Wednesday, May 6, 2015

Our latest miracle

A couple of days before Dayson had clinic he was coughing so bad he would vomit, almost every day. So at clinic when his lung function was only at 53% they started him on an antibiotic. After a week of not really eating and not feeling good, we took him in last Wednesday for another chest X-ray and they found bronchitis, so they stopped the current antibiotic and started him on a new one. Thursday night he had a fever, was in pain and it was killing me, mainly because I had hope he would start getting better with the new antibiotic and the fact that it had been about 2 weeks of him not feeling good, I had hit my breaking point. Friday and Saturday he continued with either throwing up or fever and so on Sunday morning we asked our families to fast with us for Dayson. Also on Sunday morning he refused to eat breakfast because he still didn't feel good. I had been noticing all week how skinny he had gotten and it was killing me to see him lose so much weight. I try really hard to not cry in front of Dayson and for the most part I succeed, but I was really struggling through most of Sacrament Meeting to hold it together because I was just done seeing him not feel good, and I knew if his body couldn't fight this off, he would be right back in the hospital. My heart was just aching for him. Then after Sacrament meeting I was talking to Dayson and his Uncle JT came up to him to talk to him and just seeing the interaction and knowing that JT was fasting for him, I was overcome with emotions of gratitude for our family and friends and all those who love Dayson and just wanted so badly to say "he's doing great!" But knowing that he wasn't, was just hard that morning. So after Dayson went to class and a friend asked me how Dayson was doing, I couldn't hold it in and just cried, and found Chet and cried to him and I couldn't stop crying. I was so worried about him. So then I took Paisley from Chet and went into the Mothers Lounge and just rocked her to sleep. It was a tender mercy. I love rocking that sweet baby to sleep. Dayson didn't last through all of church, so I brought him home early and tried to get him to eat something because he needed to take his antibiotic. He was able to have some smoothie and a couple of crackers. We had a pretty lazy Sunday afternoon and then we went on a family bike ride. On our way home Dayson was cold and then he did a treatment right when we got home and fell asleep doing his treatment. When he woke up we noticed he had a fever again but he was able to eat some corn with his antibiotic but he was very nauseas, so he just went to bed. After he went to bed Chet and I agreed that if he didn't feel good again the next day, we would have to take him in, and we knew that meant a hospital stay. Monday morning came and we didn't wake him up like we normally have to, because I knew he needed sleep. When he woke up just before 8 he said he didn't feel good, but he did his treatment without any problems. But he refused to eat because he said his stomach hurt, so Chet then gave him a blessing. Chet then went to work and I called the nurse about Dayson. Chet called a different nurse on his way to work and we both had to leave messages. Then around 10:00 Dayson asked for a smoothie and he was able to drink quite a bit and take his antibiotic without any problems. Then around 12:30 I asked him if he felt up to eating and he said he felt like Denny's. So we loaded into the car and went to Denny's. He and Layla both ate a huge lunch of pancakes and bacon and sausage. I was pretty shocked because he hadn't eaten that well in a couple of weeks. I was so happy and relieved. Shortly after lunch the nurse called me back and said that she had gotten a hold of Dr. Daines and that she wanted Dayson to be seen that day, I told the nurse about how well he ate and that he hadn't had a fever all day and that I felt like he was finally turning the corner and that I wanted to wait to see how the rest of the day went. She didn't seem to like that idea and made me promise to bring him in if anything changed. Monday night he had a great dinner and then Tuesday morning he didn't feel very good again, and was nauseous. I was devastated. I thought for sure that he had turned a corner. But he didn't have a fever so we sent him to school. Chet stopped by the school an hour later to drop off his lunch and to see how he was doing and the first thing he said to Chet was "I don't want to go back to the hospital." Chet got out of him that his chest and shoulder hurt a little bit, so Chet told him to just take it easy and hopefully as the day progressed he would start feeling better like he had the day before. So Dayson decided to stay at school and Chet have him his lunch, hopeful that he would feel like eating by the time lunch came. I was worrying so much about him I had to text his amazing teacher (who happens to be Chet's cousin) to see how he was doing and to see if he had eaten any of his lunch. This was the text I got back : 
He  ate all of his lunch and was still hungry so I gave him a bag of chips. He's doing well
I could not believe it! I was so happy and relieved all over again! On Monday, I truly felt like our prayers and fasting had been answered and knew it was a miracle. But then Tuesday morning I was a basket case again because it felt like Monday was just a false hope or something. But then reading that text I was a believer again! Miracles really do happen. He had to take a nap after school yesterday but he had a great dinner last night and then he had a great breakfast this morning and has eaten well all day today. I'm so grateful. So happy that he is not in the hospital right now. So grateful that we have amazing friends and family that continue to pray for Dayson. So grateful that Heavenly Father answered our prayers. Last night it was Daysons turn to pray for our family prayer and he thanked Heavenly Father for making him feel better. We've gotten to witness a lot of miracles in our lives and I'm so grateful for this latest one.

