The Pumpkin Patch and Updates - GI, Urinary, Sleep Apnea, Cervical issues, Etc

You all should be proud of me as it has only been 3 weeks since my last blog post.  Longtime Ellie Bellie Bear readers, do you all remember back in the day when I wrote at least 3 posts a week?  Progress!  Seriously, everyone, I have 4 or 5 open blog posts sitting in the queue waiting to be completed.  Such as the one that I wrote way back in June on lice.  I really need to finish that one up because Ellie has lice again back in September!

As usual, things have been chaotic, but I made sure that this past Columbus Day we spent part of the day doing something enjoyable.  We had such beautiful weather that Ellie and I spend the day outside and then too a trip to the local nursery to pick out a pumpkin. . . er pumpkins.  Bear was the only child there and there were two lovely ladies picking out flowers and 3 landscaping guys as the Red Barn Nursery.  They all held little secret smiles as she would go running by (and when she ran up to the landscaping dude and gave him high-5s).  My daughter, the entertainment at the local nursery.  The frolicking fairy princess.

Ellie Bear thought it was quite the game to gather up pumpkins of various sizes to add them to our cart.  The Chunky Chicken was under the mistaken impression that was going bring those 5 or 6 of those personal-sized pumpkins and 12 minute pumpkins.  She would dance (yes, dance, frolic, sashay) her way back to the cart with a mini pumpkin in each hand.  Perhaps the most entertaining part of the trip was Ellie's vast fixation on gourds.  Especially the funky looking green one.  She was adamant that we take that one home with us.  As well as the one that I think looked kind of like a light tan-colored, bowing goose.

Now, what is the Bear going to be for Halloween?  That is a great question because I don't know the answer to that either!  Ellie hasn't been into dress up lately.  I was thinking Flash dance given her propensity to don leg warmers during dance class.  However, I imagine she will saunter about the neighborhood in her glow-in-the-dark Mickey Mouse pajamas like the little diva that she is.

Ellie spends time in both special education classroom [FAC] and general kindergarten.  Of course I signed up to be room mom in the kinder class.  Several people have asked "are you kidding me?!  Don't you know that room mom is a lot of work?".  Yes, it is yet it is always a great way to meet people and be involved at the school. (Maybe now isn't the time to also mention that I am the inclusion parent liaison as well).  Ellie's school no longer offers Halloween parties.  Pumpkin Math does not count, folks.  So this past Saturday, all of us room mom's in Ellie's kinder class though it was be fun to host a mini Fall -Festival at a local park with snacks, crafts, and goodie bags and with costumes being optional.  All of the children had great fun and it was exciting to hear several of the boys say "Ellie's here!  Hi Ellie".  Ellie liked her alone time, but she still did well socializing with the other kiddos.  Several parents all came up to me to share that their child talks about Ellie at home saying that "she is in the class some of the time, but she is in two classes. I like it better when she is in my class". Andrew and I had the chance to meet many of the parents. To say that her school and her kinder class is welcoming is an understatement.  We are thrilled to be a part of this community!

Pumpkin Dancer

Now for some very quick updates.  I promise to write more in-depth posts later, but since I have been asked by a few people for news, here you go:


GI / Urology
For a while the constipation was worse.  We were doing a lot of enemas just to get her to go.  When I called GI, they recommended lactulose.  I imagine you all heard my maniacal laughter at you own homes as this child has been on lactulose in the past (you know that neon green liquid that she has to swallow 1 TABLESPOON twice a day) and it did not work.  The telephone call seemed to be the best treatment because she has been uncorked now.

Urology - she was seen 2 days after my post! No real answers.  Kidneys are good.  Yay!  Possibly related to constipation (um, not completely because she has been backed up way worse and was still urinating several times a day) and possibly a disconnect between bladder contraction and urinary sphincter.  We watch and wait.  If she gets kidney damage, we will look into doing routine, daily catheterizing - please say a prayer that we do not get to that!

Weight - so she has either gained a 1/2 pound or 1.5 lbs. depending on the scale since we started the appetite stimulant in July.  Wooohooooo!!!!!!  AND she has grown in height as all her pants are too short.  First time in over 2 years that I have needed to purchase new clothing for Ellie

Sleep Apnea/ENT:
Last week we met for the Sleep Apnea Clinic which is a double appointment with an airway ENT and the sleep pulmonologist.   It didn't go as planned as the ENT got called away to an emergency.  These things happen, but I was practically in tears after we left the clinic.  We waited months for the appointment.  Her apnea/snoring is worse.  And I pulled her out of school for nothing.

