First off I want to say that I was blown away by the response EB awareness week got! I am so impressed and so thankful to have such wonderful people in my life, such as you all, that have taken on the task of spreading awareness. From the bottom of my heart, Thank you!!!
The EB awareness posts raised some questions in Sweden and an article was written on Daylon and his experience with the Bone Marrow transplant program at the University of Minnesota. Their hope is that if they can get Daylon's results out there, their government could consider the transplant as a worth while cause to fund and have doctors invest their time in (social health care there). There was a bit of a translation hurdle, but overal, the aricle is pretty good. Mostly,we are just so grateful and excited to be able to help any other EB family try to find hope for their child! You can find the articleHERE
As far as Daylon is concerned, life is pretty good. All of the kids have been sick recently, a couple with pneumonia and Daylon toughed it out pretty well. Don't get me wrong, he did get sick (pretty sick for most) but he stayed out of the hospital that's what we love. As luck would have it, he was antibiotics for an infection during the other kids sick time so I think that had a lot to do with it. He was fairly healthy last week and now he's coming down with a little something again the last few days. The constant corneal abrasion don't help anything, to be honest. Today when he was feeling well enough to get off my lap, he would crawl around for a minute or try to play and then crash into something since he can't see a thing. Then cry and rub his eyes, then scream cause he hurt his eyes and then sit for a couple of hours with me. It was like this over and over today. I tried stopping him from crashing, trust me... but let's just say he's a fighter in more ways than one. :) I'm hoping that the rest he gets tonight will help to bring a happier day tomorrow
We have a doctors appt on Wednesday and we're praying that his labs look a little better. I know it's not realistic, but I can't help but have this idea that the renal failure will just, POOF! go away. I can't even process the possibility of a kidney transplant. My mind just won't allow it. Who knows? Miracles happen everyday and Daylon has been blessed more than any one I've ever known, so maybe right? =)
Because I missed Halloween, here are some pictures of Daylon in his costume and at the pumpkin patch (I'm throwing a couple in of the other kids too for good measure!). It was Daylon's first year trick-or-treating and our first year going as a family since he's been born!! I can't even tell you how good it felt to do some "normal" family things. It's finally cooling down out here and we've been able to go outside, heck, I can pick the kids up from school without his skin breaking down! It's fantastic! Back to Halloween, I have to say it was so adorable to hear Daylon say, "Teet-teet" (trick or treat)! He stayed on the sidewalk and couldn't care he was missing out on candy (he can't eat, so he has no idea what it is), but he loved going for a walk in his car...OUTSIDE the house!
He LOVED his pumpkin!!
We were actually able to have his foot unbandaged that week!
He stands!...he keeps his foot tilted, but HE STANDS!!
This is my final reason to raise EB Awareness on the final day of EB Awareness week this year. Reason #3- To Cure the Incurable.
I've given a lot of thought as to how I want to go about explaining the importance of this reason for me. There is a large portion of this blog's following that either know Daylon personally and have seen EB and how he's suffered or that follow several EB blogs and have heard all of us parents describe on a regular basis what our children go through living with this disease. It's a horrible disease. Before Daylon, I would have never imagined that such a horrible disease could possibly exist. There have been many, many times especially early on in Daylon's life when I would be in the middle of a bandage change or moments after I hurt him by trying to help him and I would think, "How can this be?".
Yes, it's painful. Yes, it's heart wrenching. Yes, there aren't enough words and it's worse than any parent could possibly describe. The awful truth is, there is no cure. With a cure comes hope.
I believe that we are close to a cure. Really close. There are some clinical trials out there trying to find a cure. I truly believe in the possibility to cure this disease with the Bone Marrow Transplant program at the University of Minnesota. There are still kinks that Dr. Tolar and Dr. Wagner are trying to work out, but they're making progress all the time. Unfortunately, like any other new development, they are only allowed to make progress when there's funding for the research. Because it's not a disease that a large population of the world suffers from, it's hard to get government funding, so it's left to the people. The more research they do, the safer transplant gets.
On October 11th of this year, exactly one year after Bella's passing, Nicholas Moore's mom posted to his blog that he had passed away the better part of a year after transplant. Thanks to funding, the last several transplants have been safer and the children are doing better than before the changes were made.
I am an EB mom with hope for her child's future...and I want other parents to feel the same way. I believe these doctors have the possibility of curing this horrific disease sometime in the near future.
