Friday, October 8, 2010

Day +106

  I wanted to start out this post, by mentioning Bella and Elle. Both girls are having a rough time in the PICU and can use all the extra support you can give them. If you have an extra couple minutes please visit their blogs and drop them a note of encouragement. Click on their names above or off to the right of the page under "Daylon's EB Friends". Thank you!
Daylon has had a pretty good couple of days, especially yesterday. Last night I had so much fun with him. He was laughing and smiling and yelling at anyone who would walk by and ignore him. Seeing him act so much like his old self was such a relief for my heart. Okay, so cute story, I've been working on teaching my older four kids solfege and pitch (I know, we're fun to have as neighbors). I will play a note and then sing the note and then they go. They're getting pretty good actually and they all love using their voices and well, being loud. Well, one night Brian was downstairs grabbing our dinner and I was sitting at the table with the five kids. They were getting restless, so I decided to play our little game. I hit the side of my glass cup with my spoon and sang the note and the four kids followed suite. I did it a second time and complimented the each kid as they all held the note. Out of no where and completely off pitch, Daylon starts singing too! We all stopped and had a good laugh! when we tried again, Daylon joined in and wavered around until he found where we were at (vocally). He was so proud of himself and the funny thing is, the other four were even prouder. They kept saying, "He did it! He did it!" Ah, I love that kid!

Daylon being cute with Mommy needing make up...and sleep by the looks of those bags!
   Physical therapy has really been wanting us to push his sitting, but it seemed to make him so unhappy. Now, I know that physical therapy is rough stuff and no one wants to do it, but he would yell out like he was in pain and when he would tolerate it without crying, he was SO SERIOUS. I've been emailing back and forth with Dr. Tolar and he thinks that the extra fluid in his head is causing him a sort of headache when he sits up. He said that he thinks it's most important that we listen to Daylon and his body and only push him, as much as he seems comfortable. Having a bit of a clue as to Daylon's unhappiness is very comforting. I was also happy to hear from CrsLeigh that their baby is acting the same way, without BMT! Sometimes I get so caught up with his various illnesses that I forget he's a 15th month old kid (TODAY!) that will have typical 15 month old stages! :) Thank you all for your comments!

What? I don't have your phone! :)
   Yesterday's blood work showed that Daylon's CSA level is still low, so they upped the dose again. Boo! No, I'm kidding. :) They want his level higher since they don't know if he has GVHD. It's just a bummer, because I would really like to give his kidneys a fighting chance and that's not happening until they lower the dose.  He's still peeing though, so I'll take it!

That's the top of a blister peeling off his tongue

   Tummy issues are still, well, an issue. He's on 25ml an hour as we speak (less than an ounce an hour), so his nutritional goals are behind further today. He's so gaggy and pukey the last couple weeks that he can't keep much down. The BMT docs want him to eat 1/4 a container of baby food a day or a few bites of something to help his tummy practice. Ha. ha. ha. Yeah, it's just become an invitation to throw up. He LOVED this chicken and wild rice soup we had for dinner the other night, but I had to cut him off after 4 slurps. Within 5 minutes, Brian and I were out of our chairs, dashing around for towels and wipes.  Speaking of getting sick, Caleb woke up this morning with a HORRIBLE flu bug. He's been sick at least 10 times since 7 am this morning and it's noon. Daylon can not afford to get the flu (which is why we all had our flu shots. Glad they're working. :) ), so we have to be super careful right now that Caleb's germ don't come near Daylon. Things haven't been on Daylon's side all week, since Sadie's croupe started acting up Sunday night (she's fine now).

Caleb this morning napping on the floor and the air fliter behind him, getting rid of the germs
   So we have big news! On Tuesday, we gave Daylon's left leg a test run without bandages. I cut the legs off of some super thick sweat pants (they were 2T and being sent back home anyway) for Daylon to use during dialysis to protect his legs from the blood pressure cuffs. After two days and NO BLISTERS!! we decided to have his right leg participate in the fun!
      Presenting, the new, improved, Daylon!

Brian wearing the cuffs for Daylon to use during dialysis
    His feet are improving too, but still a couple months from being healed. The tops of his feet and toes are completely healed! Woo-hoo! The pseudomonas infection on his right foot is pretty persistent and well, ugly. I would guess he has skin on maybe 15-20% of his right foot and close to 50% on his left!! Several of his toes have fused to the pad of his foot, but we can always fix that later on with surgery. Just this week, we did notice some more fusing. This time it's where his groin and his thigh meet on his left side. When he was a couple days old he had one of the Hepatitis shots in the hospital and they put a little circle band aide on his thigh. The next day, the nurse pulled the band-aide off...and his skin. That's when the doctors there finally believed me that something was wrong with him and his Pediatrician, Dr. Blumberg was called in (he was recovering from surgery). Anyway, that sore took months and months to heal and left a lot of granulation tissue. As Daylon grew, the scarring moved from mid thigh to the bend in his upper thigh. Twice, while he was in the PICU and had a 5C nurses on the late night shift, the nurses mistook the granulation tissue for blisters and attempted to lance them. The area ended up sore, bloody and completely open again. It's almost entirely healed now, but the area has fused causing a restriction in motion for his left leg. Supposedly, rarely do JEB kids have issues with fusing, but unfortunately Daylon is one of those kids. We are blessed though that he has had very few part of his body permanently compromised by the disease.
  I will leave you with some pictures...(as always!)...

It was Sadie's night to stay up last night and as usual, our little tomboy wanted to play "Monster Games"

knocking down Daddy's fort
Then it was the Silver Monsters

The Gold Monsters

my guy can't even keep his scary eyes  on...I think we're gonna lose

My good friend, Michelle made the kids a care package with a gift to open everyday in October until Halloween. Yesterday, they had just opened their daily gift (fangs) when we got a delivery...
 The cute little ghost in the 7th pocket is moved everyday. The kids are so excited for Halloween now and their day to move the ghost and pick the gift! Isn't Michelle creative? I think it's so sweet!

Caleb looks a bit like that Taylor something-or-other who played the warewolf in Twilight in this one
Thank you for checking on Daylon! Enjoy your family. In the words of my grandfather, "Have a happy day!"


ANewKindOfPerfect said...

I am glad that the doctor is agreeing with you about therapy. If it sounds like it's really painful or too irritating for Daylon to do the PT, then it's good to wait.

I love all the pictures in this post. The ones with the crazy eyes are funny! And I love the little whorl in the middle of Daylon's eyebrows. So cute!

The McLaughlins said...

I love hearing about the good stuff Daylon. Keep it comin lil man!

Lots of love and prayers continuing for Daylon, Bella, AND Elle.

Stay strong and take care,
Amber McLaughlin,CA

Anonymous said...

Thanks for the good to see him smiling! Will continue to pray for those kidneys, and for continued progress with the physical therapy. Hope you and your family have a great weekend!

Donna Tadlock

sharon kaye said...

I love the story about Daylon singing. That is so great!! I'm glad you have a doctor who listens to you and doesn't want to push Daylon faster than he can go--and that he has a good theory about why he doesn't want to sit up. His skin looks wonderful!!!! We pray every day for his kidneys.

Anonymous said...

Praying for Daylon's kidneys, and for continued signs of improvement, both physically and mentally. LOVE that he was singing, that gave me goosebumps when I read it! His skin is looking better and better, that is so wonderful to see.
Praying for Daylon from Bowie, Maryland, Judy T.(Leah's Grandma)

Carla Spradlin said...

Hi, my name is Carla, and I live in Portsmouth, Ohio. Almost, the very southern part of the state.
I am also a nurse, for 34 years. I have followed your blog, said prayers every night. Daylon looks so good, compared to the first picture I saw.
Hi little mouth just makes me hurt to see it that way. Have you talked to any of the docs about maybe having a burn doc check his mouth. There should be something that you could put on his mouth that would keep it moist, and help prevent some blisters. There has been different creams we've used over the years. I haven't worked for a couple of years, and can't remember anything by name.
Hang in there, I am sure that I don't know how you all manage everything the way you do. There will be a special place in Heaven for you all, and for Daylons parents, and all those other parents out there caring for their very special babies sent to them by God.
Carla Spradliln, Portsmouth, Ohio

Anonymous said...

That's so good that his skin is getting better! I liked the photos of his hands and legs very much. I hope the feet heal faster than expected!

It is so charming that he has tried singing with his siblings. Isn't it a proof that his brain is working very well?

So I keep praying for his kidneys to get better and to be able to eat better and grrrrrow!


goodie girl said...

It is good to read that Mr Daylon is getting better. Sorry to read that your family has the usual childhood viruses that they are sharing with each other. Hopefully they will not be sharing with Mr Daylon anytime soon. Will continue to pray for his kidneys.

Mom to Many said...

Oh, what a cutie singing with you!

A Mommy, A Daddy, A Baby: A Blog said...

It's so good to see these pictures. Daylon looks so good! We hope his mouth heals up soon. We're always eager to see his progression. By the way, all of your children are so adorable and you're quite the photographer!

Linda said...

Hi Jenn: Thanks for the update and as usual the wonderful pictures of your beautiful family. I am thrilled that Daylon is doing so well. His skin looks great.
You are so blessed. Have you noticed how both of Leah's grandmothers check in on your son all the time. We are just so thrilled that the first JEB patient is doing so well. We are so happy for your family. Judy and I miss our little Leah so much but we know that she is now an EB angel and watching over all the other EB children out there. Love you guys. Love Leah's Nana (Meg's Mom)

Elle's Family said...
This comment has been removed by the author.
Elle's Family said...

Elle's Family said...
Thanks for referring your viewers to Elle. Delighted to see Daylon so interactive! Your photos are always so fun. I have never heard you all singing and you never disturb, but last night I spilled cupcake topping in the hall and had to sweep. So I was by your door for a bit and heard you all laughing. I was not eaves dropping but was beuatiful to hear!

Mom to Many said...

I am so sorry for the loss of Bella.
This is a hard day for EB families.