Saturday, July 31, 2010

Preparation Week

It has been a wild week at our house as we prepare for the return to school! Yep, school will be starting on Monday here in GA. I am not sure where our summer has gone. But, we had a good one.

Let me take a moment and celebrate some of Madilyn's successes....
1. For the first time in her life she has been able to swim in a pool with just her bathing suit on! The MACE procedure has changed her life when it comes to bowel control!
2. Madilyn passed the swim test at the YMCA...she swam 25 yards in the pool and can tread water for 1 minute...thanks to her older sister who is a champion swimmer for working with her many hours!
3. Madilyn went down her first water slide and loved every moment of it and jumped off the diving board like she was a professional.
4. She went to play with her friends on her own for the first time ever!
5. Madilyn survived a week without her Mom while she spent a week camping with her older sister!

Each of these moments were amazing. Each accomplishment helped her build a new confidence in herself. I hope that she will take this new found confidence with her as she enters the first grade.

I want to share with you all my feelings as we prepared for the return to school this past week. With my older children getting ready to for school is easy. Shop for clothes, buy school supplies and make a quick visit to pick up schedules at the their schools.

For Madilyn, it is quit different. We had lots of paperwork and lots of appointments. Our pediatrician is an important member of our medical team. We love Dr. Vicki! She is just like a member of our family. She is honest in her assessments and looks out for Madilyn. I was hopeful in my heart that things were not so bad but was prepared to hear that she was concerned about the changes taking place with Madilyn. It was hard to face them but we did.

Next we had our Urology checkup and follow up from Bowel Surgery three months ago. Then we had to discuss the loss of bladder control....I wanted to cry....! It has only been a year since our last spinal surgery. Madilyn's body is masterful at creating scar tissue. So, we are waiting on an appointment for a Urodynamics test. After we get those results, we will be headed to Dr. Reisner, our Neurosurgeon. Sometimes it seems like the never ending cycle. I am not complaining, I am just sharing. If you recall, Madilyn missed 67+ days last year from surgeries and hospitalizations and appointments.

I wouldn't want to forget Orthopedics! Trying to find a shoe to fit Madilyn's right foot is a nightmare!!!!! I think that the combination of the heat and the lymphedema is making it swell even more than usual. But, we must take great caution in putting shoes on her foot because she can not feel it due to the nerve damage. Pressure ulcers come quickly and can be a nightmare!

Finally, we had to have all our paperwork together. A 504 Medical plan is essential for Madilyn. Our visit to the school involved her teacher, the nurse and the Assistant Principal in charge of Special Education. Everyone has to been on the same page! I do not stop talking until I feel confident that we are working together.

So, I have done all I can do at this point. Come Monday morning I will send the entire crew out the door. Madilyn will be riding the bus for the first time because she wants to. I will probably cry as usual. I can't help it. Trusting others to care for her needs at school is the hardest thing I have ever done. There is a lot of uncertainty facing us this fall but we will start this new year with a smile and hope for the best.

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