We've put these alphabet letter magnets on our fireplace and we leave little messages for everyone. Emily left this one. (No one in our family truly loves HSP but it made us all smile and laugh as we joked together) She created this shortly after another aggressive wave hit Devin last weekend.
Our visit last Wednesday October 26th was great. His blood pressure and urine came back perfect. The rash was down to a few spots on his ankles and feet, with minor pain and little to no swelling. Our doctor said we could come back in two weeks unless things flared up (meaning more rash, more pain and more swelling).
Thursday, the 27th, I got a call about lunchtime from Devin's school. His tummy was hurting so bad he needed to come home. At this point I'm not worried. I'm actually slightly hopeful because tummy pain was how it started so possibly tummy pain was how it was ending. Unfortunately, I was wrong. Friday he had tummy pain again but made it through school and Saturday he woke up with lots of pain and a mild fever of 100.4. We kept him home from the primary program practice to get him rested because our whole family had parts and we all sang a song (whenever I have to choose) together for the primary program.
Thankfully Sunday morning he seemed better until right before church when he complained of his tummy hurting. I just figured it was nerves. Things went well during the program until after our part. Both Carlie and Devin had grumpy faces until the end of the program. Mostly I think it was caused because all the adrenaline had worn off --at least for Carlie. Devin, however, couldn't walk down the stairs. I pulled up his pant legs to find the rash way worse than before all over his legs and his knees and ankles were almost as badly swollen as the first day. :/
Poor Devin! He was in a lot of pain for pretty much the rest of the day. His swelling was better Monday so with medicine he made it through Halloween. Tuesday he was doing a bit better than Monday but because he has music class right after school I checked on him to see if he would need medicine to make it through the rest of the day...
When I saw him he immediately asked to go home and started tearing up. I was worried he was really hurting but when he finally spoke it was a different kind of pain he was experiencing. You see, he wore shorts that day and his rash was very noticeable. The kids in his class kept calling them chicken pox and Devin told them it wasn't but they kept teasing him. :( If you know much about Devin it's that he is very sensitive to things like that and being different from everyone else. (We are working with him on that but he still gets tender). Needless to say I was heart broken for him. Here was this wonderful boy who hardly complains about all the pain he's in. He was having to take medicine to even be able to get to school and then he got teased.
I knew it was because his classmates didn't understand or know. His teachers didn't even really know. The class was gathered to practice their dance for the Spanish dance festival and I asked his teachers if I could talk to the class briefly. So with Devin at my side I told very simply about HSP and the pain Devin is dealing with and asked them for kindness. Of course they were sweet and willing. (I think everyone in his class really likes him so they were more than caring about it). I followed up with emails to his teachers with a more detailed explanation.
It's slightly difficult because one minute he's fine and the next his ankles are swollen and he can't walk or his hands will hurt so bad it will wake him up in the night but some days he seems almost normal. I'm sure that is confusing to a lot of people.
Since then he's been better and better. The rash is lessening and it's usually one swollen thing a day. Just now he came to me because his feet are puffy and swollen but he has been fine all day. (The pictures never do it justice)
