Gracie loves her new glasses. She smiled so big as soon as we put them on and she fusses when we take them off. She makes such long eye contact now and for the first couple days, looked at us like it was the first time she’d ever really seen our faces. They’re really strong...
Oh bless her little heart. A couple weeks ago we found out that Gracie’s hearing isn’t so great and today we found out that she can barely see a darn thing up close. Her sight far away is good but she can’t see near her which explains her total disinterest in toys (maybe….or maybe she’s...
Steven went to his first solo Grace appointment. This one was a bit silly because she was prescribed shoes even though she’s never even acknowledged that she owns feet. So she got fitted for these custom-made pink leather boots which probably cost £200. She’ll wear them in her standing frame. Today, we picked up yet...
We can check Audiology off our list for now. Next is Ophthalmology then Orthotics and who knows what else! The result of today’s appointment is that Grace has ‘Glue Ear’ which means that the tubes in her ears don’t drain away the fluid behind her eardrums. Apparently, this is extremely common and expected amongst girls...
Grace seems so grown up lately. And suddenly, we’re becoming aware of her sense of knowing. She knows so much more than we thought she did. She knows her name, she knows when it’s time for a meal. She knows what we’re saying. The other day we took the kids swimming. I was working with...
If you remember back a few months ago, we found that Grace has the Rett mutation known as R168X. Gracie’s friend Amy also has this mutation and her mom is such an articulate writer and keeps a wonderful blog about their lives with RS. Anyway, she had a particularly interesting post today about Amy &...
Grace finally received delivery of her new standing frame. Our dining room is now a landing pad for wheelchairs, eating chairs, standing frame, car seats, and tumbleforms. We should really have dining room insurance incase someone breaks their neck upon entering our house. The standing frame is just what it sounds like. A device you...
