Spina Bifida Kids

Our Home away from Home!

Over the past 4 years, Children's at Scottish Rite has been "Our Home Away From Home" with Madilyn. Once I realized that we would spend more time here than we would like, my thoughts turned to home. At home we feel comfortable. We know our neighbors, the mail carrier, the UPS guy and so on. We know where to go for food and were the TV is. My thought was....then why can't we make Madilyn's experience at Children's as close to home as can be.

We visited the library, the garden's, the Koy Pond, the put put golf holes. We know which elevators get us to where we want to go. We have nurses we have known for 4 years and we love them. Radiology is a breeze since we know the procedures by heart now. We know when to go to the cafeteria and when not to. The play room is a must and the arts and craft lady will keep Madilyn busy if you let her do what she does best!

The other things we bring from home. A good pillow is a must. The hospital pillows make Madilyn sweat soo bad. She loves a pillow from home with a soft and cozy pillow case. Her blanket comes along as well as an animal or two. These things make Madilyn comfortable and give her courage.

This week as Madilyn had another MRI that required sedation. She did so well. I really made sure she was well hydrated the day before so we could get the IV in the first time. It worked and not one tear was shed.

We have suspected for some time now that something was not right inside of there. Suspecting and knowing are two different emotions all together. We went from suspecting to knowing this week. Sometimes...I hate being right because I usually know what road we are about to go down....and so does Madilyn!

I think this picture speaks louder than words.

Another lipoma showed up on her MRI. It has only been 15 months since our last de-tethering. But, her symptoms are great enough to go ahead and see if the progression of nerve damage to her right leg can be halted. Madilyn has broken her foot in 4 different places. She can't feel it and we would have never known it was broken except for the swelling in her foot. Before she has broken just one bone at a time. Now she did 4 bones. This is alarming to us. After her last surgery she woke up screaming because she felt her foot for the first time in a long time and it was broken. This time could be worse for her if she begins to feel it.

The more damage to the nerves in her right leg, the more her bone softens the easier it is for her to break it without knowing. This is her third cycle of this and we finally put it all together. This is such a huge decision to put Madilyn through another surgery so soon. March, April and May were spent in and out of the hospital due to complications from her MACE Procedure. But, even with that, after she finally recovered, the surgery changed her life forever and we love the MACE.

Madilyn will have surgery on January 14th. Until then we will work with Orthopedics in trying to get her foot healed. She also got strep this week. Ugh.....

As I sat talking to her doctors this week, I once again felt an overwhelming since of gratitude for these people who have such an active role in our life with Madilyn. I love their honesty in evaluating her situation. I love that we can speak frank with each other. I love that they know I have done my homework before I have gotten to their office and they are willing to listen to me. Most important ...they have bonded with our daughter and she with them. They respect that she is older now and they talk to her and not at her. Our next appoinmtments will be December 28th. Until then.... we will work on enjoying this beautiful Christmas Season.