We spent the first hour in the Kids Zone! It was Grace's first time to a professional baseball game and she enjoyed getting to play and climb in there.
Every staff member we encountered at the ballpark was incredible as they truly wanted to make sure all of us had the best experience ever! Every time I turned around someone was bringing Gator ice and cold water for his bowl. They sent a team member around with Miss Grace to allow her to experience all the Kids Zone activities and let me just be a Mom and interact with all the kids. Grace wanted to go down the big bat slide like she saw all the other kids doing. After several times of changing her mind she went down - just the once - but she did it and I was so proud of her!
After the Kids Zone we had to take some pictures and then we headed to our seats. We were seated behind three older gentlemen who were season ticket holders. They were super sweet in talking to Grace and listening to her endless commentary - "Where is the football team?" "When is the Indian Band coming?" "Where is the helmet?" (the inflatable helmet the high school football players run through) "Why is that man not hitting the ball?" "Why, why, why . . ."
I was THANKFUL that our older daughter was able to come help tonight when 827 was not able to get off of work. She was a huge help. She was amazed at how protective Gator was. Gator is not trained to smell peanuts, just dairy and soy, although peanuts are on the banned food list. The older gentleman in front of us was eating peanuts and it was like Gator knew that they could hurt Grace and he was standing between her and the gentleman until he put the bag away. It is amazing all he just knows to do. I am amazed my him every day and blessed to have him as my "6th child."
So now what I am getting messages about . . . why is she in the wheelchair? Back in April our muscular neurologist that treats Grace's spastic diplegia cerebral palsy told us that when she has growth spurt we are going to see some increased issues with her muscles. As she gets bigger the problems are going to increase. As a Mom that is hard for me because I see other kids with the same diagnosis that are far lower functioning than my baby girl and I think how can they have the same diagnosis? In the spring our neurologist suggested that we order a special "assistant propelled wheelchair" aka "big kid stroller" for Grace. Distances are hard for her and her muscles are much more fatigued in the evening. She is only 33lbs but she is 40.5 inches tall and she is growing fast. Her size makes her difficult for me to carry her long distances and she is to tall for our beloved BOB stroller. Her head touches the top of the canopy and that causes a whole gamut of sensory issues. So after much discussion we ordered her chair. She won't need it everyday and she can walk. We want her to walk as much as possible.
Socially she has become more fashion forward and she knows that her friends at school and church are not wearing the leg braces. We had a huge power struggle at the end of the school year and after talking to the physical therapists we decided to let her come out of those braces and work her muscles hard this summer. We have done that but she is growing and her muscles are changing. Her hips and knees are doing a lot better (Thank you swimming and water therapy!) but her knees down are just struggling. While we await her genetic testing we are going to start quarterly botox injections in her legs and feet to help these muscles. She doesn't want to wear "magic shoes" anymore and she participated in the discussion with the neurologist yesterday and understood it was magic shoes or shots. Neither of these solutions are short term. She chose injections and so we wait for insurance approval. But while we wait for that he wants us being really careful with distance and her foot that drags. We don't need her falling and breaking her arm or wrist. So the deal was we get our chair and we wait for approval to start injections. Except that our chair is still on order. We have been expecting it for the last month but it still isn't here. The dealer brought this sample for us to use tonight as we knew it would be a lot until ours is here. Grace is going to be sorely disappointed as hers does not have all the upgrades - light up wheels and sound machine that this one did. It was a huge help tonight and she could roll and wheel that thing everywhere. In fact when it came time to leave she did not want to go and kept trying to wheel her chair away from us and then when I took over control from the back she was throwing on the brakes. Little stinker! So now we wait for our pink one to come in any time now.
