Monday, November 1, 2010

Day + 129 Halloween!


  Hello, All!
  I hope all of your children have filled their bags this weekend with plenty of treats, so you can thoroughly enjoy your mid-night candy bag raid. :) No. No one out there does that. ;)

  Ah! I feel SO much better today! Last nights journaling was so therapeutic.

  Our morning started out with Sadie heave ho-ing in bed, followed by Brian feeling queasy and two other children have another sort of tummy trouble if you catch my drift. All of that loveliness added up to a day lock up in our room. No church, no nothing. It actually wasn't a horrible day to be honest. We were all together without a single interruption from Dr. appointments, therapy, dialysis or even school.
   Poor Daylon is still suffering with his eyes. He did open his eyes for a few moments here and there, but they were pretty much clamped shut and dripping tears. He amazes me so much. He hardly fussed today but was in obvious pain. In fact, at one point tonight I had him on my bed and when he could feel that I was next to him and spoke in a silly voice he would do his little Stevie Wonder smile. :) I hope that's not disrespectful, but that's who he always reminds me of when he smiles with corneal abrasions! Today I found two new sores on his chest where his Hickmann must have touched. It is hard to see his skin's new condition come and go, but Dr. Tolar thinks that by getting wounds, the news cells are forced from the bone marrow onto the body. Basically, these little dips in skin condition should equal a better long term condition.  As long as they continue to quickly heal, we're still on the right path. :)

Today there was a whole lot of this...
                                                        and this...
but we did see some of this...
and this...
   On Saturday, we went to Borders and purchased the signing book I grew up on.  It's called, 'The Joy of Signing'. I'm familiar with the book and I really like the format of it, so it was an easy pick. I haven't needed to sign in 15 years so I've been brushing up on it. You know, initially I felt fairly confident in my ability to sign for Daylon, but after looking over the book...YIKES. There are so many words that I had no clue how to sign, for example; vinegar or Korean or humble or blood pressure. I have to admit, I did have a moment sitting here on the couch  tonight were I started to feel like I might hyperventilate. :) Ha! Yeah, uh can you say "drama"?  Thankfully it lasted for about a minute when I realized that Daylon won't need to know about vinegar until Easter when the eggs come out, so I bought myself another 6 months easy.  :) LOL! The kids have learned about 15 signs this weekend and Keira and Caleb have them nailed. The twins are about 50/50, but hey, it's only been two days. Keira actually signed "Mom, I want dinner" all on her own today, so I was impressed. :)
  Our big news of the day is that Dr. Tolar wrote me this evening and said to go ahead and buy the flights home! I'm so excited! We fly in on December 20th!!! There's a lot of work to be done, but he wanted to get it done sooner rather than later. As of right now, he said we can keep Dr. Metz as his Pediatric Dermatologist back home and we'll probably work with the BMT program in San Diego.  We're still trying to hammer out the details. I have no clue where dialysis will be. Do you know that less than one percent of people dialized in the US are under 18yrs old? The pickin' is very small when it comes to find a new dialysis unit. I just hope CHOC (our hospital...Children's Hospital of Orange County) dialysis babies.  I'll keep you all updated, but I had to blurt the news!
  Here are some pictures of our Halloween.  We pushed the two Queens together, I made some ghosts, bats and spooky faces from construction paper and put them up and then we ate a picnic dinner on the beds and watched 'Mickey's Halloween Treat'. The kids loved it. Hey, whatever makes 'em happy, right?
 Keep those prayers coming! We love our support community! You guys are awesome!Sweet dreams.
If you look closely, you can see Daylon's leg. He's there...Just relaxing.

Keira's Halloween face...she really is a nice kid...promise!

Ahhhhh. I love my little Monster.

Oh! Speaking of I got to let you all in on the life of twins. Here's an ACTUAL conversation I had with the twins in the van on Saturday. They have become quite the double trouble....

Daylon: AHHHHHAHHHHHAHHH! (randomly yelling)

Me: Are you talking back there my little Monster?

Sadie: Mama! Don't call him that! He is not a monster, right Ly-lit (Violet)?

Violet: Right, Sadie Bug! Mama! Don't call him that! He is not a monster. He's a   Daylon, Mama. Right, Sadie Bug?

Sadie: Right, Ly-lit! He's a Daylon. Mama!

This is how sooooo many conversations go around here, right now. Well, I guess it's true. They are twins. :) .....and to think I doubted it.


Starla said...

Glad you all are doing better.

Just a note in the dialysis. I work at a childrens hospital in slc and we dialyze babies. I would be SHOCKED if they didn't too because they're the same level hospital as us. But if they didn't, maybe Loma Linda would?

Mom to Many said...

Good morning Edlings!

I am so glad to hear you have the go ahead to buy tickets. I am sure you all need to get away.

So sad Daylon's eyes are still hurting him. Poor guy.

On the subject of baby sign... All my little boy ever picked up was the sign for milk. Lol! He knew what was important to him.

Your crew looked relaxed. :o)

I am so glad your twins are keeping you on your toes. Never a dull moment for sure.

Well, my little boys have descended upon me. They are ready for breakfast. :o)
Now to find something they will eat. (Pickies.)


Anonymous said...

Hi! I'm a visitor from Bella and Jonah's blogs. I've been praying for Daylon. He is precious. My heart hurts for his pain. He is inspiring and I enjoy reading your blogs.

You are one dedicated Mommy!

Big hugs,
Kim from California

PS - so thrilled you are going home for Christmas!!

jeanine said...

So glad that you get to go home for Christmas!

Lisa said...

Your kids are hilarious.

Happy news that you can go home :)

Christine Vecchione said...

I having been praying for Daylon since the beginning of your transplant journey. I also work as an RN at CHOC. CHOC does not have its own outpatient facility for dialysis at this time but uses the one at St. Joseph's next door. Here is a link for their home page- they do lots of children and several that I know have been very happy with the care they receive.

The McLaughlins said...

It looks like you guys had lots of fun on Halloween together. I love those little glow sticks. The kids love em and you can get them for so cheap. Like 15 for a $1. I'm sorry to hear that Daylons eyes are still hurting him. He's so strong. I really hope they heal quickly. I had a really bad eye infection about 5 years ago and it hurt soooo bad. I couldn't open my eye either and it just watered and burned. I feel his pain for sure.

I am so glad to hear that you guys are gonna be able to go home for Christmas. That's gonna be great. Did Dr. Tolar say you'll have to go back to MN and how long you can stay home?

Lots of prayers still coming your way!!

Lots of Love,
Amber McLaughlin, CA

Shelley said...

So happy to hear the Christmas news! That's wonderful! We continue to pray for you guys. Congratulations on all of Daylon's successess. What a beautiful family you have!