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 I...at least it's just us)
- 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)....
|This free digital collage created with Smilebox|
Thank you for all of your prayers and kindness!