our efforts to find travel via Angel Flight and other such charitable organizations has not been going well. Most of the Angel services only provide travel for up to 1000 miles. We are almost 1500 miles from home. Also, the other patient travel service organizations say that they are unable to help us because they don't provide one-way travel. They could have possibly helped with roundtrip travel, but not just to travel home. Its a bit discouraging.
In the meantime, I am starting to contact the airlines who have programs to help with travel for sick kids ( we'd still have to fly on a regular plane, but they help with expenses), but those resources have been taking a hit due to the financial status of most of the airlines right now. We're hopeful that something still might come through for us... you never know.
Besides that, Gracie is still doing great. Our main struggle is still with the eating issue, but she is really trying. They took the fats out of her TPN hoping that it might stimulate her appetite, but she's still not taking in enough food to sustain herself. We are continuing to work on it though and Gracie is truly blooming despite the difficulty. I am really so proud of her. :)
Wednesday, July 30, 2008
Sunday, July 27, 2008
Day +80... in the home stretch- literally!
So, I can safely say that provided that we have no major medical events, Gracie and I will return home sometime around August 20th or soon after. Our final appointments will occur on August 18th and consists of the following: An MRI, X-ray, and Lumbar Puncture (Spinal Tap) under sedation, followed by a general checkup at the BMT clinic and then a visit with our Neurologist, Dr. Charnas.
So between now and then our prevailing dilemma is to figure out how to get home. Obviously we need to fly, however Gracie's fragile immune system makes us a little wary of flying a commercial airline. We all know how germy those planes can be! And I can't even bear to think about making Gracie wear her mask through a long flight and possibly a layover and then another flight. Ugh, poor baby. So, right now I am in the middle of contacting the many Angel and Mercy flight organizations to see if they can help us. They network with volunteer pilots with small aircraft and also large corporations with private jets and try to match them up with patients in need. We're really hoping that this will work out for us, so send out some prayers for an angel to swoop in and bring us safely home.
Gracie is still doing great and working hard trying to eat and with her physical therapy. She's definately making progress in both areas but its slow going. I am so proud of her for being such a trooper, even when she just doesn't feel like it. She is definitely an amazing little girl. So we'll just soldier on with the feeding, meds and physical activites and hopefully Gracie will continue to improve.
Much love.
So between now and then our prevailing dilemma is to figure out how to get home. Obviously we need to fly, however Gracie's fragile immune system makes us a little wary of flying a commercial airline. We all know how germy those planes can be! And I can't even bear to think about making Gracie wear her mask through a long flight and possibly a layover and then another flight. Ugh, poor baby. So, right now I am in the middle of contacting the many Angel and Mercy flight organizations to see if they can help us. They network with volunteer pilots with small aircraft and also large corporations with private jets and try to match them up with patients in need. We're really hoping that this will work out for us, so send out some prayers for an angel to swoop in and bring us safely home.
Gracie is still doing great and working hard trying to eat and with her physical therapy. She's definately making progress in both areas but its slow going. I am so proud of her for being such a trooper, even when she just doesn't feel like it. She is definitely an amazing little girl. So we'll just soldier on with the feeding, meds and physical activites and hopefully Gracie will continue to improve.
Much love.
Thursday, July 24, 2008
Day +77 PICS!
Gracie continues to do well, have good counts, and has become increasingly more playful and active. All in all, she is doing well. Right now our challenge is eating, and its a tough one. She is really trying though, despite the nausea and what I percieve to be a lack of appetite. She likes yogurt and cheetos a lot! And she surprised us yesterday by finally drinking from a sippy cup! This is a huge accomplishment and a big step in the right direction. It means she is not only allowing the tip into her mouth, but she is sucking too. YAY!!!!
She's also getting a little hairy from the CSA (medicine she takes to prevent GVHD), so her eyebrows are getting a little bushy and growing together some... and right up her forehead. :)
Here are a few pics I snapped the other day while Gracie was trying to cruise (she's almost there!)... I think they turned out so cute. I hope you like them too.
She's also getting a little hairy from the CSA (medicine she takes to prevent GVHD), so her eyebrows are getting a little bushy and growing together some... and right up her forehead. :)
Here are a few pics I snapped the other day while Gracie was trying to cruise (she's almost there!)... I think they turned out so cute. I hope you like them too.
