Minnesota update!

I got the call last night at 6pm from Greater Newport Physicians and the woman said that she wanted to let us know before the weekend that Daylon was (finally!) approved!! We are soooo glad! Daylon's down to 9kg and his respiratory issues are becoming well, more of an issue. We owe a HUGE thanks to the team in Minnesota, especially Beth and to Dr. Tolar and Dr. Buchbinder (BMT dr at CHOC) for writing letters and making calls to convince the insurance company to approve the surgery in Minnesota. I'll try to post more this weekend including some pictures. Well, it's off to Bella's Bash! Have a great weekend!

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.