Jaylon update

Hello all,

Jaylon started experiencing significant abdominal pain over the past few days. At first it was intermittent, but last night he started losing his appetite and just wanted to curl up in my lap all night. He is also complaining of inner ear pain. The good news is that his rash is continuing to subside, and might be completely cleared within the next few days if no new spots show up.

He has an appointment at Children's Mercy today, so Brooke will take him up and have the docs address these concerns.

Please pray for his spirits to stay lifted, as I know he is getting exhaused with all this. Please pray that whatever is causing the abdominal and ear pain will be healed.

Thank you so much.

Jaylon update

Hey everyone,

I'm home sick today so got to see Jaylon before he went to school. He is looking better every day...only faint traces of the rash on his face. The rest of the rash throughout his body is clearing nicely, with the exception of a few new rash areas around his knees which are making it still uncomfortable for him to walk. He has been going to school every day since middle of last week.

At the last doc visit, they detected some protein in his urine, which suggests that his kidneys are being affected by his condition. Please pray for a complete recovery for Jaylon. If his kidneys don't clear up, we could be looking at some very scary possibilities. It is very rare that HSP causes significant kidney issues, so we are not alarmed. However, the docs don't want to take any chances on it...so prescribed a steroid (Prednisone) for him. This is making him very emotional and sometime very aggressive.

The other night, Jaylon was telling us a story and we started smiling at what he was saying. He thought we were laughing AT him, so got upset and threatened to turn off the TV without us being able to record the program we were watching. That made us laugh, which upset him even more. So he stormed upstairs and burst into tears, crying for a good ten minutes. This might be typical behavior of some kids, but it is not normal for JJ. Being around him, it's obvious how the meds are affecting his emotions. Sometimes I think he gets upset without even knowing why.

I explained the way his body is being impacted by the meds after his first big outburst, and I think that helped him a little.

We are eternally grateful for the level of recovery JJ has experienced so far. We thank God every day for our family and for all of you.

Much love,

Adam

JJ update

Hi everyone,

I took a vacation day and accompanied Jaylon to his first day back at school yesterday. He has been feeling better and dealing with less joint pain, so we decided to give it a shot. Ironically, he woke up in the morning with more rash spots on his legs and arms and some tenderness in his knees. He was determined to go, however, as we had talked about it the day before.

We were a few minutes late, so walked into the classroom to find the rest of the students gathered in a circle. One of them saw us and yelled, "JJ!". Then they all broke into cheering and a few ran over to give him a hug. It made him feel so good, he had to leap into the center of the kid circle and strike a super-hero pose. It was a heart-warming moment for a dad.

He made it through the half-day just fine, and was a very happy little boy. By evening, he was thoroughly exhausted and the new rash areas were bothering him quite a bit. He still has a pretty significant ear infection and gets slammed with waves of joint pain a few times a day.

Please pray for his recovery and for God to provide us with the mental and physical resources we need to get through this. We are greatly hopeful that he will fully recover in the near future.

Much love,

Adam