I must be forgiven for not writing much these past few months. I have struggled with my own health and other issues that do not resolve as quickly as they should, or I would want. But, enough of that!
So, what can I tell you about this year, in a completely nonsequential order!
Katelin’s gross motor skills are phenomenal. Last year, the big deal for me was her lowering the arm of her seat to get into the van. This year, wow!- She can balance long enough on one foot for me to put her sock and shoe on, sometimes holding on to the wall but more and more often without holding onto anything at all.
Her gait has improved dramatically since starting Daybue- compare from when she first started and now!
Her hand use has skyrocketed and it is very difficult to prevent things like… the refrigerator being emptied, multiple water bottles being opened at the same time, groceries being opened and any sort of organization of books. Check out the way she uses the fork to make sure she doesn’t drop any salad. ❤
Two really big deals- she applauded for her nieces’ team. Not some light clapping, but actual applause and some cheering- “go!” “score goal”. The second one, she CHOOSE to walk into the grocery store, place items in the cart, chose the “soda” side of the aisle and walked right up to the root beer I said she could have. Then she placed almost every item on the conveyor belt. At best her baseline is two.
Some notable snapshots!
A lot has changed, but it’s nice to know- somethings never change
Everything on the left was new that day.
She moved her chair all the way up the sidewalk so she could be in the shade
Hearing her grandmother on the phone after she said “gramma Sally” for the first time. Just look at her eyes! So aware of how that came about.
A lot has changed, but it’s nice to know- somethings never change
Everything on the left was new that day.
Everything on the left was new that day.
Her behavior has improved and she is learning coping skills such as deep breathing and asking for hugs. We still have a ways to go, though, but I can take her more places without worrying that we’ll have to leave or that she will be unable to handle the disruption in routine (as much).
Her iPad skills are improving and she can definitely make her way around YouTube to find the videos she likes best. Her preference remains preschool songs and picture books, but she has landed on and finished older lessons about science.
Her language skills are not advancing as much as I had hoped, not nearly as quickly as the soared during the trial, but it could just be the extra ten years we had to wait, but that is not to say they are not advancing.
A couple of funny things that happened when we went to San Diego for a Daybue presentation. Bill Keller sat down with us with his cup of water, which Katelin promptly stole, like ninja style! LOL, the look on his face was awesome. Secondly, one of the presenters on the screen said “bus” and Katelin promptly repeated it. That was a lighthearted moment.
One of the coolest discoveries for me remains the fact that I was able to show that Daybue is helping with the issue of temperature dysregulation, at least with Katelin.
Hands and feet showing as blue/cold Taken in summer
Feet are red. Taken in summer.
Hands are red.Taken in summer
There are things I couldn’t catch on camera or don’t have a baseline for, or I simply wished to be “in the moment with her. But I know when I see someone’s mouth open in amazement that I can’t catch it all, but that tremendous things are happening. Hearing her Rett specialist, who often downplayed improvements, say, “You’ve made a believer out of me,” is the biggest assurance that I fulfilled my promise I gave to her all those years ago, “This is going to work and you are going to get it and get better and be happier.”
To all those who have followed our journey, contributed to it in anyway and who have been her cheerleaders all these many years, thank you.
To all of you and our fellow Rett families, Happy Holidays however you celebrate the season and a Happy New Year!
Before I sign off for the year, I need to acknowledge the many we lost this year and for their families, as they approach the first holiday season without their loved ones, may you find comfort and peace in knowing they were loved throughout the world.
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