Monday, July 21, 2014

Stomach Issues, Surgery, and 21 Day Fix

As I am writing this, I am anxiously waiting for Ellie's gastroenterologist [GI doc] to call.  Last Monday, Ellie had an ABR and an anorectal manometry performed under anesthesia.  Essentially girlfriend had a fancy hearing test involving electrodes and a complex rectal exam involving a tube with a balloon up her bottom and some funky wave patterns.  As expected, everything was/is normal.  Except for a ton of internal hemorrhoids :-(

Yes, she wore those boots into the OR.
Yes, they let her bring her flashcards too.

I cannot remember if I told you all or not, but Ellie was hospitalized in April for . . . are you ready. . . constipation.  Yep, baby girl couldn't go.  For over 8 miserable days.  She was distended and unable to eat much.  She was spitting up.   Nothing we did for her was working.  While it may seem ridiculous to be hospitalized for lack of bowel movements, it is common among preschoolers and school age children.  It is also serious--severe constipation that is.  Severe constipation can lead to colitis (infection) and intestinal perforation (ruptured intestine).  Perforations can lead to severe infection &/or death.  So yeah, you can die from complications related to constipation.  

Did I mention that her surgery was running 3 hours late?!

Bear has had GI issues off and on since 3 months of age.   If one more person tells me about prune juice, I will blow a gasket (I kid you not when I tell you that as we were getting discharged from the hospital, the nurse asks me if we ever tried prune juice?!??!  It was a miracle I didn't smack her with the discharge paperwork).  If I hear about fiber and increased water intake, I will also lose it.  These were the methods we used to treat Ellie's constipation when she was a wee little baby/girl.  Every once in a while a glycerin suppository was needed.  Ellie was more of a happy spitter.  Reflux R Us.  At age 2, Ellie had an Upper GI that rule out celiac's disease which can also present at constipation.  Her thyroid is checked every 6 months as hypothyroidism is also common in Down syndrome and can cause constipation.

Over the years, things have gotten worse.  We had to start giving Miralax daily even with her ridiculous consumption of berries and grapes (honestly, I would never be able to leave the bathroom with the amount of fruit this child eats!). 

This year has been particularly rough.  Her Miralax doses go up and down, but she is never off of it.  The constipation gets better for a few days and then worse and then better and then worse.  Occasionally things get pretty bad like in April and like this week.  I am constantly told that she must be withholding (as in refusing to poop because it may hurt) but her rectal vault is empty.  This means there is no urge to go and so it sits and sits and sits higher up.

When things get really bad, one day may look like this: 

1-2 capfuls of Miralax (up from her usual 1/4-1/2 cap)
Exlax
Milk of Magnesia
Pedi Fleets Enema

This may produce nothing.  We do enemas in 3s--Friday, Saturday, Sunday.  Exlax can only be given twice a week, tops as it is a stimulant laxative and the gut can get dependent on them.  So guess what we tried to do this past weekend?  You guessed it!  Enemas.  Only the 2nd one wouldn't go in.  I don't know if I hit a hemorrhoid or what, but I would not force it. We skipped the 3rd and called GI.

What happens when she still doesn't go????  X-rays.  They look for an obstruction.  Usually the obstruction is stool, very high up in her gut.  


In April, she was refractory to treatment and we were sent to the ER to then be admitted for nasogastric tube administration of GoLytely.  All of you who have undergone bowel prep for colonoscopies know what I am talking about.  There is nothing like watching your child scream in pain as her abdomen becomes taught and swells to the size of pregnancy while that GoLytely tries to get absorbed.  Then, thankfully, 8-9 days of waste flow out and girlfriend is no longer uncomfortable.

After that hospital stay, it became apparent that Ellie's constipation is stubborn.  And severe.  The anorectal manometry was ordered to officially rule out Hirschsprung's disease., which is another issue that can be more common in Down syndrome.  Hirschsprung's is usually diagnosed at birth when the baby doesn't pass meconium (that first tarry bowel movement) due to missing nerve cells in part of the colon.  However, mild cases may not be diagnosed until late childhood.  The manometry looks at how the internal and external sphincters coordinate--imagine if one opens but the other closes.  It looks at how the rectum responds to pressures as the doctor inflates and deflates the little balloon on the tip of a tiny tub inserted in the bum.


Wave patterns.  Anorectal Manometry
Image: www.ajpgi.physiology.org
Picture of balloon catheter for Anorectal Manometry
Photo: www.mja.com.au
So here I sit at the computer, waiting as my daughter is going on day 8 of no bowel movement.  Waiting for the results of the X-ray and praying that soon my child will find relief.  Thankfully, Ellie is still eating okay and she doesn't seem uncomfortable.  I am hoping that we can find some way to manage her GI problems without constantly traumatizing her.





