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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Monday, July 7, 2014

Merry 4th of July


Seriously, I feel like I'm in warp speed....

Ryleigh is done with third grade and Alex is done with first....
Year round is great during the winter when we need the breaks, but when family is in town, the days are long, and it should be summer... Let's just say I am super glad it is over. We get to live it up for three whole weeks. 

This week at clinic Alex showed he needed a little more support and is on oxygen full time. If you thought we were a show before. With two kids tied to oxygen and one with his own personal pharmacy.... Well you can imagine the looks. (Mostly sorry looks or sympathy or pitty) 

We are choosing happiness still....

On the 4th 
Jeff did the Tour De Riverton.. He has really done well this year.
He met us on the parade route. This kids enjoyed seeing it. Gator got hot and we both wished it would end because we could have been happy with 1/2 hour. 







We did fireworks in a super special way. Daddy is brilliant and got glow sticks. We can totally rock those and safely have oxygen. 

Pictures didn't turn out great, but we had fun. 



We played some then worked some. We are trying to finish the last room in our house the basement bathroom. We feel terrible that Gator has to run upstairs in the middle of the night tethered to all his gear. This will really make it nice for our two older kiddos. 

Today Gator and I spent some time at two hospitals.. Riverton isn't quiet up to a ped on milranone with an occusion (plug) so we had to go up to PCH. 
We got it all resolved and came home. Whew!! 

The car puts him to sleep. 

On to the next crazy week!!! 











1 comment:

MEL said...

You're a trooper, Brynn! Love the glow sticks! Our kids hooked a bunch together to make jump ropes and hula hoops... you should try it! It was a lot of fun! :)