Hardest Decisions

4 days ago, I took yet another trip to the Emergency Room with Battboy. This is our 3rd in 6weeks, for basically the same problem. This is an issue that I have, for years, assumed someone, somewhere had the magical answer for. An issue that seems so small compared to so many things this little Hero has already been through in his 11 1/2 years on this earth. He has surpassed so much more than many EVER thought he would or could. How can there be an issue that we can't find a Doctor who had the magical answer, solution, cure. Well, because there is NO magical fix or answer and definitely no cure that will allow our life's to ever be what they were 4 days ago. Things...they are a changing.

Now let's start with the overall diagnosis of my Battboy. He has Cerebral Palsy, grade 4 brain bleeds on both sides of brain at his birth, which came 12 weeks early. He is a miracle to me and many others. He fought his way to STAY here. He has had At least 14 surgeries over his life for a range of things,. Well, we now have to consider some new ones. And all because of what seems like such a minor thing. That thing, my friends is, to put it bluntly...POOP. 

I have always known non-ambulatory people stayed constipated in most cases. This is because walking is a VERY important part of helping us move things through. But never ever did I realize, with all the things he has accomplished, pulled through, etc., that this one issue would bring about such a realization for me. Sometimes there are no easy fixes, only hard decisions. This issue, this nasty little word ~~>POOP<~~ 

9or lack there of) has become so intense for Battboy that he has breathing issues now (he has always had good lungs). The lower gut is FULL, which makes less room for lungs, and yes stomach to do all they should. So thanks to POOP, we now have Doctors talking to us about poking holes in places I never thought about having to do ANYTHING surgical to in Battboy's life. Talking about Tracheotomy, but I'm like "WHOA! We have never even had oxygen, our lungs are good!" *blink* WTH just happened? I was talking about constipation, checking diet...THESE type things. So out of the blue they are discussing with me a surgery I never thought Battboy would need, and would have never considered for him unless it was an emergency. Now the doctors WERE listening to me and are also coming up with a plan of treatment for this Pooping thing. They came in and were like offering a few options on helping the bowels move. Out of nowhere I hear mention of another procedure I was not familiar with, Mace is what they called it. This is the simplest explaination I could find, http://www.health.qld.gov.au/cchs/congenital/MACE_procedure.pdf

We have a few more test to do, but it seems these are my options for Battboy at this time.

I have a HOST of emotions going now, so I will wait to write about the impact EITHER of these decisions on life for our family. They would be HUGE.

I will go to bed tonight, as I have for the last 4 nights, praying that some test (2 tomorrow), will make the options change. I ask for all my friends and those who have been touched by Battboy in so many ways to pray this same prayer with me tonight. If the options don't change. Pray for my strength to make the right decisions for this most precious little boy. Who has ALWAYS been perfect like God made him, in my eyes.

Soaking up the Sunshine

We have had LOTS of bad weather this past week. It is great to have beautiful day to spend a little time in the sunshine with Battboy. Fresh after a day school ;-)

Super NooDy Movie Trailor

http://cupofnoody.blogspot.com/

A family I am touched by and the trailor is TOO cute... how could I NOT post this?

Marc Broussard at The Bijou

On Tuesday March 8th I had the pleasure of attending the Marc Broussard concert at the Bijou Theatre in Downtown Knoxville. This was my first show of not only Marc's, but also at the Bijou, so had to have pre-show dinner at the Bistro At the Bijou. Dinner was excellent! Might I say there was an added bonus to choosing The Bistro, he picked up dinner there too! Marc was kind enough to pose for a picture after ordering his dinner, and my night was off to an excellent start!

So with belly nourished and spirits high off to the Bijou I go. I admire the gorgeous facilty on my way in, as I had heard how lovely it was, but had never seen myself. I stopped by the bar, and then I had to check out the merchandise table. There, to my delight I see advanced copies of Marc's new EP or CD, all I know is I am excited for new music! I grab a copy and climb to the balcony, still admiring the theater.

