Bowl full of sunshine

What does your bedtime snack look like??

This is what Hayden's looks like, it is one of his favorites! Eggs and Orange peppers, with a little bit of cheese. MMmmm..good!

I think most kids would prefer some Milk and Cookies, but whatever works, right??

A new favorite

Grilled Burgers wrapped in a tortilla and stuffed with veggies! YUMMY!!

This has become a fast favorite of ours, low carb..high fat...high protein....great flavor, and very filling!! The burgers are very simple but I swear they were the best burgers I have had in a long time! There is Avocado, sauteed onions and red peppers, garden fresh lettuce and tomatoes all wrapped up in there. DEEEE-LISH!! The squash is also from our garden and was so filling. Throw in some fresh fruit and our meal was complete.

We also make this wrapped in a lettuce wrapper, flavored with a Tex-Mex flavor...also very filling and delicious!

365 Days ago...

The past couple of days have brought me to a point of reflection, not dwelling but reflecting. 365 Days ago there was an incident that makes today an anniversary.... Not one filled with laughter and good times, but one that was scary and treacherous and one I never want to go through again.

Last year on this day we went in for a series of routine procedures to "check" on what was going on internally with Hayden when there was an "equipment malfunction" and we became another statistic. You see we are where we are today, because of "surgical side effects" from 7 years ago....

He looked at me and asked me if he was going to die. My auto-pilot told him NO immediately, but my heart and my brain were screaming inside of me that I didn't know!

It was a 1 in 100+ case statistic that what actually happened - would happen, so how could they say for sure that he wouldn't. And no lie, I had a customer in my Mary Kay days who actually did die from a ruptured esophagus....try getting that nugget of info out of your brain when a doctor comes out and tells you that they have just "perforated" the first layer - possibly the second layer of your son's esophagus.

The days that followed were horrible, scary, emotionally draining and filled with so many questions. I can still "feel" what I felt that day. I don't like it....

This past week I have been thinking about how that experience changed us, altered us a little bit more. How it added one more sentence in our "definition". I was so angry with God for allowing something more to happen to this sweet boy, and I was terrified to say it out loud. My belief in our doctors was so shattered, and I was once again completely helpless in protecting my son. How it took a significant amount of time for Hayden to fully recover - emotionally and some days I think he hasn't. I have been remembering how scared I was and how it doesn't matter how much education a Doctor has behind him, he isn't perfect. He doesn't know everything...he knows a whole hell of a lot, but not everything.

And most ironically, we continue to live "behind the curtain". The curtain that we are "fine"...that everything is OK. I don't like pity and I don't like the feeling of the whispered...did you hear what happened??? Sometimes I peak from behind the curtain and share my real feelings about our situation but I always feel that it is hard to relate to our circumstances and therefor people don't get it. After all, he looks just like every other boy his age.

My guy has been home with me for the past several days with a case of the Chicken Pox and the Croup. He didn't remember what today was, and I didn't feel the need to remind him. He is such an amazing kid, his stamina and strength are unbelievable! He doesn't need to be brought back to that day...I don't really want to be here myself.

If I could blow out a candle today and make a wish for him, I would wish that he never have to go through any of this. That tomorrow he could wake up and never have to deal with daily struggles again.

365 days from today, I hope that I can not remember exactly how I felt 365 days ago.

Where are we??

I have not posted here in quite a long time!! I really wanted to have this blog be a fun place for recipes that are healthy and yummy, but also a place where loved one's could follow what is going on with my man Hayden.

I was somewhat stuck on how to proceed because Hayden has such complex dietary requirements...follow the ADA diet, add fiber, give him plenty of good fats....on and on....that who else can benefit from those types of recipes???

And along with that, there is the frustration of "dealing" with this type of illness or condition because not many people can relate. Hayden's condition is the result of a surgery...a type of surgery that we were told was necessary at the time to control his reflux. Now, who knows?? Have you ever heard of "Post-Prandial Hypoglycemia, Secondary to Dumping Syndrome"?? Probably not. And if you have it is probably the result of Gastric Bypass Surgery in an adult. Not

I try to keep everything "Cheery" and try to only share my frustrations with my husband or at times my favorite Doctor. I love her... I have a blog that is fun! I share fun projects that I am working on, great thrift store finds, and wacky stories of my childhood....which I have come to determine was not "normal"...but in a good way! Quite frankly it is not in my character to share all the info about Hayden, it is too confusing for most to understand and then they just think we are crazy. It is confusing for us...and sometimes we think we are crazy!

Today however I am particularly frustrated because Hayden has been having chronic stomach pain for weeks...not every day, maybe two, three or four days a week...every week! It is happening enough that it slows him down, and if you know Hayden you know that he isn't the "slow down" type of kid. He feels like he is passing a kidney stone - again - and to top it off...he is trying to exert "control" over his body and is fighting me tooth and nail about the basics. On every detail!

Maybe I am going to be talking to myself, maybe I will just be keeping a record of what each day brings and I can reflect on it another day. But whichever it is, this is going to be a place for me record those thoughts and the regular changes to his medical needs. No whining, or complaining, just straight talking.

So here we are....a Mom and Dad who tried to do the best thing for their kid, and a kid who has been forever altered because of a "necessary" surgery that now-a-days isn't so necessary? Real people dealing with the real BS of the medical world, dealing with the real life effects that chronic illness brings to the family dynamic, and of course lets not forget the ever popular comments..."Now,.... what is wrong with him??" with the perplexed confused look on their face. And of course that is only what they are willing to say to our face, we have heard some of the things that they say behind our back...and they should be ashamed.


If your friend, family or other, I hope that this will keep you up to date. And where are we today?? We are 10 days underway after taking the NG tube out (the feeding tube that runs through his nose into his belly). We are trying to find out if having the tube helps with the dumping (the intense/immediate need to poop right after eating...within 15 minutes of starting to eat). Having the tube put on weight really fast in the first 4 weeks and then the second 8 weeks not much....so a little frustration there. Plus it didn't help with the dumping, only helped to get some guaranteed nutrition.