Jerry had a first this past weekend, and if you follow me on Facebook or Instagram, you likely saw all the pictures and heard about our proud moment...attending his first social event with his peers.
His school, the Impact Academy (which recently won Best of Tampa Bay 2017), hosted a dance, Hollywood theme style. And they went all out for the kids, from a red carpet and paparazzi taking pictures and making them feel like stars as they entered to a DJ, and top notch decorations and snacks.
Jerry wanted to go the first day he brought the flyer home from school. Better yet, he wanted his sister Michaela to go with him as his "date." And of course, she said yes. Here they are decked out for their big night.
And they had a BLAST! We dropped them off at 7 pm, never thinking Jerry would make it until the end at 10. Mick was told to text us when he said he was ready and we walked around Ybor City where the dance was waiting for that text. It never came. We went to dinner, walked around some more, stopped for dessert. The only texts from Micky were ones of how much fun her and Jerry were having.
Finally, we returned to the dance about 20 minutes before it was scheduled to end. And he was still going strong! Mick got video of him singing and dancing his little heart out. By the time the night ended, he was sweating up a storm and exhausted. He literally fell into bed when we got him home.
I am not sure what melted my heart more...the fact that he took this monumental step in his development or his sister's huge heart to give up her Friday night to go with him...and happily! I am not sure which of them was honetly more excited! She has always been compassionate towards Jerry and others with special needs, as seen in her 11+ years as a buddy in Buddy Baseball, but this was different.
It has been a long few years with Jerry, behaviorally speaking. And his sister has been the recipient of much verbal and physical aggression from him. She's shouldered her share of the bruises...literally...that's for sure. Still, she loves him unconditionally, has grown in patience and selflessness through serving him, and is Jerry's favorite babysitter. She is also the only one of his siblings who will jump to our rescue and aid in cleaning up midnight vomits, changing wet sheets, and now bathing him and changing his G-tube gauze. Love that girl. God has big plans for that heart of hers.
Anyway, stay tuned for more updates and lists of firsts for Jerry as he continues to grow and mature and reap the benefits of his new medicine (medical marijuana) and diet (SCD).
It's been a while since my last update, but there is a reason for that. I was waiting to see how Jeremiah's new medication worked before I posted.
Now I know that some of you may be questioning why on earth we would put Jeremiah back on medication when he was finally weaned off everything else. But remember, Jerry stopped his epilepsy medication on his own back on January 1st. Since he has never gone more than two months off his epilepsy medicine before having a hospital-admitting "doozy" of a seizure, it was definitely a concern. While we were in the hospital this last time, I convinced Jerry that it would be best for him to restart his seizure medicine so that he wouldn't have to go back into the hospital for a third time in a year. Thankfully, he agreed.
I called Dr. Foradada and we discussed his options. We decided to try a more natural approach, one recently legalized in the state of Florida...and I'll be the first to admit that I voted YES on November 8th, this past election and in the 2012 one as well. I am talking about medical marijuana.
I realize not everyone will agree with our choice to use this medication for Jeremiah, and for various reasons, but the fact remains that it is just that...OUR choice. Being an essential oil user and distributor, I believe whole-heartedly in the benefits associated with using God-created plants for medicinal purposes. Marijuana was a plant when Adam and Eve roamed the Garden of Eden and they didn't Google a Walgreen's or CVS when they were sick. The plants were there to eat, make poultices from, cook with, and heal. Sorry big pharma. It was sinful man who found a way to use the plant with warped intentions and for ungodly purposes.
Anyway, initially we had a very chatty and giggly little man for a few hours after taking it. That seems to have calmed down after a few weeks on the medication now. The other benefits? Because yes, in our life with Jerry, chatty and giggly is definitely a benefit when you consider where we've come from.
We actually had his feeding therapy evaluation today at All Children's and the therapist, after having reviewed his history and then witnessing his current eating habits, placed us on a "call as needed" basis. He doesn't need to continue the feeding therapy!
He was still only 69 pounds today, but it's hard to pack on the pounds when you are eating as healthy as he is now. And he still has the feeding tube and is on his nightly formula regimen, will be getting the button one to replace his current G-tube, and likely will have it for quite a few months yet. He's not out of the woods as they say. But he is finally doing better, making constant improvements, and moving more steps forward than backwards. Thank you Jesus!
Our goal is to keep pressing on, for me to get creative and find new recipes using the foods on his approved diet, and to begin teaching Jerry how to prepare some of his own meals. He is fifteen afterall and will need to learn how to cook for himself someday.
New day, fresh starts, new plans, light at the end of this tunnel. Very, very thankful. Please keep praying!
I am a Christian. I am a wife. I am a mom. I am an author. In that order.