Sunday, July 20, 2008
Day + 70-something. No News is Good News
Hi everyone. Sorry we have been so sporadic in our postings. I assure you that no news is good news. Gracie is doing extremely well. She's doing a great job choking down all the meds. She vomits and gags some, but all in all she's a trooper. It's tough on mommy too since she her life has been transformed into a human medication vending machine. All she has time to do is administer medications.... But mommy is a trooper too and is developing a routine and hanging in there...
Her docs are all very happy with her progress. Her numbers all all still very good, and as you know - she is actually making enzyme on her own. So long as we can keep her healthy, the transplant will be a total success! Yay!
Gracie has been getting out quite a bit, trying to enjoy the fantastic summer weather in Minneapolis.. She goes for walks, has gone out to dinner a few times... She loves it. She just wears her little mask and plays and seems to have fun. Such a great kid!
Great news is that Gracie is starting to show signs that she wants to eat regular foods. Apparently, the transplant messes with their taste buds, so the docs recommended we try to give her adult food with stronger flavors (baby food is too bland). She sucked on a piece of pasta, ate part of a cheeto, and ate a french fry... I suppose we'll have to work on her healthy diet later. For now we just want her to start eating. The sooner she starts eating food, the sooner she can go home.
Gracie is also talking a lot more, and starting to make progress toward getting around independently... her speech and physical therapists are very pleased. :)
Anyway, just a quick update to keep you in the loop. So sorry for our delinquency.
Uncle Mack
Her docs are all very happy with her progress. Her numbers all all still very good, and as you know - she is actually making enzyme on her own. So long as we can keep her healthy, the transplant will be a total success! Yay!
Gracie has been getting out quite a bit, trying to enjoy the fantastic summer weather in Minneapolis.. She goes for walks, has gone out to dinner a few times... She loves it. She just wears her little mask and plays and seems to have fun. Such a great kid!
Great news is that Gracie is starting to show signs that she wants to eat regular foods. Apparently, the transplant messes with their taste buds, so the docs recommended we try to give her adult food with stronger flavors (baby food is too bland). She sucked on a piece of pasta, ate part of a cheeto, and ate a french fry... I suppose we'll have to work on her healthy diet later. For now we just want her to start eating. The sooner she starts eating food, the sooner she can go home.
Gracie is also talking a lot more, and starting to make progress toward getting around independently... her speech and physical therapists are very pleased. :)
Anyway, just a quick update to keep you in the loop. So sorry for our delinquency.
Uncle Mack
Tuesday, July 15, 2008
Bad Mommy, Good News
So, the bad mommy has been a bad blogger. A week ago I promised pictures and an update. I'm sorry its been so long. :(
Everyone has left now, even Noni, and we expect Uncle Mack to come for a visit tomorrow. So Gracie and I are on our own for today. She's napping now, so I thought I'd come fulfill my overdue promise.
Luckily, I have great news to share from our clinic visit yesterday. Firstly, her counts are still great... WBC 7.5 and Neutrophils 5.3 ... all the other numbers are great as well.
Secondly, they tested her engraftment last week (although they forgot to tell me about it) so I was pleasantly surprised to learn that Gracie is still 100% engrafted with her donor's cells.
Thirdly, I finally learned that Gracie's new cells are producing alpha-L iduronidase- our missing enzyme- and plenty of it, so regarding the transplant for its original purpose, we can say for sure that it worked. WOOOOHOOOOO!!!!! Now our concerns are of course to stay engrafted, stay healthy, start eating, and combat GVHD (Graft-Versus-Host Disease).
Gracie's birthday was wonderful, and thank you all for the wonderful cards, gifts, and well-wishes we received. I consider myself so blessed to have such a wonderful support system and we definitely feel so loved even though we're far away.
Ok, so how about some pictures.... I hope these are worth the wait. :)
Gracie and Mommy at the fireworks
Gracie's birthday cake... actually it was Garcie's cake.
Gracie and Daddy snuggling
And 2 from Gracie's birthday dinner at Applebees. What a big girl!
Everyone has left now, even Noni, and we expect Uncle Mack to come for a visit tomorrow. So Gracie and I are on our own for today. She's napping now, so I thought I'd come fulfill my overdue promise.
Luckily, I have great news to share from our clinic visit yesterday. Firstly, her counts are still great... WBC 7.5 and Neutrophils 5.3 ... all the other numbers are great as well.
