Aspen has seizures. She was having them every 6 months. And then she wasn't. Then she had them every 2 weeks and then she immediately went to having them every 1-2 days. She had a big one on 12/26 and we left the next day for Jackson Hole, WY. What I didn't know: elevation, illness, and fever lower your seizure threshold. Did you see that first one? Elevation. Yup. She started having seizures almost every day and it was so scary.
I called every single day to try to get us into CHildren's Hospital. I even called our old neurologist (who I didn't trust) to see if we could get her to order an MRI. Mom instinct said that something was VERY wrong. I took phone calls in the middle of ski runs and on the gondola. I called my pediatrician every day. I asked if we should come home? Or get an MRI in WY? Or get blood work done? WHAT DO WE DO?! I can't sit on my hands and wait. "Just sit tight," came the reply. Sit tight That means get every referral for every neurologist you can think of and call them.
So, I did that. I mean, I "sat tight". The nearest appointment i could get was with a dr. at UCLA for February 11. It was January 3rd. How many times would I have to hold Aspen, while she seized, before February 11th? And that was just a preliminary appointment! That wouldn't give me any answers. So, I sat tight again. Right. I got more names. I sat on the phone calling 6 doctors on Friday, January 10. The 5th doctor was a referral from my pediatrician. He was going to be out of town and referred us to a doctor who had just left their group practice. As we got off the phone, the receptionist said "Tell them our practice sent you and ask for an urgent appt." Tell me twice.
So I called this doctor at 4:45 on a Friday afternoon. Guess what?! She had a cancellation for 9 am on Monday morning. I felt the love of our Heavenly Father watching over me. She had rights at Miller's CHildren's hospital - which wasn't the hospital I was initially trying to go to, but it's a great hospital. Furthermore, she did 2 fellowships: one in pediatrics and one in seizures and epilepsy. She is a dream come true.
We flew home on Saturday and were ready for our appointment on Monday morning. This woman was a Godsend. She's a little older than me, and has a 3 yr old and a 1 yr old girl. She very easily could have pictured herself in my shoes. She put Aspen on medicine (thank GOD) and ordered an MRI. This was my next hurdle.
The closest MRI was March 18th. I cried. February 11th, they said. I cried. I called back everyday for 4 days. "Ok. We can create an appointment for you on February 3rd." February 3rd. I called the doctor to ask if they could get me in sooner. Pull a string. Something. The nurse says "February 3rd is only a few weeks away." She doesn't have to hold HER daughter while she seizes.
I called the doctor the next day. I bypassed the nurse. "She's not tolerating these meds." The doctor agrees to change the meds. "While we are on the phone, can you get us in sooner than Feb 3rd? I can't wait that long." And this doctor, bless her heart, said she could admit us and order it from within the hospital.
After several more phone calls, she admitted us on Wednesday at 12. Aspen had a 24 hour EEG and was voted the best patient in the hospital to ever get an EEG. She is a wonderful patient. Then she had the MRI on Thursday. The thing about giving a 3 yr old an MRI, is that they have to be sedated. This is why it's a big deal. The "sedation team" has to be there. They don't work weekends and they only work 2 mornings a week with children. We found a loophole. We got the sedation team. We got out answers. Despite the fact that the doctor was virtually certain that she had a "cortical abnormality", her EEG and her MRI showed no abnormalities. This is the best possible news. We don't know if she will outgrow this condition. It's common that they do. Sometimes they don't. At this point, she will be on meds for 2 years and then we will take her off the meds and see if she has a seizure. Wonderful, huh? There are no long term side effects of this medicine and she tolerates it just fine.
So what did I learn? I learned a few things.
1.) Who cares? Who cares if my house is clean? Who cares if dinner is perfect? Who cares if the laundry is folded and put away. Maybe I will remember how close we came to having a daughter with a "cortical abnormality" and I will spend less time cooking, cleaning and doing laundry. Instead, I will spend more time doing puzzles, tickles and make believe. I struggle with this, but I got a reminder. These little people aren't my little people forevermore.
2.) Advocate. Who will take care of these people if I don't? It is my job. I am their advocate. I am their advocate. I said it twice. It is my job. I take care of these little people, and as such, don't f*ck with me. I will get them the MRI when I want it. I will get blood drawn when I need it. I will see a doctor, if that's what I think they need. Further, and on extension, if a kid isn't nice to my kid, they (or their mother) will hear from me. If a teacher isn't fair to my child, they will hear from me. I am fiercely protective and ridiculously in love with my children. I will take care of them until my dying day.
3.) Aspen is STRONG. Aspen is amazing. When she doesn't want to take her medicine I say "I won't fight you. You don't have to take it, but you will have a seizure." She always sighs and says "I will take my medicine." She handled 24 hours of sitting in bed with a turban full of glue and EEG leads on her head, like it was her job. She is a little boss. She impressed every doctor and every nurse with her strength and inner calmness.
4.) I am lucky to be the mom of these children. Each and every one of them handled this like heroes. My little heroes. I am the luckiest mom in the universe.
5.) I am so blessed. The community here, and not just my church, pulled together. Everyone who knew what was going on (which wasn't a ton of people) pulled together. They passed my children around, did playdates, dinner deliveries, and were just all around awesome. I am so blessed to be a part of a community where people care about one another.
6.) My husband is awesome. He had a HUGE deal going on this week. He paced the floors at the hospital, keeping me company as we spoke to doctors or sat there endlessly trying to entertain a bored 3 yr old who couldn't get out of her bed. He slept over at the hospital with Aspen. He is an awesome Daddy, but he is fantastic as a husband who helped take care of this little girl. Another way I am blessed....
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