Sunday, April 28, 2013

From the mouth of a Papa

This was written by the Papa of Nella Hampton.  If you have not heard of her mama, Kelle Hampton, she is pretty famous blogger, photographer, author, and mama to 3 beautiful children.  Nella, her middle child, is 3 and totally rocking that extra chromosome.  Her story of Nella's birth STILL makes me cry every time I read it.  It is touching - honest - raw.    Her book Bloom was good but not as GREAT as I had expected.  You can read her blog here -

This I LOVE.

"Here is something I wrote when first we were given our little gift...sweet Nella, who came with an extra chromosome in her pocket, giving her the distinction known as Down syndrome. Three years down the road and a heart stretched more and more, I thank God for her:

“We’ve got an issue here” 
the quality control angel called out.
“What’s the problem?” 
asked God, in a voice that already seemed to calm the concern.
“It looks like an extra chromosome…one, two…yes, right here, an extra one.”
Now smiling, God answered,
“That’s not a quality concern…it is…a distinction…the Manual addresses it.
You’re new on the line, aren’t you?”
“Why yes…this is my first day,” apologized the angel--
searching through the manual for any reference to this.
“I’ll talk you through it...there are just a few assembly modifications.
First, locate the hug sensors. Do you see the dial?”
“Yes, right here…oh, I think I tickled her.”
“Turn it up.”
“How much?”
“All the way.”
“Now locate the two smile triggers—
they are located on either side of that cute little button nose.”
“I found them.”
“Adjust them a little closer to the surface…closer…closer…perfect!”
“Is that it?” asked the obedient angel.
“Almost,” answered God. Now, very gently, open her heart.
That’s it. Measure two…no, make it three extra scoops of love.”
“Will it fit…it’s so tiny?”
“Oh, these little hearts stretch incredibly. It will fit.”
“Done…is that it?”
“One more thing…move her from the random distribution belt to the select premium belt.
These little ones aren’t just given to anyone."
"There…she’s done and ready to go,” announced the angel.
God stepped over, as if to inspect the handiwork of this new angel on the line.
But that wasn’t His intent.
Instead, He picked up this little one and held her close to His heart…
holding her for so long the angel became concerned.
“Is she alright? Did I do everything as you instructed?”
Still holding her close, God said, “She’s perfect.
I just find it hard to let these special ones go, for they are Heaven to hold.”
And He gently kissed her cheek and sent her to our hearts.

—written by Rik Cryderman, the proud Poppa of one of these babies of distinction, Nella Cordelia Hampton"

Look out Broadway!

Tuesday, April 23, 2013

2nd Annual 5k Buddy Run!

Register to run or walk the 2nd Annual 5k Buddy Run!  Clay will wave at you as you go by! 

June 8th at Papillion City Park

Monday, April 22, 2013

'Frazier goes deep for his buddy Teddy'

This video will make you smile!!!

Doggie Love

Half Marathon - check!

On Sunday I ran my first half marathon, The Gambler Half.  It was such an amazing experience...but I am so glad it is over!

I started running last year around this time, in preparation for the 1st annual Buddy Run 5K (see post here) and for some reason me and running just clicked.  

I like the mind clearing, adrenaline earning, me time.

The weather was not so cooperative for training for a spring race but luckily I had a few running buddies to help me through the 15 degree Saturday morning runs!  Thanks, Hilary and Kendra!

My goal was to finish in 2 hours or less and I beat my time by almost 6 minutes.  That is a long time in the running world!

The weather turned out to be not so bad the morning of the race and I enjoyed a few nice celebratory beers afterwards! 

My friend Kelina ran the 5K part of the same race!

Thursday, April 18, 2013

Phone Dump

Dressed for the occasion!  Melissa & Terry's wedding at Happy Hollow Country Club

This is what happens when we know we are taking a cab home!

Cheers to the best dad!!
Don't leave, aunt Molly!!!
Silly faces!
A boy, a ball, and his dog ;) 
Look out!  I found the tupperware!

Love me some baby wearing ;) 

Race Day prep!

Look at that good lookin' baby!
A little at home physical therapy!
Lunch with friends!
My sweet love bug :)

Soccer Season!!!

We have entered our second season of Mighty Kickers soccer through our local YMCA.  

Wyatt does not seem any more competitive this year, but he does seem a little more focused on the game - as in, he hasn't napped on the field yet....or ran in the wrong direction - intentionally.

We meet for 1 hour every Saturday.  The first half hour is practice and the second half hour is a game against another team.  Wyatt enjoys the structure of the practice part but is not so sure about the actual game.  He basically just runs up and down the field, alongside all the action!

Wyatt's friends Stella and Bella are on his team this year so he wasn't shy at all at his first game!

Now if only the weather would make it feel like SPRING soccer has begun!!!

