since Jimmy and I do eventually intend to have more children. We left this appointment feeling very encouraged regarding our options, as difficult as they may be.

Cardiology- Dr. Braunlin was very pleased to see Gracie and had very good news to share about her ECHO. Apparently Gracie's mitral valve leakage has not progrssed at all and in fact may have possibly made a little bit of improvement. The walls of her heart have thickened a bit, however Dr. Braunlin thinks that this is only due to Gracie being on the CSA (steroid mediciation for anti-rejection) for an extended period of time and expects the heart walls to go back to normal thickness once she is off the medication. Dr. Braunlin then kicked us out of her office and pronounced Gracie "too healthy to be here". We loved it!

Pulmonary- Dr. Regelmann spent only a short time with us listening to Gracie's lungs and getting a history of all respiratory events in the past year. This was a short list, and he was pleased to hear that. He told us that Gracie's lungs are in excellent shape for a post-transplant Hurler kid, so he advised us to be sure to get vaccinated come flu season and sent us on our way.

Opthamology- Dr. Bothun went over the preliminary results of Gracie's retinal scan which appears to be normal. Her corneal clouding has stabilized and even shown the possibility of improvement but is still categorized as level 2- mild to moderate. However, Dr. Bothun agrees that her tolerance of light has certainly improved which is more important than the actual level itself. Her vision appears to be very good, still showing a small amount of far-sightedness which is completely normal at this age. All in all a good appoiontment, although Gracie was not pleased to have drops in her eyes and the dreaded speculum. Yikes.

Occupational Therapy- From what I could tell, Gracie did very well on her OT assessment. We have not gotten official results from this testing back yet though. Likely the recommendation will be to continue her Early Intervention therapy sessions and bring in Valerie, the OT on a more regular basis.

Physical Therapy- Well, sadly Gracie did not impress the PT as much as she has everyone else. They were disappointed to learn that Gracie was not walking exclusively yet. However, they did point out that this was her main point of Gross Motor delay and that once she gets on her feet, she will be able to catch up to the normal range quickly. We're happy to report that Gracie is doing more and more walking everyday and we are sure she will be entirely upwardly mobile very soon. We're working on teaching her to stand independently without help which we believe will be a big step in getting her walking full-time. We are still awaiting the official results from this assessment as well.

Audiology- Another great appointment. Gracie did very well on this exam and we were pleased to see that her hearing function is indeed normal. Testing showed that only the highest frequency was not heard, which the audiologists explained was totally normal in kids with ear tubes. So Gracie actually passed her first conscious hearing exam!!! This is an achievement because her last pass was actually on a test under anesthesia. Go Gracie!!!!

Neurology- This was actually a difficult appointment as we adjusted to our new Neurologist who has taken the place of our beloved Dr. Charnas. We could tell that Dr. Rothman is still getting his feet wet when it comes to this Hurler stuff, however he did have a few things to tell us regarding the results of Gracie's MRI of the brain. Apparently Gracie has slight narrowing of the Foramen Magnum which is basically the area of the neck at the base of the brain. Of course, we were not happy to hear this news, but after second discussion about this with our nurse coordinator who was able to help explain things a little more clearly, we are feeling a bit better about it. This narrowing (known as stenosis) is very common in Hurler patients. Gracie's slight degree of narrowing is not enough to cause much concern as far as going through any procedures to try and correct it at this time. However, we were told that we should be slightly more cautious regarding Gracie's neck than normal and avoid any activities that could cause injury in the neck area such as trampoline jumping, gymnastics/tumbling and other things like that. We were told that in most post-transplant kids, this particular condition does stabilize and requires no surgical intervention, however the chance does exist that Gracie may need some surgery in the future to correct this. Lets hope not. All other aspects of the MRI were normal.

Endocrinology- We met Dr. Polgreen for the first time on this visit and we were instantly enamored with her. What a wonderful physician! She is very knowledgeable in her field and also very thorough, while still personable and capable of explaining everything in a manner that makes it all easy to understand. As far as endocrine goes, Gracie looked pretty good. Her thyroid appears to be functioning normally and her vitamin D level was very good. Her growth velocity was slightly low (meaning how much she grew in the past year), however her height is well within the normal range. We discussed the common problem of growth decline in Hurler patients and the continued research of the use of growth hormone to maximize growth potential. Jimmy and I are both in agreement that we will do what we need to in order to allow Gracie to grow as close to normal height as she can possibly achieve and Dr. Polgreen was pleased to hear it. She said that while it is unknown whether or not Gracie will experience growth issues, since it is a common issue with Hurler kids we should basically expect it. If needed, Gracie will be able to take the growth hormone somewhere around 5-6 years old. This will not be a fun process as it will require a daily injection for as long as she is required to be on it, however we will do what we have to for our girl. Other than the discussion, we were told that Gracie looks wonderful and that nothing needs to be done or corrected at this time.