Friday, April 10, 2015

Cystic Fibrosis Walk

Dayson was able to leave the hospital on Saturday March 28th. So he was in the hole for 17 days this time, the longest stay so far. His cousins were down for the weekend, so after he got out of the hospital Saturday afternoon, we stayed in a hotel so Dayson could spend time with his cousins. The next day was the Cystic Fibrosis Walk at the University of Arizona. Chet and Dayson were asked by the Cystic Fibrosis Foundation to say a few words at the walk. Sunday morning I had to wake Dayson up so he could get ready for the walk and he just started crying because he still didn't feel good. He finally got dressed and we made it to the walk, but when we got there and he saw how many people were there, he started crying again because he did not want to go on stage in front of all of those people. Dayson has always been sensitive to loud noises, shy around people he doesn't know and doesn't like trying new things. When he was little he hated fireworks and any other loud noises. The first time he went to the UofA football game he just cried and plugged his ears when the crowd erupted in cheers. Anyways, at the walk Chet and I were trying to get him to just go on stage with Chet, because at that point we knew he wouldn't say anything, but I really wanted him to at least go on stage. He was pretty set that he was not going on stage and it was almost time for Chet to go on and so Chet went and stood at the base of the stairs. Then a woman came up to Dayson with her dog and told Dayson that her dog Boomer was really nervous to go on stage and would he go on stage with her dog? It completely worked and Dayson told her he would go on stage with Boomer, so just as Chet was beginning to talk, Dayson walked on stage to join him. 

Chet did an amazing job talking about how Cystic Fibrosis affects our family and Dayson and he said his goal is not to just "add more tomorrow's" but "add better tomorrow's" by helping the Cystic Fibrosis Foundation find a cure and find a way to make Dayson's daily life easier and better. After Chet spoke they introduced the woman with the dog, Representative Martha McSally. She is an amazing woman and was so sweet to help us get Dayson on stage. 

After Represenative McSally spoke, they had Dr. Cori Daines speak. She is one of Daysons doctors and she is one of my angels on earth. We are so grateful for her and the time she takes explaining things to us. We are grateful for his other doctors too, we truly are so blessed with amazing doctors and love them all. 

We had some amazing friends and family at the walk to support us and it was so nice to be out there with everyone, as we were all walking for the same goal of finding a cure. 

The next day he went to school for a few hours and then I picked him up early and took him back to the hospital for a follow up chest X-ray. He fell asleep in the car on the way to the hospital. The next few days he had a nap every day after school because he was still recovering and trying to get back into his normal routine. Tuesday the 31st was his 9th birthday and the best present was not being in the hospital for his birthday. 

He came home early from school and had a nap but then we went to Sierra Vista and watched the movie Home and ate dinner at his favorite restaurant Chili's. He also got a new bike for his birthday that he and Chet had picked out together while he was in the hospital. 

