What are you doing next weekend?....

...for us, (assuming we're not in Minnesota) we'll be attending Bella's Birthday bash.

  I just wanted to update all of you So. Cal. readers on Daylon's friend, Bella birthday party. I'm sure that most of you remember me writing often about Bella and the rest of the Ringgold family when we were in Minnesota. Bella was 6 weeks older than Daylon and had her transplant 8 days after him. They went through the ups and downs of chemo and transplant together and lived just 2 doors apart in the PICU. We obviously grew very close with the Ringgold family. Unfortunately, 101 days after her transplant Bella passed away. She would be 2 years old this month. In honor of her memory, the Ringgold family (and many others) are hosting a Birthday party/fundraiser with food, games, crafts, etc. All proceeds raised from the event will go directly to the P.U.C.K. organization. P.U.C.K. or Pioneering Unique Cures for Kids, is a great non-profit organization that is working with Dr. Tolar and Dr. Wagner to help fund their research while they work on a cure for EB and two other rare, but fatal genetic diseases (click on the word "P.U.C.K." to find out more). I had a conversation with Dr. Tolar when we were up in MN in Feb. about the research he is doing. The hope is that if they are able to receive enough funding to finish their research, then he would be able to pinpoint the exact stem cell linked to the form of EB that the patient has and the amount of chemo given could be less than it is now. Afterall, it is because of the affects of the chemo on the body that Bella, Elle and Sara (the daughter of the founders of P.U.C.K. and the first baby to die from transplant) have passed away and it's the reason for all of the troubles that Daylon has gone through from multi organ failure to eventually brain damage. Raising money for this cause is especially important to me of because as of right now, Daylon is the only baby to have gone through transplant and live...and we all know what kind of road he's had to travel to get there. That's a big problem for all of the other Junctional Herlitz kids out there. Since the life expectancy for these kids is less than a year, transplant obviously has to occur in infancy.
  If you're in the Orange County area on the 21st, you may what to consider stopping by the party. You have to eat anyway, right? You can grab some yummy food, play an activity with your kiddos and all while supporting a great cause. I'll right. I'm done yapping. I don't want to make it feel like a high pressure sale. :) Ha, ha!
  Here's the info:

Oh! PS- Still no news on when we'll be in Minnesota. We'll keep you posted.

To my baby boy

  Dear Daylon,
 
  It will be a year this week that we arrived in Minnesota for your Bone Marrow Transplant. We were all so excited and so scared for what this opportunity might bring to your life. Your big brother Caleb was the proudest 3 year old I've ever seen. He would tell anyone (from the mailman to the doctors) the same line: "My name is Caleb and I'm three years old and this is my brother 'Dane-nan'. I'm going to be his donor transplant and makes his boo-boos go away!". To this day, he loves to brag that he has "Strongman cells" and now you have them too. Your skin looks so beautiful. Today after dinner when I lifted you from your highchair you snuggled your face in between my shoulder and my neck and my heart said a prayer of gratitude. Your life is so different now. You still love to cuddle up with a blanket, but now the blanket is over us and not separating us. Flying in the air with Daddy like the other kids is something we never thought you'd know and I actually remember crying about it. Now we know that it's your favorite way to play. Although you are still not quite as healthy as we wish you were, my heart is full to know that you aren't in constant pain.
  This morning as I was unpacking, I came across a poem I had written one night when you were only a few months old. At that time, there was no hope given to you as the transplant program was not open to all severe forms of EB. It was the hardest thing in the world to rock you to sleep every night knowing that you would return home to our Father in Heaven before I could get a chance to see you grow. On this particular night, I had given you an especially painful bath and dressed you in your bandages . Your skin was very broken down and raw and you lost more blood than usual. As with most nights back then, I began to feel a little panicked that you would be taken from this earth within a very short period of time. After all the dressings were on and you were gooped up with Aquaphor, I wrapped you up in your big fluffy blanket and sang to you to try to calm you down. Your little head was all I could see through the heap and as I watched you fall asleep, a flood of emotions overcame me. Mostly, I just felt the blessing of being your mother and the mother to your four siblings. I grabbed a pen that was resting near my rocker and the words just spilled out on the paper.

Daylon

Watching you sleep peacefully in my arms tonight,

Wondering if we're ever gonna win the fight

I'd give anything to know how to make everything alright

and turn all this darkness into something bright.

