Sophie has turned into the very hungry Caterpillar…

And it’s a whole new world.

It’s official our Sophie has Polyarticular rheumatoid arthritis about 30% of kids who come down with RA have this type.   It’s an autoimmune disease and while there is no cure, it can be treated. We’re about month into a variety of drugs to try and get it under control.  Unfortunately while they do help, each comes with side effects.  The prednisone has got to be the worst.  She is hungry 24×7 and I mean NON-Stop.  She reminds us of that Children’s Book ” The Very Hungry Caterpillar”.  Every other word out of her mouth is about food.   It’s the first thing she talks about in the morning and the last thing she mentions at night.   She’s even been waking up at 1am-3am and coming to ask me to get her a “snack”.  Thankfully she’s eating most healthy stuff but you’d think that we had a house full of teenage boys by the way she’s going through bread, fruit, cereal, … well everything.

Our kitchen counter now looks like a pharmacy.  She gets 4 syringes of meds in the morning and evening plus 2 ground up pills.  Tonight we will also start her on shots that she will get 2x a week.  Poor Aaron, he’s just dreading giving them to her (since he was the one who got trained at it while I entertained her during our doctors visit).  He’s been beyond amazing though all this – making sure to track all her meds and diligent about making sure we stay completely on top of it all.

We need the rheumatology folks every two weeks.  The team at Packard is seeing us and the entire team is great.   On our fist the doc who saw Sophie came in sporting stickers, bubbles and bling (she is a girl) to allow he and I to talk.   He bent right down to her level and quickly connected to her.  We’ve been told this will be a long-term relationship with another specialty.  Thankfully the entire team seems great so all things considered – we’re pretty lucky.

This is not the summer we planned but we’re still trying to make the best of it.  All this has been pretty tough on Trent.  He understands she doesn’t feel well and tries for the most part to not push her, but he does get frustrated when they’re at the park and she cries or begs to go home. The neighborhood kids though have been great about playing with him and keeping him busy when his sister is not up to being his playmate.

I never though Aaron and I would be back in the middle of another big medical thing.  Suddenly we’re back in managing multiple drugs, doctors appointments, wishing we’d paid attention during school when metrics were taught and expanding our relationship with our pharmacist.

While we always knew that we’d have long-term issues with Sophie’s hydrocephalus and both of their kidney issues the RA seems so much more overwhelming.   I know we can do it- we just wish for once our little Sophie would just get a break… Just once…