Thursday, December 1, 2011

Let the Holiday's BEGIN!

Our 2011 Christmas Card
Our 2011 Christmas tree :)Thankfully this year I am on my A game and was able to decorate the house inside & out over the weekend after Thanksgiving. I am NOT a Black Friday shopper, I use those 3 days to get the house ready for The Holiday's. Last year was a difficult one for me as I was in a full blown MS flare up and it took me about 2 weeks to get everything done. It took everything I had to get it done, but not this year! I was able to get it done over those 3 days AND I enjoyed doing it. YAY!!
With the Season of Giving our family holds onto tradition and gets SICK! Dan goes up Hunting and comes back not always with a deer, BUT he does come back SICK. Which in turn shares the bug with the family. Isn't that NICE?!?! Avrianna got it next, GREAT! She actually stayed home from school, which was the first time ever she's had to stay home sick from school. With the both of them not having spleens it's always hangs with them longer and hits them harder. STAY AWAY from Danny and I, who BOTH have crappy immune systems. I know what a family we make up ......dysFUNctional all the way baby.
My Lil bug trying to steam out the chills in her body, guess it works better in Momma's tub :)
Thankfully so far it hasn't effected Danny or I much. I think Danny is still battling his dysautonomia which was kicked into HIGH GEAR after this last surgery. But you wouldn't know it with his attitude :) The day after they grew his rods out 1.5" and his sitting up all by himself, smiling, and trying to talk.
Look what I can do ~ "All stressed out and no one to CHOKE". Love his sassy t-shirts :)
Even though he's been all smiles during the day....when the night comes it's another story. Danny has always had a hard time regulating his body temp which is why he likes to hangs around 93-94 degrees...that is his normal. Anything over 95 and his system goes into over drive...his body goes flush n sweaty, his HR and respers increase, and if we don't intervene he continues to increase his temps. Unfortunately with the amount and location of his brain damage he can't do it on his own so he needs someone to be his thermostat. Whenever he goes under anesthesia it just heightens his dysfunction of his autonomic system (dysautonomia) and this time it really has been an issue.
We are trying to figure out if it's to do with "Puff" ~ here's his new one LTV1150
This is really the first surgery he has had with "Puff" and we haven't found that prefect setting for Danny yet. Even before "Puff" Danny's had issues with heated humidification on the mask aerosol so I'm playing with the setting to see if it I can control Danny's body temps better through "Puff". The heater and the heated circuits on "Puff" are just too warm for what Danny's body is acclimated to. That's my theory anyway. Last night I brought out the fan to blow on him and lowered his heater temperature, which seemed to help. So tonight I'm going to try and disconnect the heated wire and just have the heater going along with the fan to cool him off. It's a work in progress and I'm on a mission to find out what's the best route for Danny ... even if it doesn't fall within the "normal" guidelines. I swear when you ask for options the "system" doesn't like to do anything that isn't written in black n white. Well Danny is ALL GREY people so lets think outside the box. Wish me luck as I know my support from the "system" won't have my back on this one.
Avrianna has her home swim meet at the Neenah High School this weekend. How exciting!! I'm hoping she does well seeing she hasn't been feeling herself all week. Her school Christmas concert is this Monday so she's been singing up a storm around the house to be ready for her on stage performance.
Danny's 8th Birthday celebration is right around the corner and we're very excited to be taking on a new Project this year. In Leau of presents for Danny we are asking his party guest to get supplies, toys, and gift cards for a local program that helps out local families who are inpatient. As I know ALL TOO WELL when going into the hospital you are not prepared, so this program puts together baskets and gifts to the parents and child. This project is very near and dear to my heart...Not only because I've been that parent, but because the Mom that created the program is a local friend. The program is The Princess Kylee Project and it was created in honor of ^Kylee^, by her mom, after Kylee's passing this spring. I had the pleasure to know Kylee in person and she will be forever missed. Please take a moment and stop by her website and see the wonderful things that they do. They just posted a new Hospital Holiday Wish list ~ if you'd like to participate in donating through Danny's 8th birthday celebration please let me know and we can work out how to get the items to The McGlin's. Danny's party is going on Dec 10th so lets work together and see how many great things we can get! What an amazing thing to do to not only to help out families, but to keep Kylee's legacy alive.
Thanks for stopping by to check on us! Pleas leave a comment or post to let us know you stopped by. We LOVE to hear from you as well. Happy Holidays!!

No comments: