It has been two weeks since I have been able to even make it to a computer. My usual post is always on Saturdays....but, our life has taken a different direction since Jan 20th.
If you all remember, our sweet little Madilyn headed into surgery on Jan 20th. She had to have another de-tethering or her spinal cord. This was number 4 for her. Things went really well during surgery. Her surgeon was able to remove almost half of the lipoma and completely free up her spinal cord which was attached to the dura. It took them over 6 hours to complete the entire procedure.
Having walked this road before, we were prepared for our normal. After 72 hours she should have wanted to move into a sitting position. This did not happen. Her pain was greater than we had ever seen before. The intense spasms never stopped. We all began to worry.
Madilyn's surgeon quickly got PT involved to see if they could get her moving. It was frightening because of her pain. Then once her feet hit the floor....we knew that something was wrong... Our worst nightmare was playing out before our eyes.
Sometimes....things don't always go as we plan. Our plan was to have surgery and leave a week later. Madilyn's body changed all of that. After 7 days, we had to be admitted to the rehab unit of Children's Hospital. I was scared. I had no idea this floor even exsited. It is a world all of its own. The goal was....to get Madilyn walking again.
So, after a good long cry in the shower by myself, that Momma strength kicked in and I was on board. We have quickly adapted to where we are and we are working like crazy with her therapists to have her walk out of here on Tuesday.
I could choose to get angry over our circumstances. I could choose to be negative. But, as I stated early this year....I am going to choose HOPE! It will be a while before things are 100% for Madilyn....but, we will reach for it and keep reaching for it.
The Director of the Rehab unit came to her room yesterday morning and looked at me and said..."You are the best Mom on this floor. You are full of hope and push Madilyn to get moving!" I was so touched.... I am determined to move forward. Yes, I do cry. Yes, I am scared. But, with the support of all of our family and friends we will overcome.
Best Wishes to each of you,