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A few weeks back, I wrote about my lifestyle modification that led to a fair amount of weight loss.  I have had many readers contact me to find out more.  I want to let you know that I am starting a 21 Day Fix Challenge in August through Beachbody.  This is the Challenge that changed my life and led me to become a beachbody coach.  If you are interested or know of someone who might be interested, message me through my FB page 
or email me at thechroniclesofelliebelliebear (at) yahoo (dot) com
You can also learn more at 



I still can't believe I am posting before and after pictures!



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Tuesday, July 8, 2014

Therapeutic Horseback Riding-ERCT

We are fortunate to be a member of the Austin Special Needs group and the founder is a wonderful woman who tries to find all sorts of activities for kids with various abilities.  She recently set up a visit with Equine Rehabilitation of Central Texas [ERCT].  During this trip, Ellie had the opportunity to feed and groom horses and to ride a horse.



More on how this went with Ellie in a bit!

I have heard of hippo therapy and equine therapy, but I never really understood what it was.  Here is wiki's take on it:


Hippotherapy is a form of physical, occupational and speech therapy in which a therapist uses the characteristic movements of a horse to provide carefully graded motor and sensory input. A foundation is established to improve neurological function and sensory processing, which can be generalized to a wide range of daily activities. 


Equine therapy, also known as Equine-Assisted Therapy (EAT), is a treatment that includes equine activities and/or an equine environment in order to promote physical, occupational, and emotional growth in persons suffering from ADDAnxietyAutismCerebral PalsyDementiaDepression, Developmental Delay, Genetic Syndromes (such as Down Syndrome), traumatic brain injuries, behavioral issues, abuse issues, and many other mental health problems.[1] Equine Therapy can help the individual build confidence, self- efficiency, communication, trust, perspective, social skills, impulse control, and learn boundaries.[2] Since the horses have similar behaviors with humans, such as social and responsive behaviors, it is easy for the patients to create a connection with the horse.[3] Riders with disabilities demonstrate their remarkable accomplishments in national and international sport riding competitions. Equine-Assisted Therapies all over the world have developed as a medical field recognized by most major countries.



Photo courtesy of horserct.org
This makes me so angry.  I am happy to report that he looks much healthier.


Ellie was under the mistaken assumption that we were going to go ride the horses, aka carousel, at the mall.  Imagine her surprise when she realized that they were real horses.  At ERCT, these horses were neglected and rehabilitated back to health before being trained to serve as therapy horses.  Upon arrival, girlfriend was led into the barn to feed the horses hay and carrots.  It did not go as planned.  She was afraid of the horse.  Excited, but scared.  She took great pleasure in gathering the horse feed and placing it in our hands.  Giggle of delight escaped her lips as Andrew and I fed the horse.  Giving Ellie the feed elicited cries and frantic shaking of her head  "nooooo".



Now Chicken was due to ride a horse and I am not talking about a Shetland pony here, folks. I mean a horse.  Big horse.  Imagine our surprise and shock when Ellie hopped onto that horse!



Riding the horse worked dramatically on her core strength and it wore her out more than any other activity.  Not only was her core working and her legs working to hold her up but also her mind.  She needed to channel all of her concentration into staying on top her horse.  Take that ADHD!  Her communication was also put into practice.  She had to give commands to her horse such as "walk on", "stop", and "go".  Ellie has to sign walk and stop sounds a bit like "op!", but her "go" is perfect.  Finally, her fine motor skills were honed in while she was forced to hold the reigns.



Next week, she will start regular lessons and learn to groom and feed her horse.  She will learn to care for her saddle and will also build an unspeakable bond with her horse Mickey.  Er, Icky!

*ERCT is a nonprofit 501(c)3 that is run by volunteers and donations.  It can cost upwards of $3,000 to nurse a emaciated horse back to health.  Lisa, the owner, is always looking for people to volunteer.

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Monday, July 7, 2014

Michelle's Journey: A guest post

I would like to welcome guest blogger Michelle from The Hailey Herald.  Michelle and I are not only blogging buddies and Facebook buddies, but also cyber workout buddies.  Michelle has done a major lifestyle overhaul, because like me, she needs to live forever.  She is an inspiration and keeps me motivated to continue to make permanent changes in my life.  Michelle has been on the beachbody journey longer than I have: 21 Day Fix, T25, and now PiYo.

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Kicking Booty
by Michelle Arthur


As a mom, it is pretty normal to put yourself on the back burner and put the kids first.  It's what we do, right?  It's what we are expected to do, right?  Well, unfortunately, I was doing that even before I had children.  I didn't put my health first.  I have had a weight issue as long as I can remember.  I remember it as early as 6 or 7.  I was an emotional eater and portions were always too large.  I did ok through junior high and high school.  I wasn't fat, I wasn't thin.  I didn't exercise enough.  Enter college and the eating was worse and the exercising was worse.  I'm positive I added the freshman 15 or maybe even 20.  After college, I entered the workforce.  I worked then went home.  I have always eaten a lot of fruits and veggies, but I've also always eaten sweets, drank pop, and ate too many carbs.  Then came four pregnancies. I never gained much with the kids and I always took it all off.  I would gain 5 here and lose 5 there, but nothing more and nothing permanent.  I would focus on eating and working out for a week or two here and there.  It was always short term and a quick fix.  As a result of the weight and eating, after I had my babies, I didn't go off of my blood pressure medicine.  It was a permanent fixture in my daily routine.  I truly thought I was the size I was and nothing was going to change it.

