|New Year's Eve 2015: Ellie and Mama and Serafina|
As usual I have been meaning to write for some time now. Life has been a sleep deprived whir since Ellie had her surgery two summers ago. She turned 14 this last November 9th.
I feel like we are on the downhill slide toward the day when she is 22 and can no longer go to her amazing school. This is where I have to bring myself back to the present - take a deep breath and get back to describing the past year.
Her feet have stayed walkable for the past two years and she is just back in her stander now after having another surgery to get the pins out this Fall. You can read about her first surgery here by scrolling down a bit. We did it to stop her hips from popping out and to correct her clubbed (due to her CP) feet. This fall we had to get the pins out. As you can see by the picture it was a ton of hardware in her tiny frame.
|The titanium they took out of Ellie this Fall|
The recovery included her being in a wedge and knee immobilizers 24/7 for 8 weeks she didn't sleep through the night for about 2 months after the surgery or maybe three. It's been so long since she consistently slept through the night I have lost count. When she was in the wedge, she had to change position and was uncomfortable in the knee immobilizers so she was pinned down. Then she was weak and couldn't roll over. I can't blame her. Dave and I take turns getting up but I can feel that we are not as young as we used to be and I haven't totally healed from the two surgeries I had a year ago either. It was a tiring year where we accomplished a lot that I haven't had time to write about. Still, I won't be sorry to see the back of 2016.
|Ellie in Knee Immobilizers as Tay Tay|
|Ellie and Donaveil|
For the first time ever, she says consistently that she loves school. She doesn't complain every morning like she used to. She's with a class of other middle school girls who can walk or use electronic wheelchairs and talk. They are pulling her forward and out of her shell. It's exciting to see her doing more and being more outgoing.
|Fairy GM's Fav song is also Shake It Off!|
The Magic Kingdom and Epcot were 99 percent accessible. There was only one ride we noticed that was not accessible (Swiss Family Robinson). The operators of the rides were really sweet and the would let Ellie go twice if she wanted to. They spoke to her first not us which was an impressive demonstration of sensitivity to difference around disability. Many of the rides we could just role her on to. Definitely get the disabilities Fast Pass. You can get it right at the Magic Kingdom's town hall right past the main entrance for no cost. It's worth it. We also worked with Heather at Mousekatours who did all the heavy lifting for us at no charge in terms of booking. Thank you Heather!
|Ellie right after the BB Boutique - feeling fine|
Another key finding was that everything, everywhere was cleaner than clean. That part I was really happy about. Happiest place on earth after all!
Ellie got to go to the Bibbidy Bobbidy Boutique and her Fairy Godmother In Training, Samantha (the training takes 1,000 years don't ya know), gave her purple and blue hair extensions and a fancy doo. Ellie unbelievably let her do her nails and make up - both firsts. Samantha said to Ellie, "Put your hand up on my arm." Ellie did it and let her paint her nails like she did this every day. Ellie has a history of being very sensory averse and fearful of new things. She doesn't like others to touch her hands - especially strangers. But she did this all no problem. There was some surreptitious weeping to be sure from two members of our party who shall not be named.
She explored the park and each ride we took her on with wide eyes and smiles and laughs. It was amazing to see. She particularly loved the Haunted Mansion, the Tea Cups and the Magic Carpet rides. She also loved it when Disney staff members passing by would say "Good morning Princess!" We have called Ellie 'Princess Ellie' since she was little. So for the park staff to say that brought a look of surprise then happiness to her face, as if to say, hey they really know me!
|Ellie on the Magic Carpets with Dave|
The year ahead is about getting Ellie to feed herself. She is apparently doing this with little assistance at school though she refuses to try at home...ahem. As parents we need to push her on this one. Other goals are to get her using her voice more and to continue to build strength. We are bringing her to extra PT outside of school and I want to do some yoga with her and more weight bearing. She is still growing a bit but I don't suspect she will grow much more. I wanted her to get to 5 feet because she would be able to get into adult sizes and by sizes I mean not only clothes but seats, etc. She's not quite there but as her very loved Pediatrician Dr. C. noted, she is finally on the very bottom of the growth curve for her age after a long hiatus below it.
|A sketch for a painting I am working on of Ellie|
Happy New Year from me, Dave and Princess Ellie! xoxoxo