First Few Days at Home Before Lengthening Begins

We have had 2 full days at home and I can tell you it is identical to having a newborn baby at home.

Mary is going to bed too late (11:30 pm) and getting up too late (10:30 and 9:15) but she is only getting up once or twice a night to go to the bathroom and take more meds.

The days go by so fast but are filled with just the basics of life: sleeping (ideally), eating (her appetite is improving), going to the bathroom, (see just like a baby I tell you) with the addition of tracking medicine, exercises, and moving from bed, to recliner (great suggestion by my sister), to wheelchair, and hopefully getting outside at least once a day. Until she can move her fixator leg by herself which they said may be in 10 days it really takes 2 people to help her get around.

Her sense of humor is back. Although there are sometimes quiet sad moments. I would say her energy level was lower today. She has been very patient with her little sister.

She prefers doing as much as she can by herself (brushing her teeth, moving as much as possible, etc.) which is so nice to see. I am having to push her to take meds and she is getting by with regular over the counter Tylenol.

She is doing more art and reading versus ipad.

Going up the stairs to bed last night was our first bonk of the fixator. I was holding her leg but I couldn't even tell you what happened. I don't know if I turned her leg too fast or if she didn't have the strength to get up and came back down causing the twist. It was painful but she was more concerned about whether it was bleeding which at first it wasn't but when I later saw that it was I dabbed it without showing her.

She had a minor fever before bed which was hard for her Daddy but it went away.

Tomorrow the next phase of life with a fixator begins. We have our first doctors appointment. Our doctor is out of town so we are seeing another one. They are going to take off the bandages (and I am hoping clean up her leg a little for us), and then they will do the very 1st adjustment of the 6 struts. I have a feeling (again just like a baby) once you think you have figured this thing out it's going to change on us...I will let you know.