Thursday, October 28, 2010

Day +125- Long time no talk to!

  Hey everyone!
  I'm so sorry for the delay in posting! Thank you to those of you who emailed, inquiring after Daylon. Our computer broke...AGAIN..(UGH! Toshiba!)...and we are without a computer for the next 3 weeks until they mail it back to us. I'm able to post tonight courtesy of our friends, neighbors and superheros, the Pops! Thanks for letting us borrow your computer guys! We owe ya one!

Catching up with the Edlings:
We all attended a beautiful memorial for Bella. We had to buy Daylon a suit since all he usually wears is inside-out onesies!

We went to Hidden Falls on a picnic with the Pops and the Ringgolds. I need to apologize ahead of time to the Pops...I had their family photo with the all the other photos to be downloaded onto the post and I apparently reached my year photo max with blogspot and they randomly picked a picture not to unload and that was the one. I've been trying for an hour to upload it by erasing pictures, but it's not working. Sorry guys!

L-R: Tim, Brian and Steve skipping rocks







Yes, that would be our son who decided to take off his shoes and socks and go knee deep in the Mississippi River when it's 45 degrees outside! He about gave me a heart attack! Funny story: He left his converses on a rock and we had no clue. We searched the house for his shoes and he eventually told us he left them behind.  Five days later the kids and I went back, just to check and guess what!...they were still there!

Tim's sister, Tracy was down from Spain and we got to visit with his mom too! They are such wonderful people!





 Daylon has been doing fairly well. This weekend the Jen and Bart Winkler let us use their cabin in Turtle Lake, Wisconsin to celebrate the Caleb's (4 on the 16th) and Keira's (6 on the 26th) birthdays since we weren't able to have a normal party here. A SUPER HUGE "thank you" to the RMH staff for all the presents they gave the kids! They spoil them rotten! :) You guys are the best! The cabin was absolutely amazing, but I'll get to that later. Daylon was such a sweet little boy the entire time. He hardly cried and loved taking in all the new surroundings. He played so nicely with his toys so I could cook and he loved hanging out watching tv being held. What a doll!





Grandma and Grandpa De La Cerda and Aunt Emily were able to sneak away to WI for the trip too!




holding Daddy's hand






 We spent some time in Stillwater, MN. I LOVE that town! It's so cute. It has a bunch of old fashioned looking stores and lampposts. It's a great place to window shop and walk down by the water. We ate at Leo's malt shoppe which is this cute little restaurant with ruby red booth and chairs and hamburgers and malts made fresh from the back. I felt like I was living in the 50's!....I love that!

The kids are so excited for Christmas! They say Christmas is for children, but I live for their excitement.



Teddy Bear Park. Everything is done up in trains and bears. By far, one of the coolest parks we have ever visited!


Keira and her birthday morning donut-post candle
  Daylon's creatinine levels are still on the rise unfortunately. They're nearing 5 (should be .58 or lower) and this far out from transplant....well, lets just say it's not good. They have decided to hold out on deciding on a kidney transplant for a bit longer. We need to get the whole GVHD idea under control (meaning, does he have it or not) and then his CSA dose will go down and we can watch how he does and decide.
  The last 36 hours or so have been rough on Daylon. :( He's been vomiting a lot. I mean, A LOT. Twice today he threw up blood and the last couple times tonight it's been darker, so I'm assuming it's old blood. This happens every so often when the blistering in his stomach gets out of hand. He's cried, moaned and fussed the entire day. In fact, the only time I saw him smile today was when Keira was entertaining him. Bless that child.
She is such a wonderful big sister. I wish I could have taken care of my siblings like she does hers. Anyway, he's been in a lot of pain and discomfort and we needed to give him extra bumps of Ativan, Benedryl (for tummy troubles believe it or not) and two extra doses of Oxycodone on top of his normal meds. He's stopped peeing over the last week and only had one poopy diaper today (yep, I just went down that road! ). Normally there's several, so I'm not sure if that's a good thing or not.
  Dr. Tolar has warned us about the ups and down of the skin post transplant and how it's normal to see improvement come and go a little bit until hopefully, a few year post transplant, the skin stays improved. Well, right now Daylon's skin is on a bit of a decline. He got a little scratch under his nose, two of his fingers blistered under his nails and bled and a his groin area had a little bit of skin lift away. The stomach acid that drips from his leaky g-tube has burned the skin on his tummy and yesterday's throw up event (yes, it was an event) left his neck and under his chin raw and irritated. Ok, so I know I sound a little doom and gloom, but keep in mind, this is a kid who was completely covered from the neck down 4 months ago. His feet are continuing to heal everyday, which is HUGE. They were such a mess such a short time ago! This is just a bump in the road. :)
   Daylon had his Day +100 biopsies last Wednesday (a bit late, but Dr. Tolar likes to get as many kids done on the same day so the photographer doesn't have to come back and forth a million times). There were 8 biopsies taken (including one to test for GVHD) and they performed the blister test again. So, some things to remember: Pre-transplant, Daylon's first blister (there are three taken at once) started to form at 3 minutes with all three blisters formed at 5 minutes and 18 seconds. His Day +100 blister test: first blister at 16 minutes, with all three formed at 18 minutes and 42 seconds!!!! Can you believe that?! I am so stoked! This transplant is really working! I know it sounds crazy that I should doubt it working, but this is and has been are only option to save Daylon. Making the decision to come here has been the scariest and most stressful decision of our lives.  It would be foolish of me to say that we're out of the woods, or to think that Daylon's life isn't in danger anymore. It is and I know that we've/he's got a long road ahead, but it's thrilling to have the possibility of seeing him off to his first day of school, taking pictures of him on Prom night, or dancing with him on his wedding day. It has been one of the hardest things of my life to rock my baby to sleep every night, just staring at his sweet little face knowing that I would never see him grow up. Every day I wished him here with me on earth was another day of pain for him to live through. I don't know how to put into words the heartache that comes with raising an EB child, or any special needs child.
  You know the song "Away in a Manger"? This time last year, Daylon was very sick. I would cling to him and rock him for most of the night, since he hardly slept from all the pain he was in. He loved "Away in Manger" and it was in those months that I developed an attachment to that song and especially the third verse:

Be with me Lord, Jesus I ask they to stay,
close by me forever and love me, I pray.
Bless all the dear children in thy tender care,
and take us to Heaven to live with thee there.

This week is EB awareness week. I would like to ask each of you a favor:

Will you please share your knowledge of EB with one person, who doesn't know about EB? It can be a family member, friend, neighbor, the produce boy, anyone. If we can educate the world on EB, there would not only be more funding for a cure of this painful disease, but also more understanding of what these kids go through the respect they deserve would be given. It would be wonderful if a stranger could look at an EB child and not think that his/her parents abuse them (yes, it happens and it hurts), or quickly get up and move away thinking that the skin condition is a contagious disease, stare at fused fingers or torn skin on the face, or make comments about the smell of infection or open sores. These kids often feel alienated and lonely. They deserve to be treated like the children that they are. Some EB patients are living into adulthood these days and are fighting their own obstacles. Wouldn't it be great, if they everyone understood their condition and was welcoming? I know, it can be hard, but please open your mouth and share what you know. If you would like to learn more about EB please visit the DEBRA website. With your help we can cure EB.
Sweet dreams.

13 comments:

Kim M said...

Please give our thanks to the Pops also - I miss Daylon when you don't post. But, I also rejoice that you are so busy with your family and caring for Daylon that it is hard to post (that sure beats the time at the hospital when you had too much time on your hands waiting to be able to hold him again!!).

Loved the pictures, fun to see all 5 kiddos in the same pictures!!! Love seeing Daylon's personality in the pics too.

Continuing to pray for his kidneys to miraculously start working, his physical development and those cells to continue growing!!

Praying in Waterford, MI
Kim M

Susan said...

Sorry about your computer!

OH MY GRAVY what wonderful pictures! Thanks so much for posting them!

Continued prayers for you all.

Linda said...

Dear Jenn; Thanks for the update. I thought maybe you guys decided to split town, before the snow, and head back to California.
I just love the pictures you take of your beautiful family. You have a real talent there Jenn.
Will continue the prayers for precious Daylon. He is such a fighter with a great spirit. Gotta love that boy.
Love and Peace Love Leah's Nana

Rachel said...

Jenn-
Thanks for posting... Love the pictures, so fun that your family could make it up to the cabin with you! You two are the strongest people I have EVER met, and your faith and strength just gives me the chills. As always, Daylon (and lately, his kidney)and your family are in our prayers.
Rachel (Eynon) Glenn

Mom to Many said...

I am so glad that a broken computer is all that is keeping you away. I was worried.
I know that you are very busy and your first priority is your sweet family, but I enjoy "hearing" from you.

I am so glad Daylon has such sweet siblings that bring joy to his world. He is a very blessed little boy to have such wonderful parents who love him.
I know the Lord loves him too.

I have a little kindergartener who is just counting the MINUTES until he gets to go and be a Pirate at school. I've already sent off a pirate and a king this morning.

