Monday, January 9, 2012

FINALLY- an update!

not the best photo of Keira, but I love how big Daylon thinks he is in the one!
 
    It's been almost 2 months since my last post! I can't believe I've let time get away from me like this! A huge thanks to all of you who have phoned, email or Facebooked me about Daylon's progress. Your support is incredible! Since November, we've been busy getting ready for and enjoying the holidays. Between school and  church Christmas activities and our family traditions we've stayed very busy. Today is actually, the big kids first day back from break!

Christmas morning wearing the hat Caleb bought him for a gift
  Daylon LOVED the Christmas season. He really doesn't have a clue about Santa, but he enjoys saying "Ho!Ho!Ho!" every time he sees a bearded man and now seems to understand that Jesus was once a baby. He loved the lights, tearing wrapping paper, Christmas songs and his new joy: Hershey kisses. He surprised us all with his willingness to stay away from the village, wrapped presents and lower ornaments on the tree once we told him that they were off limits. Possibly, more than Christmas, he enjoyed New Year's Eve. We always celebrate Eastern Standard Time New Years with the kids. We watch the ball drop, have sparkling apple cider and the bang on pots and pans to ring in the New Year. He was a little madman with his spoon and pot. It made me so happy to see him light up like that! I couldn't help but think of how far he's come over the last year. I am so grateful for the many, MANY blessings we've seen in our lives.

New Years Eve at Gma + Gpa De La Cerda's. I was smart enough this year to not pass out spoons until 30 secs were left! Haha!

     At the moment, Daylon's skin is going through a bit of a rough patch, but I'm sure it will begin to heal soon. His foot, back, back of his neck and diaper area have opened up and been a bit of a problem for him. We've just come to expect these changes in his skin and pray that they will continue to become further and further apart. The problems with his foot kept him from standing for a couple weeks, but just over this weekend, I've seen him pull himself up once or twice. I just wish his foot would heal so he could start walking. He gets so frustrated that he can't keep up with other kids. It tugs at my heart strings watching him try to make friends.

Enjoying the Claim Jumpers "Mother Load Chocolate Cake" on our date night with the boys. If you couldn't tell from his face, he LOVED it!
     One of the biggest and most exciting piece of news, is that we were given the "OK" for Daylon to attend church and the movies. That means two things: one, he is now healthy enough to completely be out in public and two, we can start attending church as a family for the first time since his BIRTH!!!! Going to church is something the other four kids were brought up doing every Sunday and now Daylon can participate too. We've been waiting for this for such a long time!


Silly boys

WHAT.A.DOLL.
    As far as development, Daylon is doing great. He says about 50 words now and understands most of what's being said to him. He is such a little miracle. He's learn to climb the stairs at lightning speed and pull himself up onto chairs using his arms. You know that saying, "When life gives you lemons, you make lemonade"? That Daylon through and through. He has so many obstacles and he either hurdles them or finds a way around. He's taught himself how to use his knee as a foot and has switched to left handed since his right side doesn't work quite as well.

Happy

inquisitive



Mad (he wanted a "cup")

Sad ("no cup until you say please and ask nicely")

...and so he did. :)
     More than anything, I notice that Daylon is happy. He's spunky and sometimes even naughty (he's even been in time-out!) and I know it sounds crazy, but it makes me so happy! His smile just melts hearts. He's such a silly, little monkey. He has had more trials than I have ever known another to have, but he's finally able to enjoy life. Everyday we witness God's hand in our life and it's such a blessing. We are so thankful for all of the progress he's made and all the obstacles he's overcome.  We're thankful for Dr. Tolar and Dr. Wagner and their research and the desire that they have to help save these beautiful butterfly children.
   We're thankful to all of you for stopping by and checking in on Daylon. Although, I'm not always the most faithful blogger, I am always so grateful for the army of people around the world who love our son and our family and support us in this journey. We love you.















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21 comments:

Meredith said...

Daylon looks so happy - so many smiles!! And he'Thanks so much for updating. I am a long-time follower and it warms my heart to see his happy face.

Jan's Blog said...

Time out...I love it. How wonderful for Daylon to be experiencing 'normal' kid stuff, and how exciting that the family will be able to be at Church together. He truly is a miracle little boy. Thanks so much for the update and darling pictures.

Aviles Family said...

I loved meeting Daylon! I loved seeing you and the other kiddos. Daylon is the sweetest kid I've ever met! He has such a beautiful spirit. Love you girl! So excited you get to go to church now! That is awesome! Will he get to go to nursery or is that a little too much at once? :)

StaciaJ said...

I love it! You all are an inspiration, especially as I deal with my own challenges. Prayer works and trials really can be blessings in disguise.

Emily said...

I so glad to see him thriving!! He's huge and mobile and talking!!! Wonderful, wonderful, wonderful =)

Mom to Many said...

Yay! I am so happy to see you are doing so well! Time out even? I love it!
I hope his little foot will heal so that he can gain some speed soon.

Annalien said...

I am so excited about this update! Daylon looks so big and adorable as always! I have been following his journey since the beginning of transplant and it is great to hear how well he is doing.(How is his eating, by the way.) Praying that that foot heals soon and that he can walk and run with the others. God bless.

sharon kaye said...

I'm so glad Daylon is making such wonderful progress. What a great thing that you can go to church together now! Yeah!!!

Thandi said...

Thank you for the update.Asides from the skin challenges,I'm happy that he seems to be thriving.I hope his foot does heal soon too.

Kim M said...

Oh, I was so excited to see an update! I think I peek in almost daily to see if there is something new. My thought has been, "I think they are just enjoying living life!" Pretty sure if he was having a problem, you would blog so we knew how to pray specifically for your little hero!!!!

Continuing to pray for your sweet boy,
Kim M, Waterford, MI

Amy F. P. said...

So nice to hear how Daylon's doing. Thanks for the update. How wonderful that he is continuing to progress and is a happy little boy. And how nice that you can all go to church together now. That must be a nice change.

Carol Hansen said...

Daylon is amazing, a little miracle child, even as he reflects the love, faith, prayers and diligence of his devoted parents.

Lauren in GA said...

We really do love your little monkey. How great that he had such a lovely Christmas season. ☺

Jamie said...

Thank you so much for the update, God bless!

Anonymous said...

So glad to see your post. Sure glad Daylon is doing well. He is really a miracle and an inspiration to all. Happy to hear you all had a great Christmas and family time. It is wonderful that you can all go to church as a family again, what a blessing. he is such a little monkey and he knows what and when he wants it. Beautiful kids. We love and miss those kiddos. Hope to see all of you real soon. You are in our thoughts and prayers and we love you. Great awesome parents you are.

All Our Love;
Myrna & Dwight

Linda said...

Thank you for the update. I was wondering how the little monkey was doing. So happy for you and your family. You have gone through so much and now seem so happy and "normal". Daylon is a miracle and I am thrilled that he is doing so well. Love and Peace, Leah(a JEB angel) and Tabby's Nana

Kristin said...

What a postive update!! :) Love hearing how well he is doing!!! He looks so happy (and so cute!!):)

Bella's Blessings said...

What an uplifting post! I especially love the part about church! Life is good. God is good. I love that you are writing about typical kid stuff, and not medical journal stuff, ya know? That's a great sign of how far Daylon has come, indeed! P.S. You were AWESOME yesterday speaking at the luncheon! Did you hear the GASP when you showed the "After" picture at the end of your presentation? It was amazing! Great job, and thanks for all the hard work; the decorations looked AMAZING.

Michelle said...

So sad to learn of Tripp's passing today. No more pain. No more bandages. Play us a song,little drummer boy. Tears for your mama.

John Brown said...

Glad to see an update! All the Corona Firefighters are amazed at how well he is doing and I amazed at how big he looks in the pictures. As always your in our thought and prayers. John Brown

Warrior Mommy said...

So so happy! I have been wondering about Daylon and was just telling my husband that it had been a while. I am so glad he is doing well!