Day + 115....This just in!

Hey all!
Hope everyone is doing well! I have some super exciting news and I can't wait to share it! Ready?
Here it is....
Daylon sat up for five...count that...FIVE whole minutes straight! I have no idea where that came from! He was sitting up for about 30 seconds straight before he would poop out lately and we were thrilled with that much progress! I guess he's having a "go get 'em" day! =) I'm so stoked! PLUS! Not to brag, but he has been so ridiculously excited and happy the last 24 hours that we've been on cloud 9! He's so smiley again and I love it! It's contagious! My other kids were being little pills yesterday (yes, that happens sometimes with them. :) ), and every time I was about ready to run for the hills, I'd turn and look at Daylon and he would just beam. My frustration would just melt away and all I can do is smile and want to pinch his little cheeks!...no worries... I didn't. :) I wish I could bottle his smiles and send them to you all.
I don't have time for a full post, everyone is up and going a million miles an hour right now, so it's back to the grind. Hope your day is going as well as ours! Thank you for all your comments and support, by-the-way! You guys are awesome! Have a happy day!
 PS- I took like a minute of video but the Internet is too slow to let me post it today. Sorry! This is gonna have to be a pictureless post!

Day +113

Alright, so for starters, thank you for all for your comments from our last post! Some of them were very insightful. I even got some, lets just say, less than nice, emails from some of you. I think I offended some of you with my thoughts on baby sign for Daylon. For the record, this blog is about Daylon and our family. I have never wanted to use this blog as my soapbox or try to convert the world to my way of thinking. I'm using it to update all of our friends and family on our lives 1600 miles from home and the goings of his BMT and life with EB. That's it. I never meant to offend or pass judgement on anyone.  I think that whatever decision you make in raising for your kids is right for your family, because you have their best interest in mind.  As far as our decision, Daylon is not a typical baby. Maybe I haven't painted a clear picture, but the damage done to his brain is not small. It's his entire left side. Some of the therapists did want to start him on baby sign, but the reason is because they don't believe he'll ever talk again (keep in mind they're not doctors. They just looked at his MRI, saw the damage, and came to their conclusion). We were not ready to come to grips with that and just throw in the towel. What we have learned from the Neurologists is that when a child's mind is working on one area an excessive amount, then other areas can lack in progress. Daylon is in Physical therapy 3 times a week and Occupational therapy 2 times a week and just reteaching him to do things like hold up his head and sit is taking a large amount of brain power. We need to make sure that he is verbally stimulated and if we start adding signing to the mix, he'll likely pick that up instead of talking since he's already working so hard at physical movement. Not to mention he'll really have to focus on the physical aspect of talking since he struggles to get his right arm to move and can't control his right hand at all. The more time that passes from his stroke, the harder it is for his brain to rewire itself. At times I feel like I'm in a rush against time to reintroduce him to simple surroundings and tasks, if he's ever going to get a fair chance at life. I can not express the amount of guilt I have that he sits for 20 hours a week drugged through dialysis. Sorry, tangent. The point is, verbalizing his thoughts stimulates his brain and help to repair the damage done. On the 28th he'll be reevaluated since it will be 2 months that he's been coherent. At that time the doctors can get a better idea of what is going on with him long term. If they feel that he will never be able to speak or that his speech will be limited, then we'll start teaching him American Sign Language. Ok, so I'm done. =)

Daylon napping on Mommy's and Daddy's bed

 So onto the last 24 hours...
 Daylon had dialysis at 7:30 (I know, even on a Saturday! Yuck!) and Brian being the wonderful husband he is :) took him so I could stay home with our kids (including our Birthday Boy! Caleb turned 4!!). They took off 600 grams and his labs showed that his Creatinine and BUN are about the same. Hey! At least they stopped going up! :)

  After dialysis Daylon was a bit fussy and dry. I gave him 2 ounces of this organic baby smoothie we found at Target, turned off his feeds and let his tummy vent. It wasn't so much that I wanted him to digest it as I wanted to moisten up his mouth. Thankfully, he didn't throw it up!! This is HUGE folks! He known for puking after getting his meds down his J-TUBE ! Yay, Daylon!  I hoping, hoping, hoping that maybe we can keep his mouth's and tummy's blisters under control with the extra fluid throughout the day. We've tried in the past and he just ends up throwing up which is torture for his throat and mouth.

