Sunday, June 12, 2011

A new man

I can't even hardly believe how great Daylon's days have been going. I don't know if it's getting enough to eat, the right antibiotics fighting off the pesky bugs that have been lurking in his system, or what, but Daylon's personality pre-transplant has been back and he's happier than ever! I just love it!!! He's smiling ALL THE TIME!! He's doing these deep little belly laughs that I haven't heard in about a year, he's started talking a little more, he's playing with toys, heck! He's even letting us put him on the ground to play with having a total meltdown. I can pee in peace! Aaaaaaaaaaa (That's the choir singing)! Okay, and get this. He has actually started hugging!! Real, honest to goodness hugging. Before if you asked for a hug he would just rest his head on your shoulder, now without even being asked, he'll open his arms up wide and give you just the cheesiest grin, hug super tight and rest his little head against your shoulder. It melts my heart. =)
  I will say though, with Daylon being so much more alert, giving him his injections of Epigen have become much more difficult. He used to just fuss for a second and then go back to his listless self, but now he fights and cries. He just looks at me with his little quivering lip with the facial expression of, "How could you". Oh, how I hate poking him with needles. The lack of fat on his legs, doesn't help either.
  Back to the good news...
  The blood work has come back from his One Year Check up and (drum roll please!) Daylon T cells are 100% donor and his C3 cells are 99% donor!! Yay!! At his 6 months labs, he was only 70-something % donor and we were becoming concerned that he was losing his engraftement, so this is GREAT news!! Still no word on his skin biopsies, but we're anxiously awaiting the email!
  At this weeks BMT appointment, Dr. Buchbinder said that he feels Daylon's check ups can be moved to every other week! I'm so excited to get two of my Wednesdays a month back! It's such a pain to load everyone up, travel over an hour (sometimes several in traffic, especially coming home), and worry about the five of them touching stuff in that germy clinic. They have babies with RSV, BMT kids, pulmonary kids, everyone, all lumped together in the same waiting room. One word: GERMS. So glad to get a break! Oh, I almost forgot! The reason Dr. Buchbinder feels he doesn't need to be monitored so closely by BMT?  He's gained almost a whole kg (2.2lbs) since surgery! Well, that's about it for the news on this end. Hope you all are doing well. Thank you for your love, support and so many prayers! We couldn't ask for more. :)

in the hospital





yesterday

16 comments:

jeanine said...

Jennifer! I"m so glad to hear the happy news! I'm so glad that Daylon is feeling better!

Amy F. P. said...

What wonderful news! Thanks so much for sharing it with us. We'll continue to pray for him.

Mom to Many said...

I was so hopeful that his little personality would return! Our guy's did when he finally got enough to eat.
Eventually his body felt better put together as his muscle tone returned too. I am hopeful that will come for Daylon too.
Progress! :o)

Yipee!

Bella's Blessings said...

YAY!
Great news! Fatten that boy UP! The whole hug thing and the belly laugh... my heart just beamed with joy reading about that. Peeing in peace... that made ME laugh! So happy for the good news all around!

Anonymous said...

Look at all that skin! Without Bandages!!! YEAH! Glad all is going better.

Aviles Family said...

I can't even tell you how happy this post made me! I love that he is giving hugs! (and I'm so happy for you that you can pee in peace! I still struggle with that one!) Great great news! So glad to hear it and so happy for you!

Annalien said...

This has made my day! I am so glad he is feeling better. Go Daylon!

Kim M said...

Yipee!!! Praising God for such a good report!!! YOU ROCK DAYLON!!!! Hey, Jennifer, I think you may just have to change the header, he's not looking like much of a baby anymore!!

So good to hear he is doing so much better! The body is an amazing thing, now that he can handle nourishment he can start to heal/grow/development more!

I'll be anxiously awaiting the results of his skin biopsies!

Praying from Waterford, MI
Kim M

Meighan said...

It's amazing what good nutrition can do for the body! Keep feeding that boy and he will continue to heal both inside and out. Praise God for that G tube!

Anonymous said...

So happy for all of you! Daylon really seems very slim, but hope he will reach a normal weight soon. It is so sweet that he is smiling and hugging you when he feels good!

Elena

Anonymous said...

WOW!! I love this update and photos. Praying for Daylon and your family. So glad things ar looking up!!! God bless you.

Jan's Blog said...

So much good news!!! So why am I crying? Just happy I guess!!!

Anonymous said...

That is WONDERFUL news! Praying for Daylon and his family!

Becky from Texas

Elle's Family said...

Oh Jen, I am so happy to hear that he is doing so well. Keep him gaining weight...little sweetie!

Anonymous said...

This is such great news that things are going much better for Daylon and tht he is gaining weight. He is such a miracle and so cute. Just melts your heart. The photos are great. It is so great he is hugging everyone, what a precious little boy. He knows that he is loved so much by all. He truly is a Child of God. Keep him gaining that weight and Take Care. You are all in our thoughts and prayers and We Love You. Give the kiddos a big hug from us, they are so precious to us. Hope to see all of you real soon. Keep Going you Little Superman.

All Our Love;
Myrna & Dwight CA

Anonymous said...

I had not checked this in a few weeks and kept thinking I needed to (phone was not working). I am so happy I read it, and today, not having a good day (worrying about really stupid stuff....this is what your son give us...grounding / perspective). I asked God for a sign and this is it. He is listening.