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.