BMT Clinic- We were so excited to meet with Dr. Tolar who is our main BMT doctor and an amazing man. He walked in the door with a huge smile on his face, so excited to see our girl and how well she is doing. He was quite pleased to see how far she has progressed, how healthy she has been, and all-in-all what a happy girl she is. It was such a wonderful appointment. We talked about continuing to wean Gracie from the CSA and then restarting her vaccination schedule again. He also showed us some blood test results which really made our day. All of Gracie's blood counts are normal, and her T-Cells, Killer Cells, and Natural Killer Cells are all in the normal range, despite the continued immune suppression from the CSA medication!!!!
This means one important thing- Gracie has a new, strong, and butt-kicking immune system! Go Gracie!!!! There was a small celebration in our little exam room when we heard this news. :) After hugs all around and confirmation that all of the "rules" regarding Gracie have been lifted (as long as we use common sense, of course), they sent us away with a thumbs-up and told us they'd see us next year.

Orthopedics- We were originally scheduled to see 2 separate doctors regarding orthopedics, one for hands and one for back, knees and hips, we actually ended up only seeing the second. Our Nurse Coordinator informed us that there is no concern with Gracie's hands at this time (many post-transplant Hurler kids develop carpal tunnel syndrome and require surgery to repair it), and so our first ortho appointment was given to our friend, Wyatt. We did see Dr. Walker regarding Gracie's spine, hips, and knees though. After an x-ray we were able to see that Gracie shows no sign of scoliosis and her kyphosis (malformation of the lower spine which is very common in Hurler patients) is minor and presently stable and showing no need for any kind of correction. The x-ray showed that she has slightly knocked-knees which is again very common in Hurler kids, but still not enough of a concern to do anything about. The hips showed that she does suffer from a very common malformation of the hip sockets in that they do not completely curve around the ball of the hip joint. This malformation occurs due to the GAG build up which makes the hips not curve around. Of course with the introduction of the enzyme needed to remove these GAGs to save Gracie's life, it also removes the GAGs that created, in essence, a faux hip socket. Most Hurler kids will require a surgery to correct this at around 5-6 years old, but it is unknown if and when Gracie will need this correction done. Its basically a wait and see kind of thing. Usually when this surgery is done, they also go in and fix the knees too if it is needed. We are preparing ourselves to have to do this in the future, but only time will tell when it is needed. So, while this was not the news we had hoped to hear, it did not come as a shock to us since most Hurler kids deal with this eventually.


Ok, so I think thats everything. We are still waiting for the results of our urine GAG tests and our Enzyme level test. We did hear the there's a chance that the enzyme level will have to be redrawn as something got screwed up in the lab and Gracie's blood sample was accidentally refrigerated. Oh well.

xoxo.

Heads up!

I'm in the process of writing up a long and detailed summary report of our appointments in MN, but I got an email from our Nurse Coordinator there with some amazing news and I can't wait to share it.

Gracie is still 100% engrafted with her donor's cells!!!!! We could not be happier to hear this. As time passes, the risk of losing engraftment lessens. We're so glad to still be fully engrafted at 1 year post-transplant.

xoxo.

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.

Hi all.

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

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

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

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

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

Much love.

Yippee!!!!

Gracie does not have GVHD!!!!!! Thank you, God!

The biopsy did confirm that she does have eczema which we had already assumed.

The plan is to begin tapering the CSA medicine starting on 4/15, Tax Day. I am so excited. It will be a slow taper because the CSA helps the eczema too and we'd like to keep from having a big flare up.

This is wonderful news and we are just so pleased that our little trooper has taken yet another big step forward. Go Gracie!!!!

Nemours tomorrow

So Gracie's surgery last week went beautifully. Her tubes were replaced and she had her biopsy. We also got the news that her hearing is perfect. Gracie appears to have no hearing loss whatsoever and her ears function normally in all aspects. What wonderful news! Yay Gracie!!!! Congratulations on your first A+ on a hearing test!

Tomorrow morning we head to Nemours for our regular check-up, and I hope to have news about her biopsy, and of course I hope for good news. Gracie has been such a trooper throughout this process, so I wish for her to be GVHD free so that we can head into a more normal life.

If it does appear that Gracie has GVHD, I'm not sure what the next step will be and when we will be able to begin weaning from the CSA medicine. I hope to have more to report back tomorrow. Until then, we'll be praying for good news and hope that you will too.

