Summers with CDKL5
As we dive into summer I want to share with everyone a few things we learned over the past 6 years in our world of special needs….
"Ah, summer, what power you have to make us suffer and like it." ~Russell Baker
REMEMBER SUNSCREEN!
Some medications and combinations of medications cause extreme sun sensitivity. Harper’s face was permanently scarred as a reminder of this. Reapply sunscreen to your special needs child often so you don’t have to live with the guilt of that period of pain you could not prevent after it occurred.
POOL ENJOYMENT OPTIONS
Harper loved the water and Lily loved to experience the joy of swimming with her sister. We found that the waterway babies neck collar was really helpful to Harper as she wiggled around the pool in an upright walking position. We found the Aqua Gear water weights in the .5, 1, 1.5 and 2 pound options were the most comfortable for her ankles to keep her in this position and they could be used in therapy outside the pool as well on both hands and legs. But sometimes like many of us, Harper just wanted to float on her back. That is when I really enjoyed the Kiefer Pediatric Swim Collar. We put this on with the round part in the back and wrapped the strap around her waist bringing to a close in front of her. This made it easy for her to relax while floating around the pool.
HYDRATION IS CRUCIAL!
Don’t forget to hydrate. You might not be thirsty but typical and special needs kids NEED the extra water. We found that Harper, like all of us, needed more water or pedialyte to stay hydrated and healthy when out enjoying some vitamin D with the family. So whether it’s a day in a chair with wheels or a day in the pool remember to push a little extra water to avoid possible IV fluids in the observation room of your local hospital.
"There are two reasons for drinking: one is, when you are thirsty, to cure it; the other, when you are not thirsty, to prevent it." ~ Thomas Love Peacock
STINKY FEET!
Harper’s favorite place to be was outside and in the summer heat many times that meant without shoes so her feet would not sweat. Last year we found her favorite pair of shoes I wish I had known about sooner. Natives from Nordstroms! These awesome shoes fit her feet perfectly without rubbing or leaving marks and no sweating! She could even wear them in the winter with socks. She loved these shoes and so does her big sister Lily, especially at the splash pad. They are easy to clean and again NO SWEATY FEET!
"Give a girl the right shoes, and she can conquer the world." ~ Marilyn Monroe
Most importantly ENJOY THE SEASON! The next one is right around the corner and the next time this one comes around everyone will be another year older.
"Time is what we want most, but what we use worst." ~William Penn
Recent Posts
How We Stay Healthy Parents After Tragedy
Lily’s Adjustment to CDKL5 Loss
Help MAKE HOPE REAL by being on a subcommittee for our Run4Hope 5K and Kids Fun Run event to raise money for seizure research and Epilepsy awareness.