We had a splash-filled afternoon and evening today. We spent 6 hours today at the waterpark in town. Ellie loves to splash and run and jump in water. Watching her today made me so thankful for the abilities God has preserved in her. I felt a twinge of guilt as I watched her climb the gigantic staircase to the top of the water-slide, time after time. I was thinking of my friends and their little girls who are also fighting Rett. I grinned as she pulled herself up and out of the "bathtub" at the bottom of the slide, climbing over the edge and running back to the stairs. I cannot imagine the frustration she would have without the functional use of her hands. I felt so very grateful as I watched her grabbing balls from the water and throwing them across the pool at other kids. I smiled as she walked through water up to her neck heading for a group of pre-teen girls, thinking how much PT she was getting today while playing. I tried not to notice when the group of girls she tried to interact with all snickered and looked at each other when she touched their raft and got a little too far into their "personal bubbles." At the close of this day, I feel blessed for all the things Ellie can do. Tomorrow Ellie will turn 6. Our day at the waterpark was our way of celebrating Ellie and all of her abilities.
Too many days, I find myself caught up in the frustrations of how hard Rett can make our life. I want to wallow in self-pity for all that we must endure as compared to "typical" families. I want to study or wish or pray away Rett. Today, however, I am rejoicing.
Our Ellie is here, she's happy, and she's learning to communicate with us. She's satisfied with the things she gets to eat, in spite of her diet. She has wants and needs and is getting more and more stubborn about what those are and that we pay attention to them.
Just this week, I spent about 10hours reprogramming Ellie's device. I shifted her from a 15 button layout with quite limited speech options to 45 button layout with a PODD format. Two minutes into her FIRST trial with it, (while I sat on pins and needles praying she wouldn't reject it) she grinned and found the "special occasions" button and subsequently "birthday" "cake" "presents" "cards." To say I was beaming probably doesn't do it justice. What a little smarty pants! Of course, a couple days later, now that she's found the trusty "cow" page, I'm having a hard time getting much else out of her than "moos" and constant conversation about her favorite topic! It's so encouraging to see her working so hard to focus and use her eyes to activate the desired buttons, even though they're now much smaller and closer together. She shakes sometimes because she's focusing so hard. Yesterday I saw her kind of shake her head and squeeze her eyes shut, as she tried to refocus to make hits. Her determination and desire achieve is so strong, she is her mother's child! :)
Ellie's also recently mastered a new sign. "Mine" is her new favorite word. It cracks me up because I initially did this sign as a joke with her playing that something that really was hers, belonged to me. It started out as a back and forth of "it's mine" "no, it's mine" and now has progressed into Ellie using the sign appropriately and with humor at times. Yesterday when she activated a button on her talker that can represent any of these three, "I, me, my" She made her sign for "mine" indicating to me that that button meant her! I love how she smiles and how intently she uses her eyes to activate buttons and say what she has to say. It's amazing how determined she can be!
She really is an amazing little girl. I feel so very blessed that God chose me to be her Mommy.
Happy Birthday Ellie Boo