Later that night I got a call from the nurse.  The ENT reviewed the Cine MRI of her head and neck.  She has complete obstruction at the level of the epiglottis.  It could be epiglottis insufficiency from laryngomalacia (aka floppy airway) or due to large lingual tonsils (tonsils below the base of the tongue - not the ones you see when you open your mouth) pushing on the glottis.  We will do a laryngoscope at the rescheduled visit which is in 1.5 weeks.

Surprise MRI Finding: upon looking at the Cine MRI, it was determined that she has widening at the C1-C2 vertebrae suggesting instability.  Aka Atlanta-Axial Instability.  About 15% of people with Down syndrome have this, but for only 1-2% of the people, this is an issue. Right now, Ellie is scheduled to get repeat lateral neck X-rays to determine if she does indeed have AAI.  It does make me wonder, can the instability cause Ellie's bowel and bladder issues?

Me: I think this also needs to be its own blog post, but it will explain why I have neglected the blog lately.  I am still having massive issues with my lower back and sacroiliac.  The sciatica is mostly resolved.  I did receive a nerve block back in May, but it wore off after only 2 months.  The last 4-5 months my neck has been a mess. With lots of pain and signs of arthritis from C3-T1.  Certain movements cause pain and/or numbness down my left arm.  I have had several shots, chiropractic appointments, therapeutic massages, and visits with my pain and physical rehab doctor.  I have also been diagnosed with fibromyalgia.  I was in a car accident last month which exacerbated everything.  Last week I got a neck X-ray which showed that my clavicle is really messed up where it connects to the breastbone and I am waiting for MRI results of my neck and lower back.  Some days are difficult to get out of bed, but I am trying my best to eat well and continue with my PiYo exercises.



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Merry Christmas, Happy New Year and Influenza

It is December 27th.  Just a few days left in 2014.  As I click through the photos that captured our Christmas celebrations, I start to look back over the year.

As with any family, there are ups and down.  Triumphs and heart break.

I am going to gloss over the trials--Ellie's gastrointestinal and sleep issues, my torn hamstring and chronic back issues, my canceled trip to see my best friend, Andrew's wisdom teeth removal, my good friend's cancer diagnosis--and focus on the joys for 2014.

Nearly 1 year ago, Andrew left his long-time job at IBM to take a position with Red Hat, Inc. (I have no idea what exactly he does, but it involved tech stuff).  I was excited by the prospect of moving to the Boston area.  After all, I moved to Texas from the East coast and my best friend lived just an hour away.  Andrew was elated he found out that he could telecommute.  In mid-January, Andrew packed up his office and relocated his place of business to  . . . our dining room.  I so did not win the "let's move to Boston" argument, but Andrew is much happier now that he can roll out of bed and go to work in his PJs while working for a company that he loves and believes in.

We celebrating an early Christmas with my parents. 

Andrew also started to work on a bench to go with our kitchen table.  After 11 months, this large, gorgeous oak bench with tons of storage was finally completed and it made its home in our kitchen just 2 weeks ago.  Andrew really has a talent for architecture and wood-working.  There will be a future blog post on Andrew's DIY activities and believe me when I say you will be impressed!

The year of 2014 is the year that Ellie started to really communicate with us and all around her.  Andrew and I started to see changes in Ellie around February and since then, her communication skills have exploded.  Her signs are more fine-tuned.  She continues to make up signs, which confuses us until we finally figure them out using our powers of telepathy.  She is trying to vocalize.  In fact, with prompting, The Bear can say "I want red juice, please"!

We spent Christmas day at my BIL/SIL's new house in Celina.
For once, Ellie didn't run away from me at picture time.
To avoid the stink-eye, I tickled her.

Over the summer, The Chunky Chicken rode a horse for the very first time.  We thought that she would be scared seeing as she was petrified to go near a horse, but she was a rockstar.  Now, every Monday evening, Ellie has horse therapy.  She tells us "horse" and "key key" [donkey]. The changes that we have seen in Ellie are remarkable and I know that horse therapy is one of her favorite things to do.  Dance classes started back up this Fall and with it, Ellie's gross motor skills have progressed.  She is also imitating everything! She also has several of her own "fashion" posts--on this blog, Instagram, and Facebook.  Oh and did I mention that my BABY turned 5 years-old???

A very sleep deprived Ellie was an ornery little thing at her
classroom Holiday party.  She dumped plates of fruit onto the floor and shook her juice
onto the table.  However, when it came time for the piñata, she waited her turn!

