...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.
Wednesday, October 21, 2009
Saturday, October 17, 2009
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/
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/
Thursday, October 8, 2009
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.
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.
Tuesday, September 15, 2009
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.
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.
Thursday, August 6, 2009
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!
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!
Tuesday, July 7, 2009
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
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
Monday, June 15, 2009
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. :)
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. :)
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