Emma has really been hit hard lately. She had a shunt revision in February, norovirus in March and the flu and ear infection in April. Her body just couldn’t handle it anymore and the seizures finally won. Tuesday night Emma had breakthrough tonic clonic seizures that landed her back at Nemours. My poor baby can’t catch a break. Her life and mine are exhausting. I feel helpless and there is nothing I can do to change this. I am slowly feeling defeated and less optimistic about our future. The realization that this is our life makes me feel as if I’m in mourning. No, thankfully Emma is ok but any sense of normalcy of what I thought life would or could be, is dead. I’m absolutely terrified to go on vacation or leave Emma alone with anyone but her nurse. We can’t go to dinner or the movies. Emma’s medical diagnosis’ prevent our entire family from being “normal”. Emma has made me and my husband better people but at the end of the day I didn’t sign up for this. Emma didn’t and neither did her two sisters. I can’t help but resent anyone who has a different life than us. Anyone who can go out to eat as a family or take a trip to the beach without weighing the pros and cons and always concluding that there are more cons. It’s not worth it. This is not fair and I know “it could always be worse” but why should it? Why should it be worse? Why can’t I say “it could always be better!”? For anyone who resents their life sometimes please know you’re not alone. I love my daughter and will and have always done anything I can for her but that doesn’t mean I can’t help but dream about what life would be like if things were different. Just for a moment. Just while I sleep.
Category: Children with disabilities
Weighted Blankets
Weighted blankets can work wonders for children with sensory issues, anxiety or issues with sleep. The purpose of a weighted blanket is to spread weight evenly across the body, mimicking the soothing effects of a hug. It reduces stress, improves mood and can promote sleep.
Although they work for some kids, not every kid will experience the same benefits or results. There is no guarantee of success.
The lap blanket is more convenient for car rides, mealtime and even at the dentist! I use my daughters during medicine time to help keep her relaxed. The larger blanket can help alleviate some of the anxiety a child feels when getting a haircut or sleeping and it can have a nice calming effect.
We also offer a longer shoulder weighted blanket that can double as a lap blanket. You can drape it over the shoulders, putting a nice pressure on them to help relieve stress and anxiety. It can also be folded in half and used on the lap. These types of blankets work great for school-aged children that have a hard time in class.
Weighted blankets vary in size depending on your individual child. The weight is generally calculated up to 10% of the child’s weight. The large blanket starts at $100, lap at $45 and the shoulder/lap blanket starts at $55, depending on fabric and size requested. Please email me at emmabearorg@gmail.com for further questions or to place an order.
BLANKET CARE:
Each blanket is hand crafted with love and care. We inspect each blanket carefully but if you notice any holes or tears, please remove the blanket from your child and contact us immediately to resolve the issue.
All blankets are filled with poly-pellets. They are a non-toxic, hypoallergenic, washable weighted bead made in the USA.
Please be sure to wash your blanket in cold water and hang it to dry. You can tumble dry on low for a few minutes to “fluff” it.
SAFETY GUIDELINES:
*Please consult with a qualified medical professional, such as a doctor or occupational therapist to ensure that a weighted blanket is appropriate for your child. You can also consult them in regards to the amount of weight appropriate for your child.
*As a precaution, weighted blankets aren’t typically recommended for children under the age of 1 or who can’t remove the blanket from themselves without assistance. Once again, please consult a professional before ordering.
*Never let the blanket cover the child’s face/head. Remove immediately if there is any discomfort or distress. The blankets are NEVER to be used as a form of punishment.
Thank you so much for your interest!
Below are some children who have had success with our blankets. 
Emma Bear’s Day: A Children’s Book
Emma has cortical visual impairment and we have had a difficult time finding books that were suitable for her, so we decided to create our own children’s book for her and others to enjoy.
Join Emma and her friend Lucy the Bunny throughout their day of fun! Our book is great for children of all ages. The adorable character of Emma Bear will sure to be one of your kids favorites.
It has been suggested that high contrast images can be easier for kids with vision issues to see. Our books have blacked out backgrounds to increase contrast and reflective circles throughout. Details that could make seeing the characters easier for your child. Our book is filled with simple characters and bright colors.
To order your new Emma Bear book, please visit http://emmabear.bigcartel.com. (If outside the US, please email me directly at emmabearorg@gmail.com).
Thank you so much for your order!!❤️❤️
Chewing issues?
Emma is at the point where she puts everything in her mouth. She is constantly chewing her fingers and toys. I found these awesome new chew toys for oral motor skills plus they stop her from chewing things she shouldn’t. They’re from a company called Ark Therapeutic. All of they’re products are made in the USA and are great quality and price. They have wonderful and friendly customer service as well. Check them out!!
https://www.arktherapeutic.com
Hydrocephalus bracelets! Great holiday gifts for a good cause!
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! Please visit http://emmabear.bigcartel.com to place an order.
THANK YOU!
“I’m feeling overwhelmed”…is an understatement.
Do you ever have days where you just feel like you’re going to explode? I don’t think I have any tears left to cry. I feel like if someone looks at me one more time with pity or sorrow I’ll burst. It breaks you and I am not as strong as everyone wants me to be or believes me to be.
The sheer force of stress I’m experiencing and overload of information in the past 3 days is purely indescribable and this is only the beginning.
I want people to understand how I feel and what I’m going through but truth be told, you can’t. Unless you’ve watched your child get stuck with a needle for an IV multiple times to find the right vein, you can’t. Unless you’ve had to watch your child scream and thrash as a nurse shot liquid sodium down their throat, you can’t. Unless you’ve had to pin your child down to prick their tiny toes to test their blood, you can’t. Unless you’ve had to weigh and measure every ounce of liquid and every gram of food/medicine your child consumes, you can’t.
Truth is, I envy you. It’s as simple as that. I would give anything I could to not know what any of this is like. I thought once we were past the NICU and the shunt surgery and the cranio surgery we would be done. I thought the medicine would stop the seizures, it didn’t. I want to cry and run away and curse whatever God I believe in for all of this. How did we get here? Why are we here, at this point? What did we do to have this life? Why does Emma have to suffer and go through any of this? She is innocent in all of this and yet she is the one that must suffer. I don’t understand it. I don’t accept it. I hate it. And I’m jealous of anybody who has not experienced the pain I’m feeling and the sadness and hurt in my heart for my little girl.
People keep telling me we had Emma for a reason and she chose us as her parents. I want to believe that and I know there are children that have it way worse than Emma but can we catch a break here? Can my kid have just a moment of some sort of normalcy? I just want her to know what that’s like. Is that too much to ask?
Seizures are rough
Emma’s been taking her max dose of Keppra for over 2 weeks now. Since Sunday, she’s been having 30-40+ seizures a day. The most she’s ever had daily since they started in May. I feel awful for her. We need to get this figured out. I’m hoping after her neurologist checks her blood levels we can adjust back down to a lesser dose. We are also on track to start her Keto Diet next month. There are so many things that go into that as well and it’s a tedious process just to get admitted to the hospital. Trying to stay optimistic because we need this diet to work. I don’t want to introduce any new meds. I just don’t feel like it’s the best thing to do for Emma. I’m feeling very overwhelmed and stressed about everything. I wish Emma didn’t have to go through any of this. It’s so sad but she is amazing and is still progressing despite all of the seizures and setbacks. She’s truly inspirational. She is the reason I want to be the best mom I can be.
Therapy platform swing
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.
September is Hydrocephalus awareness month!!
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!
Quick story of the kindness of others❤️
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 Bear's Journey 