Elsa is now 8 years old – a young lady! She continues to make slow-but-steady progress across many areas. She is sooooo darn smart. Her personality remains persistently sweet, and she is always excited to engage (and snuggle) one-on-one with friends, family, classmates and therapists.

This past year brought challenges, of course, particularly with self-hitting behaviors, changing her food up, and painful AFOs. (I’ll get into that more below.) But overall, we are headed up and up, I think. I’m prone to irrational optimism, and slow to make common sense modifications, but onward we go in hope and love, doing the best we can to do right by our awesome girl.

Communication: We put extra emphasis on communication in Elsa’s 7th year, which carries into age 8, and I hope into the future. She uses two kinds of communication. (Here’s a blog post I did about that, in case you’d like to check that out.)

Her primary system is low-tech PODD. The big key is keeping her words/PODD book within reach at all times. This is hard, as we are always on the move, but I can’t imagine her frustration if she has something to say and no way to say it. So I’m doing my best with this. She is a visual scanner, but can make some direct selections when her hands are organized and at midline. PODD depends on a consistent YES and NO. Elsa’s NO is looking away or head going side to side. For YES, she leans in really hard or reaches forward with both hands. I am amazed by some of the awesome things she is able to communicate with it.

Elsa also uses an Accent device, with two proximity candy corn switches. Some days, it’s a lot of “babbling” and experimenting. Other days, she totally rocks it. She is most successful when in her stander. Here’s a pic of that…

Medicines: Elsa takes 10 mls of Claritin every morning. Without it, she has a constant flow of thick snot. With it, she is clear and relatively congestion free. We have tried to take her off of it, but always go back on. It’s truly worked wonders for her. She also takes a 20 mg solutab of over-the-counter Omeprazole, daily. This is another med that we routinely try to come off of, without luck. I slather Aquaphor on her cheeks and nose twice a day – before school and before bed – to repair her cheeks, which are prone to redness and chapping.

Food: Elsa is still entirely G-tube fed. After a looooooong insurance/food provider dispute, we made a switch to a food that we can somewhat afford monthly and is easy to get (Pediasure 1.5 vanilla, which she now tolerates). Elsa has 4 oz for breakfast, 4 oz for lunch, 6 oz for supper, and 12 ounces over night via a Kangaroo Joey pump. She also gets 12 to 14 oz of water per day. My hand gets super achy, from all of the daytime bolus feeds. Anyone else feeling this? Would love to know how others manage this ongoing strain. I’m so grateful for school, as it gives my hand a needed break.

Joys: Elsa enjoys playing games on her iPad, musical light up toys, music, visits from the therapy dog at school, books, chatting with any and everyone, swimming, boating and swinging. We have a saucer swing in our backyard that her sisters and friends enjoy pushing her in and getting smiles and giggles out of Elsa.

Personal Care: I brush Elsa’s teeth daily and generally she chooses to spit the toothpaste out. (So I don’t have to go fishing for it.) She kind of leans forward and pushes the bubbles out with her tongue – quite skillfully, actually. I’m continually wowed by her ability to problem solve. We continue to keep Elsa’s hair pretty short, because it often breaks in the top/back, where she rubs her head against her carseat and bed mattress. I usually pull her hair back with a tiny band, otherwise her hair can become pretty wet and sticky, because of Elsa’s new spitting habit.

Behaviors & Habits: Elsa’s latest behavior we’re wrestling is with raspberries and spitting. It is such a mess. I can’t ignore it, because I can’t stand to see her face all wet, especially during these winter months. I’m not certain why she’s doing it. She does seem to bubble more when she has congestion, but I think she might also be doing it for attention because I always run over to wipe her when she does it. I also think she likes the way the vibration of the raspberries feels and the slick feeling on her hands/cheeks. (Ah, so yucky!) She currently goes through several bibs a day. We are trying an amber necklace, as we’ve heard that some folks have success with that. Elsa will soon be evaluated by her school district behavioralist. I’m optimistic, because behavioral data collection and systematic responses really helped us address Elsa’s hitting behaviors last fall.

