Thursday, March 22, 2012

Welcome Spring!

  Happy Spring, Everyone!

  I wanted to give you all an update on our little guy.


  Daylon is doing well skin wise. His face looks the best I've seen in months! With the exception of his feet, he's still unbandaged (side note- they're actually so bad today that he can't stand). Daylon immune system has been strong enough to introduce him to animals and our puppy loves to nip at him.  Honestly, it's driving me crazy because I'm so scared for him, but all in all he's done okay with it. He does have lots of cuts and a spot on the back of one of his cafes that's about 3 quarters (the coin, not the measurement)  in size, but Daylon LOVES the puppy. He's always calling for him and if I kick the puppy outside, Daylon will sit by the sliding door waiting. Animal Friends of the Valley gave him to us to help with Daylon's emotional/mentally healing and, like I said, he loves his puppy!
   Earlier this afternoon, Daylon climbed up on a step stool in the bathroom and slipped off. His chin hit the counter and I was prepared for the worst. The impact did take off the first few layers of skin and it bled a little, but nothing like I was expecting. We just ride that cell roller coaster and sometimes he's doing great and other times, it looks like he's fallen off the roof. We're still hopeful that in a few years time, this can be a cure for him altogether.

Man, I love this happy boy
  As far as Daylon's insides, between the aftermath of the chemo treatment and having the Herlitz form of EB we're still fighting a struggling battle. Daylon has been able to limit his throwing up to when he: coughs, cries or laughs too hard. This has been WONDERFUL news for us!!! One, I don't constantly reek of puke :) and two, he's finally gaining weight!! He's up to 28lbs and he's grown 1/4 of an inch for the first time since November 2010...Yes, you read that right, 2010. We learned early on with Daylon that things are all give and take. Soooooo, with that weight gain he grows and when he grows, his already shrinking kidneys, become even smaller for his body. We have this kidney transplant lurking in his future and the thought of it chills me to my very core. When you have an organ transplant, you are on a mild dose of CSA (an immune suppressant drug) your whole life. Since Daylon is already prone to illness and infection, this is not good.

He's taken a interest in tv ...well, more like he's taken an interest in Mickey and Curious George (George is his favorite at the moment)
As you can see he likes to be kissing distance from George and Mickey. By the end of an episode my back is usually aching from dragging him back a gazillion times. =)
  Something exciting for us to report is that Daylon has had a burst in talking. He's still not age appropriate but it's been such a huge improvement! We're really hopeful that his recent mental improvement will catch him up further with his peers!
He's become mister independent this last month and has insisted holding the breathing potion of the nebulizer for his breathing treatments. Such a big boy
  Everything else is about the same as the last time I gave an update: his heart is enlarged, blood clots in both arms, his brain is too small for his skull (but rewiring itself all the time, thank goodness!), he's  not had a blood transfusion since Oct. and he continues to have "junky" lungs. His breathing has fluctuated over the last several weeks with our CA wind and then rain and then sun and then wind and rain. It's part of the reason we're so excited for Spring over here! We can go OUTSIDE!! I'm so pasty white I could pass for a ghost. Haha! We have three months before Summer comes and starts to break down his skin and then it's back indoors.

One of his most loved (or loved on) toys. I picked this beast up at Costco last Spring for $30 and I just saw them there again this week, in case anyone is interested.

  All and all, Daylon is doing really well! We are still unsure of his future and how much time he'll have with us here on Earth, but we're taking it one day at a time and enjoying every moment we have with him.
   I want to thank you all for all of the love and support our family has received over the last 2 years. It's been amazing, and I'm grateful that there are so many of you who still continue to pray for Daylon and our family and check in on him. I'm sorry I'm such a horrible blogger, but I am grateful.

  For your entertainment, I give you dancing Daylon...

PS- I put an email button up on the blog for those of you who have requested it. Thanks for checking back so often to see if I've updated...again, Sorry!


Mom to Many said...

Wooohooo! What a sweet boy! Loved the video at the end!
You have a great attitude Jen!
He is such a lucky little boy to be part of your forever family.

Sara said...

and the dancing has made my day...
so sweet....

jeanine said...

He is so sweet!

Jan's Blog said...

A wonderful update. He is looking sooooo good. I realize that his issues are numerous and ever threatening, but it's great to know of the weight gained, that he's growing, and that he's doing great with talking. I believe in prayer and I see it working in his life, as well as your life. Thanks so very much for letting us know about Daylon. He is ever in my prayers!!

Annalien said...

He is such a beautiful little boy. I love updates, but I can understand 100% that you must have just about no spare time in your day. God bless!

Anonymous said...

Thank you so much for my Daylon fix! I grew to love your boy and your family during his BMT. When I check the blog (almost daily) it is a mixed blessing. No update, no huge issues, and things are going ok.

So excited that he has had so much forward progress. If the time comes for a kidney transplant, his prayer warriors will be right there beside you!

Thanks for sharing your wonderful boy, the video was precious.

Continuing to pray from Waterford, MI
Kim M

The Cohen's said...

I'm going to continue to pray for a miracle for Daylon, he has so much testimony at his young age, I think he has a lot of years left down here. ;) Prayers and happy thoughts to your family!! I'm so happy to seep pictures of him, he looks so great!

Anonymous said...

Jen, this is great that Daylon is doing and looking so good. What a great and lucky little boy. He is truly a miracle. You are such an eternal family and so awesome and wonderful. Sure miss all of you and the kiddos. Would love to see all of you real soon. You are all always in our thoughts and prayers and we love you.

Anonymous said...

Jen that last Comment was from Dwight & Myrna. Love and miss all of you.

Mom to Many said...

It did not even register the first time I looked at this. But, how long has Daylon been tolerating disposable diapers? That had to be a nice reduction of work for you! I loved cloth, but they were time consuming.

Kris said...

It is wonderful to see Daylin looking so healthy, busy and darling. He is still in my prayers. Miracles!!!

Anonymous said...

Sweet boy! I LOVE that picture of him sleeping on the bear--melt my heart. Praying each and every day for Daylon, your family and all EB kids and their families.

Mary Ann

Amber said...

Great update...lot's of positives in there. Enjoy Spring as much as you can.