Yesterday, Avagrace was standing at the back door watching our neighbor mow our lawn for us as I was washing strawberries for dinner, when Aidan yells "Mom, Gracie, her-thing-the seizure stuff" So I ran to her, asked him to grab a phone and call 911, he got scared and said he would ask Mr. Dennis to because we couldn't find the phone anyway. Not finding the phone is a never ending problem in this house, even though we have two landlines and a cell phone. I stayed with Gracie and helped to keep her airway open and her safe while my neighborhood pulled together to call 911, get the other kids out of the house so that they didn't have to see their sister seizing, and directing the medics, security forces, and fire trucks to where we were. The seizure lasted only about three minutes so we stayed home for the first time and didn't go to the ER (because other than oxygen they don't do anything there anyway) instead they gave her 15 minutes of oxygen and then I nursed her back to alertness and fed her when she woke up.
Three hours later it was bedtime. I allowed her to cuddle with me in my bed for a bit. However, I then told her it was time to go to her bed. I never want to do this but our neurologist said it is a very bad idea to allow the child to get use to co-sleeping due to the seizures because it will be a manipulation tool, and it could make the child fearful unnecessarily. It is also something that I have to deal with as far as not being worried. Lastly, he added to not let the epilepsy get in between our marriage. I understand his points, but, well never mind. I try to do this most nights. I don't want my kids to see me scared. But last night Bren wasn't home, he is deployed, and I just felt like she should be with me. Call it mother's instinct or God's quiet voice (that is what I call it). So four hours after seizure number one she shot straight up in bed and screamed and then slammed back with her hands curled up, her eyes rolled back, and her body seizing to the point of doing crunches. I had never seen her be so violent. Usually the seizures come across as tense straight as a board with tremors, jerks of limbs, etc. There was still the foaming of the mouth and not breathing. This time she turned blue. after 7 minutes I was able to maneuver her in a safe place so I could run to get her medicine to stop it and I administered it. She calmed but remained in seizing mode. She was able to take gasps of air here and there but continued seizing for thirty minutes until we got to the hospital. She was then unconscious, and I mean completely out of it to the point where that smelly stuff, standing her up, and shaking her did not wake her to even a grunt. She remained this way for nearly four hours. Thankfully she came to five minutes before they were going to do the CT scan.
This was by far the craziest seizure yet due to how violent and unusual it was. We are not feeling right about our current Neurologist so the ambulance took us to children's this time just to get a more thorough evaluation. I was blessed with not one but two amazing ER docs who recommended two things. One that we follow our instincts and go to the epilepsy center in Dallas or wherever because Gracie has a very serious case of epilepsy, per her EEG and her current state of health. Two that we start a gluten and dairy free diet in our home. So this is my next step.
When we finally got home and relieved Lindsey, my true God send that stayed with my other four most precious parts of my life, it was 3:30 am! I got Gracie to my bed, fed Liam, and laid down next to her only to see her seize two more times. Thank God that these two seizures only lasted a few seconds each.
She has had a good day and is sleeping next to me now. I can't wait until my best friend and parenting teammate comes home. Bren will be enrolling in school and working on getting excepted into a program so that he can expedite his future officer status so that we can be closer to better hospitals.
Something really amazing to me was that my lovely neighborhood came together both times to help with the seizures and their aftermath. They even made dinner for us tonight and are bringing dinner tomorrow. Each house made a different part of dinner and boy was it good! Then our friends from Bren's work took the boys out for a bowling date which was an amazing gift to my poor Aidan right now. He is six and carries the weight of the world on his shoulders. He is very upset that Daddy isn't home right now and he fears that Gracie will die. Unfortunately he has been the first to see Gracie seizing each time, until the second one last night. He slept through that one and THANK GOD!! And of course I already mentioned Lindsey and Joe who were here all night, made the kids breakfast this morning, and took Liam for a while today too. (Not to mention brought me Pink Swirls which I am eating right now lol).
Today I also was blessed with two lovely Mother's Day presents. Our friend Daniel stopped by because he is deploying on Wednesday and he heard what was happening around here so he brought a box of candies and a Mother's Day balloon. Then, Amy stopped by with a huge box of flowers from my amazing husband. I will try to post a pic tomorrow. They are the most beautiful roses I have ever seen, in a beautiful vase, and the roses are all different colors. They even came with a box of chocolates. It was great that he got Amy to deliver them too because I had not seen her since December because she has been deployed. I really like Amy and it is great that she is back!
So overall, it has been quite a day with TOO MANY seizures!