I can tell you all day long how I think we're close, but I realized pictures can speak louder than words....
The following image may be too graphic for some.
April of 2010- Before Transplant
6 Weeks Ago-
Raising awareness means that when people are looking to donate for a cause, EB can come to their mind because they actually know what it is. It's a pretty important reason to raise awareness.
If you're interested in donating towards the cure now, you can text "Bella" to 50555 in honor of Bella or visit the puck website HERE to donate on a secure website. If you or someone you know is looking for a charity to donate towards at the end of the year for a tax write off, P.U.C.K. (Pioneering Unique Cures for Kids- Dr. Tolar's and Dr. Wagner's research ) accepts donation all year long! :)
A HUGE thank you to all of you who have helped in spreading EB awareness this week!! The support that the EB community has received from all of you; our family, our friends and our support system has been amazing!! Together we'll touch the world. We are so grateful.
EB awareness week continues! Reason why awareness is important to us #2- EB kids having feelings too.
Being the parents of an EB child means that your weeks are either hard or harder. Taking care of the child is work and it can be very hard, but the parenting aspect of having an EB child is more of what I am referring to. When a child is bullied at school, it doesn't just effect the child, it effects the parents too. It's a hard thing to watch happen and know you can't completely control the situation and shield your child from the pain of others...the pain of life. The same is true watching your child suffer through Epidermolysis Bullosa.
Lately, things have been rough. It is so hard to watch people stare at Daylon when we go out and make rude comments like he can't hear or understand their hatred for something they don‘t even begin to understand. He is a person. We have been kicked out of stores (Yes. You read right.) and been the reason for an obnoxiously boisterous parent to literally drag her children (by the collar I might add) and flee the store yelling to the point that everyone, including the cashiers stop and look, "LOOK AT THAT BABY!! LOOK AT THAT BABY!". Yeah. I'm not joking.
That was just this week.
Last May in a Target store, a middle aged woman had her attention directed to Daylon, after her adult daughter gasped. She quickly turned to look at him and replied, "Oh. That's just gross!" and then surprised by what she let slip, sheepishly left. I stood there, with the blood rushing to my face and the sting of her words pinching my entire body. I have begun to worry that if people keep behaving like this when he goes out that he'll develop low self esteem and think of himself as less that than the perfect little boy that he is. I don't want him to be afraid to go outside and enjoy life. After that woman's comment I went back to the hotel, cried of course, and then made little business cards to hand out to people.
Front
Back
As Daylon’s mom, it breaks my heart into a thousand pieces to watch him go from playful and happy, to embarrassed and shy when he notices people staring or sees children pointing. At just two years old, he lowers his head and stares at the ground. I now have these business cards to hand out and they have been helpful in convincing store managers and some strangers that he’s not contagious, nor a threat to anyone, but I can’t spread the word to everyone. Especially to those loud, stubborn people…you know the type.
Thank goodness for EB awareness week.
A popular comment we hear after people realize that he’s not contagious is, “ Why don’t you keep him at home so people can’t make a big deal or stare at him?”. I mean this the nicest way possible, but that is not an option. Yeah... No. I’m not leaving him locked up at home as if I were embarrassed by him. EB sufferers are like anyone else and have every right to go out and socialize without feeling like they’re being judged. They already live a life of pain, how can they possibly be denied interaction with the world. That’s just ridiculous.
Most times, children are the worst at staring, pointing and ugly remarks. I can only imagine what school aged EB children most go through not only at school, but in public, understanding exactly what is being said.
Wouldn’t it be wonderful if we could raise enough awareness of EB that when a stranger sees an EB child, they could recognize EB and offer a warm smile instead of a glare. Wouldn’t it be wonderful if we could always remember the God loves all of his children and is especially with those who are sick and afflicted.
“…Inasmuch as ye have done it unto the least of these, my brethren, ye have done it unto me.” Matthew 25:40
If we could raise enough awareness, we could take away one form of pain from the lives of those who live with the disease called Epidermolysis Bullosa.
Check back soon for Reason #3- To cure the incurable
My goal this week is to post every day or two on different reasons of why raising EB Awareness is important to Brian and I. Today, I'm starting with: The new parent
Every parent has their own story of the birth of their child...and every mother loves telling them. Funny, sweet, memorable. Daylon's birth story is not one I speak of often. It's not just because it's not a funny story, but because how we felt during that time brings up very personal feelings and I don't know that there are enough words to describe how we felt. For the sake of EB awareness week, I'm going to share our story with all of you.