Also, while you are all praying, friends, please say a little prayer for our new friend Brinley. Brinley has Hurler's also, and he is in the transplant process and having a bit of a bumpy ride. Please also pray for his family who need to be strong and comforted right now.

Much Love.

scooting along

Well, we're still going along our daily lives doing well. Gracie has managed to stay pretty healthy these last few weeks (knock on wood) and we've been busy.

On Thursday, we had our weekly early intervention with a few surprise visitors. Miss Rachel, Gracie's Developmental Specialist, was here as always. I guess I should start by saying that she visits us on behalf of the Early Steps program, but she is actually employed by the Florida School for the Deaf and Blind (FSDB). FSDB works with the Early Steps Program in specific cases and we are one of them. As most of you know, Gracie is neither deaf nor blind, but her diagnosis of Hurler's syndrome and it's effects on vision and hearing gives her automatic entrance into FSDB's program. So basically Early Steps has contracted FSDB to oversee Gracie's Early Intervention plan. Stay with me here...

So on Thursday, along with Miss Rachel's visit, we had a meeting with some people from the Division of Blind Services. The coordinator of the Early Intervention program referred us to DBS in order to make them aware of Gracie's condition and to have them help provide us with anything we may need to assist Gracie visually as her life progresses. We have no idea what will happen with Gracie's vision in the future, and the damage that she has now is permanent. Presently, she still has issues with bright light, particularly bright sunlight and camera flashes. As far as DBS goes, she doesn't exactly fit the general standard of the people who they provide service to, but again, it seems that her condition itself will allow her to fall under the umbrella of DBS and receive their services. We met with the Program Coordinator and also our family counselor on Thursday to discuss the purpose of DBS in Gracie's life. What I found most interesting is that they are both blind. The Coordinator is legally blind, but still maintains functional vision, and our Counselor is 100% blind- born with congenital glaucoma and having completely lost his vision by age 10. I was pleased to see how DBS not only supports the people they serve, but also provides them the opportunity to help others like themselves navigate the difficulties that visual impairment can bring. While I was expecting a mundane meeting outlining how maybe they can help Gracie once she gets in school, I was actually inspired by these men who were so excited to meet us and Gracie an offer us their services which could span Gracie's entire lifetime. It was a good day.

Monday brings Gracie's ear tube surgery and skin biopsy. While she is sedated, she will also have a special hearing function test that can only be given while she is sleeping. Gracie has had many hearing tests since birth and has yet to pass one. Most recently, she had a basic audiology exam, but due to her age it was just not pracitical and it was deemed inconclusive. This test will give us an idea of how Gracie's inner ears are functioning and it will let us know what, if any, hearing loss she may have. We're of course hoping for none, but many children with Hurler's suffer some kind of mild to moderate hearing loss. This test will tell us once and for all. I am anxious to get the results.

The skin biopsy is pretty important too, although lately we've been seeing Gracie's rashes get more red and become a little scaly. I see them mostly on her legs, ankles, and tops of her feet- which incidentally are the parts of her which rub on the carpet when she crawls. Very localized, not really spread in large areas. Coincidence? I don't think so. Looks like eczema to me, but we'll let the test results speak for themselves. We have a prescription cream that keeps it pretty controlled and Gracie doesn't appear to be in any pain or discomfort. I'm hoping to hear of no sign of GVHD and begin tapering off the anti-rejection medicine again.

Well, its pretty late and I think I've covered everything. We'll be heading to Jax bright and early Monday morning, we need to check in at 6:15 am and surgery starts at 7:30 am. Be thinking of our girl and pray for a quick and easy procedure and good test results.

xoxox.

Milestones!

Day +309
Can you believe that number! It seems only weeks have passed since transplant, but the days have slipped by quicker than I could have imagined. We are so thankful to be so far out from transplant and sharing all of these wonderful days with our beautiful Peanut.

Gracie continues to do well and stay mostly healthy (knock on wood) these days. She is still quite the busy girl and she is into everything. She's picked up a few more words, but the most notable one is "no". She uses it a lot. I'm sure you can imagine how this new development is affecting life here in the White house. :) Her pronounciation does lend a bit of humor to it, despite the frequency. She says it like "naw". Its really cute.

In even more exciting news, Gracie is well on her way to walking! She took her first steps last Saturday, March 7th! She can take about 5-6 steps at a time and we're doing lots of practicing. We are so excited to see her finally reaching this momentous milestone and we're hoping to see her really master walking over the next month or so. Of course, we say that now, but we'll see how we feel once she has us chasing her all over the place, right? I hope to post a video of her first steps here soon.

