Sunday, August 14, 2011

All about Daylon

   It's official. I'm a horrible blogger.
  First off, thank you to all of you who have spent time reading Tripp's blog and posting comments for his wonderful family to lift them in their scary time. If you haven't heard, he's doing much better now! :)

   Daylon is starting to do better these days...let me catch you up...

   After his birthday party, we had about 3 weeks of non stop puking and weight loss again. His BMT doctor at CHOC realized that our home health care company had messed up the formula order transferring it  from MN to CA after the g-tube was put in and he wasn't getting as many calories as originally prescribed. After about a week of Dr. Buchbinder and I riding them, the correct order was delivered. He still threw it up, but at least what little was digested was higher in calories. :) Eventually, things calmed down and he's back to his 45 mls for 16 hrs a day and actually keeping it down! Woo-hoo!
  He's had a foot infection that resulted in fevers and a sickly boy for a week or so. He also caught a cold that our older kids brought home and it turned to pneumonia...AGAIN. Man. I can't not wait for him to have his immune system back! For being as far out from transplant as he is, he should be a lot stronger. The whole malnutrition issue is to blame there. He is getting healthier. Slow and steady wins the race, right? The biggest and most exciting news of the last 6 weeks, is that as of last week, Daylon is crawling!!!!!! Holy Smokes, I can hardly believe it myself! He's not the worlds best crawler yet, but he is moving! Luckily, it's still slow enough that we can keep up with his IV pole. A month from now, this could be a whole other story! Ha, ha! Our new goal is to have him walking by Christmas. We'll just have to wait and see. Considering he wasn't supposed to be able to remember to breathe on his own, he's doing pretty well!
   As for his skin, he is kind of going through a bump this week, but it will get better I'm sure. His rubbing and itching are starting to take a toll on his face and chest, and the crawling not the best on his knees either, but they're holding up. His biggest boo-boo right now is on his left thigh. One of our older kids was being silly on the couch and Daylon happened to crawl near the couch, right as the older kid fell off. I don't know what hit his leg, but the skin tore in two spots taking off several layers of skin. His left thigh is notorious for being sensitive, but this is probably the worst it's been in the last 8 or so months. Anyway, he's back in cloth diapers for the time being and we dressed upper leg. He's such a trooper though. You should see how tough he is.
  Speaking of, do you know that he doesn't even cry anymore when he gets his twice monthly labs drawn? He just looks at the guy and says, "Ow. Ow." it's more like he's informing us than complaining. He's so stinkin' cute.
   A lot of people have been asking to know where he's at developmentally and what his prognosis's is. As far as prognosis, we don't know. I asked Dr. Tolar in May if he was still dying and he said, "Well, all I can say is, if he dies this month, I would be surprised." He is still considered to be terminal and most doctors just say that he's a complicated case. The transplant can quit working at anytime, his kidneys and now his liver have gotten a bit worse over the last couple of months and an infection is still his biggest enemy (not that he has a lot of sores anymore, but his ability to fight bacteria is so much worse than before...I didn't think that was possible). The truth is, no one knows. I do know that I believe in prayers. I believe in miracles and I believe in Daylon. To be completely honest, part of the reason for my absence in blogging was that I was having a hard time finding the light in things and that can be just ugly. When his kidney and liver started acting up again and the need for a kidney transplant was brought up again (this time by MN), I kind of just lost it (the optimism, I mean). It's hard to explain but his skin clearing up and his personalty really showing like never before made the idea of losing him so much harder.  I was grateful, but it's not like I could say. "Well, if he passed, at least wouldn't be in pain anymore" because he's not in crazy pain now. The neurologist told us that it's hard to get kids like him therapy, but he deserves all the therapy we can get him while he's still with us. That was another low. Thankfully, I have a great husband who has helped me stay sane :) and reminded me that nothing is over and Daylon still has a lot of fight in him. We take it one day at a time and today, he's doing great.
Second Birthday- Daylon at a glance

- he can sit independently
- he can sit from a laying position
- he can maintain about a 10 word vocabulary...right now it's
        mom (sadly, this is the name for both Brian and least it's just us)
        mo (more)
- he will hold a remote or cell phone to his ear and say, "hi"
- he is strong enough to hold his weight on his hands and knees and CRAWL for about 1 minute
- he can wave (when he feels like it)
- he can give high-fives
- he can laugh (that's a big one for us!)
- he yells when he's upset
- he can fold his arms for the prayer and sign , "Amen"
- he loves car rides and singing
- he holds his g-tube and opens the y port when he sees his medicine bag come out
- he loves Mickey Mouse Clubhouse and Pixar's Cars characters
- favorite toys- Zebra, Leap Frog Pal, balls, cars, books and light up toolbox set
- he will kiss and hug when asked
- loves to melt M&Ms in his mouth
- his favorite time of the day is scripture study. He loves to make the kids laugh (even though he's not supposed to) by being loud and silly...also, that's when the M&Ms come out.
- he loves to be outside (probably because he hardly ever is)

and now, just because I think how much he's changed is amusing, Daylon through pictures (left to right starting with his 1st b-day)....