As for me, I got my life back on track.  After years of yo-yo dieting and suffering from poor body image, I finally took control of my life and lost almost 30 lb.  In April, I participated in a 21 Day Fix challenge and I saw a significant change in not only my body, but also with my mental health, sleep, and energy levels.  I then decided to do something that was both exciting and scary--I became an Independent Beachbody Coach and run my own health challenges that focus on physical activity, clean eating, and mental health.  These past few months have been both exciting and challenging as I am now self-employed and trying to figure out the home-work-family balance.  This year, I will not be making the resolution to "loose weight", but rather focus on loving myself, becoming stronger, and creating healthier versions of my favorite foods.

Ellie was a little overwhelmed by all the presents at my in-laws' house.
She also didn't understand that some of those presents were not for her.
Well, maybe she did understand and just didn't care!

In May, our little family went to Madison, Wisconsin for a family vacation.  We stayed with my parents in a rented cabin along Lake Kegonsa.  The weather was gorgeous, the scenery was beautiful, and the company was the best.  After a week in Madison, we headed on down to Rockford, Ill where I gained a sister!  That's right, my baby brother Matt finally found a woman to put up with him.  Amber is the sister that I have always wanted and I am so happy that Matt finally got around to proposing to and then marrying her.  I would have been really unhappy if he let her "get away"!  Goal for 2015: convince the Bruns family to move to Austin.

A few weeks ago, my parents came to visit our little Austinite family for a week.  Mom and I got to see Trans-Siberian Orchestra, which was full of complicated guitar and electric violin rifts, amazing vocals, pyrotechnics, laser lights, and creative stage scenery.  I do hope that we can make Trans-Siberian Orchestra a tradition.  Of course we did our usual baking cookies with my mom, dining at Z-Tejas, and visiting Santa Claus.

Andrew, Ellie, Sophie Dog, and I made the drive up to Plano, TX to visit Drew's side of the family for Christmas.  The car ride up there was very difficult since I haven't been able to drive more than 20 minutes due to my back, but Ellie was very chill in the back seat.  As opposed to her usually screaming after 2 hours in the car.  We had a really nice visit with my in-laws complete with Dunja's awesome cooking, Charles delicious pies, and movies!  We finally saw Gone Girl.  Mama Dunja and I had a hard time holding it all in since Drew and Papa Charles didn't read the book. We also got to see most of my nieces and nephews and one of my great-nephews!  The drive back was excruciating and required frequents stops and limping (sciatica sucks), but I do not regret making the trip.  In the Theurer household, nothing is more important that spending time with family.

We spent Christmas Eve and Christmas Day in Plano.  Ellie got a kick out of
Grandma Dunja  showing her the camera.

True to Ellie Bear form, 2014 is ending with a BANG!  Ellie was just diagnosed a few hours ago with Influenza A and an ear infection.  Girlfriend certainly knows how to ring in the New Year!

*The photos in this post are from: Breakfast with Santa at North Austin Mother's club, Holiday Party at Ellie's school, Lakeline Mall Santa, Christmas with my parents, and Christmas with Andrew's mom and step-father, et al.



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Updates: GI and Liver, Back Arthritic Pain

It feel like it has been a while since I wrote a good update on everything that has been going on in the Theurer household. Believe it or not, the reason it has taken me so long is because things are going well and the worry is mostly gone.

Contrary to what it looks like, Ellie is not picking my nose!

ELLIE'S GI UPDATE:

In October, Ellie got moved from twice monthly appointments with the Gastroenterologist, to once every 3 months!  At the last visit, we reviewed all of Ellie's lab work-thyroid panel, metabolic panel, celiac screen, CBC, lead, vitamin D, and a bunch of IgA stuff.  All of which was thankfully normal!  However, she had continued to lose weight.  I requested an Upper GI in hopes of officially ruling out celiac disease, which is something that is more common in people with Down syndrome.  The blood tests can come back as false negatives or false positives repeatedly so the upper GI is the gold-standard for a definitive diagnosis.  The GI doc agreed that if she is still losing weight in 3 months, he would do the Upper GI.

The Good News:

Bear started to eat!  A LOT!  Like 2 croissants, a cup of raspberries, and a zone bar in one sitting.  She has even eaten breakfast a few times.  We still have days where she may not eat more than 200 calories, but they are few and far between.  I am going to have my Chunky Chicken back!