Wednesday, March 11th marked Gracie's 20 month birthday, and on that same day we received a wonderful gift of a family portrait session from the Make-a-Wish Foundation. A local photographer invited us to her studio (on her beautiful farm) and we spent a lovely evening playing and taking pictures. We meet with her again on the 30th to see the proofs. We are so excited and we appreciate both Make-a-Wish and Chontelle Brown of Cotton Blossoms Photography for giving us such a wonderful gift. We really enjoyed the relaxed way that Chontelle works and our session was so much fun. Feel free to check out her site, she does very nice work.

So for now, we're just hanging out and having fun. Gracie is scheduled for her ear tubes to be replaced on the 23rd and she'll be having a skin biopsy on that day as well. We're hoping to confirm that her rash is not GVHD so that we can begin to wean her from her anti-rejection medication again. Please say a few prayers for us as we have high hopes to be off this medication soon and begin living a more normal life one we reach our 1-year post transplant anniversary!

All is well...

Which is why I've been afraid to post. It always seems that when I make a post about how well Gracie is doing, something happens and we end up in the ER or an extended stay at the hospital. So I'll start out by saying that Gracie has a runny nose. We're hoping it will just go away without morphing into something worse. She seems fine, and is playing and eating and being her sweet little self. She's a busy bee these days and I am just waiting for the day that she starts walking and then I am really in trouble. She's jabbering quite a bit and while most of it is incoherent, she has several words that she uses quite frequently. Off the top of my head, here is a list of Gracie's words and interpretations of Gracie's pronunciation.

that - Sounds like dat. This is a very common one. She points a lot at things she wants and says it.
bye bye - This is an oldie but goodie. She cracks me up with it because she uses it not only when we leave somewhere, but when she wants to leave too. I've noticed it a lot when we're at the doc's office. About 5 mins after we're in the exam room she starts saying bye bye and looking at her Daddy and me expectantly. She is a sassy one.
baby - She has a baby and uses the word a lot. Lately, she also combines this word with bye bye so that she says "bye bye baby"- its so cute.
door - usually pointing at the door or swinging it back and forth.
up
down
a bath - Sounds like baf. Also she never just says the word bath. Its always "a baf."
eye - usually accompanied by the finger gouging of whoever's eye she's talking about.
ball - This was her first word. :)
mama
daddy
kitty - sounds like tikky, which is soooooo cute.
boo - she's still a huge peek-a-boo fan.
hat - taught to her by Munts who is usually wearing one.
book - she is an avid reader. ;)
ooooh - her excitement sound, love it.
hey - said on occasion when she's playing with the phone.
busy bee - Sounds like bizza bee. Noni taught her that one.
pasta - sounds like pitta, she loves pasta like her cousin, Nuvy.
apple - sounds like appa.
splash - sounds like spish or spash... obviously said mostly during bathtime.
tub - buh or bub... another bathtime word.
tickle, tickle - ticka, ticka It is so funny when she says this.
She also is trying to say "diaper dance" from her Baby Signing Time videos. This one is a work in progress and requires my prompting by singing the song to her, but it sounds like di di dah.
Thats all I can think of right now... if anyone remembers any more, let me know so I can add them to the list.

She also signs a few basic words.
eat
more - she does this one a lot for Munts who then takes her to raid the pantry. :)
no - this is just her shaking her head.
hi - she has a great beauty queen wave.
all done
bed - she only does this one on occasion.
She can also do the hand motions for Twinkle Twinkle Little Star and has just in the past few days mastered the "diamond" motion. That was so exciting to see her work on.
I love you - This one is the best. She made this sign up herself. No one taught it to her, but one day she started doing this motion when we told her that we love her and she's done it ever since. Its like she hugs herself and turns from side to side. I think its the actual sign for cuddle. Jimmy and I love this one most of all.

She's a good pointer and she's really into learning what everything is called. We observe her moving her lips as she tries to make the sounds that we make when we're teaching her new words. Its exciting when she masters a new word or sign and uses it a lot.

Gracie got a cool Radio Flyer trike for Valentine's Day that has a parent's handle with steering capabilities. Her feet don't quite reach the pedals, but she loves loves loves to ride it all over the place. We took it over to Noni and Munts' house so that we could ride it outside up and down the driveway. Oh, she loves it. She also loves to walk her push toy back and forth on their driveway too. We're slowly discovering the joys of being outside. :)

Thats us in a nutshell. I think we've finally narrowed down a date for our Make-a-Wish Photo Session on March 11. We wanted to get it done before she got her new tubes in case she takes some time to recover. Also the possibility exists that we may not be able to put in the new tubes when we take out the old ones. It depends on the size of the hole thats there. We may have to wait for them to heal up and then go in again for the tube placement. I hope not, but it might happen, so we want to do the photos beforehand just in case.

Hope you are all well. Much love.