Thursday, October 30, 2014

Caroline's Cart

I posted a while ago about a trip to the grocery store and how I wanted to run a lady over for asking about Will's boots and what a process it is to simply go to the grocery store. A trip to the store is sometimes Will's only outing on the weekend as we use weekends for him to rest.

After that post and some conversations with random people, I decided to use the handicap tag at the grocery store. I always am so worried someone is going to confront me in front of Will and I don't want to have that conversation in front of him, nor do I want him to see me yell at a total stranger. So there, now I use it. 

Probably for the past year our local Kroger has had something called the "Caroline's Cart" - essentially it's a big kid seat with seat belt for special needs kiddos. It's awesome. However, for the past year nearly every time I go into our Kroger all the cart boy gear is stacked up in the cart - safety vests, hats, water bottles, food samples trash - it not only irritates me, but it grosses me out. (hello immune system problems??)

So, after that above mentioned post of running a bitch the lady over, I decided to take action. I made a choice. 

I came out of the "special needs closet" at the grocery store. I know that might sound trite or silly, but I realized it was actually a choice. 

I think took me some time to decide if I wanted to place myself in the special needs category while grocery shopping. It's kind of a weird deal / choice here. If I park in a handicap spot or use this special stroller I'm admitting to myself that this is really a reality for me AND it also says to others that Will is different. 

I know he's different, but I don't want strangers to judge my boy. I want them to see his beautiful smile and inquisitive questions about yogurt drink options versus this cart or his leg braces. 

Darn near every trip I make there (with or without Will) I find a store manager and tell him about the dirty cart and how I would use it if the cart guys would just put their stuff in one of the other hundred other normal carts and keep this one tidy. I also explain that to the cart guys. They often look at me like I am crazy. 

I am crazy, many many days. 

Well now a few months later it's still sometimes full of their stuff, but it's improved and now, we use Caroline's Cart every time and Will loves it. He's got space and room to move, he can still see and talk to me and he just likes it. 

Sometimes I think I'm overreacting, but then I'm reminded of the wacko lady who I wanted to run over and how small and hurtful her actions were. 

Will is OBSESSED with throwing out the peace sign in every single picture now. 
I thank his cousin for that, but at least he has moved on from covering his face every time. 

Wednesday, October 29, 2014

Health update

I figured since I haven't posted in a while I'd get myself back on track with a health update on Will.

I previously posted about how the beginning of the school year was a huge drain on Will - physically, emotionally and mentally. He wasn't coming home with his usual spark in his eye. More so he was coming home tired and struggled to make it through dinner, bath and bed. He also decided to stop sleeping in his own bed and would melt down at night too. One day at school he fell out of his chair twice.

I had gotten myself so worked up that I scheduled an appointment with Dr. Koenig to go over next steps because whatever was going on was NOT working. Randomly, we had seen her at a train expo in town one weekend. At that appointment she pointed out that he looked terrible at the train expo - I agreed. While he had a lot of fun, he just looked terrible. Physically off, bags under his eyes, labored talking.

Thankfully, it has gotten better. He is now fully adjusted to school and how much it's going to take for his body to keep up and we've added in some "stuff" to help him.

We had an appointment with Dr. Koenig last week and she said he was looking much better, great in fact, and was pleased to see that he was able to adjust.

So what did we change? Well, bed time is now 6:45 - 7 p.m. No "screen time" after dinner and try to relax as much as possible on the weekend.

We've pretty much been hibernating since August. Very rare are play dates or special outings for Will.

We also added in a supplement called Cytontine, it's 15 MLs every morning of some nasty thick sugary looking orange pineapple flavored "crap" from a company called Solace Nutrition. Per the website it's a medical food product that is supposed to increase ATP production giving you more energy and eliminate toxins. I have no idea if it's working or not.

We also are doing something simple. Have you seen these Gatorade Energy Chews? They are probably the biggest gimmick in the world, but whatever, I'm trying it. Gatorade Energy Chews

He thinks it's a piece of candy with his AM snack. In fact, this sleep deprived mom sent ONLY a Gatorade chew for AM snack today, leaving his real food in the fridge. (see above comment "Will quit sleeping")

We have quite the morning meds list - short in comparison to many other mito kids....
-EPI-743 trial drug
-2 MLs of levocarnatine
-15 MLs of Cytontine
-2 "poo poo pills" aka a probiotic to keep his gut running
-1 capfull or miralax
-"ice cream pill" - this is actually sodium pyruvate. There are no liquid forms and since Will can't take pills I pull apart the vegetable capsule and then carefully squeeze the powder on a very thin layer of frozen yogurt, then put another thin layer of fro-yo on top and voila! Ice cream sandwich.

Depending on how pleasant of a mood Will is in, this process can take anywhere from 5 minutes to 10.

So to wrap up my rambling post... We are slowly and happily coming out of a hibernation period with Will back at baseline.

We had a special "Halloween" adventure to my parents house the other weekend for a sleepover which included pumpkin Mickey Mouse pancakes, pumpkin butter and pumpkin ice cream...