Dayson has gotten progressively better every day since we left the hospital. He has gotten his appetite back and his energy level is back to normal. He still has a pretty bad cough, but that is expected with the amount of fluid that was in his lungs. He goes back to clinic on Monday the 20th for a follow up and to test his lung function. I can not express enough thanks to our family and friends who continue to support us through this lifetime journey with this battle against cystic fibrosis. I'm so grateful for my Savior and all of the many, many times He has comforted me though the heartache of watching Dayson suffer. Dayson is an incredibly strong kid who has a lot to deal with at such a young age and yet he is one of the sweetest kids you'll ever meet. I'm so grateful for him and his example. I'm grateful for his older sister who is so patient, understanding and helpful. I'm grateful for his 2 little sisters that bring so much joy and laughter into our home. And of course I couldn't survive without my loving husband who is the rock of our family and keeps everything together. I love you Chet Judd! Thank you for all that you do for our family and thank you for being so patient with me and thank you for helping me get back up when I break down and get stuck in the fear and can't see the big picture - you always see the big picture and I'm so grateful for that!

Monday, March 23, 2015

In the hole again - Dayson's 4th Hospital Stay

On Wednesday March 11th Dayson was admitted into the hospital because he was having a lot of unexplained pain and fevers. Paisley also turned 9 months old that day and got to visit him on his first day in "the hole".
We were hoping that it would be a short stay but the next day when they did PFT's his lung function was at 41%. We were all shocked by that. He continued to have pain and fevers for the next few days and a very little appetite, but he also had a few visitors those first few days.
He built quite a few Legos those first few days as well.
Monday they ordered a PICC line because we knew it wouldn't be a short stay. They placed the PICC line on Tuesday and then on Wednesday when they did PFT's it was up to 54%. Still not great, but a slight improvement. His sisters came for a visit on Wednesday as well.
Thursday we found out that he tested positive for valley fever and the doctor mentioned that it could turn into a 3 week stay. Dayson was pretty bummed about that and had a sad day. Friday we found out that he still had parvovirus and that was probably a lot of the problem as well. Also on Friday his cousins came to visit and he got to play Wii with his cousin Max. Then our good friend Ted came to lift his spirits by bringing rockets for him to launch on his walk outside.
Max got to join in on the fun as well.
He had so much fun outside with the rockets and it really did boost his spirits. 

But Saturday was a different story. He had chest pain that would not let up and he was miserable most of the day. He also threw up twice and slept most of the day. On Sunday they did an ultrasound of the heart because of the chest pain. They came to his room and he didn't have to leave his bed for it! 
The ultrasound showed some inflammation around the heart and in part of his lung on the left side. They started Motrin to help with the inflammation and they'll continue to monitor that. 

He got to go on another walk outside on Sunday as well.
Last night he was crying at 2:00 am and his crying woke me up. I asked him what was wrong and he didn't say anything, so I asked him what I could do to help him and he said nothing. I asked him again what was wrong and he finally said through his tears, "I want to go home." That about broke my heart in two. I ache for him. I wish I could take his pain and suffering away from him. This morning he had a shower and then took a nap because his stomach was hurting him.
Then they came in and did a chest X-ray right in his own bed.
After his chest X-ray he had a pretty good breakfast and then he rode the exercise bike that's in his room.
Then he had a treatment and after his treatment we got to go on a walk outside. 
After his walk he had a pretty good lunch and then we played Mario Brothers on the Wii. We had a great day today! I'm so thankful for good days!! I'm grateful for the doctors and nurses that take such good care of him. I'm grateful for our nephew, Seth that takes care of Layla and Paisley while I'm at the hospital and Chet is at work. I am so grateful that Chet is able to continue to be our rock during this time. It's really, really hard on me when Dayson is In the hospital and I can be an emotional wreck at times. But Chet is so patient and strong and just takes care of everything. I am so grateful for him. We are hopeful that Dayson will be able to come home on Friday. It will be so nice when our family is under one roof again. I'm so grateful for all of your thoughts, kind words and prayers. We really appreciate all of the love and support we are shown during these hosptial stays.

