A kind soul reached out to me the other day offering words of encouragement and it made me realize that I have neglected this blog for *gasp* over two years and that apparently people are still reading!
When Ellie was much younger, I often wondered why there were so few blogs related to older children and teenagers with Down syndrome. Now that I have *another gasp* 13 year-old Ellie Bear, I realized that life just takes over. Along with the usual school, therapies, and doctors' appointments, there are many more extracurricular activities and social events. I have recently gone back to work. Not in the medical field but a complete career change to literary PR and marketing. Yes, I realize that is pretty much the complete opposite of what my degree is in!
All of the above has left less and less time to sit down and blog. Not to mention, to be perfectly honest, these blog posts took a lot of out me and took a lot of time. It can be difficult to open oneself up like that and then I wanted to ensure that I was/am respecting Ellie while also providing accurate information. While I highly doubt I will be posting very frequently, I do plan to post at least more than once every two years!
This is going to be short but I will tell you that Princess Twinkletoes is doing well! She is in the 7th grade and thriving. She still has a fair number of non-major random medical issues but we are all starting to recognize that it is "just Ellie". It feels as though once one issue is resolved, another one pops up. She has total teenage attitude with the growling, arms crossed, foot stomp when she is peeved and some days I have to search deep into my soul for patience!
First Day of 7th Grade
She's the Hamburglar!
Notice a theme? Chick-A-Boom loves her black and white stripes!
The pandemic has been tough. Having a child with an immunodeficiency is rather isolating. For a while, it felt like the world was going back to normal while we were still (and still are) being hyper vigilant. Now that we are all boostered and blood tests shows that she developed antibodies, we are starting to venture out more.
E loves her Adaptive Dance Class
Summer 2022 - Camp CAMP
In trying to stay safe, my husband had the bright idea to buy an RV so now we are embracing the RV life. I am an old school camper - think tents whereas my husband has a great fear of bugs, birds, lack of AC and lack of WiFi. The RV is a good compromise. Ellie refers to it as the "big bus' and loves it! We have gone down to Port Aransas, TX a few times and then we went up to Wisconsin over the summer to visit my brother. . . only my brother got Covid so we didn't see him! This Christmas, we will embark on a holiday trip to California.
I am hoping that all is well with all of you!
~ Anna
*While this is a Down syndrome related blog, many of the health issues and psychiatric illnesses discussed here are unique to Ellie and not necessarily related to her having Ds.* Please see more information under the Disclaimers tab.
