Working to create new pathways each and everyday
Emma has been using her therapy swing since last year, and it’s been amazing. She loves the motion and it really helps with her sensory issues. We built her this one because we wanted a swing that was not only functional but that would look beautiful in her nursery. We will be offering these custom-built therapy swings for sale this Winter. Please contact me at emmabearorg@gmail.com for more information.
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!
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.
I had seen a few versions of these books with black backgrounds but none like what I did. I originally had black felt cutouts covering the background of Emma’s books but black paint seemed to be the better solution. I just used black acrylic paint to cover the entire background except for the main focus on each page of her books. The results are pretty cool and Emma really responded well to the contrast with some light to accentuate the focal point. If you’re interested in this but don’t have time or ability to do it yourself please message me and I would paint any books you’d like for a fee.
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!!
Emma’s eyes are closed 80% of the day due to CVI, so we are trying to encourage her to keep them open. During breakfast today, at the suggestion of her OT and vision teacher, we used her spinning light toy. I placed it on her highchair tray in order to get her to look and reach for it. She did!! It’s amazing the progress this little girl makes daily. So proud of her❤️
Emma had another EEG this morning and an appointment with neurology to go over her Keppra levels. Her seizures have not decreased since being on the medication and they’re still waking her quite often throughout the night. The doctor wants me to keep increasing her Keppra and continue with the CBD oil. In the meantime, I am scheduled to attend an 8 hour seminar about the Keto Diet. This is all so overwhelming.
Basically the doctor explained that with Emma’s neurological history, it will be almost impossible to get the seizures under control, even with meds. I’m so upset there are no words. Hopefully the diet decreases the seizure activity.
Yay! Emma has been so behind for so long and it’s amazing that she’s finally catching up. Even though she’s 15 months old she’s only at about a 5 month developmental age. Imagine our surprise when she started getting on all fours and lifting her head. Now, she started getting herself into a seated position. This is truly incredible that she is sitting and playing! Her vision still makes it hard to see her toys below but she’s honed her skills using her hands. Nothing makes me happier than seeing Emma progress so rapidly in the last few months. I hope you get some inspiration from Emma. I know I do.
My amazing brother, Collin, designed a few logos for Emma’s blog and future foundation. We just wanted to get opinions on your favorite! Please let me know your choice (a-d) in the comments!
Thanks!🐻❤️
Emma hasn’t had a seizure since last Friday thankfully. I think it’s been easier for her to concentrate now that she’s not having them.
We worked with a switch toy with Emma’s speech therapist for a cause & effect reaction. We used her black foam board to block out the light and a black sheet on the floor. I used a box to elevate her duck so that it would be at eye level. With her CVI she has a hard time seeing things below eye level. This seemed to be the best position for her.
Emma pushed a button in order to make a duck light up and sing. She did it almost immediately. It never ceases to amaze me how much Emma learns and grows on a daily basis. She has overcome so much and we are so proud of her.