Friday, March 6, 2015

Team Dayson

This week at Pomerene School the kids learned about Cystic Fibrosis and earned money to help find a cure for Dayson and all the other people that are battling this disease. I'm so grateful for Dayson's principal, Shad Housley, who thought of having this fundraiser for Dayson. There were so many people that helped make this week possible and it gave me another reason to be so grateful for our little community that we live in. 

All the kids were given a water bottle and we asked them to fill it with silver coins.

On Monday the kids learned about CF from representatives of the Cystic Fibrosis Foundation and a couple of nurses from UMC.

Chet and Layla wanted to kick things off and were the first ones to add money to the water jug.

Dayson also demonstrated using his vest for everyone, he was a little embarrassed but also thought it was pretty cool.

On Tuesday there were quite a few students that brought in their water bottles filled with silver coins already and they were off to a great start!

Also on Tuesday the students got to make a para cord bracelet that will remind them of CF when they wear it.

Wednesday Dayson and Bree got to dump their money in that they raised from going around Pomerene and Benson on Tuesday and asking family and friends for loose change.

Wednesday and Thursday they did some more learning in the classroom about CF and then today they learned about the importance of hand washing and the older kids even got to make their own hand sanitizer.

It was overwhelming to see how many kids were so eager to raise and donate money. Dayson got to empty another water bottle full of silver coins thanks to our amazing employees. The school surpassed their goal of filling a 5 gallon water jug with silver coins in only 5 days! 

Chet and Dayson took a few minutes to thank everyone for their support and to thank Mr. Housley for making this week happen. Dayson is pretty shy, so I was so proud of him for having the courage to get up in front of his whole school and talk. In talking to Dayson about this week, it meant so much to him that everyone tried so hard to earn money for a cause that means everything to him.

Our amazing friend Tyler Burkett made a slide show for the kids to watch and he also made this video of Dayson that we showed to the school today -please take the time to watch it. 

Then we all went outside to do a walk/run for Team Dayson.  

Everyone got a cup of Blue Bell ice cream after the walk.

What an amazing week! We are so grateful for everyone that put time and effort into making this week happen. It was such a great week and everything turned out better than I could have imagined. Thank you to Terra Hatch, Andrea Merrill, and Shelly Crockett for all the time they took out of their lives this week to make this fundraiser so successful. Thank you to Rachel Manzo for taking all of these amazing pictures. Thank you to Kristy Judd for teaching everyone to do the bracelets. Thank you to Randy Barney for making all the jigs for the bracelet making. Thank you to Tyler Burkett for doing the slide show and the video of Dayson. Thank you to Blue Bell Ice Cream for giving us the ice cream at a very low cost. Thank you to my cousin Bud Noble at White Raven for donating the shirts and for giving us the water bottles and banner at a very low cost. Thank you to the University Medical Center for sending the nurses to educate our students.  I'm also so grateful for the Cystic Fibrosis Foundation and all the help and support that they gave us this week and weeks prior as we prepared for this fundraiser. Thank you to the staff and teachers at Pomerene School especially Mr. Shad Housley for not only initiating this but for also putting in as much time and effort into making this a successful week. Thank you to all the students for filling the water bottles with either their own money or from money from friends and family. Thank you to everyone that gave silver coins to the students, and thank you to those that went online and donated. I'm sorry if I left anyone out, but just know how grateful we are for everyone pitching in this week. We feel the love and support that everyone has for this sweet boy. The highlights of the week for me that brought tears to my eyes were: Rachel Manzo posted what her son Chase, who is in 1st grade, said "Mom, I don't care about a prize, I just want them to find a cure for Dayson and all the kids." And Chet just told me that Dayson's cousin Jackson, who is 9 years old, just donated $50 of his own money. These kids are the sweetest and we all can learn a lot from them!

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