Tuesday, September 16, 2014

Celebrating the day our lives changed forever!

On the evening of September 15, 2009 I was lounging on the daybed in the living room trying to read a book.  I say trying because Tama-Boo was insisting on nudging my face and kneading my 36 week- 5 day protruding belly.  Amelie Cat was "talking" incessantly and wouldn't leave me alone.  Sophie Puppy Paw-Paws was barking like mad and jumping on the windows from the backyard.  The animals knew what I did not.  I was in labor.

As all pregnant ladies have to do nearly every 10 minutes is pee.  I stood up and left a ginormous puddle on the floor.  I hurried up and used the restroom.  My contractions started and they were about 7-10 minutes apart.  I called Andrew at work and said "I think that you need to come home soon.  My water broke.  There is plenty of time so you should go through the Whataburger drive-thru and get yourself some dinner."

First time labor is supposed to take a long time.  Like 20 hours or something along those lines.  Mine was 6 hours.  Within 10 minutes of getting off the phone with Drew, my contractions were 2-5 minutes apart.  And bad.  I got the lovely back labor.  You know that feeling of being repeatedly stabbed in the back?  Yeah, that went on between contractions and then it was more of a slicing movement during contractions.  I called the OB's nurse and told her I was coming in.  I then called Andrew and told him he might want to skip Whataburger.  Fortunately Drew thought I was nuts for telling him to get food in the first place and was practically home.  In the car, the contractions were erratic with anywhere from 1-3 minutes apart.  It was rush hour, of course.

I arrived at St. David's and was 5.5 cm dilated and 80% effaced.  I was admitted to L&D and got an epidural because I desperately wanted one and because my blood pressure when sky high and my heart rate was extremely high.  By the time I was wheeled into the delivery room less than 1 hours later, I was 8 cm.  Andrew and I sat there and watched Jeff Lewis' Flipping Out.  Yes, we watched a DIY show while I was in labor.

For 2 hours, I kept telling the nurses that I needed to push.  For two hours no one physically checked me to see if I was ready.  Finally, they couldn't get Ellie's heart beat or distinguish it from mine (my heart rate was still really high).  They come in to put that screw thingy into her skull and discovered--her head.  Five pushes later, she was out.

They laid her on my chest and I saw her eyes.  I thought, hmmm.  I didn't say anything.  I didn't want to believe it.  What if she didn't?  Maybe I was wrong.  I usually saw the babies at 10 days old. Not all squishy after a vaginal birth. We named her Nadja Marie. They took her away and Andrew went with them to get her cleaned up.  It was 12:17am on September 16, 2009.  I did not see her until nearly 8:00am.  We theorize that they did not want me to diagnose her and they probably wanted to monitor her closely.

I did not sleep during that time.  Why wasn't she with me?  She has microcephaly.  She has those squinty eyes.  Andrew said she was sticking her tongue out. But all her ultrasounds were normal!  Baby Bear was/is indeed sporting an extra chromosome.

When it came time to fill out the birth certificate, Andrew and I decided that she did not look like a Nadja.  She looked like an Ellie.  Baby girl was named after the character in the movie Up!.  In the movie, Ellie is an adventurer.  She is so deeply loved.  Just like our daughter.

It has been 5 years since Ellie Marie was born.  Five short years.  Our little baby is now a little girl.  Her personality is strong.  She is full of spunk and sass.  She has "ideas" and is very stubborn.  She is down right perfect and forever loved

Happy Birthday, Ellie Bear!

A Celebration of Ellie by Slidely Slideshow

More about Ellie's story here.


Monday, September 8, 2014

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!"


Monday, September 1, 2014

Ellie's First Day of School

Yes, I am an entire week late with this post.  Last Tuesday, yes a Tuesday for some ridiculous reason, Ellie started school.  Due to her late September birthday, she is receiving another year of preschool instead of entering kindergarten this year.  I am secretly, well I suppose not so secretly anymore, thrilled.  I am not ready for my baby to be a kindergartner.  Plus, Andrew and I both feel that another year in preschool will be very beneficial seeing as so much of the first 1.5 years were dedicated to behavior.

Every day this past summer, Ellie woke up and signed "school" and said "*ss" while signing "bus".  I suppose we need to work on those b-words seeing as she was screaming "*ss" for the whole world to here.  She takes after her Mama.

So imagine her delight when Chunky Chicken learned that she was really going to school!  Only, there was no bus.   The confusion was evident on her face.  She had her flashcards and crayons and plopped down in the middle of the driveway to wait for the bus.  With a lot of cajoling, mom and I finally got her into the car.  Oh, I didn't tell you that my mom was visiting?  Drew was out of town on business and I was still having A LOT of back and hamstring issues.  My mama flew down from St. Louis to help us out and she was indeed a big help.  My house was finally clean! . . . for 24 hours.

