wolfhirschhorn.org

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.