Monday, January 31, 2011

It's Sunny (and Warm) in Austin


Actually, in my opinion it is hot.  I know that many of you have been bombarded with snow storm after snow storm after ice storm.  All the while, we have been freaking out over temperatures in the low 50's. Gasp!  Shut down the schools everyone for we have to turn on the heat!

Okay, we are not that bad, but close.  I am not a native Texan so this pretty much cracks me up.  When I first moved down here, I was fooled.  We had an ice storm and Andrew broke my one and only snow scraper.  They do not sell those things out here.  My one and only snow scraper gone.  Andrew will never live it down.  Just like how he made fun of my snow shovel stashed in the trunk of my Corolla.

I actually come from the land of four distinct seasons year round so this lack of snow and long-sleeved, fuzzy clothing really makes me feel out of place and occasionally sad.

The past few days have hit the high 70's with dreary overcast mornings wrecking havoc on our allergies (cedar fever & mold) and clearing up to nicely sunny skies that say "It is really May and not January.".  I have finally embraced this unexpected warmth and sun and guess what? some of my depression has eased up a bit.  Sunlight anyone?

Yesterday, Andrew and I took Ellie and the Sophie dog to a park.  Sophie enjoyed all of the new scents while Ellie loved the baby swing.  Happiness and smiles galore!  Our stroller and myself have been getting a workout as well.  Yay!  No mall walking the past few days!  (I hate the mall but it does have its purpose. . .and The Coffee Beanery. . .and Gymboree).

It is like a photo shoot out here.  Look at the hair blowing in the wind.

Oh great, my kiddo eats chalk.  I am pretty sure there are no beneficial nutrients in chalk.  Pica!

Scribble Scribble Scribble
Her hair looks reddish :-)  Maybe there is some of me in there.

Who needs chalk when there are blocks and grass.  Ooh grass!  Fiber!


Today, while out with a friend I picked up some sidewalk chalk.  Her daughter is around the same age at the Bear-Bear and she mentioned how well she does with chalk.  I figured --ooh developing fine motor skills.  Um, sort of.  It turned into oral motor with some fine motor throw in there.

 She looks like Baby Drews.


A cool front is coming through Wednesday night so let's all panic as Austin hits the upper 20s.  I shall be thinking of each and every one of you sitting through your latest snow storm--praying that you have plenty of food, water, cat food (you know who you are), warm fuzzy clothes and hot cocoa.


Thanks to Karel who sent me a photo of this yarn--Ellie the Bear.  Love it!  Knit some Snuggies by the fire.


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Saturday, January 29, 2011

Taking a Step & Happy Faces

Ellie has something she wants to show you.  


I am taking a step to get to Mommy.  This is me mid-step.


Oh Yeah!  I reached the edge of the Baby Jail.  Mommy!  Pick me up!


Hi Mama!  Look!  I took a step all by myself!


Mommy?  Isn't this exciting!  I am even showing off all of my teeth.


Yay! Yay! Yay!  I am so CLOSE to you now!!!


Don't you want to pick me up?  I am your happy little snuggle Bear.
I also thought that I should give you a good look up my nose.


Maybe if I make myself look really cute Mommy will rescue me from this jail.


Mommy!  Get off the coffee table, stop taking pictures, put the camera down, and get me.


Get! Me! Now!



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Friday, January 28, 2011

Be Inspired!

A few days back, I blogged about the "Disappearing Babies" article and one particular commenter's horrible, ignorant response.

The BabyCenter Down Syndrome Community and one particular mother took it upon herself to construct a video.  A video of all of our children with DS.  One hundred beautiful, amazing children.

As it stands with the current testing, only 8% of parents continue pregnancy with a prenatal diagnosis of Ds.  Watch the video.  Be inspired.  Then take away 92 of those kids.

Our little Ellie Bellie Bear is seen at 1:40.

All I ask is that you pass on this video.  If it can change just one person's view on our children with designer genes. . . That is all it takes to be an advocate.  Share the love, share the video.  Lily's mother truly is an advocate and an inspiration.

Worthy Of Life Video

In case you are wondering, yes, I did cry again while reading her blog and again while watching the video.


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Down Syndrome Footprint

Update (July 2011): This has become one of my most popular posts to date.  Most people find this post when searching for "sandal gap toe" or "sandal gap Down syndrome" or "sandal gap ultrasound".  Welcome and I hope that you find this page informative and inspiring.  I have added recent pictures to the bottom of this post.


My beautiful daughter Ellie at 20 months.

You know those advertisements that run along the side of Facebook?  The ones that you pretty much ignore or if you are like me, I tend to forget that they are even there?  I actually clicked on one.  Did I get bamboozled by a gazillion pop-up windows that would not close?

The ad brought me to the following website: Down Syndrome Footprints

I clicked on it because of this image:



The thought running through my head: "That is Ellie's Foot!"



Sandal Gap Toe.
(I refuse to call it a sandal gap deformity because it is NOT a deformity, but rather a toe spacing variation in my eyes).

Feet that flip-flops were made for.

Flip-Flops!


