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.

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.

We have a favor to ask...

our loyal and wonderful friends and fans.

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

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

Thank you and we love you.

We're waiting to see Dr. Braunlin in Cardiology to learn the results of the Echo. We're hoping for stable or decreased leakage from her mitral valve.

Well, I learned how to update the blog via text message from my cell phone. The downside is that I can only post messages that are this long! D'oh! :)

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.

Waiting for our echo appointment...

So I thought I'd give another quick update. I ended my last post with our Monday schedule, but I didn't get to finish. So after BMT clinic and the awful blood draw, we visited our geneticist, Dr. Whitley, which was again a wonderful visit. We discussed some of Gracie's progress and he seemed very pleased with her so far. We also discussed the process of having more children and then lightly touched on the ongoing research for MPS. All in all, an informative appointment. :)

Whew! I'd forgotten how packed these check-up weeks are! The last few days have been a whirlwind, but I will try to sum them up the best I can for our loyal readers.
Monday started with an early appointment with Neuropsychology and Dr. Kendra Bjoraker who is one of the most wonderful women I have ever met. She is so kind and caring, and she has a real heart for these MPS kids she works with. The appointment went well, and they noted many of Gracie's obvious improvements. :) We go back to Neuropsych on Thursday for more testing and to hear the opinion on Gracie's progress so far.
Afterward, we visited the BMT clinic and had a nightmare of a blood draw fiasco, but despite it all, Gracie continued smiling and charming everyone we saw. And of course they all remembered our sweet girl. We will visit BMT again on Thursday for an appointment with our beloved Dr. Tolar and we can't wait to show off to him!

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

Day +365

One year ago today I got my baby back. Unbelievable.

Thank you, God.


Happy Life Day, beautiful baby.

Our special friend Rylie...

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

http://www.ryliehays.blogspot.com

Another reminder...

of how wonderfully blessed and lucky we are to still have our Gracie with us.

I learned today that another Hurler baby in Minnesota has lost his fight and gone home to God. Little LB passed away yesterday due to complications from transplant.

I am devastated and discouraged to know how many lives MPS is still claiming, despite having the best medical care available. Its totally unfair, and I wish there were more that could be done for these precious children.

Please pray for Brinley's parents, Mandy and Trampus, and also LB's parents, Michelle and Lou, as they try to rebuild their lives again without their precious sons. God bless them all.

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.

The monumental screw-up part 2

Yes, I know. Slacker mommy.

So I gave you the first part of our lovely Shands/Lake Shore story a few weeks ago, and then left you hanging. Sorry about that, loyal fans. :(

So, lets catch up.

I left off at our admission to Wolfson Children's Hospital due to what looked like a contaminated blood sample drawn from Gracie's foot. Well, the next 4 days were a blur of continuous needle pokes for Gracie. It was terrible. Anytime any hospital staff would get near her, she would scream her head off, anticipating another poke. Unfortunately, her fears came true more often than not. Poor baby. As for the original positive culture from Lake Shore, our docs at Wolfson spent quite a bit of time attempting to get more information about the sample, and even the sample itself. They were told by the lab at Lake Shore that the sample was sent to Shands Gainesville for further study, but when our docs called "Big Shands", they had no idea what they were talking about. Somehow this sample had been "misplaced". At this point, our Docs at Wolfson are ready to make a formal complaint about this situation and Shands at Lake Shore sends them copies of the preliminary lab sheet which stated that the blood was drawn intravenously. Now, if you're officially confused by now, I don't blame you. But what that means is that someone lied when they submitted Gracie's blood for culture. I'm also being questioned about the capture method to make sure I know what I am talking about. I'm also officially furious. Shands at Lake Shore will be on the receiving end of this anger on the day a pull a bill from them out of my mailbox. I also plan on inviting them to pay for Gracie's stay at Wolfson's as well. We'll see how it goes and I will certainly keep everyone posted. And I'm sure it will come to no surprise to anyone that we will no longer be taking Gracie to Lake Shore if she runs a fever. We will go straight to Wolfson's from now on. Its just not worth it.

