Hard Times

Ever since Mary's knee was immobolized on June 19 it has been very rough. 

As she told me last night, she can't get comfortable at any time. That's hard to hear from your kid. 

I am hoping Tuesday was the tipping point. I was physically and emotional exhausted. To help us all sleep, we started giving Mary the valium she was prescribed but has never taken. It has helped and boy what a difference it makes when you get some sleep!

We have been trying to think of things to look forward to weekly: 4th of July, trip to get ice cream the next week, etc. then I realized it is also important to realize that we are achieving the physical goal. Her curved back looked straighter just a couple of weeks into the process. Last night, I noticed her hips that before we started looked 3 inches different in height, now look almost even!

As I tried to tell myself before we started in May there is always the unexpected. 

• On Tuesday, the screws on her top two pins seemed loose AGAIN but thankfully the bar hadn't pistoned like it had before causing the wiggle procedure on June 19. Dr. Scott advised to put them back in and use locktight to secure them which Daddy did. 

Loose screws creating the space between the square locks








Tightening screws

• On Wednesday her knee started itching. She has had itching periodically through this procedure. Last night the itching was the only thing that woke her up.
• On Wednesday her Daddy realized the strut that was put on to immobilize her knee has adjusted a couple of millimeters allowing her knee to bend a little. Dr. Scott said he didn't like those particular struts called "trauma struts" because they did wiggle more than the usual strut. He said it would be good for her cartilage to flex her knee a little but warned Mary wouldn't be a big fan and he was correct. We are to lock it in place when we are done flexing.

Sunday night was the only night Mary's hip and glute didn't really bother her (but her toes sure did). Her hip and glute are back to being very uncomfortable. I do think that her body is moving to a straighter position and although it doesn't feel good at the moment it will for the rest of her life and that is why we are doing all of this.

We have guesses on when she will get the thigh and foot piece off. Its bittersweet. She can't wait to get it off but the earlier in July we get it off the less length we will get. She has requested we do the removal procedures back at Children's vs. John Muir which means the procedure may be on a Thursday in July. I am not sure she will stick to that if it's hard to get scheduled at Children's and we could do it sooner at John Muir. (I prefer Children's myself so hopefully it will work out.)

We are all counting down to our x-ray and appointment on Friday, July 6 to find out how much length she has gained (it should be 5 cm. which is our minimum goal) and our plan: can we keep lengthening or do we need to stop which is based on Mary's desire (which I think is waning based on how uncomfortable she is now a days) and what her body will physically allow.

I was trying to take a picture of how bad Mary looked one night but she smiled for the camera. I have to admit she looks so different to me in this picture but it could just be that my girl is growing up (pun wasn't intended- honestly).