Anyway, there was no bus because transportation services had down that she was in the early morning class.  In June, after school let out, Ellie's teacher told us she was moving to the late morning class.  This wasn't conveyed to the transportation team until the week before.  I received 4 phone calls tell us that her pick up time would be 7:18am.  School would start at 9:45am for her.  True, the school is within walking distance and ordinarily this wouldn't even phase me, but I just got off crutches!  I can still barely drive because pushing on the gas pedal requires the use of my hamstring.  Anyway, it took a few days and the bus kinks were finally worked out, much to Ellie's delight.

As we arrived at school on that first day,  Ellie nearly dragged my mother into the classroom.  She was that excited!  My mother tried to get a picture of me and Ellie at the door, but as usual when it comes to mother-daughter pictures, she was more intent on running away. . . to the classroom.

As you all know, my little girl hasn't been eating.  All of that changed with the start of school.  My little Bearity-Bear ate all of her lunch two days in a row.  Peer pressure!  Routine!  The last two days she only nibbled a few bites, but that is still progress! It was such a joy and relief to know that she was finally eating!

At the conclusion of the first week, the teacher and aide have informed me that Ellie is doing very well.  She is following directions.  My jaw dropped with that one.  She is listening when she is told "no".  Another shocker.

This year, The Bear is going to float into the typical pre-K classroom.  It won't start for another few weeks, but I am eager to see how she does.  It is a bit risky because she has to walk down the hall and not run into Mr. M's 5th-grade class and proclaim him to be a "dada".

Finally, no week would be complete without Bear getting into trouble.  This time, there was an attack by the dreaded fire ants on the playground.  Fortunately, this fire ant incident only results in 6 bites, mostly around her waist band.  They looked pretty nasty, but seem to be clearing up without any signs of infection.  [see this past spring's incident]

I am excited to see what this year will bring and I must say that I am very happy to see the Ellie Bear is happy to be in school again!

Ellie's First Day 2012-2013
Ellie's First Day 2013-2014

Monday, August 25, 2014

The Big Fat ADHD Adderall Post

It has been 8 months since we first started Ellie on Adderall.  If you are new to this blog, please read here and here to get the full background as to how Andrew and I came to this decision.

After trial an error, we finally found the right dosage in February.  As in the first two doses did nothing.  Nada. Zip.  It was like giving her a sugar pill.  So girlfriend is a bit tolerant.  Eh, no surprise.

Anyway, AMAZING things have happened since then.  It is as though a cloud has unblocked the sun and my Bear is thriving.  To think that we were so scared to take that step and now I wonder why we didn't start as soon as she turned 4 years-old?

For starters, this happened!

This would be before she decided to practice her artistic skills on our living room chair.

Because she is able to sit still without eating the writing implements, we have seen great progress in her fine motor skills. She can actually grasp a crayon or marker perfectly.  She is still scribbling, but we are starting to see some purposeful horizontal and vertical lines.  At the end of the school year, if her OT placed her hand on top of Ellie's, she was able to write her name!  Now, coloring is a favorite activity of hers.  No paper or writing utensil is safe from her little hands!

Another major advancement is her communication!  Because Ellie now has the ability to attend for short periods of time, she is able to learn signs and tries to string them together.  She is now able to watch our mouths and try to imitate sounds.  It is all very garbled and her "hi" still sounds like a scream, but she tries to say bus [*ss], juice, cracker, car, ball, baby, bye, dada, mama, cat [ack], mouse, Mickey [icky], and yes.  Oh and the all important "cookie".  The word "open" still sounds like "a-baby" which I still don't understand why, but at least we know what it is.

As the school year drew to a close, Ellie was starting to progress cognitively.  This is because the main goals in school were no longer to stop her incessant, purposeless climbing or to get her to sit for 5 seconds in group.  With the Adderall, she could attend and therefore absorb her surroundings and learn during circle time.

Doesn't everyone keep flashcards in their backpack?

A big concern for many parents is "will this make my kid a zombie?" or "will this change her pseronality?"  For Ellie, the answer is no.  Girlfriend is still very sassy, spunky and quite ornery.  She loves to get into trouble.  She practices her selective hearing when she doesn't want to do something.

That would be our electric bill

We still see this, but it is purposeful and without a possessed look about her.

The main side effect that we have seen is decreased appetite.  She did lose 1.5 lb initially, but was stable up until a month ago.  Her most recent weight loss is related to her GI issues.  Pre-GI, she wouldn't eat until the afternoon when her medication would wear off.  She would eat a large afternoon snack, a large dinner, and a large bedtime snack!

We have tried drug holidays on the weekend and it was disastrous.  For her (and for us).  She would be outside and want to play in the sandbox, but she just couldn't.  She had to run, climb, and spin around.  She would keep returning to the sandbox and then frustrated because her mind would tell her otherwise.  It was devastating to watch.  It was as though she finally knew what she was missing.

The school year will start in just a few days.  With her late September birthday, she will have another year of Pre-K.  I am really excited to see what this year brings!