Quick recap of the last few months:
We went to Cabo with Susie and Karl for 10 days in early December. It was bliss. Elin was seizure-free and Anya swam with the dolphins- 'nuff said.
Christmas was a crazy blur but a wonderful time shared with family and friends.We just went to Packwood/White Pass for a long weekend of skiing. Susie stayed with Elin while Myles and I skied with Anya. It was epic! (as Anya would say).
Where are we..... well both girls are doing really well. Anya is enjoying first grade. She is busy with gymnastics, soccer, skiing, playdates and now she will be in the school play. Also she has no teeth. To be fair she has some teeth just no front teeth. In the last two months she has lost over 5 teeth. The tooth fairy has been very busy and is going broke.
And Elin- well Elin is good generally. We have better control of her seizures. The CBD seems to have had a remarkable impact on the severity and frequency of her seizures. It has allowed us to reduce her anti-epileptic medication to almost nothing. So that's an incredible achievement. BUT- she still has them.
With the reduction in medication she has come alive. Her personality is blossoming and she is just really an amazing person to be around. She is so happy and loving and kind. It's refreshing in our current political climate- she is a breath of fresh air. She giggles and is super ticklish. She LOVES her sister and will give those she trusts and knows GIGANTIC hugs and love pats. Someone who had just met her and spent a few hours with her described her as "delicious". I couldn't agree more.
She is trying to communicate. She has word approximations and I know what she is saying or signing most the time. We are looking into getting her tested for an AAC (augmentative and alternative communication) device. Think highly specialized iPad you can program for her specific communication needs. Her gross motor skills are hindering her capacity to use such devices so far so we are trying to figure out a good fit for her. It seems as if she really would prefer to talk or sign though which we would prefer as well.
She has continued Hippo-therapy at Little Bit Therapeutic Riding Center. "Her" horse Star and she have an amazing connection. I almost cry every time I watch her ride. It's one of the most incredible things I have ever seen. If anyone ever wants to come out and see what this is all about and/or just have a touching experience let me know. The human-animal connection is strong in both these girls.
She is enjoying her second year of preschool at Meadow Crest. She has the same teacher and para-educator so they know Elin pretty well at this point now too. The school district has decided to allow us to keep Elin in preschool for one more year. We didn't even have to push for this (although I was prepared too if need be). The Renton school district has been amazing in partnering with us to address all of Elin's educational needs.
Sleeping... ah sleeping... not happening yet. I figured once we got Elin off all or most of her meds her sleep pattern would mellow out and she would start sleeping through the night. I mean she is on cannabis for god's sake... no such luck. So she had a sleep study. Myles took her in and spent the night with her. She actually did quite well despite looking like a mummy. We are still waiting for the results and hope they can shed some light onto why she wakes in the middle of the night 90% of the time and won't go back to sleep. WE ARE TIRED!!! We are used to it now, so if you see us and we look tired, it's probably because we haven't slept through the night in 4 1/2 years... just sayin....
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