I just wanted to post a prayer request tonight. I don't know if you've had a chance to follow Daylon and Bella's transplant journeys, but the Edlings (Daylon's parents) got some pretty tough news yesterday. Between dialysis and the drug he's having to take for his VOD (a complication of the BMT), he's suffered some brain hemorrhaging and probable brain damage.
Here is the link to the update in his Mommy's words.
Please, please be in prayer for Sweet Daylon. I just can't imagine what his parents are going through right now. What a hard road.
Showing posts with label daylon. Show all posts
Showing posts with label daylon. Show all posts
Saturday, July 31, 2010
Saturday, July 24, 2010
title goes here
This will be quick because I don't have a whole lot to talk about, and my sister has my camera this weekend so I don't have any new photos to fill up blog space. BUT...
We've had an okay day. Jonah's been fussy and a little frustrating, but I guess that's in typical not-quite-toddler fashion. We got up and did dressing change, fed Jonah, and then headed up to Stone Mountain to visit with my Maw-Maw and Paw-Paw. My brother and his kids and my dad were all going to be up there today, and I have been wanting to take Jonah for a while, so it was a great time. We had a nice lunch and got to hang out a little, but we had to stay inside while the kids went on golf cart rides and to the playground, so we missed out on some good family time. Meanwhile, back at Maw-Maw's cabin, Jonah was fussy, clingy, and an all around a pain-in-the-patooty. So we cut it short and headed back home. He was overly tired because he had only slept 45 minutes on the car ride up there, and he's always pretty ornery in a new place.
Peyton and his kids (ages five and three) came into town on Thursday night, though, so I had gotten to spend some quality time with them before today. Peyton came yesterday morning, while my mom took the kids to the park and library, and helped with dressing change. Then I went over to my mom's for a late lunch on Friday and hung out with them and the kids. Last night, Matt and Peyton kept Jonah and played a couple games of chess (Matt is a very good chess player, and he says that Peyton is a smart player and good considering he hasn't played that much) while Mom and I took the kids to see a local performance of Peter Pan the Musical. It was fun, and although the kids were a little restless at the beginning, they really liked it (it was three hours long - they did GREAT!).
That's about it for our weekend so far. We hope to make it to church tomorrow, but don't have any big plans. It is still SO HOT here, and I'm praying for relief soon. I'm fairly certain it got to 100 degrees here today, and you'd think it would have been cooler up in the mountains. You would be incorrect. And the humidity is just so bad. You just feel damp and sticky as soon as you walk out the door. Gross. And impossible for Jonah.
Please say some extra prayers for Daylon and Bella tonight. Daylon's had some bleeding on the brain and a seizure from a trial medicine he's having to take to prevent a potentially fatal condition (VOD) from getting worse that has resulted from Transplant. So far, they've been able to avoid surgery (which would hold GREAT infection risk for him) and have stopped the medicine and increased his platelets in hopes to thicken his blood. Bella is on the same medicine for the same condition. Both of them are on continuous dialysis because their kidneys aren't functioning, which thins the blood further. VOD is potentially fatal. Kidney failure is potentially fatal. Stroking from this medicine is potentially fatal. Nothing about this transplant is easy. Please be in prayer for both of them. As always, many thanks for the prayers, love, and support for all the EB Sweeties.
We've had an okay day. Jonah's been fussy and a little frustrating, but I guess that's in typical not-quite-toddler fashion. We got up and did dressing change, fed Jonah, and then headed up to Stone Mountain to visit with my Maw-Maw and Paw-Paw. My brother and his kids and my dad were all going to be up there today, and I have been wanting to take Jonah for a while, so it was a great time. We had a nice lunch and got to hang out a little, but we had to stay inside while the kids went on golf cart rides and to the playground, so we missed out on some good family time. Meanwhile, back at Maw-Maw's cabin, Jonah was fussy, clingy, and an all around a pain-in-the-patooty. So we cut it short and headed back home. He was overly tired because he had only slept 45 minutes on the car ride up there, and he's always pretty ornery in a new place.
