This morning we had our follow-up with Dr. Frost. We weren't really sure what to ask or what to expect since it has only been two months since we last saw him.
Jayen found a new water fountain to make wishes in. Mommy remembers when we started this journey at Children's Hospital in Omaha. Every time we went to the hospital Dalan would throw money in the fountain and say, "Make my brother all better." We even had a wishing well at Jayen's first birthday party to honor this tradition. So, when it came to this fountain we spent a little extra time just being there!
Dr. Frost answered our few questions and gave us some ideas of what to expect for a couple different scenarios after the PET scan tomorrow. We are unsure what Jayen's future holds. Our concerns about his impulsive behaviors were addressed. Dr. Frost talked to us about putting Jayen on Ritalin. I'm so not sure what to even think about this yet. Obviously the stigma about the medicine is in my mind, but I know my son and I know how off the wall crazy he is. I think we are willing to try it, but it is still a discussion we need to have.
We left the appointment with a new prescription and instructions to increase his Onfi. Tomorrow is the PET scan and hopefully a few more answers.
After the appointment we had the rest of the day to play! Every time we drive to Minnesota we are stuck in the hospital or only have a short amount of time and can't enjoy our time. Today was different!!!! We took full advantage of our time!
We had lunch at the Rainforest Cafe!
And made sure to order dessert!!! Dirt pudding with a few worms!
Since we only had one kid we were able to afford an all day pass. And we took full advantage of that too. I can't even count how many times we rode the rides. My feet hurt from just chasing after Jayen!
He obviously need driving lessons!
We happened to be at the right place at the right time. Santa was walking through the Mall and walked right beside Jayen. His face was priceless!!! He even scored a high five.
Mommy and daddy got to enjoy a few of the rides too as a chaperone. We spent the whole afternoon riding the rides from lunch to dinner. Dinner was so interesting. Mommy suggested we try Dick's. Jayen fit in so well here. He could scream and no one stopped to stare. He could throw his food and make a hug mess and he fit in with the rest of the crowd! We all enjoyed the sarcastic humor and had some good laughs!
How fitting!!!
Jayen's had said For Sale. I totally agree, but I'm sure it wouldn't last long. They would eventually return him! Love my Mayhem!
Mommy and daddy sporting our Infantile Spasms shirt! When we got back to the hotel we swam for a little bit then enjoyed popcorn and m&m's! Loved my day with the boys. Nervous for tomorrow though. With all the fun we had, it was still always in the back of my mind.
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