After we had the twins, we contemplated being done with having children. Four always seemed like a good number for us. As we prayed for an answer, we knew that there was one more child to join our family. The pregnancy ran like a normal pregnancy for me- complete misery. :) But after having three other pregnancies, I was okay with things. We were just so excited to meet our little boy...a brother that Caleb desperately needed to stabilize all the girly in our house. At 38 weeks my uterus measured 8 weeks further along than I was and since my past single births were 9lbs 11 oz and 10lbs 3 oz, they were preparing for another big baby. Everyone in the operating room was making a guess at the baby's size and laughing. Feeling like a seasoned veteran, I wasn't the least bit nervous and just laughed as people threw out ridiculous answers like, "14lbs!". As my OB cut my belly and reached in for Daylon, I remember him saying, "Ok! Let's see what we got!". I couldn't see over the curtain (and my mirror only let me see the back of the baby), but I heard the room grow quiet. The only thing I heard was Brian say, "What happened to his face?" . Once the doctor turned him around, I was shocked that his face was covered in blood and the skin on the tip of his nose was missing. I held him for a moment and kept asking, "What happened?" While the nurses did admit that they had never seen anything like it, they were sure he had just scratched too hard in utero. Brian followed them back to the nursery and when he visited me in the recovery room, he brought pictures of his weird, long finger nails. I remember thinking that they looked like Edward Scissor hand's or Freddy Kruger's nails. When they brought Daylon to the recovery room to visit with me, the stay was short. He got to meet his big sister and two grandmas, but his lips turned blue and he had trouble breathing. He was taken away overnight for observation. In the following months, we would learn that this was normal Daylon behavior.
The next morning Daylon was brought back to our room and because our pediatrician was in his last week of recovering from hip replacement surgery, a pediatrician new to us looked Daylon over. I told her that I was concerned about his nose and his nails that were now looking to lift off of his fingers, but she told me that he probably rotted his nails by sucking on them and their length was more than likely due to being further along in pregnancy than we thought. I just kept thinking, "How can that possibly be?". By that afternoon, when I changed his diaper there were blood blisters all over his bottom and my heart just sank. Why is this happening? One of our biggest blessings that stay was to have the same nurse almost every day we were there. She watched these blisters form on his bottom with me and agreed that something wasn't right. I called the "stand in" Pediatrician and she told me it was probably just a rash. She then said that she couldn't believe that our nurse was encouraging a paranoid mom. I was so upset with her. By the next day, the blisters were on his elbows, feet, back and covered his squirming legs. I told my OB, the anesthesiologist, our visitors and every nurse that entered that room begging for help and they all said the same thing, "I don't know what that is. You should ask the pediatrician."
You know that dream that everyone has where you're running and running and someones chasing you or you're trying to get to someone and you never get to where you want to be? Then you wake up all sick and anxious? That is EXACTLY what these days felt like. I was begging for help, in one of the best hospitals in CA, and it was like no one could hear me. I felt like I was going crazy. He was not my first kid and I was not some paranoid mom. Something was wrong with my baby. I knew he was off recovering, but I called our Pediatricians office and asked that he come see Daylon.
While the hospital doctors didn't know what was wrong with Daylon, they did know something was off. I had to lay on the hospital bed while the doctors looked over every inch of my body looking for an infection or STD that I may have passed on to my new son. It was so humiliating ...but at least I was kind of being heard.
Early the next morning, the nurse came in to remove the little round band-aid that had been placed on Daylon's thigh his first day of life after he got one of the Hep vaccines. When she pulled the band-aid off, the skin under it came off too. Daylon screamed in pain and the nurse and I were horrified. I remember how sick I felt. How I just wanted to go run and hide somewhere. Thankfully, about 30 minutes later our wonderful pediatrician, Dr. Blumberg walked into the room. I was sitting on the edge of the bed preparing to walk Daylon back to his bed (I'm still recovering from the C-section) when he entered. I remember the second I saw him, I was so relieved that there was finally someone here who would listen to me that I started bawling. I pleaded with him to "please help my baby!" Then continued, "He looks like someone dragged him through the Amazon and gave him some foreign disease!". He looked him over and said he wasn't sure what he had, but he would go get help. He returned about 10 minutes later with a NICU doctor who examined Daylon over and diagnosed him with Impetigo. The diagnosis just didn't sit well with me. I had seen Impetigo several times working at a preschool in previous year and it never looked like that to me. Dr. Blumberg looked at the NICU doctor and said, "I was afraid he had Epidermolysis Bullosa." ....and that was the first time I had ever heard that name.
