Tuesday, October 12, 2010

Day +109

Hello Everyone.
I just wanted to let you all know that Bella's heart stopped yesterday afternoon and she went to live with our Heavenly Father and elder brother, Jesus Christ.  We are all shocked and saddened by the loss of sweet Bella. I ask that you please take a moment from your day to visit Bella's blog and leave a message for her family. We have come close to loosing Daylon a few times, and I was beside myself. I can only imagine what her poor family is suffering right now. We can all rest a little knowing that Bella is finally free of EB and all the pain that she has had to endure in her earthly life. We love you, Bella! Until we meet again!



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 Daylon has had a good weekend. We have witness the benefits of your prayers in our lives once again.
-On Tuesday I posted that Daylon's post stroke issues were really concerning us and that his personality wasn't improving the way we'd hoped
-On Wednesday we united in special prayers for Daylon, with an emphasis on his kidneys
-On Thursday...no joke...Daylon woke up happy and smiled and played all day. We were thrilled with the happy change of events, but honestly wrote it off as a fluke day.




Daylon playing with his "Tickle me Elmo"

   ALL WEEKEND LONG, Daylon has smiled, played and coo-ed! It's been SO amazing to have our happy baby back! He's so adorable! I just want to squeeze his little cheeks! I don't, of course....his skin is good, but not that good! :) I know he's my kid, but I think he's so cute! Oh. I have a new first in the life of Daylon! A therapist was fussing over him and said, "He's such a pretty baby!". I just sat there numb and on the verge of tears. That has NEVER been said about him before! When people look at an EB kid, they often have a hard time seeing beyond the sores, pain, suffering. He's always had a personality that shines through all his boo-boos and he's been called a doll, sweetheart, angel, sweet, pumpkin,even cute (which I pretty sure people use to describe his personality) but never pretty. Looks aren't everything, that's for sure,  but to hear that he's improved enough for other people to see him as his family and friends see him, felt great. :)
  Daylon's CSA level was upped again on Saturday. His rash is getting worse and they want to keep his levels up high to help his body fight GVHD, if that is what it is.  Considering all that, his kidneys are maintaining consistency at the level they're at, which is a little miracle in itself.
   On Sunday, Daylon rolled a bit during nap time and his G-tube started to fall out. I'm almost grateful I was at church for all that. By the time I called, Brian had dealt with the fiasco (he called the BMT Fellow) and it was over. Good save, Brian!
   OH! I forgot! The end of last week Daylon started using his left hand to clap by hitting his tummy! It was so fun to watch him adapt to his circumstances and be happy. Each day this weekend, he made big strides with moving his right arm up and getting it to interact with his left. Sunday night he start actually clapping! That's right folks! Both hands, moving together!...on purpose! Go Daylon!


   Well, that's about it for now. I'm totally drawing a blank. I blame 4 hours of sleep each night. :) We're so thankful that you're all Daylon's cheerleaders!

Pictures from this Weekend:

Friday: Keira and her puppet for the RMH puppet show






Saturday: Built a fort in the bedroom. Played, ate dinner and then watched "The Princess in the Frog"


Sunday: after dinner

16 comments:

Jan's Blog said...

Daylon is a pretty baby. In fact, I see changes in him almost every day this past week. Daylon is coming back and it shows. What a wonderful blessing that I feared might be denied him. He's just a miracle. Special thanks to his doctors and nurses and technicials. They are in my prayers also. Love to you all...Jan

Anonymous said...

Hi,
I am a friend of Bella's and want to say I have been following Daylon too and continue to pray for him to improve daily.

Tina in NJ

Jamie said...

I just found Bella's blog from another EB baby's blog and it broke my heart for her and her family. After 2 hours I only stopped reading b/c my daughter woke up from her naptime. When I first found Daylon's blog I was the same way, but they were completely happy tears that time. My daughter just turned one and I see her in Daylon and Bella's pictures, we almost lost her at birth due to preeclampsia from me, I pray for you and now Bella's family every day. I think Daylon is a gorgeous baby, give him a kiss on that beautiful face for us!
love-
the Garcia family

Jess Edling said...

So I am a basket case today. Jen, I'm not kidding! I have been crying all day. I followed Bella's blog as fanatically as I do all things Daylon. Combined with how much I have been missing all of you lately and realizing I'm a shmuck because we have barely talked since I got back... Yeah. Crying. I'm so glad Daylon is his old happy self again! That kid brings me so much joy. All of your kids do. I wish I was half the woman you are. I admire you so much. Thanks for the update on the family. Miss you all and love you lots!

Kim M said...

How exciting to hear that Daylon's personality is coming back!!! I've been praying for Daylon since you created the blog for us to know how to pray and how the BMT is going. There were rough times when he was in ICU and now look at him!!! Yeah Daylon!!! Yeah God!!!

