Tuesday, November 15, 2011

Halloween and more

  First off I want to say that I was blown away by the response EB awareness week got! I am so impressed and so thankful to have such wonderful people in my life, such as you all, that have taken on the task of spreading awareness. From the bottom of my heart, Thank you!!!

  The EB awareness posts raised some questions in Sweden and an article was written on Daylon and his experience with the Bone Marrow transplant program at the University of Minnesota. Their hope is that if they can get Daylon's results out there, their government could consider the transplant as a worth while cause to fund and have doctors invest their time in (social health care there). There was a bit of a translation hurdle, but overal, the aricle is pretty good. Mostly,we are just so grateful and excited to be able to help any other EB family try to find hope for their child! You can find the article HERE

   As far as Daylon is concerned, life is pretty good. All of the kids have been sick recently, a couple with pneumonia and Daylon toughed it out pretty well. Don't get me wrong, he did get sick (pretty sick for most) but he stayed out of the hospital that's what we love. As luck would have it, he was antibiotics for an infection during the other kids sick time so I think that had a lot to do with it. He was fairly healthy last week and now he's coming down with a little something again the last few days. The constant corneal abrasion don't help anything, to be honest. Today when he was feeling well enough to get off my lap, he would crawl around for a minute or try to play and then crash into something since he can't see a thing. Then cry and rub his eyes, then scream cause he hurt his eyes and then sit for a couple of hours with me. It was like this over and over today. I tried stopping him from crashing, trust me... but let's just say he's a fighter in more ways than one. :)  I'm hoping that the rest he gets tonight will help to bring a happier day tomorrow
   We have a doctors appt on Wednesday and we're praying that his labs look a little better. I know it's not realistic, but I can't help but have this idea that the renal failure will just, POOF! go away. I can't even process the possibility of a kidney transplant. My mind just won't allow it. Who knows? Miracles happen everyday and Daylon has been blessed more than any one I've ever known, so maybe right? =)
   Because I missed Halloween, here are some pictures of Daylon in his costume and at the pumpkin patch (I'm throwing a couple in of the other kids too for good measure!). It was Daylon's first year trick-or-treating and our first year going as a family since he's been born!! I can't even tell you how good it felt to do some "normal" family things. It's finally cooling down out here and we've been able to go outside, heck, I can pick the kids up from school without his skin breaking down! It's fantastic! Back to Halloween, I have to say it was so adorable to hear Daylon say, "Teet-teet" (trick or treat)! He stayed on the sidewalk and couldn't care he was missing out on candy (he can't eat, so he has no idea what it is), but he loved going for a walk in his car...OUTSIDE the house!

He LOVED his pumpkin!!

We were actually able to have his foot unbandaged that week!

He stands!...he keeps his foot tilted, but HE STANDS!!

Keira the candy corn witch

Caleb as Frankenstein's monster

Violet as a jellyfish

Sadie Bug the Lady Bug


Mom to Many said...

My daughter was intrigued by the fact that Daylon has not had candy. She wonders (not that you would try it) what someone's response would be after never having had it. I told her even babies like sugar.
Interesting thought.

I have been taking care of this wound on Tyler's hand each day and it had made me think of how much time you must spend even still on wound care.

Glad to see your post.


Anonymous said...

So glad to see your post and that Daylon and the other kiddos are doing pretty good. Looks like they all had a Happy Halloween. They are such cuties and so precious. Hope things go well at the Dr. on Wed. for Daylon. Miss seeing the kiddos, love them so much. What a wonderful family you have. The pictures are really great and such beautiful children. Can't wait to see all of them again. All of You are in our thoughts and prayers. Hang in there Daylon! You Little Batman. You are a true Miracle. Take Care

All Our Love;
Myrna & Dwight

Bella's Blessings said...

Oh Jen, these pictures are adorable! I love the sight of Daylon's FEET... not foot! Yay! Daylon already is a miracle, so anything is possible when it comes to his renal function. Much love to you all!

Tim and Angelique

Anonymous said...

Your kids are adorable. Much love to you and your family

Lauren in GA said...

Hi, there, Jen. (I surmised that your name is Jen from Tim and Angelique ☺)

I have been reading your blog for a little while now. I have learned so much from you and I am truly grateful. I found your blog because I was googling treatments for my hand psoriasis and Google featured some pictures of Daylon...so I clicked over. I had never heard of EB before and I think you are doing a fabulous job of raising awareness. I have another blog friend (I've never met her in person, I must admit ☺) that does a highlight every Friday on her blog of children with special needs. I told her about your incredible blog...so she may contact you. I'm not sure how she finds candidates to highlight...but I wanted to give you a heads up in case she contacts you. I just love both of your blogs so, so, much and have learned so much from both of you. Thank you for sharing your journey with Daylon. He is amazing and I just love him. ☺

Her blog address is... http://wearetheraddest.blogspot.com/

Anonymous said...


We are a family from Belgium. Our son, Jesse, was born on april 14, 6 weeks to soon. But we were lucky, he was healty, so we tought... One week later our world collapsed! He had junctional EB Herlitz! We had a wonderfull team to support us. EB nurse arranged a network around us (a palliatieve team, a nurse who would help us at home, cooperation with our GP, contact with the local hospital...) Our little boy past away on july 5. I could not believe when I found your blog and read your story! It is amazing that your little boy is 2 years old!! I would love to chare our story with you and follow your story. I'm sorry, my English isn't that good. I'm trying to write without misspellings.

Can you give me your e-mail adress?

Becky said...

Your kids are adorable! Love how they all have those trademark super thin Edling lips! Yay for Daylon being able to go barefoot now ! No more bandages, whew !!

Claire said...

HI I found you blog via a comment left on another blog. What an awesome little man you have. My daughter has also been disgnosed with EB, her type is unknown as she has had 2 inclonclusive skin byopsies(?) but most probably EB simplex as hers is very mild and mostly contained to hands and feet, although she has wierd traits with it, her nails are affected, she has suffered corneal abrasion and at 3 days old pyloric atresia. My daughter is 7 and even though we don't have to go through 90% of what you guys do I do know what its like to see your child suffer, I have only skimmed the surface of your blog but congrats on the success of the BMT, amazing!

Mom to Many said...

Wow! What great comments! You are doing so much good Jen!

Thandi said...

December is almost over..and you've been silent.That is scary :-(