We seem to have a successful bowel regimen for Ellie.  We are continuing with the Miralax and are administering senna for 2 weeks on and 2 weeks off.  Senna is a stimulant laxative, as opposed to osmotic, so the bowel can become dependent on it.  This is why we do not do it everyday.  I was really worried that a full 2 weeks on would trigger dependence, but she seems to do fine on the off weeks.

Liver Scare:
Just when things seem to be going along fine, Ellie freaks us out.  For 3 weeks, Ellie's stools were super pale.  Think flesh-colored.  Clay-colored and white stools can indicate a problem with your bile duct or production of bilirubin.  Bile is used to break down fats and gives stool its brown color.  A liver or gallbladder problem can present as pale or white stools.  After a full on liver panel and an abdominal ultrasound, we learned that Ellie has abnormally small, but normal formed kidneys.  Her blood work came back normal and her liver, spleen, gallbladder, and pancreas were normal!

We do not know why her stools were they way they were, but I am positively relieved that she doesn't have any liver problems!

MY BACK/HIP PAIN, ARTHRITIS, SCIATICA, AND HAMSTRING INJURY:

Back in July, I managed to tear my hamstring and obturator externus by falling a whopping 6-inches to the ground.  I was on crutches for about 3 weeks and in some serious pain.  My back pain, which had been improving, took on a downward spiral after this injury.  I felt like I was back to baseline, but this time with the posterior of my thigh and groin on fire.  My Dr. K had me do a trial of Neurontin to help with nerve pain.  Let's just say that it really does help with nerve pain, but it can also headaches, fatigue, and dizziness.  I found myself with an incapacitating headache and nearly passing out.  I tried to push through and see if the side effects would subside, but they did not. Needless to say, Neurontin was not a good fit for me.

It was finally determined by my physical rehab doc that I would need a 2nd opinion (good thing I already had one lined up!).  There was pretty much nothing more that he could do (already tried pain management, TENS unit, PT, steroid shots, chiropractic care which made it worse).  As a farewell gift, he placed a steroid shot into my right sacroiliac joint and another into my ischeal tuberosity bursa--think the top part of the hamstring near your butt.

Miracles do occur!  I was told that the SI shot would probably do nothing as only 1-3% of people with back pain have it stem from their SI joint.  Um, he was wrong.  I had searing nerve pain all the way down to my toes when he injected the steroids.  To me, this means it worked.  My pain improved in a matter of 5 days.  My bursa shot freaking cured my hamstring immediately.  I could walk!  I have lost a lot of hamstring strength and flexibility and I am struggling to regain it. Honestly, I wonder if my hamstring will ever be back to where it was before my fall.

A few weeks later, I met with Dr. S, a neurosurgeon.  He reviewed my MRI and said he saw the following:

Compressed discs with herniation into the spinal column L4-L5 and L5-S1
Connective tissue tears in the disc L4-S1
Bony deformities and enlargement of the lumbar facets joints L3-S1 (aka facet hypertrophy)
Minor nerve impingement due to the enlarged facet joints decreasing space for nerve movement.

At this point, I do not need surgery.  Whoooohoooooo! Actually, for my issues, there isn't any type of surgery that would help me.  I sort of figured this and I didn't think my pain and activity limitations were severe enough for surgery anyway.  If I start to have significant nerve problems, he can file down my facet joints.  Oh fun. He also told me that I will always  have pain and it will get worse as I age. He is just full of sunshine and rainbows!  Dr. S did say that since the herniations are acute injuries, the pain from that will subside in a few months.  Until then, I am to build up my core muscles through pilates.  Good thing I have been doing PiYo.  Abs of steel, baby.

My favorite stretch for my hip flexors

I just completed the 60 days of PiYo which is a combination of pilates and yoga.  The Lower Define workout really helps my back and hip.  The Warrior poses and Pigeon bring the most relief.  I am able to sit for longer periods.  For the last month, I have been able to drive Ellie to her horse therapy and dance class without excruciating pain.  I am very functional most of the day, but then I am pretty sore by the evening.  At night, I have a hard time sleeping.  Still, I am much happier, stronger, and less depressed.

Addendum: November 18, 2014
I think I jinxed it all by writing this post.

For the past few days, my back has not been all that great.  I am super stiff in the morning.  As the day goes on, it starts to hurt so that by bedtime, I have trouble sleeping due to pain.  It is not unbearable, but it is enough that I put a call into my Physical Rehab doc.  I imagine it will be several days before I hear back.  Until then, I am having lots of intimate relations with my ice pack.

Most likely because Ellie is eating again, she is all backed up.  We double her Miralax dose at the end of last week.  Exciting news: the last two days, Ellie requested to sit on the potty!

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Updates all around

*TMI alert: this post will have a bit of a poop discussion.  If you are squeamish about issues of the bowel, please skip that section.

Ellie's GI Update:

A few weeks ago, Ellie had a follow-up appointment with GI.  We discussed how small doses of Miralax cause explosive diarrhea, but she will then suddenly become extremely backed up.  Once she goes 2 days without a BM, she will become resistant to high doses of Miralax + Exlax.  There is no explanation for this.  In fact, 3 GI docs have no clue.  Bear is an enigma.

Currently, we have had a few weeks of very loose stools.  Some are so loose that they run down her leg into her shoes.  They go up the back of her pants and lower part of her shirt.  Several sets of pajamas and clothes have met their untimely demise.  As have 3 sets of boots. The bedroom carpet has been shampooed 5 times.  We now have very clean carpets and I am grateful that we own a carpet shampooer. FYI: Pet Enzyme Cleaner is awesome for human excrement as well.  I am petrified that this will happen at school for all the other kids to see.

Additionally, in one month, Ellie lost nearly 2 lb. The first pound happened in the week between her anorectal manometry and the last bought of constipation.  She was eating.  Then, she stopped for a few days.  For a few weeks after that, she was getting around 400 calories.  A 4 year-old should consume 1,400 calories/day.  Children with Down syndrome have slower metabolism by about 10% unless they are active.  Even still, Bear should have been getting closer to 1,000 calories/day.  She would ask for food and then it would sit there.  She would throw a brownie in the trash and ice cream in the sink! Within the next 3 weeks, Bear lost nearly another pound.

Ellie's GI doc was rather alarmed.  He reviewed her Upper GI from 3 years ago (back when she was Miss Spits-Up-A Lot) and saw that her small intestine had localized WBCs.  This could have been an early sign of celiacs.  Add in the alternating constipation and diarrhea plus the weight loss and there was a suspicious of celiacs disease.  Ellie has been screened in the past for celiacs as this is very common in people with Ds.  Her test was negative.  That being said, it is possible for there to be false negatives.  The true test is an upper GI with a small intestine biopsy.

The GI doc ordered 5 vials worth of blood work--most specific tests for celiacs, IgA stuff, tests that looks for inflammation, another thyroid and Vitamin D, and the usual CBC and metabolic panel.  All tests came back negative.  Chances are with the 2 celiac screens being negative, Ellie most likely does not have celiac disease.  In the meantime, we have been encouraged to feed this child anything, ice cream, desserts, anything with a heavy caloric content.  Of course this goes against the very foods  she willingly eats--berries.

Tragedy: the icing is touching the cake

Two dear friends of mine spoke with me extensively on the phone.  I am forever thankful for their support, prayers, and advice.  We hypothesized that the unstructured summer routine could have been affecting her eating habits.  As it turns out, they were right.  The day school started, Ellie ate some lunch!  Then she would have an afternoon snack and even dinner.  A later dinner, but a dinner nonetheless!  She is now getting close to 800-1,000 calories and so I hope that there will be some weight gain.  Some days are still rough, but I think the structure and peer pressure of classmates eating have triggered something.

My Back & Hamstring Update:

Five weeks ago, I fell and managed to severely strain several areas of my hamstring and obturator externus muscle.  After 2.5 weeks of crutches, I was cleared to walk very very short distances.  My pain was intense.  Both hamstring and back.  The hamstrings, quadriceps, core, and hip flexors help support the back.  By injuring the hamstring and groin muscle, I affected the stabilization of my back. Physical therapy was tough in that I could only do a few exercise because there was a concern that I would further damage my back.  I lost so much strength and mobility of my right leg.  I couldn't drive more than a few miles.  That slight pushing on the gas and brake pedals utilized my hamstring too much.

Left: hamstring & ischial tuberosity
Center: Obturator Externus msucle
Right: Sacroiliac

One week ago I saw my physical rehab doctor.  He told me it was time for a second opinion as my options are exhausted.  Not what I wanted to hear.  He also recommended a steroid shot in my sacroiliac joint [SI] and in the ischial tuberosity bursa [back of the upper thigh].  The shooting nerve pain that I experienced with both shots suggested that there were the inflamed areas causing my intense, debilitating pain.  Sure enough 3 days later, my hamstring pain significantly decreased and today my hamstring is pain -free.  I am able to walk further distances and this week I can start doing squats.  I never thought that I would be so excited about squats!  By the end of next week, I may be able to restart my PiYo workouts which really help my back.  My back still isn't great.   The mornings are okay, but the evenings are horrible.  I still can't drive more than a few miles but, Andrew has been a big help in taking Ellie to therapy and helping out around the house and my mom flew down from St. Louis to help out.

