Friday, July 23, 2010

Road trip

This morning I left on a road trip....all by myself......
I'm headed to the Rubinstein Taybi Syndrome conference......
I'm excited.
I'm nervous.
I'm ready to learn.
I'm anticipating!
I'm going to meet more "family"
Will I get a glimpse into my future when I see older ones with RTS?
Do I want a glimpse into my future?
Cause I'm really doing good at this one day at a time stuff...Err, most days I'm doing really good at this one day at a time stuff......
Today, I'm going on a road trip!

Wednesday, July 14, 2010

A hard poke.....

Just one of the many pleasures that go along with RTS, otherwise known as Rubinstein Taybi Syndrome, otherwise known as really tough sh**..........
4 IV attempts in the ankles...... 2 tries in the right arm........
and after 5 tries in the left arm, the 6th, or I should say 12th attempt in the left arm worked........


So glad he was already sleeping when they did this.

Tuesday, July 13, 2010

Happy 10 months MAX!


Max, you didn't think that just because your big brother had heart surgery yesterday, I would forget to post about you turning 10 months old, did you?!?!?
What word should I use to describe my TEN month old boy? Spitfire? Ornery? Loud? Attention getter? Lover of sweets? (meaning fruits, and yogurt of course)
Well, yes, but most of all precious, adorable, killer smile, great sleeper, great little brother, life of the PARTY! Family completer!
10 months old today!!!! This is going fast!

Ain't no thang......

Heart surgery one day.......Home the next........WE ARE HOME! It went well, Alex showed no fear. At least in the beginning.












After surgery he was supposed to keep his legs down and still.




long day..........




The hole in his heart is closed! Ain't no thang!
This was his official LAST "planned" surgery.




Thursday, July 8, 2010

Heart surgery, shleart surgery


Or that's what I keep telling myself.
Its no big deal.
Easy peasy...........
Monday morning at 10:30 central time, Alex will have the hole in his heart closed.
Its probably one of the easiest surgeries a cardiologist does.
Its only his sixth surgery in 2 years......surgery smeargery
Heart, shleart..........
Ain't no thang......

(sigh)
On Monday morning my Alex, who now gives me kisses, is having heart surgery.........

Tuesday, July 6, 2010

New kicks

Almost three, and this happy boy just got his FIRST pair of new kicks.....Two reasons he has never had a pair of shoes to call his own: Number 1-his physical therapist wanted him barefoot, because typically this is how kids learn to walk best. Number 2-He has mammoth feet, they are huge, they are man feet. Kids with RTS have big feet, wide, puffy on top, but Alex? Sweet, sweet Alex wins the prize for the biggest feet ever.........
Because he is not yet walking independently, or at least consistently. We have decided to step in with some support for his massive feet and ankles. First step is seeing if he will tolerate shoes, they aren't just any ol shoe, they are orthopedic, supportive shoes....I know what you are thinking...UGLY,but they are pretty cute if you ask me.









The shoes are correcting his foot positioning a bit, but I'm guessing SMO's might be in our future. The good news? He is tolerating the shoes great! There really is no bad news....I'm hoping this is a closer "step" to walking, and he just looks good in them!




Monday, July 5, 2010

Shouldnt I feel better?

You know after a great vacation without anyone to take care of but myself. It was absolutely fabulous to sleep in, eat, read, walk, talk, and do whatever I wanted to whenever I felt. Then I came home, and it was hard to get back into it........So, sorry for my absence,but these four kids have got me busy......I'm ready for another vacation......

Anyway, I forgot my camera on this perfect vacation so you will just have to visit my friend Kelly's blog to see what we did.....