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Children with disabilities

Lighted tray

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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Eyes wide open

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❤️

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The Keto Diet

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. 

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Sitting.. up up and away!

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. ​

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Cause & Effect

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. 

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Dreaded “S” word😓

I noticed Emma’s been making this startling motion the last couple of weeks. They’re completely infrequent and nothing brings them on. Her OT and vision teacher noticed them as well last week. They mentioned the word seizure and said I should call her pediatrician. Long story short, we went to neurology today for an EEG and unfortunately it was abnormal. Emma has epilepsy and she’s been having myoclonic seizures. How utterly devastating for my daughter to now have another obstacle to face. I am beyond upset and don’t think I can cry anymore. We are going to start her on Keppra and slowly up the dosage over the next few days in hopes it makes the seizures subside. 

I know Emma has no clue what’s going on or what is happening to her but as her mother to have to know that any seizure could cause her brain damage is terrifying. I’m going to stay optimistic because Emma is the strongest little girl I know. Just another roadblock in our journey but we will face it head on and get around it, like we always do. 

The best part about today is that as I was driving home from the doctor and I got into the neighborhood I absolutely broke down. I started sobbing uncontrollably and out of nowhere I hear Emma’s infectious laugh. I look in my mirror and there she is in the backseat cracking up. Lo and behold, she’s laughing at me crying. She thinks it’s funny. It was amazing to hear her laugh so hard and couldn’t have been more perfect. It made me feel so much better. Once again, just proves how amazing Emma is♥️😍

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A look back at surgery 

I recently stumbled upon a note in my phone I had completely forgotten I had written. Probably because it was 4 days after Emma’s craniosynostosis surgery and I was sleep deprived and a basket case. These are completely real and honest thoughts I had. I’m only sharing them because maybe someone else has had the same thoughts and felt alone. You’re not.😓❤️🙏

Today is..stressful. Emma had her Cranio surgery on Monday and we’ve been in the hospital all week. I’m beyond exhausted and stressed and overwhelmed. People tell me that Emma picked me as her mom because I can handle all of this. I’m only one person. I can only handle so much. I’m so stressed out all of the time. I love Emma more than anything in the world but sometimes I don’t think I’m as strong as I need to be. Why is this fair? Why does Emma have to go through all of this awful stuff. What 10 month old deserves this? I would give anything to trade places with my daughter. Literally anything. My heart explodes into a million pieces when she is in pain. I wish she didn’t ever have to experience any pain like this. 

To this day, I still feel responsible for Emma’s hydrocephalus. If it was the anti nausea medicine that caused it then it’s my fault for flying and my fault for taking the medicine. Why didn’t I just deal with the vertigo. Emma would have. She is much stronger than I am. I admire the hell out of my baby. There are grown adults, including myself that would never be able to go through what Emma has and turn out as amazing as she has. 

I have so much love for this baby it hurts sometimes. I cannot imagine my life without her and am so very grateful that I didn’t have to. I just wish there was some way to not have her experience anymore pain in her life. She doesn’t deserve that. Not that any baby does. She finally fell asleep around 8:45 after fussing for hours. Her drain keeps tugging on her skin and she can’t get comfortable. I want to cry every time I look at her. I swear, sometimes I don’t think I’m strong enough to be this baby’s mother. I had to leave the room and go into the bathroom to cry after she finally settled down. I may have gotten 10 hours of sleep in the last 4 days. I’m sleep deprived on top of all this. My husband can’t begin to understand what I’m going through right now or this entire time. I don’t blame him, most people couldn’t possibly understand. He didn’t have to carry her for all that time knowing there was something wrong with her. He didn’t feel her kicking or hiccuping or moving inside of my belly. 

I honestly don’t know how I could ever love another human as much as I love my daughter. That makes me nervous to have another baby. How could I possibly focus on making Emma the best person she can be if she has a little brother or sister I need to care for? Emma’s amazing but she still needs constant therapy and extra attention. I would feel guilty trying to raise another baby and give Emma everything she needs from me. 

That’s it for now. Emma is getting her drain out very early tomorrow morning then they will monitor it for a few hours before they discharge her. Her incision looks great and her swelling isn’t terrible. She’s the most beautiful, amazing soul I’ve ever met. I can’t wait to see what this surgery does for her progress and development. 

How did you handle your child going through and recovering from surgery? How do you have another child once you have one with special needs? How do you give them the best life without giving them all of you?

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Sleeping..or lack of

Emma hasn’t slept through the night since before her craniosynostosis surgery. It’s awful and I don’t know how to get her to sleep through the night. She wakes every 2-3 hours to nurse then falls back asleep. She never actually stays down for more than a couple hour stretch. We get like 6-7 hours once a week but that’s about it. 

Has anyone had this issue or have any suggestions?