Wednesday, May 4, 2011

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.


Cathy P. said...

Just know that though we may not hear from you for a while (and we pray things are not going badly as the cause of it) that you all continue to be in our prayers every night. This following quote is one that I came across and has helped me when things are getting tough. I'm not sure of the author:
"In the gospel of Jesus Christ you have help from both sides of the veil, and you must never forget that. When disappointment and discouragement strike—and they will—you remember and never forget that if our eyes could be opened we would see horses and chariots of fire as far as the eye can see riding at reckless speed to come to our protection..."
May you have your spirits quieted by His love and peace.
Cathy and mom in Utah

Lisa said...

Thinking of all of you lots. Thanks for the update, you've definitely had your hands full. Perhaps MN will turn on the warm weather when you arrive! Safe travels.

Kim M said...

I so appreciate the update but you owe us no apology. I think of the times you had so much time on your hands because you were confined to a room and had so much help with the medical team. I think it is great that you are home and don't have time to blog because you are caring for your family (and hopefully for yourself).

Please know that your prayer warriors are out here praying for Daylon and for you as you care for him. Also continuing to pray for the medical team surrounding him.

When you go to MN, you will be in the new hospital. Will be praying all goes well for you.

Praying in Waterford, MI
Kim M

Gilda said...

I as soon as I saw your post I had to click on it. I have been thinking about how Daylon has been doing. My heart goes out to you because your concern for Daylon is something I will be praying for. I am sorry to hear he has been declining health wise and just know even though we don't hear from you. You all and especially Daylon in our thoughts and prayers.

Anonymous said...

Our thoughts and prayers are with Baby Daylon and all of you. Hoping and praying that things will go good for Daylon in MN. Thinking of all of you always. Daylon is a miracle, a blessing and such a little fighter. You are such wonderful parents and such an inspiration. You have such wonderful parents and we love them and all of you dearly. It was so wionderful to see all of you on the Sat before Easter, we really enjoyed ourselves and really enjoyed the kids. They are so sweet, beautiful, precious and loving. Heavenly Father is watching over Baby Daylon and all of you at this time. Hang in there Baby Daylon! Keep Fighting you little Superman, you are truly loved. We are here if there is anything we can do for you and the kids. Take Care, God Bless, Keep the Faith. We Love all of you.

All Our Love;
Myrna & Dwight CA

jeanine said...

Oh you've been busy! We're getting ready to move... I don't know how you do it with everything else you have going on! I agree though... sometimes you just have to plow through it without thinking or you just break down (or at least I do!)

Anonymous said...

I am so sorry. You've certainly had a rough time, especially lately. I'll be sure to pray for Daylon. Hang in there!

Brenda is SO Blessed said...

I'm sorry you all have had such a tumultuous time. Good and bad all rolled into one--but seems like that is nearly always what God gives us. I will be saying some extra prayers for all of you.

Jess Edling said...

We love you, pray for you daily, and wish we were there to be of more hands on help.

Anonymous said...

Thinking and praying about/for your family!

Mom to Many said...


Cope anyway that you can. I am so sorry that things are rough.


Annalien said...

Thank you so much for the update! I can only imagine how hectic your life is. I am so sorry to hear that Daylon is still struggling with health issues. I pray that the insurance approve your trip and that the MN people sort things out for him. He is such a beautiful little man.

God bless and keep you all. Please know that we are praying for you.

TinaZCA said...

Praying for you, as always. Your faith is such an inspiration. Daylon knew what he was doing when he chose you for his parents. God Bless You. I hope we see you all at the reunion in July. Let me know if there is ever ANYTHING I can do!

Tina Zalanka

Bella's Blessings said...

Hi Jen!

thanks for the update; when I didn't hear back from you a couple of weeks ago, we got concerned, and while there are some serious issues on the table to say the least, we're relieved Daylon is still in the game fighting. I'm glad to hear about Dr. Grant yelling at the surgeon; Dr. Grant has a HUGE heart for EB kids and was a great advocate for Bella and EB when she was at CHOC. Play date just got a little trickier, but we are still here and would love to see you guys whenever it works for ya! Can you guys come to Bella's Bash on the 21st? We would just love to see you again no matter WHAT the occasion! Much love to you all! Tim


I hope Dylan gains some weight soon and that his cough can subside!!! I want your family to catch a break so you all can catch your breath!! It does seem like such a whirlwind!!! I pray for you guys all the time and I often think of you!!! I love Daylon and I hope he can be doing better soon :) so he can be back to smiling laughing and enjoying life :)

sharon kaye said...

You have been super busy. Moving is a big stress by itself. I hope they can get Daylon to start gaining weight. That has got to be frustrating and a big worry. I wish I could have been to the fireside. I am sure it was wonderful. Hang in there. We continue to pray for you.

Anonymous said...

Happy Mother's Day! You really deserve it, you are such a wonderful Mother. You are what Mother's are all about. You are so loving and caring. We Love You! Hope you have a very special day. You are in our thoughts and prayers.

All Our Love;
Myrna & Dwight CA

Anonymous said...

I appreciate the update too but I hope you know that even when you can't update we pray for Daylon. We pray for him every day as a family during dinner and I pray for him every morning. I am doubling my prayers for his health, his happiness, surgery, respiratory issues, eyes, oh God. God will continue to prove his power, I know He will. Employing the help of family and friend for prayer too.

Susan said...

I'm just getting to read this today. I wanted to tell you that our middle son Aaron (who is 2 1/2 right now) spent an entire year at 24 pounds. (15 months to 26 months old approx.) The reason? He has asthma and he was sick with colds/wheezing/pneumonia so much that could couldn't consume enough calories to gain any wight. He was using all his calories to fight off the nasties!

It made me think about Aaron as I was reading Daylon's latest. Perhaps if he can kick the cough once and for all he might get a chance to gain some weight!

I'm sorry to read he's still struggling, but we continue to pray and think about you all. I hope things improve very, very soon!

Joy said...

I some how missed this post, and I had no idea you moved to Lake Elsinore. We live here too! My son Jack is just one day younger than Daylon, and my daughter Elly loves your older kids! (We played with them at some food place one time when we were out to eat and your Mom was there with the kids...) Please don't hesitate to call me if you need anything! What school will Keira go to next year?