"Mama! Look! The clouds are sad now!"-Sadie (I thought that was pretty cute)
Hey all!
The computer broke down again, so I've been absent from the blogging scene...note to self: NEVER buy Toshiba again. Should have listened to Dad. (I'm sure he's gloating right about now) :)
Daylon has gone back and forth lately with fevers, back on forth with nausea and vomiting. I'm changing his leg bandages two to three times a day when the feeds kick back in and the diarrhea starts back up. He is one messy boy these days! He's still developing a bit more each day, although on particularly hard days, he only wakes up when he gets sick. Dr. Tolar thinks that Daylon's rash is either GVHD or an allergic reaction, but not a virus. He's getting biopsies down on the 7th and they'll be able to tell then. Please pray that it's not GVHD. For now, he's on extra steroid creams.
Daylon and Dr. Tolar
Today was a really great day for Daylon. He had a slumber party (ha, ha) with Daddy and then late this morning Brian came home to the Ronald McDonald house...with Daylon!!!
Caleb is still quick to tell everyone, "I'm the donor!"
I can't believe they all wear the same size! They're more than twice his age!
She's like a little mother to him! It's so sweet!
just click on this video. For some reason it only shows part of the screen. :(
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playing with the ball popper together
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His crib had become a catch all for all his stuff! Time to clear it out!
We have been waiting to be together as a family, so we could help Sadie Bug graduate from a "baby" to a "Big Girl" like Keira and Violet. She has always been one to do her own thing on her own time and when we moved to MN, she started to regress a bit. We figure it's stress related. Our goal this next month is to get her potty trained...again and off the binkie. Step one: remove the binkie
throwing out the binkie
TRASH!
Opening her "Big Girl" present...yes, I know it's wrapped in paper towels :)
Sadie and her "Strawberry Cake" (Strawberry Shortcake)
by the time he had to leave, he was all smiles! (Sorry, I took the flash off. It was so bright!)
As you can see we had so much fun! Daylon really came alive being out of the hospital and playing with his brother and sisters. Brian and I just stood together laughing and enjoying the sight of our children playing together for the first time in months. Those few hours were like heaven. No matter where I've been, whether it's with Daylon or our other four children, I've always had a nagging feeling, a wandering thought of the part of our family I'm not with. Not to mention the few moments in passing that I'm able to be around Brian (when family isn't here). It's been hard on all of us to be separated. Today, we were able to live in the moment and I had forgotten what that was like. I've thought a lot lately about how I wish I hadn't taken for granted all the times we had as a family back home, where I would try to rush through the evenings to get the kids off to bed. It wasn't like I didn't realize how great my kids are, or that we didn't spend enough time with them, it's more that I took for granted all the evenings we were together as a family. By the time Brian got home I just wanted to be able to cook without having someone at my feet, to get through dinner without someone dipping their green beans in the milk, or to make it through bath time and only need to use two towels to mop up the floor. Typically during bedtime stories and songs I would remember how wonderful my kids are and how happy I am in life, but then I have just minutes left to enjoy all 7 of us together. If I can give one bit of advice tonight, it's enjoy your family. When they (your children or spouse) want your attention, put down the paper, close your laptop, put your sewing away, throw in a frozen lasagna instead of making one from scratch, and be with your family. I hope you enjoy your day. Sweet dreams.
Thank you for the advice! I find myself thinking of you and your wonderful family and trying to do just that. Enjoy my family. The two older boys are gone all day long. They are with their school teachers more than with me now. It's very strange. That is so wonderful that Brian got to bring Daylon home! That is huge right? Have a great day! I hope your computer gets fixed soon!
I am so SO happy for your family. How wonderful that you all got to be together, and so much more of that to come, right? The pictures of your kids are priceless. I can't believe how big Daylon is next to the twins! I'm sure it's to his advantage though with all he's been through. And thank you for the wonderful advice. I think of that often and it's always good to have a reminder.
Because of Daylon, I have really taken the time to sit back a bit and just ENJOY the moments, whether they are full of chaos or everyone is quiet and relaxed. I can't imagine as a mother what it would feel like to have a baby that has been so sick, I pray for you and your family daily. I loved seeing pictures of Daylon with the other kids. I can't wait until he's home with all of you, where he feels like he can be himself. Sending hugs your way.
