Category: Children with disabilities

Until Emma was diagnosed with hydrocephalus at 22 weeks in utero, I had never even heard of the word and couldn’t even pronounce it. For those of you who don’t know what it is, the exact definition is “a build-up of fluid deep within the cavities of the brain”. It’s also known as “water on the brain”. Emma had a brain bleed and caused a clot at the base of her skull. This allowed for fluid to build in her brain while she was in utero and after birth a shunt was placed to drain the excess fluid. As of now, the only cure for Hydrocephalus is either a shunt or surgery. It’s a diagnosis that can cause many issues and hopefully one day we will find a better solution. Our family wants to help spread awareness about hydrocephalus and have made some bracelets to represent that!

💙🖤🐻the colors represent hydro and the bear is for Emma! They’re $5 each (includes tax and shipping)! Please click below to purchase!

Be sure to include a note for sizing. Adult or kids. 😁

THANK YOU!

DONATE FOR A BRACELET

Just wanted to share a quick story of kindness. Although there’s terrible things happening around the World right now, all good is not lost. Emma’s new diet will require a food scale, as we will need to weigh and measure everything she eats/drinks. Long story short, it’s not covered by her health insurance because even though it is clearly a necessity to the diet, it’s not a medical necessity since we are electing to put her on the diet. Not to get off topic but insurance companies boggle my mind. Anyway, the food scale her hospital requires is $100+. I mentioned to her nurse that this will be a financial burden for our family. Of course we will get Emma whatever she needs but still having a special needs child is extremely costly.

Well the other day I got an email from the nurse letting me know that her friend is sending Emma a scale. She doesn’t want anything in return because her grandson is currently on the diet and medication/seizure free because of it. She wants Emma to be given that chance without us worrying about the costs. I cried reading the email. This woman has never met us and knows nothing about our family but what an amazing and generous gesture.

We’ve been so lucky to have been blessed with such wonderful people in our lives. I encourage all to ask for help when needed. You’ll be surprised who answers your call.

Emma has a very difficult time reaching down and grabbing for items on her highchair tray. Her therapist had a great idea to put some kind of light around the tray to get her attention. We just used some LED tape lights and drilled a hole through her tray to connect the plug to an outlet. I turn it on during mealtimes and we’ve already noticed a huge difference with her eyes being open. We just put the lights on this weekend. Here are some pictures of what we purchased from Amazon as well as the finished product. If you’re interested in this but don’t have time or ability to do it yourself please message me and we would outfit your child’s tray for a fee.Message me with any further questions!!

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