Sweet little boy of mine,

I wish I could stop the hands of time.

In this moment while you sleep, everything is fine

and I'm gonna lock it away in my heart for all time.

I wish for you a life where you could cuddle, crawl and play

And never have to shield yourself from the sun's golden rays.

Pain and agony would never consume you as you lay,

helplessly waiting for the light of a new day.

Sweet little boy of mine,

I wish I could stop the hands of time.

In this moment while you sleep, everything is fine

and I'm gonna lock it away in my heart for all time.

One day it will come, that you'll be EB free,

and all the sorrow and suffering will flee.

Then I'll kiss you and tickle you as you giggle with glee!

My son, I'm so glad we can be together for eternity!

 I love you, my Sweet Boy.

Love,

Mommy

long time gone

 Hey Everyone,
  I'm sorry it's been so long since my last post. Life has been a whirlwind and at the end of my day (around 2 am) the thought of sitting down and processing my thoughts so I can blog about life, is unappealing to be perfectly honest. For me, sometimes it's best to just plow right through and think about stuff later. Not the most grown up of tactics, but it works. :)

  Daylon's weight has continued to be a big concern. He weighed in this week at 10.3 kg. Last week he was up a smidgen but it may have been his clothes. He's eating pretty well and is willing to try some table food even. His weight has just continued to drop for no known reason. If I saw him from off the street I would guess that he has failure to thrive. His mood has been going between depression and fussy for months. He quit talking, laughing, smiling, playing, or showing interest in anything but being held. Even when he's being held, he's still fussing. It's been emotionally trying for both Brian and I to watch him suffer for and not have a clue what to do. We've really been praying hard for him this last week and we have started to see an improvement. He smiled a couple of times this week and even laughed once yesterday. Starting this last weekend he would pick up an item or toy and sometimes actually look like he was playing. The improvement in his personality has meant the world to us. Now if only he would gain weight....

  We saw Dr. Grant (GI specialist) last week to come up with a plan for Daylon's nutritional needs. Daylon's labs have improved some but his electrolytes need some serious improvement to keep Daylon alive. The doctors don't feel that another g-tube or PIC line are a good idea for Daylon. The trouble Daylon has had in the past with the g-tube was really concerning for Dr. Grant. Apparently, he even yelled at the surgeon while we were away in MN. I had no clue that he took it so personally, but I've got to say, I'm grateful he did. I know it will insure better care for Daylon in the future. What he ultimately decided was that he would give Daylon one month to put on weight on his own (since he's starting to eat) and in the meantime, he'll consult all of the doctors on Daylon's team and come up with a plan that everyone feels comfortable with. with have 3 weeks left, so I hope we start to see some improvement soon.

   Okay, so one last area in Daylon's life has been a bit rough: Respiratory. Daylon got a cold just before being admitted into the hospital and he developed a cough. He still has the cough. We all got the cold and I will say, it was a bugger of a cold with a lingering cough, but it's gone to new heights with Daylon. It's to the point that he coughs the ENTIRE time he drinks from his bottle, all through the night he has a hard time coughing and breathing and now he's wheezing and coughing almost constantly. Seriously. For example, this morning he coughed (or had a series of coughs) every minute until noon. He can hardly catch his breath. We went to the BMT clinic yesterday and they were obviously concerned to see how his health has declined even in this last week. Daylon had a cough and a horrible wheeze from the time he was 3 weeks old. The problem was that he would cry or cough and then blister and then scar and stricken his airway. We decided that a trach was something we were going to pass on (we didn't think his skin could tolerate the incision and constant irritation) so when he had a growth spurt and his breathing eased up some, we were thrilled! I mean, before you could hear him breathe from across the room and he was always a little grayish. He's not that bad right now, but it's definitely becoming more and more of an issue. It could also be that he continues to lose weight despite eating again because of his body's increase in caloric needs due to the blistering airway. I'll let you know more as we learn more.