Peyton and his kids (ages five and three) came into town on Thursday night, though, so I had gotten to spend some quality time with them before today. Peyton came yesterday morning, while my mom took the kids to the park and library, and helped with dressing change. Then I went over to my mom's for a late lunch on Friday and hung out with them and the kids. Last night, Matt and Peyton kept Jonah and played a couple games of chess (Matt is a very good chess player, and he says that Peyton is a smart player and good considering he hasn't played that much) while Mom and I took the kids to see a local performance of Peter Pan the Musical. It was fun, and although the kids were a little restless at the beginning, they really liked it (it was three hours long - they did GREAT!).
That's about it for our weekend so far. We hope to make it to church tomorrow, but don't have any big plans. It is still SO HOT here, and I'm praying for relief soon. I'm fairly certain it got to 100 degrees here today, and you'd think it would have been cooler up in the mountains. You would be incorrect. And the humidity is just so bad. You just feel damp and sticky as soon as you walk out the door. Gross. And impossible for Jonah.
Please say some extra prayers for Daylon and Bella tonight. Daylon's had some bleeding on the brain and a seizure from a trial medicine he's having to take to prevent a potentially fatal condition (VOD) from getting worse that has resulted from Transplant. So far, they've been able to avoid surgery (which would hold GREAT infection risk for him) and have stopped the medicine and increased his platelets in hopes to thicken his blood. Bella is on the same medicine for the same condition. Both of them are on continuous dialysis because their kidneys aren't functioning, which thins the blood further. VOD is potentially fatal. Kidney failure is potentially fatal. Stroking from this medicine is potentially fatal. Nothing about this transplant is easy. Please be in prayer for both of them. As always, many thanks for the prayers, love, and support for all the EB Sweeties.
Tuesday, June 22, 2010
praying...
(Unrelated) Addition: The National Geographic Channel (276 on DirecTV) will be airing Extraordinary Humans: Skin this afternoon at 4:00 EST. Half of the episode is on a child with EB and half is on a child with Icthyosis, another rare genetic skin disorder. We actually have a friend, here in town, who has Icthyosis that we met after Jonah was born. Please watch or DVR if you can. Sorry for the late notice.
If you don't know much about the Bone Marrow Transplants being done as a (hopefully someday soon) cure for Epidermolysis Bullosa, please see Bella's dad's most recent post here.
It is amazingly clear, easy to understand and walks you through the basics of the process (as well as the risks). But he also does a great job of expressing the emotion that goes along with this journey they're on and how faith will see them through.
Daylon (the first JEB child to go through transplant) will undergo his transplant on Thursday of this week. He's already been undergoing Chemo for eight days (I think), so you can imagine the tough time he's having right now. He gets a one day "break" (tomorrow) and transplant will be on Thursday.
Bella is being admitted to the hospital today, and will begin treatments immediately. She will begin anti-seizure meds (to counteract one of the chemo drugs) immediately and chemo will start tomorrow. Her transplant is scheduled for July 2nd.
I know I've already asked for prayers for these kids, but I want you to really understand what they're about to go through and the toll it will take on them and their families. I want them to know they are not alone... so please, I'm begging you, follow their stories (here and here) and keep lifting them up. This is a very long road they are about to travel. Assuming best case scenario, the kids' immune systems won't be back to normal for a year. And the stay in Minnesota will be four to six months at best.
I know we've never met, but I love you guys.
Praying for healing, strength, and peace...
If you don't know much about the Bone Marrow Transplants being done as a (hopefully someday soon) cure for Epidermolysis Bullosa, please see Bella's dad's most recent post here.
It is amazingly clear, easy to understand and walks you through the basics of the process (as well as the risks). But he also does a great job of expressing the emotion that goes along with this journey they're on and how faith will see them through.
Daylon (the first JEB child to go through transplant) will undergo his transplant on Thursday of this week. He's already been undergoing Chemo for eight days (I think), so you can imagine the tough time he's having right now. He gets a one day "break" (tomorrow) and transplant will be on Thursday.