Back in February, my sister-in-law asked if I wanted to do a 21 day clean eating program with her and another sister-in-law.  Sure...why not?  What's the worst that would happen?  I knew that my eating needed to change, but never took the initiative to do it and it's always better to suffer together, right?

With the eating program, there were 30 minutes workouts.  The first few days seemed like torture.  I had given up soda back in October so drinking strictly water was easy.  Reducing my carbs were a bit more challenging.  I did find out that I wasn't eating enough protein nor were my veggie and fruit servings big enough.  21 days actually passed quickly.  There were days that I wanted to sway off of the program, but I stuck to it.  At the end, I had lost 15 pounds.  I felt better about myself and was stronger.

I don't follow the program as closely now, but I have lost a total of 40 lbs since February and have dropped 3 sizes.  I would like to lose 5 more, but we shall see.  I am the size I was in high school and a few pounds lighter than then.  I have done a major overhaul on my eating.  I crave healthier, cleaner foods.  I search for recipes for my family that are better for them and me.  I love finding new recipes for vegetables and whole grains.  I know some of my friends laugh at some of the foods I've tried, but honestly, food tastes better now.  I eat oatmeal every morning....before this, I loathed oatmeal!!!  My new favorites right now are Greek salads and sweet potato nachos.  Spaghetti squash isn't too bad either.

I had a yearly physical last week with my doctor.  My bloodwork was fantastic!  My triglycerides went from 157 to 45.  My blood pressure dropped from 150/80 to 106/80.  For the first time since high school, my BMI and weight are in the healthy, normal range and not considered overweight or obese.  My doctor was quite surprised because my numbers have been similar for years.  She asked what I had been doing.  I told her lots of exercise and an overhaul in the kitchen.  She commented that most people know 80% of their weight issues start in the kitchen, but that most people don't want to hear it.  I was one of those people.  I've done the working out portion for years now, but every time my food would stay the same or only change for a week or two.  I always failed.  Now and then, I have foods that are horrible for me, but each day is a new day.  I don't feel guilty about it.  I just control it.  I've given up emotional eating and eating out of boredom.  I'm more conscience of it now.

It's not been an easy road and I'm sure it will be a constant battle most of my life (it has been most of my life anyway).  I did this for my family...for my kids...for me.  For the first time in my life, I am comfortable in my own skin.  I feel good about who I am.  I'm not embarrassed to be in public with my kids.  I didn't want my children to think that their mom was fat.  I'm hoping my children will gain a better relationship with food and have the knowledge to make healthier choices and know that exercise is an important part of life.

I'm actually okay with pictures for the first time.  I think it is because it is the only place I can actually see the difference.  I still don't "see" it in the mirror even though, I have entire new wardrobe with clothes that are sizes I never dreamed of wearing ever.  You may not be able to tell much from the pictures.  I had a habit of cropping out the bad parts and would only do from the waist or chest up.  

Brayden's birthday last August

Jason's birthday in October

Top pic is Ian's birthday last year and the bottom is Ian's birthday this year.
This year...girls weekend in May

Ian's birthday this year

Father's Day this year



Sunday, June 29, 2014

Ellie's Television Debut

Back at the end of March, I was in Wisconsin for my SIL's bridal shower.  That's right folks, be shocked that my baby brother found that special someone!



While I was away, I left explicit instructions that Ellie must arrive on-time to her dance class and that she MUST not wear pajamas.  The second one I was most concerned about.

You see, Ellie participates in a special needs dance class through the charity 2dance2dream.  McKenna Carr is 19 years-old and volunteers her time teaching children with various abilities how to dance.  This includes kids with spina bifida, cerebral palsy, autism and of course Down syndrome.  She knows sign language which is a pretty big deal! Ellie and Jack, who has tuberous sclerosis complex, happen to be in their very own dance class.

Ellie and McKenna
Contrary to what this pic shows, The Bear loves McKenna.
She loathes me taking pictures.

Because McKenna selflessly gives herself to others, she was nominated for a special award through KVUE's 5 Who Care.  Sheryl, Jack's mama gave an awesome interview expressing the thoughts that I was not able to share since I was in Madison.  Andrew, hid in the back.  Apparently, he is camera shy.  My daughter is not.


Here is the new segment: http://www.kvue.com/videos/news/local/outreach/five-who-care/2014/05/26/2457648/


Look!  no pajamas :-)
Bear stole the headband from awesome volunteer Elizabeth.
Thus began the birth of Ellie's headband obsession.
Camera shy that is.

Girlfriend flirted with the camera man like there was no tomorrow.  This means she only got a cameo on the news show because she was too busy trying to "help" film the class.  Jack was a freaking rockstar as you can see in the news video.




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