This is his Easter outfit. He still can't go to church, so he wore it to Saturdays Easter dinner at Grandma and Papa DLC's house with the Fraze family

  To add to the chaos, we've moved to Lake Elsinore! Adding in unpacking and setting up the house to our normal schedule has had us going non stop (hence the 2am bedtime this last month). Keira is still attending school in Corona, so it's been an additional pain in the tuccus (I think that's how you spell it) to get her up and ready bright and early so she can make the trip to the 91fwy on Daddy's way to work. I am so thankful that my mom has offered to take Keira to school on Brian's early days and pick her up when it gets out in the afternoon. I will say though, Keira is lovin' all this quality time with Daddy and Grandma and Papa.
  Oh! I almost forgot! My parents, Brian and I were asked to speak at a fireside/church event for our ward/congregation about the miracles we've seen in Daylon's life. Brian spoke about the disease and life before transplant, my mom spoke about the fundraiser and walk-a-thon last May, I talked about the events in Minnesota to current time and my dad spoke on "Prayer". It was such an honor to be able to share with others how our life has been touched and influenced by prayer and the hand of God. I feel so blessed to have experienced this life and to have seen miracle after miracle first hand. Through the trials we have had, we have grown closer to God and closer as a family. I am a better wife, mother, daughter and sister for it.

 I was interrupted when I wrote the above a couple of days ago and never posted it. I've decided just to add on from there. Anyway, we just found out today that Daylon will need to return to Minnesota as soon as the insurance approves it. The doctors up there are taking over Daylon's care just for a week or so (I think) to get things back on tract. He is having a g-tube put in again and the surgeon, GI and anesthesia have all been contacted. Minnesota is the best place for Daylon to have surgery for the following reasons: 1. so they can attempt to NOT intubate him, and 2. Dr. Saultzman has been the doctor to operate on Daylon repeatedly and has developed a stitch that last for a decent amount of time. For some reason, regardless of transplant, stitches still just slip right off Daylon while still in the OR. Dr. Tolar also wants Daylon's lungs and airways tested by their Pulmonary team to see where he's at with all that.
Oh, here's what Daylon looks like these days...

his skin is awesome but he looks like he belongs in some commercial about starving kids in Africa.

 I will update again when we have official dates. Thanks so much for your love and support. I'm sorry to make you all wait.

update

I just wanted to quickly let you all know that Daylon was able to leave the hospital. Yay! He's still not acting like himself but he has moments throughout the day where he'll take interest in a toy or maybe even smile. I'm hoping that we'll start to see an even bigger improvement in the coming days. He's FINALLY able to open his eyes again for a few moments at a time. Now that I can actually see it, his eyeball isn't in the best shape....well, it hasn't been for the last year, but it's really a mess right now. As far as feeding, he's back down again and I think he's lost more weight. Yesterday, I broke his kidney diet and gave him a few bites of a milkshake. I promised shakes to the kids when we came back from our hike and he just sat there in his chair staring at me with puppy dog eyes. I caved. I was so happy to have him eat calories, I figured the extra protein would be worth it.  I've gotta run. We've got Spring Break (Woo-hoo!) going on here with the kids. More later....

hospital update

Daylon is still in the hospital. Dr. Tolar has gotten involved in his care here at CHOC and they've run additional tests to check for infections in other areas to go along with the blood infection. So far, chest x ray= no pneumonia, echocardiogram= blood infection has not spread to his heart, no RSV, no MRSA, along with no other signs of half a dozen other problems. They drew blood from his arm again yesterday and that came back negative (so far) for bacteria so it looks like the blood infection may be clearing up, however, his Hickman is test positive faster than ever. His temp is up to 104.7 yesterday and after two fever reducers dropped to 102.5 an 1 1/2 hrs later. Meanwhile, I'm about to have a nervous breakdown from the stress of the infection and possibility of losing Daylon and the fear of being here and the continual harm that occurs to him. We got Tanya Kamka (a NICU nurse who took an interest in Daylon and Bella and is trying to raise EB awareness within the hospital) to come down and pass out the information she gathered on the disease. I think that the more people are reading over it, the more they understand that this disease isn't a "rash" as they've been calling it. Please pray for Daylon that he'll get better soon and we can go home. We miss the other kiddos too. His four siblings chaos always perks him up. :)

to answer someone's question from the last post: When the staff here has hurt him, do they apologize. Honestly, mostly they come up with reasons why they had to do what they did and don't apologize. However, there have been a few that do.

I wrote the above yesterday....

This is from last night...