You have related previously that Bella is Daylon's girlfriend, knowing your families knew each other before the BMT and now to know the Ringgold's have a different outcome must be heartbreaking for you too.

I celebrate that sweet Bella no longer hurts from EB but is dancing with Jesus and worshipping God with Him. I will continue to pray for Tim, Angi and Ali as they now have to adjust to the pain of no longer having Bella here with them.

I'm continuing to pray for Daylon and will pray specifically that his kidney's get working where the docs are astonished!!!

Loving your little man and praying for him in Waterford, MI

Kim M

Aviles Family said...

There looks to be a huge change in Daylon on this post! You can see something in his eyes, where it's like he's back! The power of prayer is amazing.
I couldn't believe it when I read Bella's blog today. Their poor family! I thought of you too and how you guys must feel about this turn of events. Thank goodness we know she is out of pain now.
Love you Jenn! We will keep praying for Daylon's kidneys. Oh and his skin looks fantastic!

Rob and Nicole said...

Daylon is a pretty baby, he is beautiful! It is so great to see him laughing and with that adorable smile spread across his face, such a blessing. I will continue to keep Daylon and you and your family in my prayers.

Sara said...

I think he's beautiful ;)
and I am thankful you are there for the Ringgolds. My heart aches for them. We are walking for Bella on Sunday...bless her heart. Daylons got a mighty angel watching over him now.

sharon kaye said...

Thank you for telling us about Bella. I just sat and cried and prayed for their family.
Yeah for Daylon's improvements. He will continue to improve even more. We love you all.

Katherine @ Grass Stains said...

So wonderful to see happy Daylon! And he IS so pretty, INDEED!

Mom to Many said...

Hi Jen,

I am with Jess. It has been a really hard day today. I have followed since the beginning in Mn. My heart is entangled.
I am so thankful for Daylon's successes.
I am so glad that his little personality is returning. One great benefit to being young is the possibility for the brain to remap around damage. We know sometimes it does not happen that way.
Hugs to you Jen. I wish so much that I could help you. I mean roll up my sleeves and help. Not just writing and praying. Not that it is "just" praying. We know how much that helps.
I am thinking about you and your sweet family.
Cheryl

The McLaughlins said...

Jen,
Thank you for this wonderful post today. I have been so upset since yesterday after hearing about Bella Ringgold and being able to hear such positive and uplifting things about Daylon today, it has really lifted my spirits. Daylon is the reason I even know anything about EB and it's also because of Daylon that I even ever knew about his little girlfriend Bella. As my heart aches for them it leaps in joy for you. I know Daylon isn't out of the woods yet but, he is doing so well and he is so strong and he inspires me everyday. The strength he has shown is phenomenal. And the strength you all as a family have shown is phenomenal. I know it is thru God that this Miracle of Daylon being healed has been made possible. I am so excited to read that his cute little personality is coming back after his stroke. That is so Awesome!! That right there is a miracle. I am continuing to pray for Daylon and for your family that he DOES NOT HAVE GVHD and that his Kidneys will come back to 100%. I am also praying for his Dr's and nurses as well. Please know that you are in my constant thoughts and that you are loved, even if we have never met in person! :0)

Lots of Love,
Amber, Craig, Malorie(2 1/2), and Liam(9 mos.)
The McLaughlin Family, CA

CrsLeigh said...

I was so so sorry to hear about Bella... praying for her family. Daylon is doing so well!!1 It's great to hear about his strides forward. My students told me this a few days ago when they were struggling with a class project... "just keep swimming, just keep swimming, swim, swim, swim". It made me think of you all and Daylon and how you all just keeping pushing along forward. Swim baby!!! Swim! <3

BRIAN AND BROOKE said...

I am sorry to hear about Daylon's friend Bella!! Will be sending prayers her way as well at this time!!

I am so HAPPY you had your cheerful son back!! The smile or laughter of a baby can make anyones day :)

I wanted to tell you that from the first day I saw Daylon and read about him I thought he was such a handsome sweet boy! I had not even read about his personality yet :) Its easy to see through the sores and scabs when he is a innocent child of our Heavenly Father !!!! You just cant help but to LOVE THEM automatically !!

YAY for Daylon using both hands!! Progress each day!! Praying for the rash to get batter and for his kidneys!! Love you EDLINGS!!

Kristyn said...

I love you guys so much and Im so happy for Daylon.. cant wait to see you !! couple more months ..love you guys!!

The McLaughlins said...

Jen,
I just noticed your sweet note on my blog yesterday and I wanted to say Thank You!! It's nice to know that you notice me. ;0)

I'm so bad about doing my blog...hahaha...I made one post...but I'm gonna try and be better and that way you can keep up with my family too.

Lots of Love,
Amber McLaughlin,CA