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Friday, January 9, 2009

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.