Elsa started hitting aggressively early last spring and it lasted until around Christmas. We are not sure what brought it on, but it was clear she was unhappy and unable to communicate why. We’ve sussed out that it could have been any number of things… she came off her Omeprazole in March. Her AFOs were causing her pain in early summer. And we found out around New Years that she is considerably near sighted. (Here’s a blog post on how she choose her cute new frames.) All of this has played into why we’re investing so strongly in communication, so she can tell us what-the-heck is bothering her… and also express her thoughts and opinions, of course.

Therapy & Mobility: Elsa going to swim class every Monday in a heated salt-water therapy pool with other kids of similar abilities and their parents. She LOVES this!! On Tuesdays, she has PT, where we work primarily on standing balance, sit to stand, and walking. When Elsa reached age 5 and wasn’t walking, I got really discouraged. But this past year, I’ve allowed myself to believe she is going to do it. We shall see. She stands in her stander, against the walls of our house when I’m going room-to-room doing chores, and can lean onto and hold onto bars for stability. Here we are at Disney on Ice. The handicap section was so great.

When Elsa was just a baby, I poured over the details shared by parents of older children, looking for similarities in their pasts, as to perhaps somehow predict our future. Things for us have taken their own unique path, but I do remember drawing great encouragement from those posts. I hope that parents with very young kiddos see how Elsa is doing and get a feel for what the years ahead may hold. There are gut punches here and there, about the realities of our limitations. But overall, we are quite well adjusted to things and getting bolder about what we are willing to try and tackle. It is a non-stop hustle, but it’s the hustle we know, and we know without question that we are blessed beyond measure by Elsa. She is our whole heart.

 

12 Responses to Elsa turns 8 years old

  1. LAAMBS says:

    Elsa is constantly progressing, even if it is little ways that only you see at first. She is such a hard worker and thrives because of her attitude and your unwavering support. We love you guys so much and love hearing about all the latest news!

  2. DIANE PIERCE says:

    God Bless Elsa!!! She is doing absolutely great and so very adorable!!! Our kids are definitely huggers

    Your doing great with her. The most important care ingredient is love

  3. Anitra says:

    Thank you, Diane, so very much! It’s helpful to write it all down and take a big picture view of where we are. So often I get lost in the weeds and in our routines. Love we have, of that much I’m sure :o) Sending my best to you and your crew!

  4. Anitra says:

    We love you guys! Thank you for always being in our corner, supporting us and cheering Elsa on!!

  5. Leanne Fitzgerald says:

    I love reading about Elsa’s progress. You gave such a gift to put it all into words, Anitra! Thank you for sharing Elsa’s journey. Your outlook is one of her biggest assets. ❤️

  6. Anitra says:

    Thank you, Leanne! Your support and words mean so much! Doesn’t she look so grown up in those glasses? :o)

  7. Heather says:

    Great update! Thank you for sharing!

  8. Heidi O says:

    What a fantastic update, Anitra. I cannot believe she is 8 years old. She has accomplished SO much, and truly I am in awe of you as well. She is lucky to have you and Dan, and I know you are so proud of her. What a great post!

  9. Anitra says:

    Thank you for reading it! Glad it reached you!

  10. Anitra says:

    We are so very proud, Heidi! Her standing is really wowing me lately. She stands for almost all transitions – out of the tub, etc. This was not the case until fairly recently. It really affirms that we can never give up. Sending hugs your way!

  11. Keely Absher says:

    Anitra,
    Your post is so inspiring! The progress is definitely there. Challenges are inevitable, but you keep at it, and I am proud of Elsa for all she is doing. I’m also proud of you. You are an amazing mom! Paige goes through phases of the raspberries too which drive me crazier than teeth grinding (and that also drives me pretty crazy). Thanks for posting this update on your girl. We love you guys!

  12. Anitra says:

    Thank you, Keely!! Dang, those raspberries! :o) So far, no noticeable results from the amber necklace. I thought it was interesting that Elsa didn’t raspberry at ALL during her last trip to the therapy pool. That’s a place where she is SO happy! Would so enjoy getting together this spring – really want to catch up again soon! xo

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