We were discharged from the hospital the following day with antibiotic cream to apply on the blisters several times a day. As the next 24 hours passed, the blisters not only didn't go away, but grew in size and multiplied. Around his mouth and chin was covered in little blisters and there were even blisters growing in his mouth that were painful enough to have him quit eating. The morning after he was discharged I sat on the couch of my parents house (thankfully, they had us spend the night so they could help with the other 4 kids) with Daylon trying to change his outfit for the 10th or so time (as the blisters would pop from movement, he would get wet and need to be changed). He was screaming in pain, I was crying and Brian was pacing the living room. I had this sinking feeling in my soul that he was very sick and dying. We decided then and there that he was going back to the doctors. Brian video taped Daylon's body before we left. Excuse the bounciness, we were a bit anxious as you may have guessed.
The following video may be too graphic for a few viewers-
Thankfully, it was Dr. Blumberg's first day back and he got us in right away. He told us that he thought he had Epidermolysis Bullosa, a rare genetic disease that he had only seen once decades earlier as an intern in Los Angeles. He sent us to see a dermatologist immediately after. The dermatologist (which judging from their clientele in the lobby was a botox-y kind of dermatologist) gathered his fellow doctors and they examined Daylon and then left the room. Two of the doctors returned a short while later and said that they believed it was something genetic, but didn't know what, so they were having him admitted at the local children's hospital for testing. Infectious disease among others examined Daylon and once again, I was checked and then questioned... and then Brian was questioned. I really think they were sure I was going to suddenly confess, "Oh yeah! And then there was that 6 week stint during my pregnancy when I prostituted myself out...". The idea that two people would wait until marriage and stay faithful to each other was apparently too much for them to believe. Anyway,almost a full week passed. Sixteen...that's right...sixteen doctors later, we met Dr. Metz, a pediatric dermatologist who took a punch test of Daylon's skin.
She gave us the DEBRA website and told us to only look at this website. We were warned to stay off the Internet because it could drive us crazy and scare us as we waited for the results. It was difficult, but I was obedient. I printed off the list of the close to 20 different types of EB and went through each symptom guessing what he might have. Even just reading on Debra scared me. Reading symptoms that could come, discovering that our touch was doing these horrible thing to his body, learning that several of these subtypes carried shorter lifespan...is was so much to process. Honestly, though; if you mix this sort of news with the hormone changes a woman experiences shortly after giving birth, it's absolutely horrible for her. You carry this baby for 9 months knowing that it will all be worth it when you hold your beautiful baby and you start to plan what your life will be like with this new baby: pick out cute outfits, imagine those giggles from blowing raspberries, rubber duckies and bath time, etc, etc and in a second the dream is not only not possible, but your baby is sick and you don't know how to help or who to ask for advice because no one you know has heard of what your child has. I seriously remember watching a Pampers commercial with this crawling baby and the whole time I just thought, "How will he crawl?". I really began to worry when our fingerprints appeared on his head through his blanket from lifting his newborn body.
At 3 weeks old, we were called to the doctor's to receive the results. We were told that he had Junctional Herlitz form of EB. I couldn't remember which one that was. Junctional meant worse than we were hoping, but still not horrible, right? She gave us a bunch of print outs and answered our questions including "Is there a cure?" and then we left. We were in the elevator on the way down when I started to read the print outs. I scanned for Junctional Herlitz and began to read, "Junctional Herlitz EB is a very severe form of EB. These infants often die in early infancy..." My head spun, my heart raced and I began to think I would pass out. Brian and I made it to the van, snapped in Daylon's infant seat, shut the doors and cried together. The idea of giving birth and burying your child within months made me sick. We felt so alone in the world. We have wonderful family and friends who love and support us, but we knew no one who had a child with EB, no one who knew what EB was. We didn't know how to diaper him, how to bandage him, how to bathe him, how to dress or hold him without blistering him. We had to come up with it all on our own and Daylon paid for our mistakes.
