18/11/2025
Ugh. You guys……we are moving on.
It’s both exciting and bittersweet all at the same time. It started with the monthly calls from the feeding supply company. “What do you need this month?” They would say and I would respond with “Nothing, we have stopped feeds for now!” At the beginning of last week, I sent back the extra feeding pump. The other one we own, so we get to keep that. This past weekend, I washed the backpack that held her feed bag for the last 6 years for the last time. Finally, this morning as we pulled into the hospital parking lot for her routine lab work, she says “hey mom? I want to go in by myself this time.” She was called back and I stayed behind. Even though she was yelling at me for wanting a picture, I still got one. In 14 short years, we went from holding her down to holding her hand to sitting next to her to standing near her to now, in the waiting room, just waiting for her. Now we are moving on.
For a very long, scary time, I wondered and worried about whether we would actually get to this very point. Sometimes out of stress because it was an especially hard poke that day and she was little and screaming and I just needed it to be easier for ONCE! Sometimes out of true fear that I was going to lose her and I didn’t want to not see this day. And other times, I wondered what it will be like when she is older. Now we are moving on. I wished and waited for this day for so long, but it’s all so sad that my girl is growing up and finding her independence!
Everything else is good! We have been in Seattle a lot lately because they found compression fractures in the top of her spine and the middle. Unfortunately, her long term diuretic and steroid use has caused osteoporosis! The fractures are healed and stable so no need for surgery, but we are trying to increase her calcium intake and we are going to try some physical therapy. We are waiting to do a dexxoscan which will look into her bone density and will help us determine if she needs any further treatment! We had one scheduled but then the machine broke down and they still don’t have it fixed! We will update more as we know more, but we are not worried about this. This will be simple in comparison to everything else!
