Tuesday, January 14, 2014

Tried and True Tuesday: BRRR to the RRRR!

photo credit
Winter has been pretty brutal for a large chunk of the US and keeping ourselves warm is difficult enough without worrying over the level of warmth our children with complex medical needs are feeling. They cannot vocalize whether they are too cold or too hot and neither extreme is a place of comfort. 

So, how do you keep your child warm? 

Not to mention SAFE?

Wheelchairs, fasteners, buckles, and such.. complicates an already complicated circumstance.

Here are some ideas from our Bee-Keepers (parents of children with hydranencephaly) and others from our Facebook page:

"Bailey always had her own electric heating blanket that she used while she was up. We had a heated mattress pad to keep her warm at night." ~Kristy 

"Warm up the car, hat cover with blanket and cypriheptidine." ~Linda

"I heat a rice bag in the microwave and place over her feeding bag tubing before it goes into her body, cover with blankets keeping it somewhat close to her body. It helps warm her food/water and keeps her core warmer. Not too Hot!" ~Chris

"A waterbottle for those cold feet.... And a nice cosy blanket when at home or school!!!" ~Caroline

 "Electric blanket for bed and car. They make them that plug into the car. Lots of layers, blankets and ponchos you can easily put on and take off as your bee gets hot or cold." ~GHF volunteer

And some things that worked for myself for Brayden: 

"Brayden would love to have rice packs warmed in the microwave with a bit of  essential oil (lavender for bedtimes and eucalyptus for daytimes). For outdoor excursions, I was given the idea to put his jacket on him backwards. That way his jacket was not bulking up and making for an unsafe position in his carseat and wheelchair. The jacket could easily be slipped on and off for transfers. A warm hat was always a must and on extra cold days, fleece blanket to tuck around the lower half of his body and around his legs." ~Ali

Since then, I've discovered some other great options from other clever mommies. List with links to follow:

Wheelchair Cozy (make your own out of a child's size sleeping bag):
image from eBay




Providing adaptive clothing options to keep them warm, dry, and comfortable!





And the best resource that has been shared with me has been adaption from Sharon's Ministry:  

"Sharon is an amazing little girl who changed our lives forever. As we struggled to put words together about Sharon's life and her impact on us, there were no words powerful enough to describe our little girl. Love is the only word that came to mind. After struggling with these words, this video best showed Sharon's life and her impact on all of us.

            {see the video HERE}

While preparing this video, we were constantly reminded of the following verses from the Bible:

John 21:17 "The third time he said to him, "Simon son of John, do you love me?" Peter was hurt because Jesus asked him the third time, "Do you love me?" He said, "Lord, you know all things; you know that I love you." Jesus said, "Feed my sheep." [NIV]

Matthew 25:35-36 "For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me." [NIV]

Matthew 22:37-40 "Jesus replied: "'Love the Lord your God with all your heart and with all your soul and with all your mind.' This is the first and greatest commandment. And the second is like it: 'Love your neighbor as yourself.' [NIV]"

About Sharon's Ponchos: 

"We know Sharon had many seizures throughout her life. We could also see the devistating effects these seizures had on her already fragile brain. As she became older basic care-giving tasks became more and more difficult. One thing we were able to see immediately was her limited range of motion. Simple dressing was not only difficult for Sharon's mom, but could be painful for Sharon to stretch out her arms.


A bigger issue added to this was Sharon was always cold because she never moved. So now we have a problem. We have a child who is in physical pain when you put a coat on her and is too cold to go without.

Sharon's Grandma Sue, came up with the idea of using a poncho with a blanket across the legs. This made it easier to keep her warm and was used with a wheelchair as well.

Our goal is to provide these ponchos, free of charge, to anyone who may need them for their child."

To request a FREE poncho for your child from Sharon's Ministry, go HERE


If you have any other resources or creative ideas to keep little ones warm under complex circumstances, we would love to hear from you! 


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