Bella is being admitted to the hospital today, and will begin treatments immediately. She will begin anti-seizure meds (to counteract one of the chemo drugs) immediately and chemo will start tomorrow. Her transplant is scheduled for July 2nd.
I know I've already asked for prayers for these kids, but I want you to really understand what they're about to go through and the toll it will take on them and their families. I want them to know they are not alone... so please, I'm begging you, follow their stories (here and here) and keep lifting them up. This is a very long road they are about to travel. Assuming best case scenario, the kids' immune systems won't be back to normal for a year. And the stay in Minnesota will be four to six months at best.
I know we've never met, but I love you guys.
Praying for healing, strength, and peace...
Saturday, April 10, 2010
meet daylon
Hi friends,
Jonah ate 23 ounces today. Most of it was a fight. He also ate at least a half a cup of Cream of Chicken Soup. He really loves that stuff. It's funny (and wonderful)!
We've had kind of a low key day. Matt's parents came up last night, and his dad helped us in the yard today while Granny had Jonah duty. I mowed the whole lawn by myself. Gerry offered to help, but I NEEDED to do it myself. It was a beautiful day, I rarely ever get to be outside, I desperately needed the exercise, and it felt great to do a project start to finish. The boys trimmed the bushes, did the weed eating, and put down pine straw. The yard is looking much better but...
I have big plans for when Matt's dad comes back the first weekend of May. I don't know if it will actually happen, but I'm wanting to do a small vegetable garden in the backyard, and do an accent fence with flower beds in the front. I am NOT a green thumb (I don't have a green thumb?... See? I don't even know what the correct phrase is). This should be interesting.
_____________________________
So I found out about another baby with JEB today. He is nine months old, and his name is Daylon. He lives in California. He has Herlitz which means his prognosis is not good. He will be the first Junctional baby to have the Bone Marrow Transplant at U of M. His three year old brother is an identical match. Up to now (I think Rafi is patient #8 and McKenzie is #9) they have all been RDEB. His family is trying to raise money for the transplant (the closest possibility to a cure there is at this point). You can read about him and donate here, and you can become a Fan of his Facebook page here. Please help if you can. I know we all feel so helpless when it comes to these kids' suffering, but you could help save his life. That's pretty big. And if you live in the Corona area, there will be a Walkathon and Carnival on May 1st to raise money for his medical bills.
Jonah ate 23 ounces today. Most of it was a fight. He also ate at least a half a cup of Cream of Chicken Soup. He really loves that stuff. It's funny (and wonderful)!
We've had kind of a low key day. Matt's parents came up last night, and his dad helped us in the yard today while Granny had Jonah duty. I mowed the whole lawn by myself. Gerry offered to help, but I NEEDED to do it myself. It was a beautiful day, I rarely ever get to be outside, I desperately needed the exercise, and it felt great to do a project start to finish. The boys trimmed the bushes, did the weed eating, and put down pine straw. The yard is looking much better but...
I have big plans for when Matt's dad comes back the first weekend of May. I don't know if it will actually happen, but I'm wanting to do a small vegetable garden in the backyard, and do an accent fence with flower beds in the front. I am NOT a green thumb (I don't have a green thumb?... See? I don't even know what the correct phrase is). This should be interesting.
_____________________________
So I found out about another baby with JEB today. He is nine months old, and his name is Daylon. He lives in California. He has Herlitz which means his prognosis is not good. He will be the first Junctional baby to have the Bone Marrow Transplant at U of M. His three year old brother is an identical match. Up to now (I think Rafi is patient #8 and McKenzie is #9) they have all been RDEB. His family is trying to raise money for the transplant (the closest possibility to a cure there is at this point). You can read about him and donate here, and you can become a Fan of his Facebook page here. Please help if you can. I know we all feel so helpless when it comes to these kids' suffering, but you could help save his life. That's pretty big. And if you live in the Corona area, there will be a Walkathon and Carnival on May 1st to raise money for his medical bills.
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