August 2009

This week has been the festival of doctor’s appointments for Sophie and at long last some good news.

The early part of the week started with Sophie’s yearly CT scan.  She’s had probably close of 100 of these over the course of her life but as she gets older, it definitely is getting harder.  She was just beside herself when we told her she had to go to the doctor – screaming at Aaron the whole way to my office where he was to drop her off so I could take her.  Once we traded her out in my parking lot though for the ride up to Packard with me- she calmed down… until she figured out where we were going.   She’s so on to us now.  The moment she saw “Welch Rd” where most of doctors are located- she started to scream again.  And off we went for her annual CT.

She was clearly familiar with the section of the hospital (and not very happy with me) but all that changed when we walked in and the technician told her that she was famous and Maria (another technician who has known her for 4 years and been through it all with us) had left her a gift of a big stuffed dog with a sweet note.   I was so touched and it made the study 100% easier.  The technician told me that Marie had said to follow my lead and she was all for it.  Why I thought it was a good idea to where a fitted dress on a day when I needed to jump on the CT table – I’ll never know.   Oh well.  There are worse things.

So we wrapped up Sophie and in blanket, I laid down on her and held her chin- and off we went in and out of the tube. She was definitely scared but the technicians kept talking to her through the microphone and told her to close her eyes and think of her favorite people.  Sophie said she’d think about Grand pa Bobby and Mamaw and before we knew it – the scan was over.

The following day we were back up at Packard for her two-week check in with rheumatology and then 2 hours later- neurosurgery.  The last two weeks of managing her arthritis has been difficult with all the meds (especially the biweekly shots) but at long last – she seems to be feeling more herself.   Her exam with rheumatology also showed that her inflammation is getting under control and now we will start to taper her off the prednisone.  Good thing too- she continues to eat us out of house and home and has put on 3lbs in 2 weeks.  Not a lot for most people but for a 30lb child- that is quite a gain.  We now are going a month out between appointments.  We’ll continue to decrease the prednisone but will continue the other 3 drugs – including the shots.   I know it kills Aaron and give them to her (and me to hold her down) but she needs it and we just have to deal.

Between appointments I took her over to Stanford mall for a mother/daughter lunch at McDonald’s and then back to school shoe shopping. Stanford is an outdoor mall with lots of very nice stores and Sophie LOVED it.  Lots of screaming “Cute handbag, nice outfit “ etc as she ran by the various stores and looked in the windows. She was pretty wild in the shoe store but then again, what girl doesn’t love shoes?  The place we went was a shoe store was a place my parents took my sisters and I every year for back to school shoes and it was quite special to learn from the man who helped us that he was the son of the man who used to fit my sisters and I and that his father was still around.  Funny how things go full circle.

Back to Stanford we went for her neurosurgery check in.  Ah the amazing doctor Edwards never ceases to demonstrate how much he cares.  He was quite disappointed to read about her recent diagnosis and told me all he could think was “ can she never get a break?”  He was THRILLED though to see alert and happy and even more THRILLED to tell us her head CT showed her shunt/ventricles are completely unchanged from last year.  GREAT NEWS.  I know she’s only 4 but she’s certainly aware. She asked him all about the pictures he took of her head and made a point of thanking him for fixing her “special head” all without me saying a word.   Once again, I was reminded how fortunate we are to have so many people in our children’s lives who care.

Trent continues to become more independent.  He is all boy.  He loves his skateboard, all his balls and has become quite a baseball player.  Although our backyard is small, our driveway inside the gate it quite long and he’s figured out how to make different part sections into bases.  He’s also become quite a fan of kicking the soccer ball with me and it’s become my special thing I do with him several times a week.

This week with Sophie showed me how important it is for Aaron and I to have 1:1 time with each of them and next week I plan to take Trent to lunch and shoe shopping.  I know shopping won’t thrill him as much as Sophie, but I still think he’ll appreciate “mommy/big boy time” and will be a great opportunity for us to enjoy some special time together.

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…