On to other topics.

Gracie continues to blossom and do well despite our minor roadbumps. We are still dealing with our mystery rash, and I am more and more convinced that it is NOT GVHD. Unfortunately, I will have to wait quite a while for confirmation of that because Gracie's biopsy (and ear tube replacement) is scheduled for March 23rd. Yuck! I had no idea it would be so long from now. When we first spoke to Dr. Joyce about this they told us to keep the next few Thursdays available for the procedure so we were thinking it would be pretty quick. I plan on calling our nurse on Monday and finding out if this is really the best we can do. So due to this, we are still on a therapeutic dose of CSA and no plans to wean off yet. Bummer.

Gracie doesn't seem to care much about the CSA issue, since she takes her meds in her formula these days. So she's just hanging out, being cute, and having fun. She's got about 15 or so words she can say, and she signs a little bit as well. We're hoping to cultivate her communication skills quite a bit in the coming months so that we can get her to express herself better and with less frustration. We're also hoping to see her start walking on her own. She's getting close, and I'm hoping it will happen soon. She is definitely a social girl, she loves to smile and wave at people and babble lots and lots. She's had a recent spike in her appetite as well. She's such a sweet baby and I am so proud of her for having such a wonderful disposition despite her circumstances in life. She really is an angel.

The momumental screw-up... part 1

So we are home from Wolfson's Children's Hospital, where we endured a 4 day isolated stay that has left our poor Gracie looking and feeling like a human pin cushion- covered with prick marks, bruises, and bandaids. My poor sweet girl.

So let me give you the story- start to finish- of what really went down. Uncle Mack and Aunt Hyster did their best with second hand info, but I'm going to clear it all up so we can have a full picture of what exactly happened.

Rewind to a week ago- Sunday. Gracie is fighting a fever... it started out around 99 degrees. This is enough to warrant some concern, but 100.5 is our magic number. When Gracie reaches 100.5, we automatically head to the ER to have blood cultures taken and doses of antibiotic given. Anyway, she seemed ok despite the low grade fever, so we took a quick trip with Noni down to Gainesville to shop for a few hours. Gracie did well, but as time passed, she seemed to get more and more fussy. We headed for home and once we got there I took her temp and there it was 100.9. We packed Gracie up and Noni went with us to the ER (Shands at Lake Shore). We got in our room and waited for the inevitable needle stick which would provide not only a blood sample, but also an entry point for the IV antibiotics that would follow.

I'll give our nurse credit for trying, she did go for a vein in Gracie's arm with little success. Of course, Gracie squirmed and screamed her head off the entire time as the nurse wiggled the needle around looking for her vein. No go. On the other arm, she saw a big bruise we got from a previous draw which blew Gracie's vein over there. I think that by that time, she was nervous about sticking Gracie again and her judgement was not so clear. She suggested another method of blood capture- a heel prick, and we could give the antibiotic in a shot. Having just watched my baby writhe and scream in agony for a few minutes (which felt like an hour), I liked the idea of a quick stick and then a quick shot. WHatever would get us out of there the fastest. It never occured to me that I should question this method. I figured that if the nurse and doctor ok'd it, it must be a good alternative.

So she prepped Gracie's foot by cleaning it well with alcohol and chloroprep before giving her heel 2 pricks to make the blood flow more freely. Poor Gracie screamed again and kept screaming for next half hour as the nurse squeezed her foot and scraped the collection tube around her heel to collect enough blood for the sample. She had to get several tubes worth of blood, and this took a lot more time than anyone anticipated. By the time she filled the 3rd tube for the culture, the first 2 tubes (which were for a blood count and a metabolic panel) seemed to have clotted up. Fearing that the third tube would also clot, she called another nurse in to run it over to the lab. The second nurse saw the clotted samples and Gracie's still bleeding foot, and grabbed another 2 tubes and began squeezing Gracie's foot as well. I had noticed that she used hand cleaner when she first walked in, but I was distracted by my screaming baby and the discussion on the clotted tubes and I didn't pay much more attention to what she did. I was so paranoid that Gracie would have to be stuck yet again because of all of this mess. As Nurse 2 finished collecting the 2 new tubes, it was then that I noticed that her bare hands were covered in Gracie's blood. No gloves. I panicked, thinking only of the risk of contamination, and asked Nurse 1 if the 2 new tubes were for the the culture or the other tests. I was told they were for the other tests and then the nurses quickly took all of the tubes out of the room to send them to the lab before any clotting could occur. This was unusual because the blood for the culture is usually placed in the special culture bottle before being removed from the room... but with the entire process being out of the norm and my poor baby just absolutely terrified and screaming, I let it go and concentrated on calming Gracie down. In retrospect, I see the many red flags staring me in the face, but in the whirlwind of the moment, I was concentrating only on comforting my screaming daughter. The motherly instinct trumped my consciousness.