A week ago, I couldn't extend my leg at all.  Progress!

Being unable to workout has been very difficult.  It has been 5 weeks.  The PiYo was one of the main therapies that helped my back.  I have been trying so hard to maintain my healthy lifestyle.  Normally, at this point, I would have given up. Fallen off the wagon.  Returned to my stress-eating ways.  Fortunately, I stocked up on my chocolate shakeology and have been experimenting with various recipes to shake it up a bit (more on this in a future post).  It has prevented me from binging on donuts and ice cream since I have the chocolate flavor.  Amazingly, I have lost an additional 3 pounds in the last 5 weeks and I attribute this to the healthy eating and Shakeology.

I need to get back to this!

As my friend Mary always says "Forward With Hope!"

Ellie Antics, More Updates, Memory Lane

Pity Part Post on top.  Bear antics at the bottom.  Throwback Ellie photos throughout the post.

When I left off on Monday's post, I was waiting for two doctor's offices to call: the pediatric GI and my physical rehab doctor.

Ellie's GI called after hours and got the low-down on Ellie's Sitzmarker test results (her care was managed by the on-call doc that week as her doc was on vacation).  They decided to keep her Miralax at the high dose and to use 1/2 square of Exlax w/ Senna daily for 2 weeks.  Um, right.  They do know that slow transit constipation won't go away in 2 weeks, right?  Still, let's just say it is working.  Our washing machine is constantly going and I need to buy stock in Huggies.  And baby wipes.  Not so sure Costco can keep us stocked.  I also now have the perfect excuse to buy more clothes for the Bear as some of her clothing have met a disgustingly untimely trip to the trashcan.

I've been going through old photos :-)

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My physical rehab doc, while nice (and good looking) sucks at telling the nurse the plan of care.  She isn't so hot at calling back.  I called first thing Monday morning about my sciatica being so bad and then nothing from their office all day.  Just before closing, I decided to call again and surprisingly got the actual nurse and not the voicemail.  I am to be resting for 1 week with Lortab around the clock and start Neurontin for nerve pain.

Since Monday, I have discovered two more things:
1. Either my back/hip/leg can find relief or my hamstring but not both.
2. My husband is a rockstar!  I hit the jackpot ladies and gents!  Be jealous.  That's right folks as not only did I get a sexy hunk of man, but I also got brains and housekeeping!

I mucked up my hamstring.  I take full responsibility.  I went Sunday and Monday without the crutches.  I may have squatted a few times to pick up something or change the Bear's britches.  Apparently, this was not a wise move even though I was cleared since last Thursday to stop the crutches and return to PiYo (another nurse call that was not returned)

PAIN.  Pain with walking.  Pain with driving. Pain while sitting.  Pain while laying down on my back or side.  Not too bad while on my stomach but then shooting nerve pain across my back and down my leg!  I have had strains/sprains before but not this.  I am thinking that I might have partially torn my hamstring.

I called the doctor yesterday [Tuesday] and felt like a real goof.  "Dr. K. when I told you yesterday that my hamstring was better, I lied.  You see, it is worse.  I am resting for my back and lortab works but apparently it does nothing for the hamstring. Can I jump off a building?  Use my crutches some more?  Wail like a banshee at the unfairness of it all?"

Supposedly he didn't like that message as I received no return call.  This morning I called back.  No answer.  I thought to call the emergency number.  I got a real person!  Only she transferred back to Dr. K's nurse, but not before telling me it was Dr. K who never got back with her.  So, I have left yet another voicemail.

I am not going to lie.  I am going stir crazy.  I NEED more coffee!  I NEED to go to the store.  I NEED to play with Ellie Bear.  I NEED to get out of the freaking house!!!!!

More than anything, I feel helpless with mama guilt.  I had these big plans of fun (and educational) outings to do with Bear.  We purchased a Children's Museum pass.  We have gone once.  I got a group on for the indoor playscape that has air conditioning.  We have not gone at all.  Cancelled playdates.  Canceled meet-ups at the splash pad.  I cannot even get down on the floor to play with her.  The TV is a constant companion.  It sucks.

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Okay the pity party is over.

