I found this story on my mom's facebook and I can't STOP thinking about this sweet family. Their daughter Preslee (2 years old) went back to her Father in Heaven yesterday (July 16)...she fell into a cannal (July 9)...2 miles down the neighbors found her and did CPR on her. She was flown to Primary Children's and was there for 1 week. This is their blog. http://patrickandashley.blogspot.com/
One of thier post is "A life can change in an instant"...those words are the words I've got on my mind EVERYDAY. It literally changed in an *instant* for our family. I am grateful to their sweet family for sharing their blog with everyone so that I had the chance to read it. I don't know them, but their hearts are in the right place, they have shown great faith to me and they are complete strangers...though they may never know how many lives they have touched. They must be STRONG parents to go through loosing a child. I hope they will be comforted at this time and I pray the Lord will bless them.
I think I'll cuddle Cole a little longer, kiss him a few times more, complain less or not at all, thank the Lord for giving me this sweet spirit to care for...and that I've got him today.
Cole started Hippotherapy today! We were lucky he got to start it before he turned 2 and we also got through the long waiting list!
When his Physical Therapist (Betsy) put him on the horse he imediatly stuck his thumb in his mouth...for the rest of the ride. When the horse started walking he got so excited...he laughed & wiggled his arms...he even took his thumb out for those few seconds...then it went right back in. Betsy said (before we started) that most kids cry for the 1st few times...and she was shocked that he was so excited...I could tell she was totally excited that he liked it. And of course I was excited because we found something Cole actually likes!
He gets to go once a week for 15 min. So I actually want to get him into another Hippotherapy program because he did so well (but it's in Park City and it's VERY expensive...but it is 45 min. instead of 15 min.) but hey...if it helps, $$ dosn't matter right!?!
Cole got his EEG done on June 30th. Of course on the way to the hospital we had to try & keep him from falling asleep (playing, rolling the windows down, giving him the phone, etc.) Then we get to the hospital & he WON'T fall asleep...he was laughing, crying, screaming, jumping, pulling the cords off his head & unpluged the cords. Then the second we put him in the car...he was OUT!!!
We talked to the Neuro about his EEG and it shows slight imporvement from before the diet. So, we will keep trucking along with the diet for now (she did talk to us about the Vigel Stimulator...which we aren't going to do yet and will be our last resort...it is a battery pack that is inserted into the chest and wires that run up to his brain to send pulses...but like any other medication...it can make it worse, do nothing or help it)
If we can just get is ketones to stay at a consistent 4+ then the diet would work MUCH MUCH better. But we are having a hard time keeping them up through the night. He wakes up at a 1+ or 2+...and by the time he's back up to a 4+ it's time to go to bed. However last night he slept through the night and woke up at a 4+...so we will be plaing detective for a bit. We also switched his butter & oils to coconut oil, MCT oil & Flax seed oil and it seems to help.
1: hearing test (end of July)
2: meeting with Genetics Testing (October)-
to see if he has some disorder or something we don't know about