In October Addie started having seizures. It was, and quite frankly still is, the most terrifying thing we've ever had to deal with. I went in to check on Addie one night after Mike and I returned from a date and she was in the middle of one. I was terrified! We didn't know what was happening. She doesn't have grand mal seizures (basically she doesn't convulse when she has them) so we really had no idea what was going on. We decided to wait it out through the night and see if she had any more before we took her to the emergency room. That night she had 15 seizures. We rushed her to the ER and were told that it was in fact seizures and that she was having them because of an infection in her sinuses and her ears. They gave us an anti-biotic and sent us home. That night she had just as many seuizures. We were only seeing them at night and the doctors had told us that we might see them for a week or so until the infection was gone so we just tried to wait it out. Eventually they presented themselves during the day as well and Mike and I had a very strong feeling that they weren't happening because of an infection. We ended up taking her to Primary Children's one night to hopefully get some more answers. They weren't that helpful the first time we went but they did get us in to get an EEG right away. So on Halloween Addie had her first EEG. During the EEG the tech called a neurologist at Primary Children's and had them watch it live. Once they saw what was going on they sent us back to Primary Children's right away. Poor girl spent almost her entire Halloween in the ER. They diagnosed her with Epilepsy and put her on an anti-seizure medication and then sent us home with a follow up appointment for 2 months later. It was so frustrating! Two months! Are you kidding me? By then she was having between 20-24 seizures in a 24 hour period. I swear that doctors don't have a heart. Anyway, the medication they gave her wasn't working so they just added another one. The one they added can cause liver failer so she had to get her blood checked every two weeks. Finally after a lot of me calling and bugging the doctors, two more visits to the ER and me throwing fits (yes, I actually cried my eyes out and threw a fit while at Primary Children's neurology department. Why wouldn't they listen to me? I know my child! Something is wrong! The medication isn't working!!) they agreeded that she needed to have a video EEG. In December we spent two nights at Primary Children's so they could monitor her seizures and figure out what part of her brain they were coming from. It was the hardest 48 hours of my poor Addie Bear's life. Basically they told us she has Focal Front Epilepsy and her seizures are presenting themselves at absent seizures but they are actually partial complex. They added a 3rd medication. Our hearts were breaking. I can't even beging to tell you how drugged up these medications make her. It's horrible to watch. For the first few weeks she didn't even want to play, at all. Not at all! She went from a very happy, active three year old to a very tired, cranky and passive three year old. I cried every day. Several times a day. All day. Mike and I were staying up through the night so we could monitor her. I was 8 months pregnant. We were exhausted. Nothing can prepare you for something like this. I know how blessed we are that we still have our Addie Bear but it's so difficult to watch the change in her. She wasn't what she once was. She wasn't the same. The good news is, her body has somewhat adjusted to the medications and she's becoming her old self again. Also, we haven't seen a seizure in one month now! Hooray!! The doctors say that she has a 70% chance of outgrowing them and we pray every single day that she does. Until then, we watch her closely with an ever present fear lingering in our hearts and minds. I do hope to be able to sleep through the night again one day. We are counting our blessings and praying for improvement.
Another thing that happened....We welcomed Henley Rae Hover into the family on January 3, 2014. What a blessing and a miracle! Henley was born just at the right time. She has brought the sweet spirit back into our home and has really been a great distraction for all of us. We love her so much and feel so very blessed to have her in our family!
I'm going to try harder to update this blog. Not that anyone reads it, really.