The Polite Patient

On Monday Ellie had her annual blood draw to check her thyroid levels, vitamin D, electrolytes, CBC, etc.  As we walk into the room, she starts to scream "nooooo!  Go go go GO!".  She fights.  She kicks.  She screams.  After 4 large vials of blood, she is done.  She claps and then profusely thanks the phlebotomist "Ank ou  ank ou  ank ou". "Bye bye  bye bye!" and sashays out of the clinic, but not before demanding a certain color Coban (bandage). Crazy girl.

The Tortilla

We have been dropping Ellie off at Kidspa which is a drop in day care that doesn't give a flying rat's patootie that she has Down syndrome and isn't potty trained.  In fact, they love her.  Anyway, I packed girlfriend a tortilla for her lunch since it is one of the only foods she will eat right now.  The daycare thought that she ate her tortilla until they saw her with it in the play area after lunch.  As they approached her, Bear shoved the entire tortilla down her pants!  Way to go, Bear!

The Thief

Ellie seems to take great pleasure in scribbling.  Since she has been on Adderall, she is finally able to sit still and focus.  She also no longer eats writing implements.  My pens have been going missing.  Along with paper.  Receipts, school reports, and utility bills.  Sometimes we have a receipt situation at a restaurant.  She takes our copy of the receipt but starts to color on the merchant's copy.

Lately she has decided toothbrushes are really cool.  Our toothbrushes.  She insists on carrying all of them throughout the house and out in public.  I have no idea why because she fights daily dental care with all of her being.

GI Update: Sitzmarker Study Results & Hamstring Injury

*I apologize in advance for some missing photos - I used Photobucket for free as a means to store my photos and they are now holding a few hundred pics of mine for hostage unless I pay for an expensive plan and I also managed to lose half my photos from my computer*

Sitzmarker Study Results

Last week we completed Ellie's Sitzmarker Study which looks for delayed colon motility as a cause for constipation.  Here I am, yet again, waiting to here from her gastroenterologist.

Two Thursdays ago, Bear swallowed 24 radio-opaque rings.  She the proceeded to have regular very loose bowel movements without her daily Miralax.  This, as you all know by now, is very atypical for Ellie and I was concerned that the test would be inaccurate.  The way Andrew and I see it, the 9 days of increased laxatives and extra laxatives must have finally caught up.

Last Monday, I took Ellie in for her X-ray.  This was the Day 5 X-ray for the transit study and they count the rings left in her colon.  Ellie had 19 rings scattered throughout her colon.  Less than 20% is normal, but her GI nurse told me less than 13.  Either way, Ellie's test results suggest slow transit constipation.  She went in for a repeat Day 7 X-ray last Wednesday and that showed 6 rings left (this is after 3 bowel movements so of course they were being expelled).  Rings scattered through the colon suggest slow transit throughout the entire gut whereas rings gathered in one area suggest a that there is a problem with that specific portion of the colon.  Ellie's rings were scattered throughout the large intestine.

We were advised to restart the Miralax.  Um, yeah, right.  Please see here and on how well Miralax works for Ellie.  She is on quadruple her normal dose and it has been 5 days so far.  As is par for the course, she is barely eating.  In fact, she barely ate last week consuming anywhere from 300-400 calories, 1/4 of which is from juice.  Last year she was a size 4T, now she is a 3T and I had to take in a few of those shorts this past week.  I am frustrated and I really want a plan.


Hamstring Injury

I goofed last Monday.  That night I was doing my basic stretches that have really helped my back and hip pain (I have two herniated & torn discs at L4-S1, spinal and right hip arthritis).  As I was in Warrior 1, my lower thoracic back spasmed.  As I started to fall, I decided that it would be prudent to brake my fall so as not to crack my head open.  Bad move, as I did something funky to my right leg that resulted in cracking and popping.  I thought "huh, but my hip doesn't feel too bad" and then I put weight on my right leg.  Bad idea!  Horrible pain.  Apparently, it was my hamstring that was popping and I now have a bruise along the backside of my thigh.

Photo: www.aidyourhamstring.com

There are 3 grades of hamstring injuries with grade 3 requiring surgery.  This is called avulsion where the muscle actually detaches itself from the bone.  I do not have this, thank goodness.  I was fortunate enough that I had my physical rehab appointment the following morning.  As I limped my way in while in excruciating pain, I was told that I have, you guessed it!, a hamstring injury.  My back pain was put on the back burner and I ended up with a nice pair of. . .

