Where do I start? Sometimes I update by child. I think I’ll try to go chronologically this time.
Three days after I posted, Joyanna got the stomach bug. The day after, I got the stomach bug. Thankfully, I had already learned its particulars with Ethan. So, Joyanna and I didn’t have too much trouble. It was just a challenge to keep Joy hydrated. She started her new medicine the night after she got the stomach bug. We were then going through the transition with her, several hard days for her.
Now we were hoping Philip didn’t get it. We made it several days and then it was apparent on Thursday, May 26 that Philip had caught the bug. It was actually a little hard to tell if he had it because vomiting is pretty common with him. There was no fever, so our only for sure sign was a change in his bowel movements. It was very easy to keep Philip hydrated. We cut way back on his formula at that point to allow his body time to overcome the virus. On Friday, we received an unexpected gift for a few days. It was obvious in the afternoon, that Philip had gone into ketosis…plus, his unusual history of feeling better when he has a virus. He began to smile, giggle, and vocalize. He even said, “Hi” a few times in those couple of days. We took so many pictures. We tried to get giggle fits on video but he seemed to know when we pressed record. We started his formula back on Saturday since the stomach bug was only a 24 hour. It was with reluctance though. I wish we could keep that state for him but he has to have calories. Even though we started him on formula, he remained happy. Day by day, you could see the laughs and vocals decreasing but his smiles remained for a little over a week.
By the time that was concluded, my husband was involved in a summer refresher course for pastors at the college. He was responsible for registration, activities, transportation, and the dorms along with a few other men on staff. It was a very busy three days where he was gone all day. It went well for us each day so I am thankful.
Two days after that, Ben left with some men from the church for a hiking trip in Zion National Park. He was gone until June 10. We had a good time even though he was gone. Our “Grandma Lindas” offered to watch the boys while Joyanna and I went out for a girls night. She wanted pizza. We ate at a pizza restaurant and then went to the library and read as many books as we could before she was getting tired. Then, since that day was National Chocolate Ice Cream Day, we celebrated by having a chocolate ice cream cone on the way home. It was fun! She really enjoyed it and of course, so did I. Our friends, the Switzers, came over for a few hours the next morning and then my brother and his family surprised us by coming in from Wednesday until Saturday. We had fun just hanging out, playing some games and catching up. Ben returned while they were here.
A few days after Philip had gotten over the stomach bug, I noticed we were having new trouble with feedings. He couldn’t seem to hold any volume over 200 ml. He would begin vomiting during a feeding if it went over that. I had to reschedule his feeding times to do less volume more often. I contacted his doctor’s office and his doctor decided he should start receiving the majority of his formula and water via a pump overnight. So, the Friday when my husband returned (last Friday, the 10th), we started him on continuous nighttime feeds. He receives 3 very small feeds during the day in the same manner we have been feeding him but receives everything else overnight. It has worked really well so far. We have eliminated most vomiting and leaking through diapers in the day time. He is not in danger of vomiting his medicines which makes a big difference. We just had a check-up with his doctor yesterday and now are trying to resolve possibly some gastritis (heartburn) that could’ve come back after the stomach bug. He is now on Omeprazole again. His tonic seizures have continued even when raising a current medication so we started a new seizure medication for him yesterday while at the same time going off a current medication that he has been on for over 3 years. We think it may not be as effective for him anymore. He will be going through plenty of transition over the next month so please pray for him-better seizure control, no heartburn or irritated esophagus. Still continue to pray for the congestion issues. They likely won’t be resolved completely now, since it’s not necessarily high allergy season and he is still suffering with lots of congestion. We are praying the omeprazole will help him be able to swallow easier and thus make handling it better.
We also saw that the first dose of Joyanna’s new medicine was not giving her as much control as we liked. We decided to raise the dose this Monday. She has responded well to the increase. We hope that will give her some good days for a while.
I think that brings you up to date.
Thankfully, my heel pain has gone away. I’m thinking I just pulled the muscle in some way and hopefully it won’t happen again. Thanks for praying for me.
We have a few slow days in front of us. We’re hoping to enjoy them.
The Lord’s strength and grace has been evident through this time. I know you didn’t have specifics but I know many of you pray for us daily anyway. I am so thankful that God knows exactly how to answer your prayers in specifics for us. I’m not planning on waiting a month again but I don’t know that I planned it this time either. Billy, I’m surprised you didn’t prompt us this time. You let Allison (your sister) do it for you, huh? Thanks, Al! Here’s a loooooooong post for you.
I almost forgot…We have a final planning meeting for the bathroom remodel next week on Tuesday, June 21. After that, we should know more about a timeline. That means I may be able to post next week with information. Just think, only next week. It will be a miracle!