Secondly, they tested her engraftment last week (although they forgot to tell me about it) so I was pleasantly surprised to learn that Gracie is still 100% engrafted with her donor's cells.
Thirdly, I finally learned that Gracie's new cells are producing alpha-L iduronidase- our missing enzyme- and plenty of it, so regarding the transplant for its original purpose, we can say for sure that it worked. WOOOOHOOOOO!!!!! Now our concerns are of course to stay engrafted, stay healthy, start eating, and combat GVHD (Graft-Versus-Host Disease).
Gracie's birthday was wonderful, and thank you all for the wonderful cards, gifts, and well-wishes we received. I consider myself so blessed to have such a wonderful support system and we definitely feel so loved even though we're far away.
Ok, so how about some pictures.... I hope these are worth the wait. :)
Gracie and Mommy at the fireworks
Gracie's birthday cake... actually it was Garcie's cake.
Gracie and Daddy snuggling
And 2 from Gracie's birthday dinner at Applebees. What a big girl!
Monday, July 7, 2008
Yikes...
Has it been so long since I've posted??? Oops... sorry to our loyal fans for the long delay in updating. So, since last week, we have been very very busy. We still have all of our family here, although Aunt Hyster and her crew will be leaving us tomorrow.
We have had a wonderful week of celebration with our wonderful family. Once everyone got here, we planned a cookout in the courtyard here with another family that we have become close to. Nuvy made a special friend with their little girl, and those 2 have played the day away for a few days... and then parted with tears when Nuvy ad to go back to the hotel for the night.
We had a birthday celebration for Gracie and all of the rest of us who have late June/early July birthdays and we had a yummy cake from Ben and Jerry's.... mmmmmm. Our new friends here gave Gracie some wonderful gifts that she has been playing with non-stop... along with the gifts that Mema brought with her from Jimmy's family.
Mommy has been indulging in some much needed sleep while Daddy is here to pick up the slack. Mommy even had an outing with the Kelly crew yesterday to the Mall of America while Daddy and Mema stayed at the RMH with Miss Gracie, who sadly is not allowed to go to the MOA for a while. Uncle Mack, Mommy and Hyster all rode on the Spongebob Rollercoaster in the amusement park and then we all took turns riding with Nuvy on the kiddie rides. Lucky me, I got to ride with her on the Blue's Clues ride.
Today we had to head back to clinic for another round of blood draws. Her counts are holding steady at 7.8 WBC, 5.5 Neutrophils, and her platelets jumped again to 203!!!! Very exciting. We have an appointment with the doctor again on Friday to recap on how we've been doing so far. I hope for another glowing report. :)
Ok, so I owe lots of pictures since it took me so long to post, so I will definately work on it and you can see how well our girl is doing.
xoxox.
We have had a wonderful week of celebration with our wonderful family. Once everyone got here, we planned a cookout in the courtyard here with another family that we have become close to. Nuvy made a special friend with their little girl, and those 2 have played the day away for a few days... and then parted with tears when Nuvy ad to go back to the hotel for the night.
We had a birthday celebration for Gracie and all of the rest of us who have late June/early July birthdays and we had a yummy cake from Ben and Jerry's.... mmmmmm. Our new friends here gave Gracie some wonderful gifts that she has been playing with non-stop... along with the gifts that Mema brought with her from Jimmy's family.
Mommy has been indulging in some much needed sleep while Daddy is here to pick up the slack. Mommy even had an outing with the Kelly crew yesterday to the Mall of America while Daddy and Mema stayed at the RMH with Miss Gracie, who sadly is not allowed to go to the MOA for a while. Uncle Mack, Mommy and Hyster all rode on the Spongebob Rollercoaster in the amusement park and then we all took turns riding with Nuvy on the kiddie rides. Lucky me, I got to ride with her on the Blue's Clues ride.
Today we had to head back to clinic for another round of blood draws. Her counts are holding steady at 7.8 WBC, 5.5 Neutrophils, and her platelets jumped again to 203!!!! Very exciting. We have an appointment with the doctor again on Friday to recap on how we've been doing so far. I hope for another glowing report. :)
Ok, so I owe lots of pictures since it took me so long to post, so I will definately work on it and you can see how well our girl is doing.
xoxox.
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