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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.

Sunday, August 4, 2013

playing catch up a little

I have a bunch to write about and I am feeling overwhelmed because I would like to remember the details of these events and I can't. But highlights are better than nothing and I am going to make it a memory.. a hazy memory....

May is sitting... sometimes she does a full face dive right into the carpet. She also scoots herself. Only moving in the backwards direction and getting stuck. I just follow that handy dandy oxygen tubing to the baby who is wedged between the couch and the table. It is time to bust out the safety gate. That is kind of a bummer, because having that open makes the room feel open. Protection is better than visual appeal. We heard back from Neuro.... Her incision is just going to need some time. If we finish the antibiotics and she still has fevers then we will be looking at going to to have that little spot closed in the operating room. Power of positive thinking says it will heal. Sometimes I worry that I am the over/hypersensitive parent. Then I remember a couple of things... #1 doctors and specialists will tell me if there is something I don't need care for. It happened with her Hemangioma... it's flat, it won't need medical intervention. #2 I am my child's biggest advocate. If there is anything I have learned, especially with MayLee is..... If you think it is nothing just have it checked anyway. It could be something and nobody wants to look back and go... "well we could have really done A,B, or C and because we don't know unless you as the parent do something about it...blah blah blah" #3 I would spend the money a million times over for good health. It is true... I would be as poor as a church mouse if I know my kids are getting the best care possible. It would be nice to spend it other places... But, Health and Religion (my mental health) are the only things that are really important to me... #4 I have two kids with serious health issues... If I am a little crazy, Oh-Well!

Sometimes you just need to smooch this little girl.
Here is the making to what my family thinks is completely amazing... It's called Lemon on the Rocks.(no alcohol involved)
It is simply...Squeezed Lemons, Ice, Water and salt.
It is the reverse of a Lemonade...
One of the Keys to it's deliciousness is to shake it not stir....This way it gets a little frothy...
 It is so yummy... I crave it while I am pregnant... and when I am not... and pretty much any time I think about it... My mouth is watering thinking about it now... Mmmmmm.....
 We get lemons in our toes of our Christmas stockings so that we can have our very own LOR....
You kind of have to be born into liking it... It started on My Mom's side with Grandma Groesbeck. Most of her natural (meaning no in-laws) like it.... and most of her natural grandchildren like it... And now we are on to the next generation of natural great grandchildren. 

In this house we can't seem to get enough.
This is part of my life and my kiddles life that will carried down and one day they will wonder where it came from. Now they will know!

 Ry and Gator started school... Ry went the full first day and Gator had orientation that day... So we walked them to school..
I think she is excited to have a little more momma time!

It is even more cool when daddy gets to come too! 

Here they are in their official first day full day outfits.

Minus his shoes

Daddy did an amazing job on his bike ride last Saturday. They say the ULCER is one of Utah's toughest rides because of the wind and heat. 103 miles accomplished in 6 1/2 hours... He is amazing. This was his first time doing this ride and it was fun and hard all wrapped into one. We won't even compare the rest stops to the MS ride. They aren't even close. They are well stocked but they don't have people going out of their way like the MS ride to really kick it up. Of course I didn't have my camera and I made it to the finish line and tried to find my phone and realized I left it home. My brain I tell ya. So not one single picture of his victory. But I actually saw him cross the line this time. I usually miss it somehow at the MS. I am so proud of him and how much he has accomplished this year. It also helps that I like to carb load with him before the ride... Yummy:} 








3 comments:

Cynthia said...

Glad to see that it's all going good- or at least mostly good. We'll take it!

We're loving the new cabinets and furishings at work. Thanks to your Hubs and his talents!

berrymom said...

Mmmm...Lemon on the rocks...I am going to have to go make one now. My mouth is watering!

likeschocolate said...

No sugar with the lemons? Interesting? I have to think about that one. You have every right to worry! Maylee has no one else to protect her!