Monday, September 5, 2011

I think we're finally feeling like a normal family, again.

I think this is the first time in a year that during a week I've not felt more down then up.  Especially in those quiet moments when it's about the thoughts and dreams of Raquel and our future with her.  A big part of that will be how Renata and I will continue to cope and be the strength Raquel and Cordelia need.
This last couple weeks the trend with Raquel has been upward in a big way.  She's still continuing to develop in leaps and bounds.
Raquel discovered hide and seek on her own.  The other night we were on the couch and she crawled back and forth behind my back in an attempt to hide.  She'd laugh and giggle every time I'd turn to the side of the couch she had crawled to, then with a smile bolt back to the other side out of view.  It was the first time she'd set the parameters of a game and taken it on on her own pace.  We did this over and over and over and the more we played the happier and louder her giggles and laughs would become.
Pride.
Love.
Happiness.
 
Last night we went over to friends for dinner and were able to ride our bikes.
Raquel was in the trailer and Renata and Cordelia rode along side.  It was a very liberating experience as a family, to all be on the road at once.  It will be one of the more memorable nights of the summer.  Helps that the company and food was great too. haha.
What caped it off was she fell asleep in my arms while we were all still drinking wine and chatting.  She stayed asleep on the entire ride home (I was not an intoxicated cyclist) .
It wasn't till 11pm,12am,1am,2am and finally 3am that we got back into the rough routine of wondering what in the hell was wrong with her and what should we do to get her to stop freaking us out and making each other grumpy and be comfortable and sleep.
PLEASE>
We figured it out and it wasn't till 6 that she woke again, Ren and I fed her and had her stay quiet till 8.
Renata tried desperately to go back to bed once I had the feed and everything covered so to get a few more hours of peaceful sleep.  Unfortunately for her #1 woke up and I could hear Cordelia pestering her the whole time in our bedroom.  When Renata finally was forced to get up, I pretended I was comfortably sleeping on the couch with Raquel.  haha..
It wasn't exactly the case.  I was resting, yes.  Eyes closed, yes.  Asleep, No.  Arm dead asleep though.

The G-tube has a huge part in the success we're having right now.  It seems it's been able to be a preventative force in her care.  I figured it would be an emergency back up, but it's proven even more useful. The blood blisters and lancing in her mouth was all to often.  In fact it was getting rather insane.
I have only lanced one blister on her tongue since the G-tube was put in.
I think Ren has done a couple, but nothing as traumatic as what was the norm way back when.
As much as we hate the formula chosen for us to use, because of the horrible sweet vanilla smell, sticky when anywhere but her belly hole and the fact it's a derived nutrition it's been keeping her plump and happy.
She has had a run of throat blisters, but I'm starting to believe they were a lingering result of the intubation and am hoping they don't rear their ugly, painful, annoying; gurgling, flapping, burst blood bubble annoyance any time soon.

Pictures from today.

one of my faves of all time, too bad it was taken on a goofy iap.







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