It is a dislocation of the big toe, therefore creating a large distance between the 1st and 2nd toes. This is a rather common plantar [foot] occurrence among those with that extra special chromosome.  It is often referred to as a "soft marker" on the ultrasound.  Not picked up on Ellie's by the way.  The Sandal Gap Toe can also be an isolated occurrence.





I for one think that Ellie's feet are adorable.  So cute with that little monkey-like toe that seems rather opposable to me.  She can pick up toys with her feet!

You can see the gap between the toes.  July 2010

New Photos!  (July 2011)

You can really see the sandal gap when Ellie is standing or walking.


Miss Ballerina.
I like to believe that the extra surface area of her feet gives her added balance.  Perfect for dancing!


Okay, back to the website.  There is a beautiful necklace on there that I like. Hint hint Andrew .  Oh wait, maybe once Ellie is older and doesn't accidentally choke me when I wear jewelry. . .

"When I count my Blessings, I count you twice."

There you go.  Free advertising brought to you by The Chronicles of Ellie Bellie Bear



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Reference: "The Down Syndrome Footprint" (2011). Website http://www.downsyndromefootprint.com/ viewed on January 27, 2011

Thursday, January 27, 2011

Tum-Tum-Tummy



Today was THE appointment with the gastroenterologist.  We have been patiently and perhaps anxiously waiting for this appointment for about 2 months now.

Many of you who know Ellie have never seen her without a bib (yep, I take the bib off for the pictures).  In fact, almost all who have met her have also seen her spit up.  Then, there are the unfortunate few who got spit up on.  Sorry! In the medical field, she is what we call a "Happy Spitter".  Since birth, the Bear has spit up right after feeds and even hours later, yet she does not cry or arch her back.  Thank goodness!  Hence, happy spitter.

We tried some treatments and then figured that like all babies she would outgrow it around 7 months of age or a little there after. After months of happy spitting, it started to get worse and then it was happy spitting with chunks of solids in it.  Yes, gross.  Yes, I had to share.  Laundry was/is a daily ritual and mostly because of a need for more jammies or bibs.  Sometimes I would go through 4 sets of PJs before I could get her to bed without any spit up on them.  I began to worry about her esophagus and the damage that all of this acidic reflux was causing.

Oh and then the horrible pooping issues.  Do not fear, I will not go into detail, but let's just say she has been on Miralax for a year now.

We left the office with 3 diagnoses, 2 medications, and an order for 1 test.

All of this can be attributed to her low muscle tone.  Remember, we have muscles everywhere--even inside the GI tract.  Poor tone means she has trouble keeping the food down in her stomach.  It creeps up through the esophageal sphincter--Reflux [GERD].  She has gastric paresis or delayed gastric emptying so the food just hangs out in the stomach a little longer.  That means more time for the food to eek out into the esophagus and then out of the mouth. Yuck.  Hence the random pea, blueberry, or chunk of corn that ends up in the spit up.  Then, the slow moving intestines allow for more water to be absorbed, the stool to become harder, and the lower tone GI muscles having trouble pushing.  There you have the constipation.

We are to start up Pepcid for the reflux, erythromycin (very low dose) to increase GI motility, and continue on the Miralax.  We also have an Upper GI study scheduled.

As for the milk issues (note, we stopped milk after a stomach bug and the spitting up was cut in half).  We are going with milk intolerance and sticking to rice milk.

Tutus!!!


Loves Crawling


Ear tubes tomorrow!



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Tuesday, January 25, 2011

Disappearing Babies?

Over the past few weeks, I am sure that many of you have read the various articles regarding the development of prenatal Down syndrome-specific testing via blood sample at 12 weeks pregnant.

"Will Babies With Down Syndrome Slowly Disappear?"   


http://childrenshospitalblog.org/will-babies-with-down-syndrome-slowly-disappear/#disqus_thread

I know that this is a touchy subject.  This is NOT a blog or forum to argue pro-life or pro-choice views.

All of that being said, I feel it is impertinent for me to say something.

Medical research can be wonderful.  It can save lives or find treatments for various diseases or develop exciting things like pacemakers to keep some of the people in my family alive.

As I read these various articles, I shake in fear.  Fear that people are making decisions uninformed.  Many of these articles state that medical professionals do not know how to counsel parents about DS.  That is true.  I can actually state as being both a medical professional and also as being the new mother on the receiving end.  In fact,  Dr. Brian Skotko recently published a study in Pediatrics that involved gathering information from mother who learned of their child's DS diagnosis postnatally.  He and his colleagues concluded that many of the mothers felt uninformed about DS, heard mainly negative aspects rather than positive ones, and were not given access to other venues of information (ie local DS society, other parents for children who have DS).

Then the comments on the articles about the new testing.  Oh the general populations' comments on these articles. . .it just shows me how uneducated people are.  It also makes me cry.  Is this what people think about my Ellie when they see her beautiful face??  Is this how she will be viewed when she is older and in school and in the workplace?

Comment: If you can prevent suffering, wouldn't you? Perhaps something like Type II diabetes -- a disease that is usually adult-onset and easy to manage with proper attention -- wouldn't be worthy of an abortion, but something as serious and disabling as down syndrome? I know that the individuals who have it often lead relatively good lives, but they die young and often suffer quite a bit during their lives.