My hope, is that no other family has to go with their child misdiagnosed and feeling alone and lost. If more doctors know of EB, then they can diagnose properly. The more people who know about EB, then the more people that have the opportunity to comfort a family with a newly diagnosed baby. Please spread EB awareness. Please share what you know about the disease with someone who doesn't (it's probably most people you know).
We are so thankful to have all of you wonderful people in our lives. Thank you for being our friends and our support group. We love you.
Check back soon for Reason #2: EB kids have feelings too
I'm not sure if I've mentioned this or not, but Daylon gets sick every morning. Seriously, e-v-e-r-y morning. He throws up for the first 45 mins or so that he's awake. Sometimes more, but never less. Three or four nights a week, the vomiting starts in the middle of the night and goes into the morning with an hour or so of sleep in between. As he's gotten older and his stomach content is no longer that of a baby's, this has become especially rough. In the morning, while he is sick, he is no mood to play and often cries with sudden screaming. During the day, if he's given anything too sweet (juice, yogurt), meat, veggies or red dye, then he becomes sick again. Am I sick of being sleep deprived and smelling like puke or worse yet, watching my son in misery? Oh yes. But this is his life and to be honest it's a huge step up from where he once was.
Last week, as the temperatures climbed up to 100F, Daylon's benefits of transplant began to fall. His skin started to tear and slough, his vomiting became projectile, there was blood in his stool and one of my biggest fears, his cry and voice became hoarse. The hoarse cry is a classic JEB thing. It's a sign of the larynx blistering. When Daylon was a baby, his cry was a whisper and we would set our alarm clocks for every 15 minutes so we could check and make sure he wasn't crying. Because the damage from the past, Daylon can't afford to blister in his throat and airway now. In the middle of the night on Friday, he rubbed his eye and caused a corneal abrasion. He kept his eyes closed most of the day Saturday and managed his pain quite well. He did however, continue to throw up through out the day. On Saturday night, while getting him ready for bed, I accidentally poked him in the eye and caused the eye to get worse and consequently, his pain. I hate that I hurt him. On Sunday he was in pain and cuddled most of the day. Just before dinner he was content enough to sit on the ground so I could drain my pasta (Brian was busy with the kids playing a board game.). Anyway, he picked up a foam sword and because he can't see, poked himself in the other eye causing abrasion #2. He was so miserable the rest of the night. Because he's been pretty healthy lately, I don't even have any pain meds in the house, so he just had to tough it out with Tylenol. It was awful. Over the course of the weekend he also started scratching like MAD! I have no clue why he so much more itchy, but that didn't help the skin situation. He was just plain miserable.
Monday morning while I was getting the girls up for school, I could hear Daylon start to dry heave. I went in to check on him and he was covered in blood and vomit. Brian came in and we cleaned him and his bedding up. He was breathing really quick shallow breaths and his whole body shook. He didn't have a fever, so I couldn't figure out why he was shaking.
I will be honest, it does throw me into a bit of an emotional and mental funk when Daylon's JEB symptoms come back. His skin does still fall apart and he still has many signs of EB, but it's the JEB symptoms that freak me out. Once we got over the big scary part of the transplant and it really started to improve his condition, then I've just worried about things like kidney function and malnutrition. I guess I've just gotten to where I look at him and think that the transplant will keep him safe from JEB and what it brings. I do know that there's a chance it could reverse, but I don't let myself really process that most days and that's how I keep from going insane. The last few days, I can't help but think that. Daylon is 27 months old with a life expectancy of less than 12 months. I am grateful for everyday, but I do get scared some days too.
Anyway, I called the doctor to see if I could get him in that day and he wanted us to take him to the ER. Given Daylon's history, several different things could be going on, which is their big concern. He was admitted to the hospital, had a chest X-ray, a bowel X-ray, a head CT, blood cultures drawn, a virus culture, urine sample and MRSA check. In other words, he was poked and prodded all the live long day. For the most part, everything came back fine. His white count is high, probably from infection and stress and his bowel X ray shows build up and blockage. More than likely, his GI tract is blistered causing bleeding and slowing in his GI tract. All and all, it's just EB stuff and he probably would have done better at home, but EB is a lesser known disease at CHOC, so they like to error on the side of caution. After he pulled out his second IV in 12 hours, they decided to can the IV antibiotics and go with oral so we can just stick it in his gtube. Since the blood cultures were negative at 36 hours, I was able to convince them to let him go home.
