Emmi's diagnosis

I heard a saying today that I instantly loved. “Being excited for tomorrow is almost like being disrespectful to today.” I love that because it is so true. None of us are guaranteed anything except for the moment we are in. You never know when life will change.

The beginning of May, Emmi was having a normal day. She wasn’t sick, she had no signs of not feeling well, just a normal day. I had to work and my mom was keeping my girls. Emmi played while I was getting ready and was running around laughing at Landry. We took Landry to school and then Emmi and headed over to my mom’s. When we got to my mom’s she was acting really tired so I told my mom to put her down for a nap.

I left and when I got to work, I hadn’t even turned on my computer when my mom called to tell me that Emmi was acting strange. When she told me what she was doing I knew instantly that she was having a seizure. I left and went home as quick as I could. When I got there Emmi was sleeping. She rested on my lap for a while and then woke up and started acting weird again!! She was having another seizure. I called our pediatrician and he told us to come in so he could check her. She had had seizures in the past, but they had been when she was sick and we had attributed them to being febrile seizures. 

I called Brady and he told me he would meet us at the Dr. When my mom and I got into Dr. Havlik, he couldn’t see anything wrong with her. So he sent us home and told me to just watch her and we would follow up with a neurologist and an EEG the following week. We made it home and fed Emmi some lunch and she went back to normal. I still had a client who’s house I had scheduled to clean that day so I figured I would go do that since Emmi seemed fine. My Grandma had gone to get Landry from school so she said to bring Emmi up and she would watch the girls while I cleaned.

We got to my Grandma’s and Emmi started acting funny and had another seizure! Dr. Havlik told me to take her to PCMC ER. My mom had just walked into my Grandma’s so I told her I wanted her to ride in with me again because it scared me to have Emmi in the backseat alone when that is happening. Brady was waiting at the entrance for us. We went in and thy got us back to a room and ran every test they could to see if they could find anything that might be making Emmi sick. Of course, she perked right up and was completely fine and normal! (she’s a turkey) They released us as long as we promised to keep the follow up appointment with Neurology. 

We met the Neurologist and she thought that Emmi’s symptoms didn’t align with febrile seizures so she wanted to do an MRI to be safe. Brady and I agreed that would be best so we could get definite answers as to why these were happening. The day of the MRI was kind of hard, it was sad for us to watch Emmi be sedated. She did great though, she was happy to sit on my lap and watch work out videos (she’s weird). When she started to get tired from the meds, she wanted Brady. She snuggled up to him and went right to sleep. Then they made us leave while they put her into the machine. When she came out and woke up, she was as happy as could be!

A few days passed and we hadn’t heard anything back form the Neurologist so I figured the “No news is good news” statue stood. After the weekend had passed, I figured I would call to check because I didn’t want to wonder. The Neurologist called me back and told me that Emmi has a disorder called Dysplastic of the Corpus Callosum. It’s where she has a malformation of the center part of her brain which is what has been causing all of her delays and seizures.

This is something that we don’t know how it will affect her in the future. Really, anything with your brain the answers are always “we have to wait and see” but I have high hopes for little Emmi. A lot of kids with this disorder don’t walk until they are 5, and Emmi has mastered walking and running! Emmi doesn’t say a lot of words, but she is pretty good at relaying what she wants and she is trying to form more words. Right now she says about 6 words, but were starting her in Speech therapy in a few weeks. She is very determined to do anything that Landry does.

Speaking of Landry, she has been so good with Emmi. Emmi can be a bit overbearing with Landry, she is always in the middle of whatever she is doing, and she always wants to be crawling all over Landry and I am sure it can get a bit frustrating and overwhelming for her at times. Landry has never yelled at Emmi or left her out, she always plays with her and 98% of the time she shares what she has. She loves to make Emmi laugh and she has all the patience in the world for her. Sometimes, Emmi will sit and hit Landry in the head with a brush (because she thinks she is brushing Landry’s hair) and Landry will let her. She never gets mad at her. Landry will never know how happy it makes me to know that she watches out for her sister the way she does. Landry knows something isn’t right with Emmi but she loves her regardless.

 I hope that Emmi knows that she is so loved and no matter what life throws at her, she has a family who supports her no matter what!