I would urge the parents of these children who advocate against testing or termination upon a positive test to examine how much of their opinion is based upon their own need to care and love for their child. Yes, your child is likely wonderful and kind -- most people with down syndrome are incredibly nice -- but are all the struggles they go through worth it? Wouldn't it be good to abolish something as clearly problematic as down syndrome, to effectively cure it?


Yes, I realize that some people will choose to have their baby whether or not the blood test shows DS--that they just want to be prepared and know in advance.  However, as it stands right now, with the current testing, only 8% of those with a prenatal diagnosis (this is not even a definitive diagnosis people!!!  but an odds ratio) keep their little blessing.  With this new test, I struggle to think what will happen. . .

Why cannot funding be used to find better treatments for colon cancer or better techniques for craniosynotosis repairs?  What about therapies for autism?  Treatments for childhood and adult obesity and all of the complications that occur with that?  Goodness, more funding for speech therapy would be great.  Instead, we are screening for DS specifically?  What next?  A prenatal screening test for cerebral palsy, autism, ADHD, asthma, the need for braces?  Then we can have the perfect child.  Oh come on.  Perfection is unattainable.  If it could be achieved, then in my eyes, Ellie Bear has it.  With all 47 of her chromosomes.


Our Perfect Angel

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Monday, January 24, 2011

Musical High Chairs

Happy Monday everyone!  Our weekend was good, but keeping the Bear in a restaurant highchair is rather stressful.  She is like a little monkey determined to turn all about in the chair and causing heart attacks to both myself and Andrew.  See here for what happened recently.  I just bought the following travel booster chair.

It seemed like a dream come true with the T-strap and easy to collapse and carry about.  Wrong!  It works great for some bambinos (such as dear Gracie), but not for our little gymnast.  She did well for the first 2 minutes or so and then almost toppled sideways. Onto the floor.  Taking the table chair the booster was attached to with her.  Oh my goodness.  Oh my heart.  Oh my cortisol levels. We are now back to padding Ellie into her high chair, but not because she cannot support herself sitting.  Oh no, it is to keep her in her highchair.  No wiggle room makes it more difficult to get our of the straps.  She is like Houdini.  Have you seen her get those feet into her mouth while sitting?  The padding = the travel booster seat collapsed and stuffed behind her in the restaurant high chair.


Moving on. . .

Today was Ellie Bellie's quarterly or more than quarterly ENT [ear, nose, and throat or otorhinolaryngology] appointment.  My little darling can produce wax like a candle factory.  Wax aka cerumen is actually protective and should not be removed by anyone other than a medical professional.  You know that old saying "do not put anything smaller than you elbow in your ear"?  Well follow that. Scratch up that ear canal during the cleaning now there is a breeding ground for infection.  Or puncture the ear drum. . .

Anyway, when the wax impairs hearing, that is when it is time to visit your local ENT.  Boom Boom has tiny tiny ear canals and lots of wax.  You can just imagine what impact it has on her hearing.  Then her speech.  So we hang out with Dr. Z on a regular basis.

Unfortunately, last week Ellie ended up with a nasty ear infection and that translates to another set of ear tubes.  Surgery is this Friday.

Alright, I need some cute pics to get me past this anxiety about Friday oh and the upcoming GI appt. on Thursday.







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Sunday, January 23, 2011

Why Hello Miss Separation Anxiety

My leg has grown a new appendage.  It is called The Ellie Bellie Bear.  Ellie has this great affinity for standing.  She has an even greater affinity for using my pant leg to pull to stand.  Then she hugs my leg and looks up at me with those big blue eyes.  Who can resist?

Hi Mama!


If she is not latched to my leg, she must be held or at least be sitting on my lap while playing.  Heaven forbid I actually try to do something like cleaning or cooking when the Bear-Bear is awake.  Oh the horrible mommy that I am if I am in the same room as Ellie and I am not holding her.  For shame.

What is it with her gnawing on the fake food?  This one is a chicken leg.
Yep, you guessed it.  She is standing, holding onto my PJ pants while holding her fake food.


So here I am relishing in the thought that I am Ellie's favorite parent.  After all, she calls me "mama".



Or so I thought until she also started calling Andrew "mama", specifically.  What?!?!  We are BOTH mama?  Wait, does that count as two words?  Mama = Anna and Mama = Andrew.  Yep, I am counting it as two.  Super Ellie!

Still teething.  Can you tell?

We are actually not all that surprised as Andrew and I both worked with her so hard to get the "m" sound down.  Many nights Andrew would sit there with Ellie going "mah mah" while showing her the "M" flashcard.  It is no wonder Chick-A-Boom thinks we are both called "Mama".  Yet wait!  I created the Ellie Me Book that specifically has my photo labeled as "mama" and Andrew's photo labeled as "dada".  Eh!  Daddy's girl.  Mama's girl.  Does it really matter?  Nope.  Ellie understands that she has two people who love her very much and that is all we can ask for.



Now the question remains, when will I get my leg back?

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