Looking at all of those wonderful pictures of all the kids together and Daylon smiling just brings tears to my eyes. I'm so happy. I fasted for Daylon again yesterday and I'm still saying lots of prayers hoping that his rash is just a simple rash and that he will get thru all the vomiting and diarrhea quickly. I'm so excited about the progress he has made so far. It's so awesome. Thank you for that reminder to take things slow and enjoy the moment. I have 2 little ones (a girl who's 2 and boy who's 8 months) and I know how hard it can be. I find myself really looking forward to naptime everyday. Haha. I do really enjoy watching them play and have fun but we all need a break sometimes. I don't know how you do it with 5 kiddos. You are one amazing woman Jen. Enjoy the rest of your day. I look forward to reading some more good news later.
Beautiful pictures. You are so right, enjoy every minute, soon they will be all grown up. It happens before you know it. Mine are 23,33,35. I can't believe it, where did my babies go? Then they have the grandkids and we get to do it all over again, but only the fun parts :) Take care, stay positive and God bless you and your family.
How good it is to see all of you together. Yes enjoy them now. Cleaning and scrubbing can wait till tomorrow for babies grow up we lead to our sorrows. So guiet down cobwebs and dust go to sleep, I'm rocking my baby and babies don't keep. Blessings. sg-KS
What a beautiful day that you were able to feel COMPLETE!!! Its always just so special to watch your childeren laugh and play together! Thats one of my favorite things to watch! I think its just so great he is able to get to enjoy his siblings! Being happy deff helps recovery and illness!!
You are so right about just putting the unimportant things to the side and just giving yourself and time to your kids. I always try to soak up my time with my little ones....cause I just think I CANT GET THESE DAYS BACK! I want to remember these days forever and enjoy all the time I have with them right now!
I am praying that he just has a allergic reaction and NOT GVHD!! Feel better Daylon we LOVE you!
Good luck with the BINKIE and POTTY training! I am sure she will get it down in NO time :)
Loved all the pictures of the kids! They are all so cute! The video with the monkey is darling! He is so happy! I always want to see a smile on his face. He just lights up a room and you cant help but smile yourself!
I am a friend of Tim from college and also a music therapist. I started reading Bellas blog and then Daylons a while ago. It brings me such joy to see the progress these kids are making and I will continue to pray for both your kids and families. Vicki
Loved the pictures and videos! We'll continue to pray for you and Daylon and the rest of your family. Thanks for your words of wisdom about enjoying what we have, really being in the moment. So true. You are going to have to write a book someday...you're such an inspiration to so many people already.
You and Brian are such amazing parents and such an inspirational family, all of you!!! Thank you for sharing all your family photos and up to date info on Daylon. My prayers are with all of you. Btw, I love the pics of Sadie throwing away the binkie, what a huge accomplishment!!! Love to all of you!!!
That was so great to see Daylon interacting with the other kids. The love, support and strength of a family can heal many wounds, physical mental and spiritual. I watched a medical show that said patients that have families in their rooms and the love and suppport from them recover so much better and faster than those who don't have that support. Your family is living proof of that!
I have been praying all day for Daylon so that it is not GHVD. I will continue to pray continuously. Know that we are all prying. I can't post from my phone so I don't post often but there has not been a single day (really really) when I don't pray for your son - most days I pray throughout the day. He is such an angel.
Teach me to do your will, for you are my God; may your good Spirit lead me on level ground. — Psalm 143:10
Daylon is obviously so happy to be with the family. I can't imagine the joy those few hours brought for every one of you. I'm so happy you had that opportunity. (And hope you have many, many more.)
BEAUTIFUL-I am speachless, thank you so much for sharing those sweet dear pictures of your children. Tears of joy overcame me when i viewed the pics of all your kids together. You can just feel the love, it's a wonderful testimony of family, faith and dedication. So happy that Daylon's continues to progress in his recovery. Praying and thinking of you Buddy!!!Peace and Love!