My Dad's cancer surgery went well yesterday. It was a 4 hour surgery, phew. The Dr. removed the right kidney and adrenal gland. He felt good about the margins. He joked that my dad lost weight yesterday. Not the way I'd like to lose it. :o)

I am so sorry your computer is giving you fits. I know we can throw wishes for what we would like to do for others, but my Mother said she wished she could send you a new one. (I thought that was sweet.)

I hope you have a good week. :o)

Timea said...

Wow, your new pictures are absolutely beautiful. The love you all have for each other shines through in your photos and puts a smile on our faces. Its a fantastic thing to see Daylon out of the hospital, wearing clothes (adorable suit) and enjoying his family. You guys are amazing and I really mean that.
Beautiful family...
Elle's auntie Timea :)
Sacramento, CA

The McLaughlins said...

I'm sorry your computer broke. That's a major bummer. I was getting worried. I'm glad to hear that there is still some good news. We'll take what we can get! :0) I am still praying that Daylon doesn't have GVHD and that his kidney's heal so that he doesn't need a transplant.

I absolutely love the pictures you posted. He is so handsome in his suit. Oh...I love it. He's growing to be such a cute lil man. He is so lucky to have such wonderful siblings. (and parents too!)

Thank you for being so candid with your feelings Jen. It's beautiful how you describe your love for your children and the desires you have as a mom. Every mom wants only the best for their children and for them to have a long and beautiful life filled with happiness. I can't imagine how hard it is for you to have to see Daylon in so much pain day after day. I can understand the struggle you must have with your feelings about the whole situation. Stay Strong beautiful lady!! Lots of prayers for not only Daylon but for you and Brian and the rest of your gorgeous family!!

Lots of Love,
Amber McLaughlin, CA

Amber said...

I don't think I'll ever sing "Away in a Manger" againt without thinking of you guys and Daylon!

I always love coming to your blog and reading progress. I can only imagine the fear and unease you feel, but I can tell you your hope and optimism are greatly inspiring, if that is any comfort to you?

I love the fall pictures of your kids. Do you have some amazing camera? The lighting and clarity is amazing!!

Anonymous said...

Why would you be surprised by your daughters care and love she has for Daylon......look what she witnesses every day. You are the most awesome mom and dad any kid could have. I missed your updates (hope the computer issues get taken care of asap) and am thrilled to see that handsome adorable face in clothes!!!! You take great pictures and capture the mood in each one.Like Amber said I will never hear 'Away In a Manger' and not think of Daylon ever again. My coworkers ask for Daylon every day and they pray for him like he was their own child. He has become 'our' Daylon. Much love and tons of prayers to you and the entire family. xoxoxo from California.

sharon kaye said...

I loved seeing Daylon in his suit. He is so handsome. I think about you everyday and glad you were able to borrow a computer for an update. Keep hanging in there through these bumps in the road. I'm so glad your mom and dad and Emily were able to visit. I loved seeing the photos of them. It made me miss them and all of you.

Kathie said...

You are all in our thoughts every day and payers every night. When we attend the Temple, which we try to do every week, we put all of your names on the prayer roll so you've got lots coming your way. I know why Daylon chose you both as his parents because knowing the tough road he would have, he knew you would be up to the challenge and take care of him in the best way possible and with that special love that you share with your family.
Heavenly Father must be so pleased with how much you love His children for Him and the extra special care and love you give them. They sure are a cute bunch! I love the picture of Daylon in his suit. I'm sorry to hear that he's had a rough patch lately.
When we don't see your posts, we hope and pray its not because you're so busy dealing with a crisis in his health, besides being so busy any way. I'm glad that it was only the computer (although I know that's a bummer). Know that we also specifically pray for your strength and stamina to be magnified and that the sleep that you do get will be felt as if it were doubled.
Thanks for posting the pictures of the kids. They are so adorable! We feel like we've come to know your family when we've never met before (found out about you through the Ringgolds posts - I use to go to school with Tim in CA) and we are in Utah.
May Heavenly Father guide your footsteps and shower you with an abundance of blessings.
Cathy and Mom

Anonymous said...

We Love All of You!
So, Happy to hear news about Daylon! We are sending Birthday Wishes to Caleb & Keira! with extra LOVE, Hugs n Kisses to all of you!

Love,
The Meaders Family

Shelley said...

Such beautiful pictures! I'm so glad you were able to get away for the birthday celebrations, looks like a blast. :) Still praying for you and for Daylon. Thanks again for letting us be part of your journey.