The kids had today off for teacher in-service and Veteran's day. But we still had to wake up early; we had to drop dad off at the airport so he could fly back to Nebraska for his annual hunting trip. We hate to loose him, especially with the day we have planned, but we know how much this means to him. After dropping dad off at the airport bright and early we made our way over to the next stop; Phoenix Children's neurology department. It was time for Jayen's check-up! We love seeing Dr. Jarrar. She was very impressed with Jayen's nearly 2 years seizure freedom and was ready to let us start coming off of one more medication. We talked that Jayen will forever and always been on something, but we would like to get down to the minimal "something". Keppra seemed to help the most, so we will leave that one alone and start weaning the Clorazepate. It was a great visit and the kids did ok for only having one parent keeping an eye on them. Thankfully Dr. Jarrar used her mommy voice on Brilyn and she was good after that! Onto the next stop.
I had ordered Jayen's spio months ago but apparently there were issues in the company's office that caused the delay. We were supposed to go in to pick them up and do a fitting. Immediately when the therapist walked into the room I could see another problem with the order. The spios came in black. We had requested blue because we live in Arizona and black would only attract more heat. After many apologies we left without a spio. But I had better things to worry about.
A few months ago I wrote a grant for AZANOW to receive tickets to the Polar Express. Just last week I learned that we were granted 50 tickets. We wish daddy could have gone with us, but the late notice left him no time to change his flight. That's ok, we can have fun without him. Except, this left mommy to drive up and down the mountain by herself. Not what she calls fun! We left early afternoon and were able to follow Kerrie, Conor, Mandi and Brittney. It made the drive a little easier. We watched the movie Polar Express in the car on the way there, had on our matching pajamas, and were ready for the conductor to yell, "All Aboard!".
On board our tickets were punched furiously as in the movie, we were served hot chocolate and cookies and sang the song reminding us to never ever let it cool. It was so fun being on a real moving train with so many friends! Kerrie, Conor, Mandi and Brittney sat right across from us. Erica, Enoch and Bo were directly behind us and Becky and her boys were across from them. There were other families we knew from events and therapies as well. The train slowed as it approached Santa's village. He was outside waving to all the kids and as we were ready to make our way back to the station, Santa himself boarded the train and handed out bells to everyone. The kids immediately started ringing their bells to make sure they believed.
No comments:
Post a Comment