Two nights ago a nurse tugged too hard on Daylon's line and pulled the cuff on his line from under his skin, through the skin. There was screaming by Daylon and yelling stern talking to by me. Well tonight, Daylon was sleeping and his IV alarm started beeping. His nurse came in to check it. I figured the syringe was empty and listening to Caleb talking away on the phone. When she started checking the line for air, I lifted his shirt to check for a kink in the line and saw that his Hickman had fallen out!!! Normally there would be some stitches to close the hole, but since his skin still can't hold a stitch, they passed on it. I held pressure for 20 minutes or so and then dressed it with sterile bandages. We'll see what the doctors say tomorrow.

TODAY...
Daylon woke up feeling better and for the first time since Saturday, played with toys. I even got to see tinsy crackes of his eyeball a couple times today. It was only for a half a second, but I was so happy! This morning, as Brian was gettting ready to leave the room for work, Daylon let out a playful yell and was smiling in his sleep. I was so excited to hear about that! TA-DUM! Improvement!


Talking to Daddy on the phone after breakfast


  More good news? Ok.
  Dr. Buchbinder is back (Hooray!!) and taking control of the whole lack of EB knowledge thing. He was really disappointed to hear what has gone on  (he was out of town) and is fixing it. He spoke with infectious disease and they decided to get Daylon on oral antibiotics and not risk another surgery putting a new line in. His wants to get Daylon out of the hospital ASAP and away from blood pressure cuffs, twice a day complete body scans (which are wrecking his foot), thermometers, well intended nurses, etc. As long as he can go 24 hours w/o a fever (last one was 3am last night) he can fly the coup tomorrow! Yay!!



When Daddy came by on his lunch break, Daylon was so happy he even did his little happy dance and gave a great big cuddly hug!

 He will be SO much happier at home! Heck, I'll be happier to be home! My neck and back are killing me from these stupid chair beds plus I miss my kids like crazy! I'm acting like a pregnant woman over here (no offense, pregnant moms =D ), crying everytime I talk to them...or pathetically...even when I hear stories about what they've done this week. I've got to get it together over here! LOL!
  You know that moment when you're with all your kids and your spouse you're just sitting around talking? I love that moment.

Ahhhhhhhh!

Is the title a bit dramatic? Yes. But that's how I feel. Daylon's week was going pretty good. He started to pull up on his hands and knees, with assistance he started standing for about a second and a half, he continued to eat well (although he's still not gaining weight) and by some miracle, he was actually retaining his vocabulary! Since all his head issues, he's not been able to say more than 3 words at any one time. Overall, he's learned (and relearned) about 20 different words (to the point that he says them often throughout at least one day) but short term memory isn't his strong point and they slip away. Right now he says: Mama, Mom, Dada, bye, ball, dog, up above (for twinkle, twinkle little star), out, go and more. It's obviously not a great list for a 20 month old but he's not just any 20 month old. This is GREAT for him.

 The only bummer about the week, was that last Sunday he started up with a clear runny nose and a cough. On Wednesday we went to his Kidney appt. where we continued to get the "green light" for no more dialysis and then to OPI (Outpatient Infusion Center) for his weekly BMT visit. The BMT appt was supposed to be a quick 15 minute appt. Just some labs drawn, Epigen injection into his Hickman and a visit with one of the BMT docs. OPI isn't used to seeing such large Hickman and after a ton (when I say ton, I mean a super ton) of drama we left 4 hours later. Daylon spent about 2 hours of that time with blood stagnant in his lines while we waited for pharmacy to bring up the right dose of Heparin and someone from Dialysis to come over to put the Heparin in his line since the regular nurses aren't allowed. On Thursday Daylon started running a low grade fever and vomiting which I didn't think was a huge deal since Keira and Caleb had already had a 48 hour bug which involved the same symptoms. We needed the flu to leave Daylon and not run it's course on anyone else by Friday because my Dad had planned a weekend trip to San Diego for all us and some of us could really use a vacation. By Friday night, he was acting better so we figured he was on the down side of the flu. I called the BMT doc that was on and asked if she thought we should come in and she said no. Every person at home with the exception of my dad had the runny nose and cough that Daylon first got on Sun. It's one of those lingering germs. Ugh. Although no one felt 100%, we weren't horrible (plus we were planning on hanging out in the room for a good portion of the time) so we went to San Diego.

