6:41am, I am up showered, dressed, making coffee. I told Tony I'd wake him in 10 minutes so he could get ready. We are going down to one of the pediatric neurologists at Arnold Palmer for evaluation and then to make a plan for treatment. Our appointment is at 9:45, it is about an hour away.
Yesterday was a wonderful day. Sophi and Troy played outside for about 3 hours before nap time and it was great watching her run and jump and scream and dig in the dirt. We are so very blessed. A lot of times when children have as many seizures as Sophia has had they also have lots of developmental/behavioral/physical delays. When I talk to someone on the phone about Sophi's medical history they will ask me about her developmental level- I'm so joyous and thankful to be able to say that she is meeting every milestone and then some. :)
We still have some difficult moments, as I am sure most parents of children with epilepsy will find. She was very afraid yesterday. She was nervous that she was 'going to have one of those headaches again' It is hard to explain this to a child. We do the best we can and use resources when they are available to help explain it to her, but yesterday even our normal explanations of what happened were frightening to her.
Tony and I were talking after the kids were in bed, about Troy. Troy just slept through the whole ordeal. The fire trucks and ambulance (all which where right outside his window), Sophi screaming when they pricked her foot for blood sugar test, all of it. We wondered about how Troy will handle all of this when he is older and doesn't sleep through an ordeal. Will he be scared? We have read a lot about the affects of epilepsy on the family, siblings, parents, grandparents.. I wonder how Troy will handle all of this. As it does affect us all. Troy wandered around the house yesterday morning. He knew something was wrong. Sophia was suffering from a terrible headache and was laying in the dark in my room with Tony. Troy was playing quietly by himself. I was on the phone making doctor appointments and trying to get in a functioning mode. And all the meanwhile, there was Troy. Quiet and content playing with his racecars. He occasionally would walk over to me and show me a car and then walk back to his racetrack. Sweet boy.
We really did think that she was growing out of this, and she could be, but we didn't expect this seizure. We really didn't weren't expecting it. My friend Kelly said, "you just weren't in epileptic mom mode." Sounds funny, but there is an 'epileptic mom mode'. Having the medication a finger tip away, knowing where the clock is to time the seizure, checking every sign that you know to check to make sure your child is ok, remembering which direction her eyes were looking. This is all part of 'epileptic mom mode'.
Tony installed a new video monitor in her room last night. In her search for independence she broke her last one. She blamed it on Troy and said that he didn't like that 'Sophi Movie'. I always called it a monitor and she would scream 'no it's a camera!' Oh, independant child.. Sophi was very nervous watching him install a new monitor she would yell for him to 'get out of my room with that'. We watched her on it and for a while she stared back at it. I'm surprised she wasn't waving and sticking her tongue out at us.
She was scared to go to sleep. She cried and said she didn't want to firefighters to come again. She didn't want all the cords on her. She said she didn't want the doctor in the hospital to choke her again (I don't know why but they did a strep test - and it made her gag). I told her we were going to the doctor in the morning and she was really upset about that. She used to love doctors and visiting the office and the hospital- I guess three years of seizures, tests, and doctors would do that to you. I stay positive to her and encourage her but really I feel the exact same way she does!
Oh, here is a really sweet and funny thing to end this blog. Sophi was really attached to her pacifier yesterday (as she is everyday after a seizure). I was so glad that the 'boogie fairy' didn't come and take it away yet. We all needed her to have it this time. Anyway, she was laying on the beanbag watching Bindi the Jungle Girl and Troy was laying on top of her, staring in her eyes, then he'd lean over and kiss her pacifier. Over and over and over and over again, he would lean back look in her eyes and lean in and kiss her. She said "he's kissing my boogie!"
Holly, I am so sorry that you all have to deal with these nasty seizures. I think explaining things in very short detail but honesty is the best approach to Troy dealing with it. He is dealing with this as a family as you all are, not alone. It is sad that our kids have to deal with such a tough reality so young, but they are soo strong and they know and understand more than we could ever imagine. Let him be a part of it like you have and he will be just fine. I know when Paige gets her migraine's, she knows when they are coming now and she hates that they put her under. The last time she was actually questioning why God made her like this, it was sad to hear her talk like that, and I am soo thankful that they don't happen very often, and I reminded her that she was very lucky that this only happens very rarely cause some kids/adults get them all the time. You guys are awesome and I hope for the best with the doc appt!
ReplyDeleteLove you guys!
Tami