Wyatt's "game face"

Family soccer practice

Look at that form!!!
Hazel is all about the snacks....and the outfit

Relaxing in the sun

Spread Respect

A student's email to her professor, after the professor inappropriately used the word "retarded" in class.

"I must be completely honest with you, when I heard you so casually use this word, at this point in my life, I have never seen someone in a professional standing, especially an educator like yourself, show such a lack of unprofessionalism and disrespect. Educators are meant to set an example, and quite frankly, I’m not sure if I could follow yours."

This is great story for standing up for what you know is right.

I (embarrassingly) must admit that I don't always stand up for Clay, and as his mother - it is my job to do it - especially because he can't.

Sometimes I am thrown off when I hear someone use the word "retarded" around me....and it is uncomfortable for me to have to confront someone in this situation (or in any situation for that matter).

Luke is much better at it than me.  He usually casually slips in a "hey, watch the r-word" and then is able to carry on the conversation.

I, usually become frozen inside - sad, angry, not sure what to say - and the moment passes.  Then I am angry with myself for the rest of the day for not standing up for what I know is right.

I like this story.  I like that she too froze, not sure what to do, and even though the moment passed - she still made it right.  A lesson learned for me.

Tuesday, April 16, 2013

A little update on Clay

Clay had a busy week of appointments.  He completed the second part of his feeding evaluation - the swallow study - and had his yearly vision test, along with his usual occupational and physical therapy and his last speech class at UNO.

Feeding evaluation????  Swallow study????  That is exactly what I would have said before diving head first into the world of Down syndrome.

Remember that post about it not always being rainbows and butterflies???  This week was one of those weeks - filled with specialists, doctors, tests, hospitals, and the constant reminder that Down syndrome is not always....easy.  That extra chromosome, well it can cause trouble.

Where to start?  Clay was diagnosed with tracheomalacia after having a scope of his throat during his ear tube surgery.  Tracheomalacia is basically low muscle tone in the walls of your trachea, making breathing difficult.  The doctor's don't seem to be too concerned with Clay's tracheomalacia and hope that he will outgrow it as his muscle tone strengthens.  Because his body senses something is wrong, he produces extra mucus in his throat and always sounds sort of "phlegmy", especially when he eats or drinks.

I recently learned that children with Down syndrome (including several friends of ours) often aspirate on food or liquids and tracheomalacia increases the likelihood of this happening.  Aspirating occurs when food or liquids enter the respiratory tract during swallowing.  Clay had several symptoms of aspirating but I had always blamed them on the tracheomalacia.  After talking with our pediatrician, we decided it was best to do a feeding evaluation.

The first part of the evaluation consisted of a Speech Language Pathologist watching Clay eat and swallow liquids.  She agreed that he showed signs of aspirating (congestion after eating or drinking - that "phlegmy" sound!) and recommended we move on to the swallow study.  The swallow study took place at the hospital.  A radiologist and the SLP took a video x-ray as Clay chewed and swallowed foods and liquids laced with barium.

The video confirmed Clay IS aspirating on liquids and that he does not chew foods properly; he basically swallows whole.  Why does he aspirate? Again, low muscle tone - a culprit of that extra chromosome.  His tongue does not arch properly to push fluids past his open airway when swallowing.

So now what?  Clay did not aspirate on solid food or thick liquids like yogurt and pudding so we will will add thickener to his liquids - a powder you mix in until you get the right consistency.  So far, Clay is not a fan of it.  We are also looking into feeding therapy to help strengthen his tongue and teach proper chewing techniques.

.....occupational therapy, physical therapy, speech, feeding clinic.....this mama is tired.

We had another appointment today - this one to check out little man's eyes.  Luckily we walked out of there with much more positive news!  Clay does have nystagmus, a condition where his eyes shake or twitch, mostly when he is trying to focus on something.

Again - low muscle tone.

His case is pretty mild and his pediatric opthamologist thinks it will go away on it's own with time and strength.  Dr. Troia did detect a little bit of far-sightedness but not enough to warrant glasses....and we don't go back for a year!

As grateful as I am for Clay's health, determination, and strength - and as much as I try to highlight and praise those points, we do have bad days....and bad weeks.  The truth is, Clay does have Down syndrome, and along with that comes a few more bumps in the road....but it is the road that was made for us.

"The course of true love never did run smooth" ~ William Shakespeare


Family Photo Shoot

On Saturday we had our family pictures taken by Lacy Marie Photography.  

The day was a little colder (and windier) than expected - it is APRIL for crying out loud!!! but they turned out AMAZING!!! 

I see my beautiful family everyday but seeing these photos brought such a huge smile to my face.  The pictures really show an insight into their world....Clay waving, Wyatt loving on a lady bug,  Hazel being a daddy's girl....these are now memories I will never forget!