Raise the Roof

Yep, its that time of year again!  Raise the Roof for Rett Syndrome is THIS Friday.  November 1, LincPoint, 7:00 is the place to be!  We have fabulous auction items, a great meal planned out and unlimited beer and wine.  Try and name a better evening, just try.

Buy tickets ahead of time and save yourself 10.00.  Go to www.sukifoundation.org to get your tickets or to make a donation.  No amount is too small in helping these families.  Tickets are only $50.00.

100% of the monies raised from that night benefit the foundation.  Not many other charities can say that.  This foundation was truly established to benefit others going through unthinkable times.  Plain and simple.  To help answer questions, provide opportunities, be a shoulder, and most importantly show families that there is a light at the end of the tunnel.

Hope to see you all there!

1 Month Update

I am a little late on updating on Luna.  Poor girl.  Her 1 week was like a month late, so I'm getting better seeing that I'm only 2 weeks late with this one :).  I promise to keep better records, sweet girl.

Her doctors appointment went well.  She is now in the 90% for weight and 50-75% for height.  Little chunker is (was at the time) almost 11 lbs.  She went from 50 to 90% in a matter of like 3 weeks.

She is a great eater, obviously, and a fairly good sleeper.  We've had a few nights of 12 hour stretches.  Most of the time, if she does wake up, she nurses for a few minutes and then is right back to sleep.  Not convinced she is waking from hunger.  Might be time to move her upstairs and see.  I'm just a bit too lazy for that right now though.

She is definitely more alert during the day.  Awake for hours at a time.  I enjoy it, but she is definitely more high maintenance than her brother ever was.  Likely because the slightest sound out of her and Phoenix makes me pick her up.  Good brother but not good for Sissy's independence.

She is also smiling a lot more and making some sounds, which are all just too cute!  Phoenix still loves her more than anything and is overly protective of her.  He shares his toys with her, covers her with her blanket, and is by her side faster than lightning if she starts crying.  He also loves  to help change her diaper and give her baths.

Speaking of-she HATES bath time.  I mean, hates it.  She screams non stop from the moment her clothes are off until the moment her head goes through her pajamas.  In return, I too hate bath time :).

She does great in the car, unlike her brother and could sleep all day everyday in her car seat if I'd let her.  She likes to be snug and warm.

She did great with her shots.  Brother even did well watching her get them.  I must add that he was a champ getting his flu shot.  I think its because he wanted to show Dada how tough he is.  Sweet boy.

She is a true delight, even when crying.  Its been such a Blessings to see the two of them interact and watch her grow so much in just a months time.  I can't wait to see more!

Homestead Hollow

We LOVE Homestead Hollow.  Its a great place to go for Phoenix to run around outside, while Mama gets to browse lots of cool things.  They have lots to do for kids too, which is another reason we LOVE to go.  We wanted to take my Goddaughter with us this time, but unfortunately it didn't work out.  Maybe next time.  This was Sunday, October 13, 2013.

Jason and Phoenix got to ride up front with the driver of the wagon ride.  He even let them drive the horses.  Not sure who was more excited, Phoenix or Jason, about that one :).  Luna slept the entire time.  I mean ENTIRE.  Definitely not complaining.  I did wake her up and get her out of her seat for a photo though :).

The expression I got when I put her back in her seat :)

Started out holding on with 2 hands.

How sweet.  He's waving to me!

Then I realized Dada was teaching him to rodeo.

Silly, silly Mama.

Sissy was a fan though :)

Reliving the Nightmare

I have dreaded doing this post.  DREADED.  However, I know that in the years to come, I'll want to have it to look back on.  Yeah right.  Anyways, as of today, his hand is great.  You can still see the burn spot, but you have to look closely.  We were told that there shouldn't be any scarring, but Jason seems to think differently.  God, I hope not.  

It took some time before he would use his hand after his wrap came off.   He was more cautious with it off than with it on.  He would still eat and write with his left and and refused to put anything in his right.  Thankfully, he's come around.  He now goes nowhere near anything hot-the stove, the oven, his food, sparklers, etc.  He won't even eat his food if it tastes mildly warm.  We are definitely working on that (the food part), because for me, it just triggers that day all over in my mind.  

I am doing much better.  After about 2 weeks, I finally started using the stove again.  I wouldn't use that side of the stove, but I was using 2 eyes.  Major step.  With a little more time, I've been able to use the dreaded eye again.  I'll be honest though, some days are easier than others.  I never thought it would affect me this bad for soo long.  I relive that stupid day at least once every day.  It totally sucks.  I am soo ready for my brain to quit replaying it.  It hits randomly, but especially when he cries.  

I can't get over how I turned my head for a split second.  How I panicked soo badly I didn't even know what to do or where to go.  I was totally helpless.  The guilt of him not going on his zoo date because of my carelessness.  How I've ruined his mealtime and his love for fireworks.  The list goes on and on.  One day, I pray, one day soon, I'll be able to forgive myself and move past it.    

Hand massage and cocoa butter lotion everyday for the next year and he should be good as new.

Here is a recap of what the hand looked like:

I am happy to report that as of this past week, you can't even tell anything happened if you look at his hand.  It looks 100% healed.  Praise God.  We will still be doing the hand massage and lotion though-this Mama isn't taking ANY chances.  

Thanks to all of our friends and family who prayed for us during this time.  Thanks also to those who brought surprises over to my baby and stopped by to check on him.  Those are the times I pray I never forget.