This was only the start of the screw-up...

On Wednesday evening while we were doing well and Gracie was fever-free and feeling better, we received a call from the folks at the ER telling us that Gracie's culture had grown something. I asked them to fax any and all results to our doctor at Nemours. I then called over to Nemours myself and asked them to page the on-call doc so that he could tell us what to do. He called back immediately and when I told him about the preliminary results of the culture, he told me to go ahead and pack up, that we were going to be admitted to Wolfson's for observation, a repeat culture, and a round of specific antibiotics. He asked me what kind of port or line Gracie had, and I told him that she had gotten her line removed at the beginning of the month. He asked how the culture was drawn, and I told him that they collected it from a heel prick. There was silence on the other end of the line, and then he asked me if I was serious. Ummm... this is clearly a bad sign. He told me that no one should EVER do an infection culture via heel prick due to the risk of contamination, but that we have to work under the assumption that the culture was correct and we needed to bring Gracie in. We packed up and loaded our poor girl in the car and headed to Jacksonville.

Upon arriving, we were ushered into the ER and we went through the normal registration and shown back to our little cubicle. Gracie endured 2 more pokes and then finally they were able to place an IV. They took another culture and hooked her up to the antibiotics while we waited for them to get us a room ready on the Oncology/Transplant floor. We finally made it our room at about 4 am and Jimmy got us settled in before heading back home in time to get maybe an hour of sleep before having to head to work. Gracie was restless and scared... and very annoyed to have the IV in her hand so it took some work to get her to sleep. We finally crashed about 6... although we were constantly disturbed by the many people coming in and out to check on this, or hook up that... etc. It was not fun for anyone, especially poor Gracie.

Stay tuned as the story unfolds in a future installment.

It's better than bad, it's nuts!

Hi, everyone. Aunt Hys is all riled up at Shands (I guess that's who came up with this hare-brained blood drawing method). Gracie's bacteria-ridden blood sample was meaningless from the moment it was drawn, so the information it would have provided was non-information anyway. Now, this sample is "lost" somewhere between the Lake City and the mothership. If you're up for reading a foot-stamping temper tantrum about this, it's in the comments on Mack's post (previous). I'll spare the rest of you.

Pfeh.

Back in the hopital

Hello. Sarah asked me to make a quick post.

Gracie had a fever, so the lab in lake city drew blood, and something grew on the petri dish, so Gracie had to go back to Nemours in Jax. Everyone thinks they contaminated the sample when they drew the blood (again) but they need to be in the hospital as a precaution. To top it off, they were supposed to fax the test results and send the sample to Nemours so they could identify the suspected bug. Well, they sent it to Shands in G-ville. Brilliant. Naturally, Shands has no idea what is going on, and don't know what sample we are talking about or where it is...

So, they had to have another blood draw in Jax, and are waiting for results. Preliminary data suggests that Gracie's potassium is low. The doc thinks the blood sent to the lab was hemolyzed (all of the blood cells burst - happens sometimes when too much suction used to draw blood). They'll draw again and check again... :(

In summary, they feel good, and think all is ok. That said, they will be in the hospital for a couple more days until it is all figured out. In the meantime, hospitals are very boring - no internet or anything - so feel free to give Sarah a call. I'm sure she'd appreciate it. 386-344-1095.

Uncle Mack

Its super-late but...

I am so overdue for an update and our Gracie-bean could use a few prayers.

So, the stomach bug took a little longer to kick than anticipated, but she did wind up kicking it and things started getting back to normal. There was no need for a blood transfusion. We saw Dr. Joyce last Wednesday and he said that Gracie looked pretty good for the most part, but darnit the mystery tummy rash has returned! Total bummer. Dr. Joyce is again worried that we're dealing with GVHD and we are now back on what is called a "therapeutic dose" of CSA for the time being. While I am totally disappointed in this turn of events, it really is the safest and easiest option to determine if in fact it is GVHD that we're dealing with. I told our nurse that while Dr. Joyce may be right and I am on board with restarting CSA, I am not so sure that our mystery rash is what he thinks. So as an experiment, I have discontinued my constant application of the mystery-rash-killer-ointment aka triamcinolone (with Dr. Joyce and Nurse Paula's approval) to find out if CSA will handle the rash. Its been 5 days, and so far I am winning. The rash is still there (thank goodness its not itchy) deapite our CSA increase. The bad news is that this will probably mean that my poor peanut will need another skin biopsy to determine what the heck this crazy rash is. We'll just have to wait and see.

Fast forward to yesterday... Gracie spiked a fever and as per protocol, off we went to the ER for cultures and antibiotic. It was here that I can honestly say I began to miss our central line. They had to draw blood for the labs and unfortunately, Gracie has little baby veins and she was slightly dehydrated, so they were unable to get an IV. So they did a heel prick to get the blood sample and then we got our medicine as a shot. All in all, too many needles in the Peanut. She was not a happy camper. This morning she woke up and our fever was still hanging around, so we had to go back to the ER for another shot of antibiotics. :( Luckily thats all we had to do. So far, her cultures from yesterday have not grown anything, so there was no need for a second blood draw. We got home and Gracie took a long nap. She woke up and her fever was up again, but after some tylenol and a nice bath, she was cool and comfortable again. Here's hoping we wake up fever-free tomorrow.

So for all of our adoring fans, we ask for prayers against infection and prayers against GVHD. We would love to be able to begin our wean again. As long as we are on the "therapeutic dose" of CSA, Gracie must have regular blood draws to check the level of meds in her body. With no central line, this will not be a pleasant process for Gracie and I hate for her to be poked and prodded so frequently.

I hope I have better news for our next update.

So...

Gracie is still not quite 100% over our bug, but she is better. She started feeling better the morning we went to see the doc, of course, and we were sent home feeling a bit better about how long its taking her to kick it. She's still tiring pretty easily and getting crabby once she gets tired. We head back to Nemours tomorrow for our regular appointment and I'm looking forward to getting some bloodwork done to make sure that everything is ok. My present thinking is that her hemoglobin might be a bit low (this happens when she gets sick) and thats why she tires so quickly. Maybe a little boost of blood can perk her up a bit more. She's happy and perky when she wakes from her naps and such, but she just doesn't seem to maintain the energy for as long.

She's eating and drinking fine now though, and I am thankful for that and knowing that she's not feeling quite so yucky anymore.

xoxoxo.

Spoke too soon...

It turns out that Gracie's tummy problems are not quite over. She's still having yucky diarrhea and she's started vomiting a bit today. I switched her back to clear liquids (apple juice, pedialyte, and chicken broth) from her normal toddler formula and the puking has subsided, but she's completely refusing solid food. She only wants to drink and drink until she is full. Poor baby- her tummy hurts. :( We head to Nemours tomorrow so they can get a look at her.

I'm hoping all will be well, but prayers are definitely appreciated right now. She's been doing so well for so long... its almost like we were getting too comfortable. :(

P.S.

Gracie has had 4 baths since Monday (when she got the ok for a bath) and she has loved every one of them. :) Thank goodness for the bath ok, can you imagine a stomach virus without baths?????? Yikes.

Sorry for not updating after surgery...

but things for the most part went well.

The surgery itself was quick and easy. As a matter of fact, they had to page us up to the floor when she was done because we were still down in the cafeteria having a quick bite to eat.