 Today Daylon slept until 2pm (SHOCKER!) which was perfect because Brian and I (and our four big helpers) were able to straighten up the house, get everyone ready for church and go over the kids line for the primary presentation one last time and send them out the door, all while Daylon slept. Made my life easy! I was a bit bummed to miss the kids presentation (In our church, all the kids in the congregation put on a presentation with a theme, songs, and little lines each kid gets to say in front of everyone), especially because it's Caleb's first Primary presentation and our kids have quite a few lines this year since there aren't a ton of kids in our ward (think congregation) up here. Oh well. Next year. :) Anyway, Brian said they did great! We're so proud of them!
  Daylon is smiling tons right now, so I'm off to enjoy them while they're free for the taking! As always, thank you all for your prayers for Daylon! Sweet dreams!

In our family it's a tradition to start off your birthday with a candle in your favorite donut. As you can tell, Caleb LOVES this tradition!

His cake was made by Keira and she did such a great job! She was so excited to surprise her brother! You might notice a few pot hole size marks on the cake...yeah, you can thank Violet for that. :)

Day +112

 I don't know what's wrong with me. I've stare at this computer screen for 10 minutes and well, let me just point out that this is where I'm starting. My brain is dead apparently. =)

 Daylon is doing pretty well lately. Today was kind of a rough day for Daylon (fussy, hard time being up,  etc.) but overall, he's been happy and making baby steps forward.

  So, kidneys...things are going less than great with his Creatinine at 3.5  (should be below .58) and his BUN is 100 ( should be 19 or less). All this basically means his pee is keeping his weigh down a bit, but he's not filtering the poisons from his body. He is gaining about one and a half kgs every other day (like 3 lbs), so although he's keeping some weight off, he's still gaining without dialysis. Yesterday, they tried to take off 1450 grams which was NOT happening. The funny thing about dialysis, is that it's not as easy hooking up a patient and punching in a number. There's various sorts of pressures to worry about and then the patients reaction to the process should come into play as well. The problem with outpatient dialysis is that they can't give any meds for pressure's support.  Taking off that much is asking too much out of such a little guy. It would be like taking 20 lbs off an adult. Yeah, that can't feel good....not to say the ideas not appealing! haha! :)


2 nights ago...So, I know I've already shown you pictures of him playing with his "Tickle Me Elmo", but he LOVES this toy! He totally cracks up when Elmo starts vibrating and laughing! The kicker is we don't even watch Sesame Street! It's was just a great BINGO win! Good pick, Grandma! He's so sweet!



  The only other new thing with Daylon is his speech...or lack there of, more realistically. Daylon can definitely understand more and more each day. If you ask for something, he'll give it to you, or if I tell him "I'm going to put your medicine on your teeth. Don't bite mommy." he'll open his mouth and not bite (This is HUGE in my book because being bitten by an EB kid's daggers in less than fun). Since we've been home I've not heard him say "Mama" or "hi" anymore. If you work long enough, I mean all day long enough, then he'll say "up" or whatever the word of the day is. If we try to move on to another word, the first word is gone. I know I've said this before, but pre-transplant he was such a talker!! He was 10 months old and said about a dozen words but the funniest thing is that you could ask him to say anything and he would give it a try. It wasn't like he knew what he was saying or that he was committing the word to memory, but he could say, "badge", "midnight", stuff like that. I know he wants to talk...his eyes light up, he starts rocking, moaning and is just so excited when you ask him to say something. As his mom, I have to admit that it's a bit tough on the heart strings to see him want to do something that he seems to be physically limited from doing. We have an appointment with the neurologist on the 28th of the month to go over his latest MRI (he's not had it yet), possibly lowering some of the meds he's on, and talking about the idea of using sign language with Daylon. The speech therapists have wanted us to start teaching him baby sign language, but I'm not a fan of the idea. What I saw as a preschool teacher is that the kids who use the baby sign speak later, than those who don't since I'm assuming, there's not much incentive. I'm worried that if we tried to teach him sign language then it will slow his speaking process even more. On the 28th we will talk about his overall ability to speak long term and the possibility of using American Sign Language.
  Oh! I almost forgot! The official results for Daylon's PT test were mailed to us yesterday. Here they are:
Gross Motor Skills  (FYI: Daylon's 15 months old)
Stationary: age equivalent to 4 months old
Locomotion: age equivalent to 1 month old
Object Manipulation: age equivalent to 12 months old

Ok...so it's not great...but remember he's improving everyday. We believe in Daylon and support him to the best of our abilities and I know he'll be where he should be one day.

