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Thursday, December 29, 2016

Happy New Year!

New Year's Eve 2015: Ellie and Mama and Serafina
Hi Everyone,

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 pins coming out wasn't supposed to be the big deal it was but they also lengthened her ham strings. So it was another big surgery for her one year after the initial one. 

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
I am glad we did the surgeries for Ellie.  There is a lot of hesitation to do interventions for good reason when you have a kid with CP.  Doctors always want to cut. So parents have to be very cautious on what to do and get second and third opinions. Standing is important to keep the internal organs healthy and to build bone. Hips popping out of sockets because of the neurons continually firing in the muscles so much that it pulls her bones out of alignment is not good. I can see her CP pulling her right foot in again which is a bummer but not unexpected. However, the relentlessness that is high tone is like holding back a flood - it's persistent and due to her brain injury at birth. I wish I could fix that versus the many sequelae you have read about in this blog.

Ellie and Donaveil
Ellie is doing well despite all and I think is far more resilient than me. She just got back from our trip to Disney World. We went there to celebrate her entry into the teen years. She wasn't able to do it last fall because of the surgery so we are a year late. Then she had one week of school where she got to share the experience with teachers and classmates to much ado! She's now having a staycation over the Christmas and New Year holiday, and I think, quite happy for it. A big accomplishment is that she just got cleared for an electronic wheelchair! We ordered it a month ago so it will arrive in several weeks. She's getting her own wheels! We are excited but also think, in fairness, she may use it mostly at school at first. These things are like little tanks that don't take well to the presence of walls or narrower doorways. The wide smooth hallways of the school will be the practice ground initially.  

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!
Disney: From a disability perspective, Disney, quite simply, rocks it. We stayed at the Bay Lake Tower on the monorail and it was excellent. Everything was accessible. There were even lift chairs into the pools and the hot tub. The staff was great and accommodating. They even rushed to put ramps down on and off the monorail and there were tie ons and a lift on to the massive Disney bus that got us from the airpot. They schlepped our luggage from the airport to our hotel which was a welcome relief. Our room had wide doorways and accommodated her wheelchair just fine. There was space for her to dance and a full kitchen for us to make her food with a view of Cinderella's Castle and the fireworks each night. It was quite seriously - magical.

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
Best of all from a care perspective, is the fact that each park has a medical building where there are small rooms with a bed like you find in a doctor's office where we could change her. They have a medical staff too who I am sure would have helped me transfer her had I been on my own. This made all the difference. 

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
We went to a character dinner where she met Mickey, her favorite, and his gang. She had them all doing the hot dog dance with her. She also slept through each night expect the first one. All told it was a wonderful trip. Her Nannie Bernie and her best friend Tori came along which was a help to us and made the whole thing very festive and fun. Dave and I got a night out on our own. We went December 9-14 which is an off season. Every part of Disney was kitted out for Christmas and beautiful. However, there were still crowds. I would never, EVER go there during one of their more crowded periods. 

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
As a working mom and all the other things I am the year for me is about trying to get some down time and do the things that make me, me. The drawing here is an example of how I am trying to get in tune with myself. It's amazing how time goes so fast when you are taking care of someone else. I take care of others in my work too as a teacher and head of a department. I take care of my consulting clients too. It's my job, I love it. Because that is the nature of my work, however, it's really easy to forget about taking care of me. What that looks like is me not noticing my own health in a way that has to change. I have an art degree and love to draw and paint but because those activities are not tied to helping Ellie or Dave or making money, I hardly ever do them. Because I took on a larger role at my job it's been hard to find time to exercise. I have some sort of hyper sense of responsibility to others which is good but self care is critical. I am in this life for the long haul. Not writing in this blog is symptomatic of this - a renewal mechanism sitting there unused. I am trying to change that. Otherwise it's just this endless cycle of output with no input to refuel. My wish for you is that you find your own pathways to renewal this year if you find yourself in need of them. 

Happy New Year from me, Dave and Princess Ellie! xoxoxo

Wednesday, May 25, 2016

DJ Ellie! Ellie starts a Sound Cloud channel

DJ Ellie
Hi Everyone,

It's been awhile as it's been a hard year for us as a family. But that is the content for another post. Suffice to say we are all doing much better and looking happily toward summer holidays.

The BIG news is that after Ellie's most recent IEP we started to think about what Ellie will do after school.  Though I would give my eye teeth if Ellie could stand and do any kind of work in the community (which you never know - she may some day) right now that is not realistic with her CP as it is.  I was asking what about more school for her and found that there are college programs that support people with special needs but they seem to support only those with the cognitive abilities to handle college level work. Ellie is not there at 13 and I am not sure she will be at 21 when her school ends.

The issue I have with school ending for her at 21 is that she is delayed  - so instead of acting like my 13 year old niece she acts in some ways like her (wanting to chill on her own and rolling her eyes when I kiss her on the top of her head in front of her carers - so not cool mom!) but in most other ways she is younger.

Also, she has had a hard time as a little kid (see this blog) with medical issues that landed her in hospitals and feeling poorly versus being in school and feeling good enough physically to really engage. She hasn't put in even close to the hours in school in terms of attendance as a typical kid her age. On top of that she has been slowly recovering from a traumatic brain injury. And she is still recovering in many ways. She got her hearing back which was GREAT! She continues to make progress forward in every way.  My wish is that she could continue to get help to learn into her 20s. That doesn't exist right now.  One day I may have to start a school for her and others who have aged out of their school districts at age 22.   I digress.

In all this thinking about this and what she would do after school I realized there is something  - two things actually - that she already said she wants to do. One is make music. The other is be a toy tester. A friend told us you can write to toy companies to offer to test their toys. I will be doing that this summer and will report back.

On the make music front we decided to get her involved in doing that now. Dave has recording equipment because he writes songs and sings and he has the tech savvy to teach Ellie how to edit down music.  Six Sundays ago we asked Ellie if she would like to make songs for other kids to listen to.  She signed quickly YES!
Dave with Ellie using the MPC

Now every Sunday at 9am Dave and Ellie and I sit down and Ellie creates a song with our help. Ellie is the composer or the talent, Dave is the production tech and I am the producer.  First we ask her what she wants to use to make the song with - namely her toys and a Music Production Controller (MPC) that has all these great rifs on it (See the Mothers Day song) and her voice output device and her Fijits  - of  course.

She creates a couple of tracks. Then Dave works with her to edit them, e.g., "Ellie do you want to make this part repeat or stretch out?"  Ellie choses. I hang around to help with the making of choices and to ensure the pace accommodates Ellie. ;-) We need to figure out how to help her drag and drop the bits of song on to one track. We are still figuring out how to adapt the tech.

She is into it. She pays attention for the whole hour or so it takes. There is no complaining or anything. I think she is quite happy with her Sound Cloud channel where we upload the songs. I need to figure out how to get them on iTunes  - which might be the start of her school fund!

I thought I would share this new development with all of you.  Here is the link to Ellie's Sound Cloud site if you want to hear her music! Elle Belle on Sound Cloud

If you are so inclined leave a comment which will make Ellie's day.

P.S. My favorite song is  "Happy Mothers Day"  ;-)