The Story of Battboy and BattLady

September 10th, 12 years ago was the defining day for a change in my life I never planned, nor expected. I was 7 months pregnant and feeling great, glowing and wide. I am off for a typical stress test, and had no worries because I had been having a normal pregnancy. I went in for a stress test, was immediately admitted and had a baby 6 hours later, 12 weeks preterm. 2 lbs 11 oz.There were tubes and medical terms and a mind blowing amount of chaos. I have a very hard time even putting much of any of that time into words or cohesive thoughts. There were tons of decisions to be made QUICKLY, and I had a baby, but NO medical degree. It was overwhelming, humbling, scary, and I was terrified. My family and I tried to make the best decisions we could for a VERY tiny, but most precious little angel...Battboy.

He stayed in the NICU for almost 3 months and after MANY hurdles and setbacks and joyous breakthroughs, I brought him home December 23rd, in time for Christmas. Only to spend the Holiday trying to find pharmacies to get pediatric meds & special compounds before Santa sent all the workers home. Needless to say, within a week, we were back in the hospital for what would be the first of many hospital stays, procedures, and surgeries. Battboy is diagnosed with Cerebral Palsy and Failure to Thrive for his inability to eat, he is G-tube fed, and requires assistance for everything in his daily life. He is in a wheelchair and has a bad vocal cord so vocal communication is little, but he still loves to singsong a lot!

I RARELY focus on what he can't do, but rather build on what he CAN do. I want NOTHING but the best for all my kids, but in Battboy's case that means overpriced, but desperately needed special seating, communication devices, car seats, and in my wildest dreams, someday a van, where he can be taken places in his wheelchair without it breaking my back. I am a single mother so I do everything for him myself, other than when he is at school. We don't have nursing care, as insurance doesn't cover it for him. I have WONDERFUL parents who help me in EVERY way they can and I appreciate them more than words could EVER express!

I am trying to make a way for myself to take care of my family without turning to government aid or putting my parents in debt before they retire. For six years I have perfected my art of candle making and my infamous TennesseTarts. It is impossible for me to get a job outside the home, with all of Battboy's appointments and procedures, that are never ending. So in an effort to do something that works for us and allows me the time Battboy, and my other children require, I giving my candle business another try.

Battboy has MANY medical needs, but is generally in decent health for child in his condition, so we plan on him being around for a LONG time. I must plan for him and my family so that we can be the most productive members of society we can be. I am proud of my kids, my story and my products. I am also honored that you took the time to get a little history on my angel and why I do what I do. 

First Week of Free days!

I love summer break, until about 3 weeks before school starts, that's about the time everyone is over summer around here. So by the time the first week of school arrives, I have a nice to-do-list. It never ceases to amaze me how much more you can get done when the little ones go back to school. Not to mention all the little projects that were placed aside in the hustle & bustle of summer break. So although I have more time, and gumption...there's more to be done. So the first week, is spent playing catch-up on FIRST priority. Catch-up priority #1 SLEEP & ME TIME, catch-up priority #2 LAUNDRY (weeding out the outgrown clothes as I go), catch-up priority #3 SPRING CLEANING (in the fall)...
Then it will be time to get ready for Holiday shopping...UGH!!!

BUSY I've Been, time to update

Battboy never had to go to Vandy. We were taken VERY good care of by ETCH and in the end, everyone understood my families AND Battboy's needs had to co-exist. So after ALOT of testing and trial and error, we came home on a new formula and as I so Inelegantly put it...NO NEW HOLES!
That being said, he is definitely keeping me busier. We came home with like 5 new medicines, on top of the 6 he went in taking. Some can't be taken with this or that, so I literally have to have DAILY schedule to keep it straight! Hence the LONG awaited update.
Plus it is summer break here, and Battboy & Battgirl both love the pool. Leaves VERY little Mommy time. Or at least it is sporadic!
I have been keeping cool inside when I can playing My Sims 2 & 3. Another LOVE of mine. I will also be starting another blog for my Sims stuff. Stories/movies CC Creators linked, etc. That is, when I get time LOL
Thanks to EVERYONE for the support through an emotional and stressful situation. And as I said in the earlier blog Hardest Decisions ...because there is NO magical fix or answer and definitely no cure that will allow our life's to ever be what they were ...
BUSY BUSY BUSY , for sure...

Time to Move On

Let me start this blog by saying, we could not have had better hands-on caregivers in the Hospital we are in. The nurses, staff and several doctors have been OUTSTANDING and only want the best for Battboy. But I have ran into some walls in getting the care I THINK he deserves. So I am starting the process to have him transferred to Vanderbilt. It seems the GI doctors here only want to try things we have already tried in the past that didn't work then, & from what I see so far, aren't working now. We have been here 2 weeks today and things aren't getting any better, & very well maybe getting worse.
I have decided I am not going to allow guessing games to continue when it comes to his treatment. I will no longer be caught up in doctors egos. There should be NOTHING under this roof that should be put above the care of kids in need.
I could NOT be more appreciative to the MANY staff members who have showed us nothing but compassion & respect. I feel honored to have met several of them. I am sorry that I have to go SO far to get a second opinion, but it is a small price to pay to have my child tolerating feeds.
On a side note, if you have a child who needs hospital care in my hometown, you can ONLY take them to ONE of the 4 hospitals here, hope it goes well if you have to visit it.