This was written all over the couch in Daylon's room in the Oncology ICU. Needless to say, Daylon does not feel the same way the couch does about the hospital. :)
We've kept him comfortable with bed meds and an increased doses of hydroxizine (his itch med). He's still puking a super ton and acting out of sorts, but there is about an hour after the pain meds kick in that he's happy and being his silly self. He even crawled for a few minutes last night. At one point, he opened his eyes a tiny slit looking for a toy, so I think there's improvements there.
A huge thank you to everyone who has offered prayers and service on our behalf! Especially to my mom for driving out to Lake Elsinore last night and staying with my kids today (keeping up with 3 different school schedules and extra curriculum can be a total pain!) so Brian could work! You're a lifesaver Mom! Thanks!!
Oh! I've decided to post a family video of Daylon when he was first born for EB awareness week. In my opinion, it's a pretty powerful video. I hope that all of the blog readers will take the time next week and share what they know of EB with one person (if you feel like more, go for it!). Let's get the world talking about EB next week! Check back next week for the video and EB awareness post! =D
I can TOTALLY see Daylon being the class clown. All of our kids can be quite the little ham (I kind of think all kids are) but Daylon is the hammiest of the hams in our sty (play on words-not that our house is a mess...at the moment). He will do anything for a laugh, which is always reassuring for a parent; especially the parents of such a fragile guy. He will throw his head back and fall over, growl, randomly bark at those hear a pin drop reverent moments, smack himself with a plastic stick, etc, etc all in the name of humor. He can have us rolling easy-peasey.
Here he is about two months ago when he started feeling better and his true colors started to shine.
It's kind of funny to see how much more he's talking in such a short period. Anyway, his latest trick is launch his booster seat backwards so it's on two legs (he crashes into the wall). Yeah. I think I may have a heart attack.
The whole point of this post was to tell you all about his latest stunt. Just a little bit of a back story, Daylon is puking up anything solid so he sticks to drinking. He loves to drink milk specifically. If he's sitting, he has a cup. I think you got the drift. We tend to stick to open cups at the table because they're less likely to hurt his mouth. Okay, so story time. We're all at the dinner table, dinner is winding down and I want to show Brian how Daylon's coming on his counting.
Me- Watch this Brian! (turn to face Daylon) Daylon, let's show Daddy how big you're getting. Can you count?
Daylon- no!
Me-Please....
Daylon-(blows raspberry)
Me- (laughing) Ok. Count with Mommy!
Me and Daylon together- One...Two...
Me- Three!
Daylon apparently thought I meant, "...on three" when I asked him to count because when we got to three, he launched his milk cup across the table and all over dinner. We all jumped, I may or may not have gasped audibly and the kids just thought it was the funniest thing ever. Brian and I tried not to laugh, but truth be told, I'm a lot better at it than he is. :) It's definitely not something I want repeated, but it was so good to see a kid whose had little to no personality since his stroke, really act like a kid. I've really enjoyed watching the old him reemerge from his brain, even happier and crazier than before. Thank you for all your prayers! They're working!
Just a quick post to let you all know that we're still here and doing well. Daylon has MASTERED the word, "no" only it's more like "NO!" and uses it all the live long day. His mentality must be catching up with his age because it sure does seem like he's walking through the dark shadows of the Terrible Twos. =) He loves throwing things, especially his food...and suddenly, when I don't expect it and my back is turned. He is trying, trying, trying to stand, but nothing yet. Just a lot of bloopers. They would be funny except we have the double whammie of sensitive skin and a pretty colossal risk of another head bleed to worry about.
We've had a pretty cool Summer in California, until September when it's decided to climb well over 100 degrees several times. I know, right? Anyway, Daylon has need to spend some time outside everyday to drop off kids at school and then pick up Caleb at noon and pick up Keira at 3pm. Our school was meant to hold 400 and there are 900 enrolled. Needless to say, traffic is Kaaaa-ray-zeee! We have to park down the street and hike it up to the school, no biggie except for the smoldering heat. His skin has just kind of thrown it's hands up in the air and said, "Enough!". His face, chest, legs (especially thighs) and diaper area have just fallen to bits. He's still scabbing though, so that's a good sign that the transplant is still in full swing. I did wrap him back up for a few days last week, but he wasn't having it. He would just roll down the tubifast and rip the transfer off and then scream cause it hurt. I guess that's the down side to transplant. The kids forget their old life and go through culture shock when they have to relive part of it.
