Sorry it has been a while. I know a lot of you know things got funky last week and I was remiss in not updating Eden's progress. But the story begins that it appeared Eden's range of motion in her knee and hip was not doing well. She could not straighten her knee and her hip was getting tight. We were at numbers that the Dr said may be a sign that we have to stop turning. So on Monday we called the Dr to try and get an appt, repeatedly, we emailed, we left messages with his Asst. Then Leslie called on Tuesday and we got a call back. They told us to stop turning and come in on Th. so....Did stop turning mean we would be done, or could we start again after a few days? Did we want to be done turning even though we did not reach the target of 7 cm? Do we get excited? What do we hope for? Does it matter what we hope for, it will be what it will be. So we stopped turning and waited for Thursday.
Eden's mood seemed to improve and she even slept through the night for two days straight. Wow - did that feel good. In Balitmore we went to PT to get an evaluation. Eden looked good! Even to my eye I could see her knee was bending better and she was more relaxed and got some more movement in her hip. The therapist was cool and asked how we were feeling and was offering to sway her evaluation if we were ready to be done turning. I told her we were ambivalent, but we made it this far and lets go for it if she thinks it is safe. So she went and told the Dr we are ok to continue. So, that is what we are doing, we are still turning.We are aiming for 7 cm. Her motion is tight, but not in the danger zone. Seeing how comfortable Eden was without turning was encouraging. Even though the fixator remains on for a while after turning, it appears it will not cause her pain. It will require care, cleaning and maintenance, but at least no pain - it seems most of the pain is from the growth.
Other news - we got Eden's lift, for the right or "normal" leg. So odd she needs a lift for that leg. It is amazing, you can not even tell it is there. It is exciting that as she gets older the lift will be barely visible. Now, we need to teach her how to walk normal. She does not know heal-toe. So we are all working on it with her. She will eventually get it, just like she has overcome every thing else. Her walking is great, she barely even needs the walker at this point.
We go back to Md a week from tomorrow, Oct 7. We should be done turning soon. Wish us luck!!
Glad to hear your therapy and clinic appointment went well! Don't you just love the waiting game??? Looks like we might be on a similar time track for turning. We are turning 3x a day still and at 5.2 cm. What about you?
ReplyDeleteMaybe we'll see you on the 7th. We'll be there too!