Crutches!  Aren't they sexy?  I have learned two things from this experience:

1. People couldn't give a flying rat's patootie if you are on crutches.  Allowing doors to slam in your face is common.

2. Those who are in a similar predicament as me--boot on the foot, ace bandages, or limping--always try to open the door for you.

My faith in humanity is wavering.

As it stands, I have been mostly on crutches since Tuesday and I fully believe that this has caused my back and hip to flare up.  My pain is what it was before I ever got any shots.  Is this because I haven't been able to stretch and walk around?  Probably.  Is this because the crutches made me of kilter?  I am sure of it.

So, I am also waiting for a phone call from my Rehab doc.

Fun times in the Theurer household!  As my friend Mary W would say "forward with hope!".

I am hosting another Beachbody Challenge.  Starts Monday August 11th.
Pick your challenge--i.e. 21 Day Fix, PiYo, T25, Slim in 6, etc.
Personal support form me.  Group support in Accountability FB group.
Recipes, Meal Guide.

If interested, you can message me through:
http://www.facebook.com/annatheurerfitness
thechroniclesofelliebelliebear (at) yahoo (dot) com
http://www.beachbodycoach.com/annatheurer

Lordosis, Herniated Discs, Pinched Nerve, and Epidural Steroid Shots

Ellie Bear pic at bottom.

I hope to be back on my feet soon!  Okay more like back to sitting soon.  I think that the least time I blogged I mentioned that I was having severe lower back and hip pain and as such could barely sit.  Hence why I am typing standing up!  Since then, I managed to pinch a nerve in my next while buckling Ellie into her car seat.  A seemingly innocent movement that led to severe pain between the shoulder blades (referred pain) and numbness and tingling in my right arm.  Sorry for that type-os!

First off, I have lordosis aka swayback:

Photo: www.spinelifts.com

This puts added pressure on my lower spine and pelvic area.

This lead to pain.  Unbeknownst to me and the doc, we thought it is due to something called lumbar facet something or other.  A MRI revealed that he was wrong and I have not one but TWO problems. Yay!  Yippee!  Ever the over-achiever!

I have two torn and herniated discs at L4/L5 and at L5/S1.  I also have spinal arthritis.  Goody.

Photo: www.medicalexhibits.com

Lumbar Radiculopathy
Hence the hip and thigh pain I have.
Photo: Emory Neuroscience 

www.voaspine.com

We tried physical therapy to build up core muscles and maintain a proper pelvic tilt to improve posture.  This helped my lower back but exacerbated my hip.  After 3 weeks, I quit. Yes, I was a quitter.  After physical therapy failed to alleviate the pain and pressure in my lower back, hip, and thigh, we turned to epidural corticosteroid shots.

Photo: www.patients.darthmouth-hitchcock.org

Great description of the procedure
Photo: www.baystatepain.com

I had two shots in the problem areas yesterday.  I was under the mistaken impression that this was going to be a piece of cake since I had an epidural when I had Ellie.  Wrong!  I was delusional.  The pain was so severe as the steroid was going in that I may have said a few choice words that are not appropriate for this blog.  Two shots, two times my nerves were on fire--all the say down my leg to my toes, then all the way through my right lower back, hip, buttocks, and thigh.  I was left with 10 out of 10 pain (compared to my 6/10 prior to the procedure) and a numb right leg.  This is a common occurrence since there is pressure on the disc due to the added fluid the steroid creates.  As it dissipates, it will improve.  Steroid shots can take 3-5 days to decrease the pain and then may take up to 21 days to reach full benefit.

Please say a prayer that this works.  I need to get back to PT, exercise, core building exercises (to pull my pelvis into correct alignment), and stretching.

Just to tie you all over, here is a pic of the ever-stylish Bear.  She is channeling Carmen Miranda:

References:

Lordosis.  Mount Sinai Hospital.  http://www.mountsinai.org/patient-care/health-library/diseases-and-conditions/lordosis

Cervical Radiculopathy (pinched nerve in neck).  University of Maryland Medical Center. http://umm.edu/programs/spine/health/guides/cervical-radiculopathy

What is a herniated disc, pinched nerve, bulging disc? Spine-Health. http://www.spine-health.com/conditions/herniated-disc/whats-a-herniated-disc-pinched-nerve-bulging-disc

Lumbar Epidural Steroid Injections for Lumbar Herniated Discs and Sciatica.  Spine-Health. http://www.spine-health.com/treatment/injections/lumbar-epidural-steroid-injections-low-back-pain-and-sciatica