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.
Tuesday, April 14, 2009
Tuesday, March 31, 2009
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!!!!
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!!!!
Monday, March 30, 2009
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.
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.
Saturday, March 21, 2009
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.
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.
Friday, March 13, 2009
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!
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!
Saturday, February 28, 2009
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.
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.
Saturday, February 14, 2009
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.
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.
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