Here's a picture of my mom in San Deigo. I wasn't able to grab a whole lot of pictures in the 12 hours we were there since we were sleeping 8 of those hours. :) The suite was a beauty though. Brian and I shared the loft with Daylon.

 Late Friday night, Daylon's fever was back and he was vomiting. Saturday morning the fever was gone and by late morning it was back (103 F) and so was the vomiting and diarrhea. Brian and I had to drop out of the vacation and drive back to take Daylon to CHOC.

Playing peek-a-boo with a wet rag to drop his fever before we left for CHOC

  This is where the "Ahhhhh!" comes into play.
  When we got to the ER Daylon's was fever-free and sitting up playing with toys. Isn't that always the way? The took several blood samples for cultures and labs and a urine sample then admitted him to be observed. We went upstairs to the cancer floor and we're met by the admitting crew. There was the pharmacist, 2 residents (kids fresh from medical school. CHOC is a learning hospital), the nurse and the nurses assistant. They asked for Daylon to lay on the bed to be measured. I'm turned, answering the pharmacists questions when out of the corner of my eye, I see the nurse tug Daylon's sock off and Brian and I both yelled "no!". We gently took his sock off and peeled back his bandages so they could see his feet. While we're doing that, that resident decided to look into Daylon's eyes. I turn to see her holding up his eyelid and pulling on the bottom of his eye. It was too late. The damage was done. Daylon got a corneal abrasion, a FAT blister under his eyelid and one on the bottom rim of his eye. His eye is so swollen his eye sticks out further than his brow bone. The underside of his eyelid is actually puffed up to the point that his eyelashes run across the middle of his eyelid. I'm sorry, to say it, but that really ticks me off.  He was screaming and I'm trying to explain to a flippant doctor that we really have to be careful with him when the nurse turns him onto his side by grabbing his back and side with rubber gloves. I try to take him from her but she shoos my hands away because they need to check for a rash or abuse. Thankfully it was over in a matter of seconds but he now has two fingerprint sized blisters on his back.

  One of the hardest things post-transplant is getting people to believe he's got a serious disease. Before, they would see him in his bandages, always bleeding from some place and people knew he was sick and fragile. Now, he's scabbing up which is great, but makes him look like he's getting over the chicken pox instead of EB. His skin looks pretty good (except his right foot) for the most part but we work hard to keep it that way. He still gets lathered up in Aquaphor and plays on memory foam and sheepskin rugs. His eyes, mouth and insides are almost what they were from before transplant, but no one gets that.
 Saturday night, Daylon cried and fussed most of the night from the pain (although I think part of it may have been his dislike for hospitals). I had fallen asleep in the chair and the nurse thought she should let me sleep and give Daylon his medicine herself (even though I asked her not to). I woke up to him screaming and her telling me that he's fine, she just scared him. When I turned on the light his lip was bloody from where she took off skin from being to rough with the syringe. We also found out the blood sample and urine sample from the ER came back contaminated so the night nurse had to do it again. Her sample came back contaminated as well. Her second sample actually made the cut. They had taken so much blood from him that he went from a 8.7 hemoglobin on Wed. to 6.2 on Sat. so he needed a blood transfusion.  
   Anyways, the first 24 hours, I felt like the nurses thought we were making up the disease but now that his skin and tissues are starting to brake down, they're slowing getting it. He has a bacteria infection in the red port of his Hickman. His cough is getting worse and worse and the more he coughs, the more his airways are blistering. They've started him up with breathing treatments again. I'm REALLY hoping to convince the doctor that Daylon is better off at home so we can leave today. I'll keep you posted.

  Thanks for the vent session! I'll try to have my next post be a happier!
  PS- Dr. just came in and said that an infection is growing in both ports of his Hickman--Staph Aureus. It's in his blood and now they need to run some tests to see if it's attaching his organs. Echocardiogram scheduled for later today and the rest tomorrow. I'll let you know what we find out. Oh! And, we have to stay several more days at the very least they said because it's a hard bacteria to kill. :(

Rough week and BIG NEWS!

   It's been a while since my last post. Sorry for the wait on a "Daylon Update".
  So the good news is Daylon has been meeting his nutritional goals everyday this last week!! Yay! His weight is up to 11.45kg, so it's slow but steady. :) We are so grateful to have this worry begin to peel away. He's still not interested in anything by spoon but we're all about baby steps!  We are also so grateful to have so many wonderful people praying for and thinking of Daylon everyday through this trial.
  