Help me Hold on!

9 days in...OK, It seems with GI issues for Battboy, that I am caught in the middle. I want a second opinion. This doesn't seem so illogical when it is your child. Just another specialist to look at Battboy & give their evaluation. But for us it is a HUGE deal. 6 yrs ago, I was in a similar predicament & chose the second opinion. This led to why Battboy has been without GI doc for 6+ yrs... They have egos. I understand the concept, but when those egos have direct effects on your child, things look different. I just want to make the most educated decisions when it concerns Battboy, butt I am stuck in the middle. If I ask for second opinion, & don't like it, then the group following us now won't treat us. I could be jumping the gun on this observation, but I base it on past experiences.
I am going to call social work in tomorrow & discuss my concerns with them. They have the power to get all docs on the same page, or AT LEAST talking. I have no idea where to go from here, but I am NOT considering poking more holes in my child, until other options have been exhausted.  It seems sometimes that it is TOO much for a parent to ask.
I have always LOVED the hospital I have Battboy at, but if egos become a hurdle in getting treatment (desperately needed treatment) for my child, then I have to not only consider other options, I must DEMAND them.
This angel deserves SO much more than what he has been receiving here on his past few trips.
If you can't OR won't treat my child, tell me. Then I can move on. Don't leave me sitting here thinking you have SOME answers if you really don't, because that is MORE painful. More painful than some of these docs will ever realize.

Still Hoping

The past couple of days have had ups & downs. But as of today, all these issues with Battboy are pretty much the same as the day we came in. I have been hoping against hope that he would just start processing his food once he was completely "cleaned" out. After starting his feeds, 24 hrs later, we are back to square one. So chances of us getting stable enough with food processing to get out of hospital without making major decisions is looking slimmer & slimmer. We have to see what tomorrow brings...

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

Trying Something New

I have read countless blogs over the years, from funny to sad, inspiring to ranting, purposeful to ...well not so purposeful, as most of us have at some point. I love to write, some might even suggest, at times I may even be witty, you can be your own judge. I approach this first REAL attempt cautiously because recently I have decided the purpose of exposing myself to the blogging world, basically. Mommy Blogging! Thousands of moms do this, why me too? Well, as a stay at home domestic diva, I like many of you have SOME spare time on my hands, although it is sporadic, sometimes minutes, sometimes at 3:00AM, sometimes very little, sometimes a little more. I, too like to find humor or inspiration through.my routine daily life. I haven't often met a stranger I wouldn't say hello to, much less strike up a conversation with.. I have 2 beautiful children I get the blessing of taking care of everyday, some more blessed than others. So you get my drift. Why me? Why now jump into this mommy blogging thing?

Since I am labeling this mommy blogging let me start by telling you about my 2 children, who we will refer to as Battboy and Battgirl. Battgirl is the adorable age of 10, so you can imagine the stories and rants that may come about her. I mention her first because she is my little helper. Her willing spirit brightens my heart each & everyday. Battgirl can be a little strong willed. She is, honestly just like me. She also loves to craft, any craft and rarely cleans up her messes from said crafting. She loves animals, so we have 2 cats, Battcat & Battkitty, 1 puppy dog, Battpuppy. These are her heart & my headache.

Now let me get to Battboy, the reason I have been inspired to blog, for the most part. A delightful 11 year old boy who has seemed to touch so many people over the years. He is the first child I brought into this world, and let me tell you it was quite a ride. Battboy has Cerebral Palsy from a 12 week premature birth. He spent 3 months in the NICU before coming home to our little family. Within 6 weeks he was back in the hospital, and this was our cycle for years to come for a list a reasons that will all come up in this blog eventually. He is G-tube fed and non ambulatory, so is dependent on 24 care. He is truly my little miracle.

Through those many years of hospital, doctor, & therapy trips I met many other parents who had special needs children. Not to mention some of the caregivers, teachers. therapists and so forth who helped me get through difficult times along the way. Not just with caring for Battboy, but balancing giving Battgirl a somewhat normal life that doesn't revolve around Battboy and his needs. It is to these inspirational people that I have been inspired to mommy blog not only about my joys and difficulties of parenting in general. Parenting not only the special needs child, but the balance of that in our family with my other child, as well. Then don't forget the Battpets, they have needs and adventures to be blogged about too!

So there is your introduction the the Double Mama Drama! It is what is, and if my drama can help any one else along the way, then just learning this blogging thing will have been worth it.