Happy Saturday

Selah had a perfect night....her heart rate didn't go over 100!!!!!!!  Today was picture perfect for her as well.  she looked so good, I wish I'd taken some pictures when she was outside.  Her heart is staying in the 60's which means she FINALLY has recovered!  It took her a month and EIGHT different antibiotics to get over that mess!  Three hospital stays...it was crazy but we know with numbers like that, she has recovered!   Her nurses are all reporting on how well she is swallowing, she rarely has any drool unless she is sound asleep  (I've drooled a bit when I'm sound asleep too LOL)  This is a great thing and another proof that she should be able to come off the trach soon!  We STILL do not have speech therapy set up, we are waiting for everything to go through...so annoying!

Sam seems more comfy today.  He was able to open his good eye when he first woke up for the first time since the surgery.  He hasn't been as whinny either. 

We got a surprise today....some good friends stopped by.  We introduced them a few years ago and they got married:)  Steve attended our church and I was friends with Jennifer's mom...when I got to know Jennifer I told her, I knew a guy just perfect for her...at the same time, I was telling Steve I knew the perfect girl for him....well......6 months after meeting each other, Jon was honored to do their marriage:)  We had a great time hanging out today, eating pizza, just having a good time with them and their little girl!  Friends are so important in life:)


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Selah a year ago today...she was so tiny...She is wearing a size 2T...today she is wearing a size 7!

 

Sarah a year ago today wearing  a 2T shirt and 24 months old skirt, pinned with safety pens!!

Now she wears a size 4 or 5!!!!

 

 

A year ago today we all went out to eat for the first time....

 

 

 

 

We felt brave taking the whole gang out to eat!

 

One thing I failed to mention was the day after we got home, we were at our doctor's at 9am, he gave us his whole morning to check out the girls.  Sarah had bumps all over her.  I was sitting holding her and he told me she had scabies!!!!  I almost dropped her LOL!  We ended up going to a dermatologist at USF the next week because it ws so awful.  She had a form that was not contagious only because it had been in her system for so long.  It was awful, the bumps would come up in minutes and she'd just shriek!  If she ever cried, it was because of the scabies.  She kept having acute attacks until about October, now she will occasionally have a few bumps but not like before when her whole back would be covered in a matter of minutes.  It took a combo of medicine to get her through that!  The doctor said she must have had them since she was a baby.  Isn't that awful to think of????

 

Some days I get sad when I look back, today is not so bad, since Selah is doing so well physically and beginning to make progress once again.  It seems like every time she goes in the hospital, she has to start all over in areas.... But I could live with days like today, it gives me hope.  To see her relaxed (with NO Valium----today no Clondine either!!! Her BP was too low for the medicine and that is GOOD. ) Swallowing, and more attentive....it gives me HOPE that maybe she will still recover.   Days like today are as good as it gets for us now. 

 

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Thank you all for your prayers for our family!