****************************************************************************

   
 I wrote the paragraph above a few days ago.
 
March 13th-

     Daylon continues to eat through his squeeze bottles and I'm happy to announce another break through!
     Thursday night we were celebrating a birthday at home and I decided to set some cake on Daylon highchair tray to buy some time to serve up the kids a dish while Daylon "colored" with the frosting on his tray. About two minutes later I turn around and see this....

    Holy smokes! We all just sat there laughing at this surprising little miracle. You know, it would be cake that finally break this stubborn guy. He is his mother's son. :) The cake was just the beginning. At almost every meal he will feed himself a bite or two of food that we on his tray. The trick is, he HAS TO do it himself or else he refuses. I think after the smoothies of avocado, butter and french vanilla flavored Suplena (kidney failure milk) he had lost all interest in eating food outside the realm of his formula. Whatever it was, I'm hoping that this is where he can finally lose the caption on the front page of his chart, "suffers from malnutrition".

~~~~~~~~~~~~~~~~

   
     Outside of eating, Daylon has had a really rough week and a half (resulting in a mama with no time to blog). The skin on his face and chest has been tearing like tissue paper. Although this may seem like a step back, the good news is that the sores are scabbing up fairly quickly. The bad news is that once they the scab, they itch and he scratches. Some of the sores are pretty deep and are a challenge to keep from becoming infected. A week ago Friday we went to clinic and Dr. Buchbinder and I talked for a while and decided that Daylon's hair needed to be cut off. The sores on the top of his head (on his scalp) are really deep and oozing quite a bit. The dampness from the puss (sorry, I think that's such a gross word) made his hair on the parameter of the open sores lay down and stick over the top of the sore. That area wasn't really able to heal up because of it and increased his risk of infections. The increasing number of bald spots helped to make the decision easier. :) I couldn't use an electric razor to shave his head so he's not completely bald but have such short hair certainly is helping the healing process.
   Daylon has been suffering with his eyes. Since the last post, just wants to be held and sung to ALL. DAY. LONG. With four other kids to tend to, it's been a real blessing to be staying with my parents on weeks like this week. Dialysis has been a full on nightmare at times. He's been too miserable to sit through 4 hours of sitting still. By the time we leave he has blood running into his eyes and fleshy patches on his forehead and chest. Two days ago he started opening his eyes more regularly and playing again. As long as we're close (like within a couple feet) he's okay to play for short periods of time throughout the day.
  One cool bit of fun we had earlier this week is that Erin, Daylon's nurse from Minnesota came down for a visit! It was SO fun to see her! She is such a sweetheart! She is absolutely amazing with not just Daylon but all the kids. The kids remembered her so they wasted no time chatting it up and playing around. We are so excited to see her again this Summer!

He's awake, he just couldn't open his eyes on the day she visited.

***************************************************
March 14-

HUGE NEWS!!!!!!!

Daylon is done with dialysis!!!
We went in today so he could be dialyzed and the doctor was there waiting. The three Nephrologists feel that Daylon is no needs dialysis to sustain life. We will visit the clinic weekly for labs and if after a couple of months his creatinine and BUN have no increased than his Hickmann line will be removed! I can't WAIT to get that thing off him! I am overjoyed right now! I can't even tell you what a huge blessing this is! It has been so hard to go through the transplant and watch his disease improve but have the affects of the chemo ruin his life. It felt like he was suffering so much just to trade one problem for several others. It just feels like this ginormous weight has been lifted off our shoulders. As the doctor talked my eyes filled with tears of happiness that this day has finally come. His BUN and Creatinine are still elevated but his kidneys will probably never perform at 100% after the months of trauma that they've been through. He will still have to stay on his special renal diet (low minerals, especially potassium, and protein) for now, but some of his limitations may be lifted after time. I know that he has been blessed to over come obstacle after obstacle because he has so many wonderful people praying for him. Please continue to pray that his labs will stay down and he remain off dialysis.
  We are thankful for all of your support! Go Daylon!

PS-
On Sat. my mother-in-law took our three girls and my niece Aleyna to a Disney Princess Tea Party in Norco. They had SUCH a blast! Check out these cuties!