 Here are some photos from the last couple of days:

Jumping in the leaves in the Courtyard

  





Singing Time with Jammin' Jan

During karaoke and dance time. EB siblings from left to right: Parker (Payton's brother), Chloe (Elle's sister), Caleb, Ali (Bella's sister) and Keira



Lion cubs!

Presenting.....Keira and Ali!

While all four of Daylon's one year old molars and three of his eye teeth came poking through (that's right. 7 BIG teeth at once), Keira lost her 7th tooth!



I wanted to give a very special "thank you!" to Melanie, Kendra and Lacey from North Carolina who made these T-shirts for their race to bring support and raise awareness of EB! We are honored that you used Daylon as one of the babies on your shirts!

My hair is covering the "I" in "I Run For" 

I feel like our four little butterflies have grown up together, even though we haven't all met. All four were born in the US within a couple months of each other. I love these kids!

Day +109

Hello Everyone.
I just wanted to let you all know that Bella's heart stopped yesterday afternoon and she went to live with our Heavenly Father and elder brother, Jesus Christ.  We are all shocked and saddened by the loss of sweet Bella. I ask that you please take a moment from your day to visit Bella's blog and leave a message for her family. We have come close to loosing Daylon a few times, and I was beside myself. I can only imagine what her poor family is suffering right now. We can all rest a little knowing that Bella is finally free of EB and all the pain that she has had to endure in her earthly life. We love you, Bella! Until we meet again!

*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*

 Daylon has had a good weekend. We have witness the benefits of your prayers in our lives once again.
-On Tuesday I posted that Daylon's post stroke issues were really concerning us and that his personality wasn't improving the way we'd hoped
-On Wednesday we united in special prayers for Daylon, with an emphasis on his kidneys
-On Thursday...no joke...Daylon woke up happy and smiled and played all day. We were thrilled with the happy change of events, but honestly wrote it off as a fluke day.

Daylon playing with his "Tickle me Elmo"

   ALL WEEKEND LONG, Daylon has smiled, played and coo-ed! It's been SO amazing to have our happy baby back! He's so adorable! I just want to squeeze his little cheeks! I don't, of course....his skin is good, but not that good! :) I know he's my kid, but I think he's so cute! Oh. I have a new first in the life of Daylon! A therapist was fussing over him and said, "He's such a pretty baby!". I just sat there numb and on the verge of tears. That has NEVER been said about him before! When people look at an EB kid, they often have a hard time seeing beyond the sores, pain, suffering. He's always had a personality that shines through all his boo-boos and he's been called a doll, sweetheart, angel, sweet, pumpkin,even cute (which I pretty sure people use to describe his personality) but never pretty. Looks aren't everything, that's for sure,  but to hear that he's improved enough for other people to see him as his family and friends see him, felt great. :)
  Daylon's CSA level was upped again on Saturday. His rash is getting worse and they want to keep his levels up high to help his body fight GVHD, if that is what it is.  Considering all that, his kidneys are maintaining consistency at the level they're at, which is a little miracle in itself.
   On Sunday, Daylon rolled a bit during nap time and his G-tube started to fall out. I'm almost grateful I was at church for all that. By the time I called, Brian had dealt with the fiasco (he called the BMT Fellow) and it was over. Good save, Brian!
   OH! I forgot! The end of last week Daylon started using his left hand to clap by hitting his tummy! It was so fun to watch him adapt to his circumstances and be happy. Each day this weekend, he made big strides with moving his right arm up and getting it to interact with his left. Sunday night he start actually clapping! That's right folks! Both hands, moving together!...on purpose! Go Daylon!

   Well, that's about it for now. I'm totally drawing a blank. I blame 4 hours of sleep each night. :) We're so thankful that you're all Daylon's cheerleaders!

Pictures from this Weekend:

Friday: Keira and her puppet for the RMH puppet show



Saturday: Built a fort in the bedroom. Played, ate dinner and then watched "The Princess in the Frog"



Sunday: after dinner

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

Ouch

   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

                                                                                    vs.
The Gold Monsters

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

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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!
FANGS!!

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!"