About Me

On March 21st, 2010 My daddy left for his last trip away from us. On March 22nd we had to ask him to come home. I had my first seizure that day. One month later I was diagnosed with Infantile Spasms. I have been through a lot in my short life. But I bring so much joy to my mommy and daddy every time I smile.

Wednesday, January 29, 2014

He is like a million piece puzzle!

I've really started seeing Jayen as a million piece puzzle lately. Sometimes I find a piece that fits and other times I think I find a piece, make it fit, then realize it I just squeezed it into where I wanted it to go. We have so many hurdles to overcome in this journey. Some days I only see the hurdles in between me and the finish line. Those are my days of most frustration. Other days I feel like we make it over a few hurdles, but then the rest knock us down and we scrape every knee, elbow, shin, nose, knuckles, wrist, chin, forehead, shoulder, stomach, (yeah, some days we scrape EVERY body part!).

We have been struggling with Jayen getting out of bed at night. I was past the point of frustration with Jayen. I felt like a horrible mom every night because of the yelling that occurred after the literally hundredth time putting him in bed. I felt bad for Dalan who shares a room with Jayen. He is often kept awake. I struggle finding rewards and consequences for Jayen, he is interested in everything but nothing in particular. I knew candy would be an easy and somewhat exciting reward. I grabbed a Ziploc bag, permanent marker, napkin, dry erase marker, and a piece of candy. I told Jayen that if he got out of bed I would put an X in the box. If he had any boxes left when he woke up then he would get the candy. The first time was a fail, the second time was a fail, the third time was a fail, the fourth time was a fail, the fifth time was a fail, the sixth time was a fail, but I'm happy to report that after a couple weeks Jayen started getting the idea. Nap time is more of a struggle than night time, but I think we are starting to get somewhere. The last three nights he has earned his candy in the morning, two of them with no X's at all!!! I hope this is a true fit puzzle piece and not something I am making fit!

 
We have also been struggling with potty training with Jayen. He has got the pee part down. He is in underwear all day long but at night when he is in a pull-up he sometimes poops in the pull-up rather than the toilet. Quite a few times it is in the middle of the night and wakes him up, sometimes screaming. We have noticed his stomach often seems distended and his b.m. is very hard. We recently started miralax. I think I overdosed him the first time. After two days of the miralax we had, what Renee calls, soup poop! We backed off the dose, then during the kitchen remodel misplaced the miralax and stopped giving it to him. Once again his poop hardened and his stomach distended. We have gotten back on the medicine and have been waiting for things to kick in again. I started it at a slower pace. Today, when we were waiting for the bus, Jayen informed me he had to go to the bathroom. He went #2 in the toilet! I really hope that getting this issue under control will help with the potty training. I think he understands but can't always control it. Hopefully this will help with a few puzzle pieces. Maybe he will eat better because his stomach feels better, maybe he will stay in bed longer, maybe!

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