It's so good to see all of your kids together in those photographs. You can tell that Daylon was happy to spend that time with them. We pray for him and your family daily. We hope that his reaction gets worked out smoothly and quickly so he can get back to a healthy progression. Love to you all.
What a precious eternal family!! Made my heart happy seeing ALL the kids together. Funny how complete strangers can touch your heart in such a big way. Praying that he will continue to heel and soon be able to be full time with his family, all of it. A happy fall to you all, and lots of hugs to Daylon! Kristin
Jennifer!! i don't know why I waited so long to post something but hello!! I hope things are going well and I want to join the chorus of how amazing y'all are. You have such a sweet little family and I can only imagine the growth spurt you are all going through...Daylon is so sweet and such a special little spirit. I am such an emotional ball when I read about it. What a wonderful thing to be together with everyone!! Good luck and I hope and pray things keep getting better and better!! Lots of love to everyone!!
We're Brian and Jennifer Edling and we have 5 beautiful kids: Keira,8; Caleb,6; Violet and Sadie, 5; and Daylon who turned 3 in July. Daylon was born with a rare disease called Epidermolysis Bullosa. His specific form of EB is Junctional Herlitz. When contact is made with his skin, it blisters and peels or sometimes rips right off. Unfortunately, his form of EB also affects his soft tissues (organs, throat, mouth, eyes etc.) giving most kids with his condition less than one year to live. Thanks to modern technology, there's a new clinical trial Bone Marrow Transplant at the University of Minnesota for severe forms of EB. On June 24, 2010 Daylon became their first JEB patient to undergo transplant. We're all so excited at the prospect of Daylon's improved life! This is the story of our sweet baby Daylon, and life with EB.
23 comments:
Thank you for the advice! I find myself thinking of you and your wonderful family and trying to do just that. Enjoy my family. The two older boys are gone all day long. They are with their school teachers more than with me now. It's very strange.
That is so wonderful that Brian got to bring Daylon home! That is huge right? Have a great day! I hope your computer gets fixed soon!
I am so SO happy for your family. How wonderful that you all got to be together, and so much more of that to come, right? The pictures of your kids are priceless. I can't believe how big Daylon is next to the twins! I'm sure it's to his advantage though with all he's been through. And thank you for the wonderful advice. I think of that often and it's always good to have a reminder.
Because of Daylon, I have really taken the time to sit back a bit and just ENJOY the moments, whether they are full of chaos or everyone is quiet and relaxed. I can't imagine as a mother what it would feel like to have a baby that has been so sick, I pray for you and your family daily. I loved seeing pictures of Daylon with the other kids. I can't wait until he's home with all of you, where he feels like he can be himself. Sending hugs your way.
Looking at all of those wonderful pictures of all the kids together and Daylon smiling just brings tears to my eyes. I'm so happy. I fasted for Daylon again yesterday and I'm still saying lots of prayers hoping that his rash is just a simple rash and that he will get thru all the vomiting and diarrhea quickly. I'm so excited about the progress he has made so far. It's so awesome.
Thank you for that reminder to take things slow and enjoy the moment. I have 2 little ones (a girl who's 2 and boy who's 8 months) and I know how hard it can be. I find myself really looking forward to naptime everyday. Haha. I do really enjoy watching them play and have fun but we all need a break sometimes. I don't know how you do it with 5 kiddos. You are one amazing woman Jen. Enjoy the rest of your day. I look forward to reading some more good news later.
Take Care,
Amber McLaughlin,CA
Beautiful pictures. You are so right, enjoy every minute, soon they will be all grown up. It happens before you know it. Mine are 23,33,35. I can't believe it, where did my babies go? Then they have the grandkids and we get to do it all over again, but only the fun parts :)
Take care, stay positive and God bless you and your family.
How good it is to see all of you together. Yes enjoy them now.
Cleaning and scrubbing can wait till tomorrow for babies grow up we lead to our sorrows. So guiet down cobwebs and dust go to sleep, I'm rocking my baby and babies don't keep.
Blessings. sg-KS
What a beautiful day that you were able to feel COMPLETE!!! Its always just so special to watch your childeren laugh and play together! Thats one of my favorite things to watch! I think its just so great he is able to get to enjoy his siblings! Being happy deff helps recovery and illness!!