We got back up to recovery and she was sleeping well and comfortable. When she woke up, she was fussy, but nothing more than what we expected after being sedated. She drank some apple juice and we were given the ok to go home. So we went to change her diaper and put her clothes back on and we saw 2 huge scratches on her left leg. Ouchie.

We called the recovery nurse over and asked her about them. She said she had no idea what they were from and called into the OR to speak to the OR nurse who was with Gracie the entire time. It turned out that they were having a particularly difficult time with their present surgery, but the notations on the chart said that Gracie had the scratches when she came in. Ummm... no. Not possible. Even if it were possible for her to even get those kind of scratches, there is NO WAY we wouldn't have known about it.
We told this to the recovery nurse and added that we know that accidents happen and that its ok, but we wanted to know what she might have been scratched by in case we need to hit her with some antibiotics just in case of possible infection. The poor recovery nurse said she would try to talk to the OR nurse again. She phoned into the OR again and the nurse told her that she was still wrapped up, but that the scratches were already on Gracie when she got her. Ok, now I'm starting to get upset. We gave the lady a pass, we just want her to fess up so that we know what the next step should be. Its not a big deal, just tell us that her leg got scratched on the table or something and she shouldn't need any extra precautions.
This never came about and we left with the promise that the OR nurse would call us when she has a spare moment. We haven't heard from her yet. I am a little peeved and I'll be letting Dr. Joyce hear about it on our next visit.

So Gracie took a nice long nap after we got home and I expected to have a cranky little Peanut throughout the evening, but it turned out that she was very happy to have her line out. She was all smiles and giggles... we even went out to Applebees to celebrate. Woohoo!

Saturday and Sunday were great days as well. Gracie was definitely feeling good and we were having a ball. Another celebratory dinner at Red Lobster and church on Sunday morning.

Then Monday rolled around and Gracie started not to feel so good. She turned away food, then threw up, and then started having some yucky diarrhea. Mommy started to worry... first about infection, then about the possibility of GVHD of the gut which is even nastier than the skin kind. I called Nemours first thing on Monday and when I heard back from them they eased my mind by telling me that it sounded viral to them. Hee-hee. I remembered the true meaning of a "mixed blessing" by Monday evening when I was also blessed with this lovely stomach virus. It turns out that I got the worst of it (which is also a mixed blessing) because Gracie pretty much sailed through it while I fought the sweats, chills, and a 102 degree fever while worrying my head off that Gracie was going to do the same thing and end up in the ER or even an extended stay in the hospital.

We're both past the worst of it now, although her diapers are definitely still yucky. I'm hoping she'll be back to normal in a day or 2 and we can keep trucking like we always do. We had a mishap with one of Gracie's meds over the past few days too, but we were able to iron it out and hopefully tomorrow will be a better and smoother day.

xoxo.

Prayers...

Gracie will be having surgery at 8 am tomorrow (err... today) to have her central line removed and also she'll be having an eye exam under sedation. Of course since surgery starts at 8, we have to check in at 6:15. Yuck. Factor in a 1.5 hour drive and then look at the time of this posting and just imagine the lovely mood we will all probably be in. :P

No seriously, we are so excited to get this line out. As of yesterday, the entry point on her chest began itching a lot and Gracie kept scratching at it. Then to my delight (note the sarcasm) it began seeping a bit and the yucky ooze really irritated the skin around it. I gave her a bath and dressing change today because it was so yucky and wet and I discovered some serious skin breakdown under the bandage. Poor baby. This happened before and we learned that Gracie's sensitive skin doesn't like adhesives and plastic bandages and chloroprep and other stuff like that. We switched all of her dressings to breathable cloth and used different adhesive remover and cleaner, but I think her skin has just plain had enough. This line has been in place since the beginning of Sept, so 4 months of covering the same area is bound to make your skin unhappy, right? Anyway, I know that her skin issues will calm down once she is free of the 24-7 bandages. I'm looking forward to that quite a bit.

Please pray for an easy and quick procedure and safe travels for us. We love you all so much.