Tuesday, May 22, 2012


This morning Samuel and I are hanging out hoping to rest some. He had a rough afternoon and night last night. He had been doing well yesterday and I wanted to be able to take my girls to camp and get them settled. My sister, Melody said she would take care of him. I am so thankful for her and my mother, who are able and willing to care for Samuel. I can't leave him with any sitter and he needs someone by his side constantly, so he is a full time job! Also, all of his meds, treatments, quirks and handling him, etc. are tricky, so we need people who are capable and know him well. So we left.  6 moms, 13 girls, 2 boys and one baby caravaned to camp! It was fun to share this experience with friends and know that my girls will have plenty of buddies this week!  We made beds, took pictures, took more pictures, said goodbye several times and by then the kids were wondering if we would ever leave! We finally did, an hour and a half later! I didn't have a signal so I used a friends phone to call home and check on Samuel. Melody told me he had been very sick, throwing up and struggling and I was 2 hours away! It seems like every time I go out of town he gets worse, but I really wanted to be there for my girls,too. This is a struggle that I am dealing with right now. It is very difficult to be with him or near him and be there for my other children, too. I know my girls would have been fine riding with friends, but I wanted to check then in and help them get settled. That's what mamas do!  Tim did come home and help Melody. I was home by the time he needed his night time medicines, so he went to sleep soon after I was home. I held him and told him I was home and we snuggled a little before I put him on his bed.
He slept fine until 4 a.m. and then it was rough again. Tim and I both had to suction him, give his oxygen, medicine and he was still throwing up. His ferrell bag (holds his stomach contents) was full of air from his tummy and had 100cc of fluid, too.  We finally gave him a phenergin suppository and he used it as a laxative... Tim and I had to laugh at this point. We finally got him clean, dry and another suppository and he was calm... For about 30 min.. I ended up bringing him to bed with us so he could snuggle (her always enjoys that) and he calmed down some. He is junky in his lungs and tired today, but he is calm right now. A few people have asked a little more about mitochondrial disease and my friend posted this video last week. It is very informative if you want to understand a little better.

Faces of Mitochondrial Disease youtube.com

Thankful today that my girls are happy and having a wonderful time at camp! Also, thankful that He supplys all of our needs.

Philippians 4:19

”And my God shall supply every need of yours according to his riches in glory in Christ Jesus.”

1 comment:

Melly said...

Such fun pictures of camp! Glad the girls are having fun, but I am sure you're ready for them to come home! Glad Samuel has not gotten that sick the rest of this week. That was horrible. It's hard when his health varies from day to day, and sometimes hour to hour. I love him though and am so thankful that you care for him so well. And that you try to make the other kids create memories too. I love you sweet sister