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Thank you for all of your prayers and kindness!


Lisa said...

So happy to hear from you!!! I am so proud of him: talking,'s just amazing.

I cannot imagine the frustration and pain you feel when Daylon gets sick, or injures his skin, or someone brings up needing a kidney transplant. It's a lot of take given what Daylon and your family have already gone through. I'm so glad you have continued to blog despite things being difficult. It is clear to me that Daylon does have better quality of life after BMT, but that EB is still an uncurable, life-long illness. I am thankful for the progress that he has made but hopeful for continued improvement for him and all the EB kids and their families.

Bella's Blessings said...

Right there with you, Jennifer. After you have "come this far" with Daylon overcoming as many insurmountable odds as he has, I can't pretend to imagine the thought of him not simply being INVINCIBLE!

I still marvel over what many may or may not realize with Daylon being a JEB-H baby is that his organs are obviously as transformed as his skin is! They ARE still functioning, which IS a miracle in and of itself.

We love you guys, and walk this journey with you every step of the way! Let us know next time you're in Orange!

The Ringgolds

Amy said...

After having followed Daylon's journey from the beginning of transplant, all I can say is that Daylon has a plan all his own. He's beat the odds every time. Look where he was a year ago! I will never forget the tears I shed reading about his stroke and what may or may not happen. He's going to do it all in his own time and on his own schedule. Doctors don't know everything.

I say prayers for this little guy everyday and get very excited when I see all the steps he's making. He has become part of my family and I can't wait to see what the future holds for him.

Hugs to you with love from MN.

Anonymous said...

So glad for a Daylon update - I grin each time I check your blog and there is not an update! I well remember those days in MN when you had plenty of time to update and urgent prayer requests!!! So glad your days are now filled with Daylon progressing in his miraculous development, giggles and grins!

Yet, we know he is still one sick little boy and in need of our prayers! Will specifically pray for kidneys and liver to heal and his nutritional needs.

Keep on keeping on and give that precious boy of yours a hug from me!

Praying in Waterford, MI
Kim M

Mom to Many said...
This comment has been removed by the author.
Mom to Many said...

Okay, I admit I miss your updates when you have a dry stretch. But, your blog is real. It is not about blogger statistics or hit counts. It is about your real family. It's about you and what you are going through with a very real little boy.
Nothing about this has been easy for you.

I am glad for my association with you.


Anonymous said...

This may or may not sound kinda weird but Saturday night as I was getting off of Main St from the 91 freeway I looked to my right and you and brian were in the van next to me.. and Daylong MIGHT have been the kid in the backseat! I told my husband and he said "say something to them!" and I thought "what could I even say!" lol. I looked again and Brian yawned a BIG yawn so I thought "nah! I'm not going to bother them! But it was nice to see you guys! I said an extra special prayer for you all that night. Daylon is such a fighter and an amazing little boy! :) Keep up the wonderful work you are all doing!

Taylor said...

You should refer Daylon to Make A Wish to get a wish granted. You can submit your own child. Just go on their website and click "refer a child". Easy peasy! You will love Make A Wish!

Anonymous said...

Thank you for sharing about Daylon. I am happy to continue praying for him and all of you, his family. It's good to see him and know he is till with you. See him being active. My God's work continue in his life. SG - KS

Anonymous said...

Thank you for the update. I check for an update almost every day. You are such an awesome family. I pray for you daily.

Becky (Texas)

Annalien said...

Thank you for the update. I check in every day, but I fully understand that it must be incredibly difficult to find time to write here. (I only have 3, fully healthy kids and I don't have a minute to spare in my day, so I actually stand in awe of what you get done each day!)

I am so sorry to hear that Daylon is still struggling with health problems and will continue to pray for him. It is exiting that he is crawling!

Jamie said...

YAY! and update about Daylon made my day :)
Prayers for his kidneys and liver and thigh, and of course for you and your family. Take care!


I am so happy to see your post!! I have been wondering how he has been doing. Thanks for his update! I know Daylon still has his ups and downs and health issues. But he is in the best of hands. You and Brian take such good care of him, making sure he gets everything he possibly could need. You are seriously super mom and super dad :) I just get teary eyed looking at his pics, he has come such a long way and I just love your little boy!! Love all the words he can say... Yay for turning 2 Daylon!!

Mom to Many said...

Thinking about you tonight.
Just stopped and checked in on the new baby.

Anonymous said...

Thinking of all of you, talked to your Mom the other night and she said Daylon is doing pretty good. She said he is such a little clown, thats great to hear that he can laugh and enjoy some good times as he has had so many tough times. She said he can say and understands 12 words. That is great. He is such a little fighter and Superman. Sure miss all of the kiddos. Hope all are doing well. Hope to see all of you real soon. Give all the kids a big hug for us and let them know we love them. What an awesome and great family you have. Love all of you. Our thoughts and prayers are always with you.

All Our Love
Myrna & Dwight

Grammy Staffy said...

Daylon is amazing.... and so are you! He has beaten the odds so many times... He will do it again. Our prayers are with you. Hugs, Lura