You are so right about just putting the unimportant things to the side and just giving yourself and time to your kids. I always try to soak up my time with my little ones....cause I just think I CANT GET THESE DAYS BACK! I want to remember these days forever and enjoy all the time I have with them right now!
I am praying that he just has a allergic reaction and NOT GVHD!! Feel better Daylon we LOVE you!
Good luck with the BINKIE and POTTY training! I am sure she will get it down in NO time :)
Loved all the pictures of the kids! They are all so cute! The video with the monkey is darling! He is so happy! I always want to see a smile on his face. He just lights up a room and you cant help but smile yourself!
I am so happy to see him take a trip to RMH!
That is wonderful. A little bit of "normal" in the midst of this.
Praying,
Cheryl
What great photos! Daylon is really starting to look like Brian and the other kids!!!
I am a friend of Tim from college and also a music therapist. I started reading Bellas blog and then Daylons a while ago. It brings me such joy to see the progress these kids are making and I will continue to pray for both your kids and families. Vicki
Pix and video so exciting! so great that he went to RMH and everyone looks so happy.
Yay for a great day! I am praying that the rash goes away and that it is nothing major.
I so happy for you guys! The pictures shows it all. I can only barely imagine your joy being with your family together. Thank you for the advice!
Keeping Daylon in our prayers. May God permit his continuous recovery and keep GVHD away.
Very best,
Carla, from Portugal
Loved the pictures and videos! We'll continue to pray for you and Daylon and the rest of your family. Thanks for your words of wisdom about enjoying what we have, really being in the moment. So true. You are going to have to write a book someday...you're such an inspiration to so many people already.
You and Brian are such amazing parents and such an inspirational family, all of you!!! Thank you for sharing all your family photos and up to date info on Daylon. My prayers are with all of you. Btw, I love the pics of Sadie throwing away the binkie, what a huge accomplishment!!! Love to all of you!!!
Cousin Christi
That was so great to see Daylon interacting with the other kids. The love, support and strength of a family can heal many wounds, physical mental and spiritual. I watched a medical show that said patients that have families in their rooms and the love and suppport from them recover so much better and faster than those who don't have that support. Your family is living proof of that!
YOU ROCK!!!!!!!!!!
I have been praying all day for Daylon so that it is not GHVD. I will continue to pray continuously. Know that we are all prying. I can't post from my phone so I don't post often but there has not been a single day (really really) when I don't pray for your son - most days I pray throughout the
day. He is such an angel.
Teach me to do your will, for you are my God; may your good Spirit lead me on level ground.
— Psalm 143:10
Daylon is obviously so happy to be with the family. I can't imagine the joy those few hours brought for every one of you. I'm so happy you had that opportunity. (And hope you have many, many more.)
We're still praying for you.
BEAUTIFUL-I am speachless, thank you so much for sharing those sweet dear pictures of your children. Tears of joy overcame me when i viewed the pics of all your kids together. You can just feel the love, it's a wonderful testimony of family, faith and dedication. So happy that Daylon's continues to progress in his recovery. Praying and thinking of you Buddy!!!Peace and Love!
It's so good to see all of your kids together in those photographs. You can tell that Daylon was happy to spend that time with them. We pray for him and your family daily. We hope that his reaction gets worked out smoothly and quickly so he can get back to a healthy progression. Love to you all.
What a precious eternal family!! Made my heart happy seeing ALL the kids together. Funny how complete strangers can touch your heart in such a big way. Praying that he will continue to heel and soon be able to be full time with his family, all of it. A happy fall to you all, and lots of hugs to Daylon! Kristin
Jennifer!! i don't know why I waited so long to post something but hello!! I hope things are going well and I want to join the chorus of how amazing y'all are. You have such a sweet little family and I can only imagine the growth spurt you are all going through...Daylon is so sweet and such a special little spirit. I am such an emotional ball when I read about it. What a wonderful thing to be together with everyone!! Good luck and I hope and pray things keep getting better and better!! Lots of love to everyone!!
Lydia
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