Sunday, August 29, 2010

Day +65: Freedom!

You will never guess! Four great things happened today. I can't decide which order to tell you them in, so I'll do it chronologically.
 1. So, you remember how I said it's been absolutely nuts with Daylon being in pain and writhing all day the past several days? Well, he slept for 2 consecutive hours last night without waking once! Then this morning he was right back at it again but was able to be content for several minutes at a time. By this afternoon, he was hardly complaining at all. I have no clue what was wrong with him, but I'm glad it's over!! I even got him to laugh today! Well, it's more a chuckle, but you know what I mean. He hasn't laughed in a week. All he's managed is a quick smirk, lately. Other than that he's been super serious. So glad to see a peak of my happy Daylon!

Daylon watching his new duck, from the Pop's (Elle's family), dance on his diaper.
 2. Today when the BMT attending came through we talked about maybe giving Daylon a pass to the RMH as soon as next week. I told her how Daylon has always been a kid who knew what he wants and I think he'd do better if he was able to be with his siblings a little bit each day and play. She agreed and said that the new goal for Daylon was to get him a few hour pass back to the house (after dialysis and therapy) so he could start to perk up!! Woo-hoo! Have I ever told you what a huge fan of progress I am? :)
 3. This one wins for highlight of the day!! I will let the pictures speak for themselves.
Man, I love this kid!

the mask is a BIT too big
So long 5D!
That's right folks! He's outside! First time in 67 days!

the hospital he left behind! :)

Daddy and the kids came right from the swimming to visit with Daylon. I love how concerned the twins look in this picture.

This one of Caleb, just because he looks so happy! :)
4. Our hour of free time was up, at perfect timing; Daylon was just starting to become uncomfortable and be in obvious pain (or so I think). Well, I got him onto bed and got his lines situated while we waited for Kim (his nurse) to hook him back up to his IVs. I was thirsty so I went over to the bedside table and took a sip of my drink. Daylon went from moaning to full on crying and totally eyed my drink as I put it back on the table. I stood there totally shocked that he was obviously thirsty and the thought had never occurred to me! I went over to the drawer and pulled out some sterile water and a syringe and let him drink 10cc (Shhhh! Don't tell! He's not having dialysis tomorrow and the doctor would flip if he knew!). He reminded me of a little bird, eagerly eating his food. He was jerking all around trying to reach his mouth up to the syringe (it would hurt his mouth if I actually went in it) and then gobbled it up. I don't know if you can "gobble" water, but it fits the action, so I'm using it! :) When I put the water back on the counter he cried until it was hidden. Once tonight, I went in search of a Kelly clamp and when I was moving stuff around, I accidentally put it back into his line of sight and he spotted it within a few moments and started crying. Realizing that I'm a dingbat for not thinking that my son was interested in drinking, is not one of the great moments of the day. :) Do you realize what this means? He recognized water and remembered he's a fan of drinking (he didn't eat a whole lot of solids. This kids mouth blistered on an over-ripe banana), he was mentally 'there' enough to let me know he still wanted to drink and yell about it until it was hidden, and he was smart enough to remember where it was hidden and then recognized it hours later!! I'm not saying that I know he is going to be the exact same kid mentally as he was pre-transplant, I'm just saying, something is there. He's thinking. I changed my mind...this is the highlight of the day. I'm so happy.
  Modern technology is wonderful and it's amazing what man can do, but I love that in the end of the day, it still is, and forever will be, up to God. Thank you for your prayers, thoughts, and kindness. We love you. Sweet dreams.


Anonymous said...

This post brought happy tears to my eyes!!! He is such a beautiful little boy! He has truly stole my heart! (Next to my son) These pictures are amazing! I seriously don't know what else to say but I am soooooo HAPPY FOR YOU GUYS!!! :)

Carla and Matilde said...

What an amazing day!! So happy for you. It was amazing to see Daylon outside and your family united.

Fantastic to see how he is exercising is brain. Wonderfull news, indeed!

Carla, from Portugal

Kristy said...

