Prader willi · Uncategorized

Locker 38


“What’s that noise? Are the boys awake?” It’s 6am and Elsa is squealing in her crib. My husband and I look at each other in the kitchen with our cup of coffee in hand. A smile jumps to our faces realizing she finally hit one of her toys. She was getting stronger enjoying her play.

Elsa is growing fast and somehow over half a year has passed in the blink of an eye. With Elsa’s primary functions of breathing and feeding stabilized, she has focused on gross and fine motor skills and speech. Elsa isn’t the only one that gets a workout, it’s a family affair. Most days of the week we are at our local gym where locker 38 seems to be my go to place to drop my bag. The boys race into kid’s club excited to see friends, dress up, and color their favorite marvel characters. This is Elsa’s time to work on hand-eye coordination and reaching while she lays under an infant gym trying to grab the colorful owls hovering above her. I’m thankful to have attentive teachers in kid’s club to assist Elsa. Although this does not seem like a lot of work from an outsider, it’s the world to Elsa and it means so much to me. It means she has another person to engage in social interactions and develop her brain for communication. Play time with Elsa has become more than just play. It’s therapy, every second of her day.

1 Corinthians 6:19 “Don’t you know that your body is the temple of the Holy Spirit, who lives in you and who was given to you by God? You do not belong to yourselves but to God”

Although I continue to see patient’s as a physical therapist, Elsa has become my 24/7 patient. I’m working hard to read as many pediatric physical therapy books I can while integrating it into her daily therapy. I’m no expert, but we are learning as we go. I’m not doing it alone. I have to say thank you to the other PT’s in different states that have suggested books, exercises, and continuing education courses. Thank you to the support of the PWS mom community and thank you to our local gym where Elsa has a chance to play and grow socially, and mom gets a break to workout herself!

I have run into a lot of friends in the past two months and the first question I hear is “How are you all doing?”. Well, we are very busy. I have good and bad days. My boys are literally jumping off the wall during winter and Elsa needs so much attention. Maybe I don’t need to pay that much attention to her growth, but I have this nudge in my heart to do some sort of therapy with her daily. This makes for busy days. We also travel to Anchorage or Seattle every month. Thankfully my husband’s work is gracious and gives him ample time off for Elsa and I to travel. What do we do? We do more therapy! It’s our life right now. She has learned to hold her head up for long periods of time, play in tummy time, roll from back to front and front to back, and started babbling and mouthing toys. This is a stark contrast to the first two months of life where barely an arm would move. It’s agonizing watching her work so hard for tasks that should come so easily to infants. But, here’s our graceful moment. She is meeting her goals, she is following her timeline and she is thriving.

Another fun adventure filling our time is a project I have been working on to raise money for Elsa’s therapy and raise funds for PWS research. These fleece and cotton neck warmers will be sold at a summer whale watching destination just outside of Juneau! Plus, I’ve added new colors and fabric choices to my shop now being offered on my blog. Just click here to go to the shop. Good news is the neck warmers are cheaper if you purchase directly from my shop and shipping is free!

Fun fact of those with PWS is the inability to properly regulate body temperature. Elsa will get cold at the drop of a hat. Her toes turn purple, lips turn blue, and she cries from pain. She also will flush quickly in hot environments. Over dress the girl and her cheeks will let you know she’s too toasty. Under-dress and she’s miserably cold. The hypothalamus in kids with PWS does not function as it should, resulting in temperature regulation malfunctions. This is true for pain tolerance as well as hunger signals. My neck warmers are perfect for her to keep warm without bulky clothes so she can move easily and keep up with her brothers in the winter snow.  

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