We’ve been “on the road” with Grace a lot lately. Figuratively…in that she’s had a multitude of evaluations, meetings, and doctors appointments – Literally…we were in St. Paul a few weeks ago for eye doctor and epileptologist appointments. She puts her feet up and goes along for the ride.
In short – Grace is a moving target – moving forward for the most part. Thus the need for all these meetings, evaluations, and doctors appointments. The not moving forward part is the stall we’ve encountered in controlling her seizures. A slight med change was possible, a new med we won’t know enough about for six months is a possibility as is what the epileptologist called a “major overhaul”. I dug in my heels with the major overhaul talk… there’s no little adjustments with Grace..so when he was using the term major…my brain immediately went to terms like gigantic and fear-inspiring…. When is the right time for a major overhaul? It can’t be yet…..because she’s moving forward in so many ways.
I anticipate we’ll make her angry once she has to wear the knee braces we are planning….. but making her understand that just because she can hyperextend her knees doesn’t mean she should proves difficult. They are telling us if we don’t stop it now, she’ll have arthritis at 18. Grace at 18 I don’t even know how to imagine, but preventing future pain – that’s easy. We are looking at a wheelchair for her for long distances – this would allow her to continue to be exposed to activities not especially mobility friendly, without being doubled over in a stroller she’s getting too big for. She’s showing interest in eating real food…not just being ok with being tube fed. She’s got kids at school she’s playing with. She continues to love ballet – to walk towards the studio before we can get her outside clothes off of her. We’re going to get communication devices that can be used at home. We had to buy her a whole new wardrobe for this winter because she’s outgrown what we had…this from the girl who didn’t even make it on the growth chart for quite awhile. You should see her on the horse too… she just makes it look soooo easy and effortless when you know what hard work it really is. She is playing with more advanced toys than she had been…..although I expect the toy phone she’s loved the last few years will remain a Grace favorite for some time to come.
This week we still have more to learn about school and Grace’s transition to kindergarten – and we’ll be working to develop a plan to help her try more eating. New glasses are on the way. Two ballet performances are coming up. The introduction of her brother into the family also nears. I think a lot about how her journey will affect him, and how his journey will affect hers.
Throughout it all Grace remains Grace – a force in our lives – a beautiful face to look into-a combination of gentle and strong that is very hard to define- I love her so very much! If she needs a major overhaul she’ll have one…. but I’m not convinced that is what she’s telling me – we continue the journey.