I've not been able to be on the computer much in a couple of weeks, and this was one of the fist updates I saw this morning...WONDERFUL!!! So happy for you all! Keep it up Daylon, you are such an amazing (and crazy adorable!) lil' fella! :)

Linda said...

I am so happy for you guys. The pictures of Daylon outside with his brother and sisters brought a tear to my eyes. You must be so thrilled that Daylon is doing so well.
Will continue the prayers, of course, until Daylon is back home.
Love and hugs. Leah's Nana

Mom to Many said...

Oh, my goodness! I am so happy that Daylon is responding so well! It has to be hard to see him desire to drink like that.
After my brother's burn he used to PLEAD for something to drink. It was so hard. He whispered to me like we were kids again asking for a drink. He wanted punch of all things.
One day (it was just too soon) he talked my sis in law into a sip and he choked terribly.

In my experience they are different for a while after having been on so much versed for so long. In addition I am so hopeful that his brain can map around the damage and he can continue to improve.
Being quiet for so long through such a serious illness is a tough thing.

I am so thankful for what man has been blessed to do with medical science. I would not still have my brother if not for the blessing of it.

Well, I am off to print handouts for my lesson today. :o)
Keep smiling. You are doing so well!

Amy F. P. said...

What great news to share! I can't stop smiling. I love to hear all these great success stories and I love that he wanted the water. There must be so much encouragement in that. Your family continues to be in our prayers.

The McLaughlins said...

Such great news today. I read this with my husband today and we were both just so excited for you guys. So awesome. I'm so grateful for Gods blessings and the miracles he does everyday. I think its a good sign that he recognized your drink and knew he wanted something to drink. Its sad that he is so thirsty but on a positive note I think its a step in the right direction in regards to his brain healing. I'm so excited he got to get out of the hospital for a while and enjoy some fresh air and play with his brothers and sisters. That's great and I truly believe that will help in his recovery. God Bless!

Take Care,
Amber McLaughlin CA

Amber said...

The first time outside in those many, many days is HUGE! What sweet expressions your kids all had as they milled around him. I am a big fan of progress, too, and this post was full of it :>

Chris said...

Great news - hooray for memory and water.
You are an amazing mom and Daylon is an amazing kid. So happy for so much good news. Thanks for sharing the pictures with the other kids.

ANewKindOfPerfect said...

What an amazing day! The pictures of Daylon outside with his siblings are just awesome. What a great trip to the fresh air! I think it's a huge good sign that he is not only thirsty but recognized the drink and knew he wanted it. He is incredible!

Anonymous said...

This whole post literally just made my day! I check your blog several times a day and Daylon is on my mind ALL day long! I am so happy for these amazing strides he is making! There are lots of prayers going up from Daylon from Castle Rock, CO! Thanks for sharing his story!

Bella's Blessings said...

Those pictures and this post are so wonderful to behold! God is good! I believe that I did not see an IV pole in any of those pictures. Congratulations for being "tether-free!" AWESOME PROGRESS, DAYLON!!!

Denise said...

What a HUGE day. I am so thrilled for Daylon (for all of you) is just amazing. You made my weekend. :)

Denise WI

jardinera linda said...

This is the best post ever! So happy for all of you. Loved the picture with all the kids reunited.
Love and hugs

Gilda said...

My heart is full of joy for you. I am so happy to hear all the great progress in Daylon.


Oh my goodness that was a WHOLE post with nothing but ABSOLUTELY WONDERFUL- I MEAN WONDERFUL NEWS!!! From the pain subsiding all a sudden - to the new pass to the outside world and to see his siblings - and the fact he remembers what a drink was and knew he wanted it..then remembered again several hours later!! I AM SMILING FROM EAR TO EAR!!!!!!!!! YIPPEE!! Gosh this is all just amazing Jenn!! I dont even know what to say, but Daylon is such a miracle and he has it in good with our Heavenly Father!!
Go Daylon your doing AWESOME!
Love the pictures with all the kids.... they all looked so happy to be together!