One year ago... a simple would-be headache changed our lives forever...
One Sunday night Macie was complaining of a headache. We didn't think a whole lot of it, I gave her some children's tylenol and we waited a while. She started screaming in agonizing pain and was saying the pain was coming and going, kind of like a wave. We immediately became worried and took her in to the ER since it was a Sunday evening and nothing else was open. They performed a CT Scan and assured us it was probably just a migraine, gave her 2 doses or morphine and sent us on our way. The next morning she was fine, until she started puking from all the morphine they gave her, so she stayed home from school for obvious reasons. The next day she was great, went to school and came home acting ok. She went downstairs to play and ended up falling asleep on the floor watching TV waiting for dinner. I woke her up to eat and she started acting really funny. She said she didn't feel right, we were watching her like a hawk and noticed immediately she could not gain control over her left hand/arm to eat dinner (she's left handed). She started slurring her words together and it scared us to death, we called our mom's for advice and took her back into the ER.
Once we got there the Dr decided almost instantly that he didn't want us being treated here as there is no pediatric neurologist in our town and the closest one was at Children's Mercy Hospital in Kansas City. So away Macie and Gerrad went in an ambulance with my father in law and I following directly behind. We weren't sure what was going on and had NO idea what the Dr thought it could be. All he told us is that he did not want to perform another CT Scan on her, too much radiation, so he wanted us to be seen by the experts. Gerrad was my rock, he stayed calm and reassured Macie everything was going to be OK. Me on the other hand, I was a hysterical mess. I had all these terrible thoughts running through my head and couldn't control them, I just kept praying, begging God to protect my first born.
We arrived at Children's Mercy late at night, around 11 or midnight and got Macie situated in a room in the ER. She was acting better but couldn't walk too well and still said she felt a little 'funny'. They examined her and decided they wanted to do another CT Scan, this time I went back with her and stayed by her side, I had pulled it together by then. They didn't find anything on the scan this time again and weren't too sure how they wanted to proceed from there. They decided to admit us and perform more tests on her the next day since we were well into the middle of the night. They gave us a room and made us a comfortable as possible. Thankfully my mom volunteered to stay with Addaline at our house so we didn't have to worry about who was taking care of her for the next few days.
Wednesday they performed an EEG on Macie to check and see if they could tell anything from that. They were able to give us an answer about the headaches... she had mild seizures, which would explain all her other correlating symptoms followed by the 'headaches'. They explained to us the area of activity in the brain that this was taking place was one that controlled her fine motor skills (why she couldn't control her fork to her mouth that night), her behavior and her speech. We only noticed one specific time in the hospital where we thought she had another small seizure, my mother in law, sister in law, Macie and I were sitting down to play a game of Hi Ho Cherry-O and Macie could not seem to grasp the cherries and put them in her bucket. It broke my heart to see my daughter like that. They explained to us that afternoon that they wanted to perform an MRI to make sure there was nothing causing the seizures, as there are many cases where children have an underlying issues causing them to seize (brain tumor). We Spent the next 24-48 hours praying that God would protect our daughter during this test and all would come out OK.
They performed the MRI Thursday evening and weren't able to give us the report until rounds on Friday morning. Thursday evening Gerrad and I just needed to get away for an hour or so, we went down to the cafeteria at the hospital and just cried together. We heard the words brain tumor and couldn't get them out of our minds. We knew we would get through it no matter the outcome, we just needed a little time to break down, away from our daughter. We pulled it together and headed back up to hang out and play games with Macie. They gave us the report the next morning... and all was great, there were no underlying issues causing the seizures! They put Macie on medication and gave us LOTS of instructions, and things to watch for. Her seizures were not pronounced, such as a grand mal seizure is, so we had more specific things to watch for. They gave us the idea to write down any suspicious behavior that we saw so we could go over the notes at her follow up appointment 3 months later.
I'm SO happy to report that we have NOT had to write ANYTHING down in the 'seizure notebook' and Macie is doing wonderfully! We had her follow up appointment in February of this year and said she is doing great, no symptoms or problems we had to discuss so we were pretty much in and out. She has to stay on the medication for 2 years as maintenance, and then we can revisit the idea of going off the medicine and seeing how she does. Every day when I give her medicine in the morning and at night, I'm reminded just how lucky we are that was all that was wrong with our daughter one year ago. There were so many children there who weren't as lucky as Macie. We were so lucky to have the love and support of our wonderful families and friends to help get us through that, THANKS again every one, we will never forget how much you mean to us! Now our 7 year old daughter is a growing, caring, compassionate, loving little thing with a side of sassy-ness to go with it, and I wouldn't trade her for the world!!