I just wanted to post some pictures I took today of Daylon is his super cute cape made by the women in the Corona Stake. So sweet of them and he seriously LOVES it! I had to pry it off of him to sleep. :)
any guesses on what he's saying here?
Our little Superman
Thank you for all of your support and love! You're wonderful!
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)
mo (more)
milk
hi
yeah!
no
ball
up
done
please
dog-dog
- 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)....
I have a post that I've been working on every now and again, when I find a chance. Things have been busy. In the meantime, please read and comment on Tripp's and his momma, Courtney's blog. Tripp has Junctional Herlitz EB too (but much worse than Daylon is now) and is very sick. She is experiencing the moments that Brian and I have dreaded for two years and my heart just breaks for her. Thank you all so much for all the support you've offered our family over the last year. It's meant the world to us.
Daylon's birthday is tomorrow! I can hardly believe our little guy is going to be two years old! I never thought we would ever celebrate his second birthday, so this is a dream come true. Daylon loves, loves, LOVES balloons, so it made sense to us to have a balloon (and polka dot) themed party. He was in HEAVEN! Because Daylon's immune system isn't quite what it should be at this point post transplant we kept the kid list to just cousins and our EB BMT family. It was hotter than hot (I believe it was 100F) at 4pm when the party started. I was so nervous to have Daylon outside in that kind of heat, but close to 5 o'clock or so, we ended up testing the waters and having him go outside. He sat under the canopy for some protection and had a blast. All in all, his skin did beautifully and handle the heat with out any blisters or breakdowns. Woo-hoo! All five of my siblings (and their families) were able to fly down, along with my 3 Aunts and several of there kids (we planned it to go along with a family reunion). We loved seeing everyone and celebrating with so many loved ones. Because my mind (and consequently, words) are failing me and this moment, I'm just going to show pictures. Here we go!
The Pops came down from Sacramento area (an all day drive)! It was so fun to see them and the Ringgolds!
the kids loved playing with Chloe and Ali for the first time since Minnesota
Balloon Games
A balloon pinata
Daylon thought smacking the pinata with the bat was pretty cool! He almost didn't get a turn because I honestly, didn't think he would get it or care. I'm so glad he loved it!
The hit that did her in!
this cake looked better at the beginning of the party. The balloons are rice crispy treats and were sitting on dowels, but the blazing heat melted the marshmallows and fell completely through. I voted to throw them out after that happened (like 30 mins into the party) but my aunt Gwen had an idea to just set them on top. It works I think. Not my best cake, but oh well. Daylon liked it and that's what counts, right?. =P
Daylon got his own cake to dive into. We figured that since he was in a coma for his first birthday, it was only fair! :)
look at him grab it!
Balloon toys
For one activity, our good family friend, Gloria made balloon animals, hats, weapons, and jewelry for everyone.
Some more of our LONG DISTANCE travelers
Aunt Lindsay (from Idaho) holding cousin Elizabeth (from Utah)
this pictures cracks me up of my dad. Anyway, he next to Sara and Donald from Vancouver, WA
Aunt Gloria (CO) and Aunt Marla (WA)
Bubbles!
Presents! (Big thanks to Becky for taking the present pictures!)
We ended the party with a water balloon fight that turned into a full out war.
I stayed inside to save my camera so the pictures aren't the best.
My only regret (besides the heat, which there's no changing) is that I took more pictures. I was so busy running around that I missed some great moments. We feel so blessed to have been able to spend two great years with Daylon! We love you, son! Happy Birthday!!
Stay tuned for an actual birthday post hopefully (fingers crossed) this weekend.
We're Brian and Jennifer Edling and we have 5 beautiful kids: Keira,8; Caleb,6; Violet and Sadie, 5; and Daylon who turned 3 in July. Daylon was born with a rare disease called Epidermolysis Bullosa. His specific form of EB is Junctional Herlitz. When contact is made with his skin, it blisters and peels or sometimes rips right off. Unfortunately, his form of EB also affects his soft tissues (organs, throat, mouth, eyes etc.) giving most kids with his condition less than one year to live. Thanks to modern technology, there's a new clinical trial Bone Marrow Transplant at the University of Minnesota for severe forms of EB. On June 24, 2010 Daylon became their first JEB patient to undergo transplant. We're all so excited at the prospect of Daylon's improved life! This is the story of our sweet baby Daylon, and life with EB.