The opening act was Sonia Leigh, who'd I had also never seen, but I enjoyed her set. At this point I had met & gotten picture with Marc, snagged new music from him. The Spice Girls could've have opened and I would still have enjoyed. One last trip to the bar before Marc takes the stage, and then I had 1 1/2 hours of complete music bliss. Marc was a pleasure to hear & to watch. He is extremely funny on stage and keeps the crowd into the entire show.
So was might night out in the rain with a bummed out shoulder worth it...INDEED!

Always on Mondays ~a typical rant

I am a single, stay at home parent so I generally try to avoid major household chores on the weekends. I'd rather have that quality time with my kids, or enjoy ME time if they go to their dad's or Nana & Papaw's for a bit. So this usually leads to busy Monday mornings, consisting mainly of kitchen cleaning and laundry.
Three weeks ago, my dryer quit getting hot. I figure, "no biggie, my handy brother can change a heating element or something" Well, that turned out not to be the case. Dryer down! Handy Brother mentions, his old working dryer is in my shed, he'll just swap them out, I think GREAT! My dear brother, who I used to fight with relentlessly growing up, moves not one, but 2 dryers, one in, one out, for me. Only to find out his dryer is TOO wide for my laundry room set-up. So the dryer is literally is sitting half in my master bathroom rather than in it's nook. No big deal, I can work with this until I get a new dryer that fits. Kids got to have clean clothes, right?
Today, a Monday no doubt, I head to master bath/ laundry facility. I side step the dryer in the middle of the room, slide to the washer to get my day started. I load the washer , pour in detergent, etc. I turn to clear the drying rack, fluff the things in need, typical laundry duties. Suddenly I realize the washer is kind of quiet, sounding different. The spinner in the middle is NOT doing anything.
So not only do I have broken dryer, now have broken washer and a load of dripping wet clothes.
I welcome the rest of the week.

Helping East TN Children's Hospital

Let me start by Saying I am Jennifer Batts, some know me as BattLady. Many of you have heard me speak of "Battboy". A little history on him, is he was 12 weeks premature. There have been MANY medical hurdles since that warm September day 11 years ago. Battboy has Cerebral Palsy. This leads to many other conditions, but short version is he is non-ambulatory, tube fed & totally dependent. This requires alot of medical supplies that are delivered to my front door without worry EVERY month by East Tennessee Children's Hospital.

East Tennessee Children's Hospital (ETCH) is a private, independent, not-for-profit pediatric medical center that has served East Tennessee since 1937. A Comprehensive Regional Pediatric Center in TN. They also provide the home health I spoke of before. Not to mention the DOZENS of stays Battboy has had in their excellent hospital.

Locally our top 40 radio station Star 102.1 (@star102 on twitter) does a radiothon that ALL proceeds & profits are given to ETCH and benefits not only E. TN but many kids in counties into south KY, as well. So I am using my twitter and my Blip.fm stream to try and help drum up donations for THIS cause.

Anyone who donates has their name read on the radio, so if you wish to remain anonymous feel free to donate for "Battboy" and ask to NOT have name read on the radio. Any donation or pledge is GREATLY appreciated. This is the 10th year this Radiothon has benefited ETCH. NO DONATION or pledge is TOO SMALL!

Battboy just got over being sick and having a 2 day stay in ETCH, so I feel a pressing calling to help support this cause. And appreciate any support, even just to get the message out there. Thanks music lovers ;)

(865)656-5437 (KIDS)

Today & tomorrow until 6pm EST

BROKEN ANGELS--

Once upon a time I was selfish, thought the world revolved around me..

Then I was blessed with the most precious angel, that I had ever seen.

As with any other parent, I beamed with pride and joy

As slowly the doctors began to list the things that were wrong with my boy.

With every tear that streamed down my face, I said a little prayer.

And for every milestone they said he would not reach, I was always there.

His legs are not as strong as ours, but they work just fine for him.

And he needs help to do most things, but asks with the sweetest grin.

And if you could hear him laugh, or try his hardest to say "Mom"

You would have no doubt from where this angel comes.

Sometimes the ones who seem in need, can be a reminder to us all,

That sometimes its not them, who needed most of all.

Sometimes even broken angels shine in all God's grace

And I hope my Lil Angel brought a smile to your face!



Written by: Jennifer Faith Batts 2005