Thursday, June 30, 2011

Miss Penguin


My son is smitten, once again.
With another teacher.
Last year, it was Miss F.

"Andrew, who did you play with at school?"

"Miss F."

"Andrew, who did you sit with at snacktime?"

"Miss F."

Yes, he LOVED his teacher.
And yes, so did his Mama!

But now he is enrolled in ESY, and he is once again smitten with a summer teacher.
Miss Penguin.
Her name is not really Miss Penguin, and I am not going to disclose her real name because I don't do that when it comes to teachers and therapists on this blog.
But it sounds similar to it.
Gotta give my boy credit for approximating her name so well.

But it's the same song and dance:
"Andrew, who did you play with in school today?"

"Miss Penguin"

"Andrew, who did you sit with at snacktime today?"

"Miss Penguin."

Yes, my boy loves his teachers!

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Wednesday, June 29, 2011

Awesome Follow Up Appts...And Attitude


On Tuesday, we headed out to the ENT office for final follow-up appointments for both kids after their recent surgeries.
Andrew went first.
His newly replaced right ear tube looked awesome!
And, even better, he rocked his tympanogram with a 6.2 result!

WOO-HOO!

Pre-op, his tympanogram was 0.4.
This basically translates to NO MOVEMENT in relation to sound in that little eardrum of his.
I don't have parameters that I can post for you to reference as each result varies from person to person.
However, the audiologist almost did a cartwheel when she said "6.2"!!!

I'll take that as AWESOME!

Then it was Kaitlyn's turn.
Um, I stand corrected.
That's "MS. KAITLYN" to you.

Yep, her attitude is back.
Yep, she is back to baseline.
Yep, she is healed 100%.
Yep, the ENT was very happy with her recovery.

Too bad he couldn't resect that 'tude you see in the photo when he took out the tonsils and adenoids, huh?

And the best part of the appointment?
The end, when the ENT told me "You don't need to come back unless there are problems."

Thanks for fixing my kids, and thanks for being such an awesome doc, but it would be nice to scratch your name off my list for a while!

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Monday, June 27, 2011

Summer!

Some of the best things about summer.....


...include running through the sprinklers....
...dodging the ice cold water...

...making a splash...

...relaxing and having fun...




...and just dreaming the days away...
We welcome you, summer!
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Friday, June 24, 2011

I Love Mrs.New Hampshire 2011!


Nikoll Lauze
Mrs. New Hampshire United States 2011

Please join me in THANKING Nikoll Lauze for choosing "APRAXIA" as her platform!!!!

Nikoll graduated Summa Cum Laude from the University of New Hampshire and has been a Special Education Teacher for seven years. She is currently pursuing a Masters Degree in Special Education at PSU.

Family is the most important aspect of Nikoll's life. She is married to her supportive husband, John and is the proud mother of six year old Benjamin and two year old Samuel.

She devotes much of her time to raising awareness for early intervention of a neurologically based motor speech disability known as Apraxia. Apraxia plays an integral roll in her family's life as her son Samuel has been diagnosed with this disability.

Nikoll is thrilled to be representing the state of New Hampshire through the Mrs. United States Pageant system and being able to teach her children as well as others, that you are never too old to "Dream Big and Accomplish your Goals".

By the way, you can follow her blog here!

And, you can become a fan of hers and "LIKE" her Facebook page, too!

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Apraxia and Friendships



"Emma has apraxia of speech and struggles to communicate.

She wants to be friends with classmates and peers but often they can't understand her speech. This story, told in Emma's "voice", explains apraxia from her viewpoint.

Emma explains her feelings, all of the ways that she CAN communicate, and also her special interests that are just like those of the children she would like to be her friends.

Written by Emma's mother, Angela Baublitz, this book is 8" x 8" with 21 pages.

The final page is a message to parents and teachers with tips on how to best support children with apraxia to be "one of the gang."

Appropriate for late preschool and early elementary age children. "


Click here to order this book now!

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Thursday, June 23, 2011

"She's Perfect!"


Perfect.

A word that many parents of children with special needs doesn't hear that often from medical professionals.
And we have come to accept that.
However, in my eyes, my children are indeed perfect.

Perfect.

Yet on Post-op Day #4, Kaitlyn and I headed into the Optho office for her first follow-up appointment since surgery.

Perfect.

I worried that she would not be able to handle the ride, the 100 degree Chicago weather, the perpetual wait in the waiting room, the longer wait in the exam room, or the exam itself.

Perfect.

But then he entered.
The Doctor.
The Doctor who cried with me a mere four days before when her surgery was complete.
He examined her eyes, testing near and far vision, watching for the slightest drift or wander.
He was so silent.
She was so cooperative.
I was so nervous.

Perfect.

Then he turns to me and says "Mom, she is PERFECT!"
A collective sigh of relief.
The surgery was a success!
The drifty left eye was now midline and where it was supposed to be!
Binocular vision!

Once again, the miracle of God shown through the talented hands of a surgeon.
Can't get more perfect than that, can you?

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Wednesday, June 22, 2011

Post-Op Days #1, #2, and #3

I am closing in on real-time!
I only have a few more posts and I think I will be caught up...whew!
I really need to get caught up and into real time!
***********************************************************************************
Kaitlyn's story continues, and we have now entered the post-operative phase.
The phase that I was dreading almost as much as the procedure itself.
Our first night at home was rough, I won't lie.
She wanted me close by at all times.
That meant a quick trip to the potty for Mom bordered a near catastrophic meltdown from the girl...because I walked away from her for a moment.
Nights were the worst, and I promised Kaitlyn that she could sleep in my bed as she continued to recover.
Sorry, Dad.

But I didn't sleep very much, as my recovering girl was quite loud.
Snoring.
Gurgling on excess secretions and mucous in the back of her throat.
Whimpering and moaning in discomfort.
Mouth breathing.

Waking every two hours to go to the bathroom and to drink a couple of ounces of liquid.
Waking every four hours for pain medications.
Waking every six hours for eye drops for her surgically repaired lazy eye.

I was awake all night..for many nights.

Post-op Day #1: Saturday
We were getting a visitor today: Home Health Nursing.
Our wonderful ENT surgeon suggested that we consider this option and I was so glad that we did.
For three consecutive days, Home Health Nursing would come to our home and administer 750ml of intravenous fluids through Kaitlyn's IV.
I firmly believe that this is what really helped us the most.
Although Kaitlyn was drinking, I am sure that she wasn't' getting the optimal amount that I could possible push on her.
Each infusion lasted two hours, and Kaitlyn enjoyed having her "own nurse" come to see her.
As if I wasn't sufficient, Kate?
Thanks, kid!

After HHN left on Day #1, I needed to give my girl a bath.
She smelled.
She smelled like sweat and she smelled very medicinal like the surgical waiting area.
I knew that her tolerance for a long activity would be low, so I made it as quick as possible.
And this is what happened:

She passed out cold for two hours!
That night was a repeat of the first night.
More gurgling, snoring, moaning and whimpering.
And no sleep for Mom.

Post-op Day #2: Sunday
It was the same.
No different than Saturday, to be honest with you.
Home Health Nursing came by late in the morning for her IV fluid infusion.
I took her outside for a while to get some fresh air.
The weather here in Chicagoland was warm, but comfortable for June.
We sat outside in chairs on the driveway in silence.
I didn't want to force her to do anything but breathe fresh air.
Well, I did try to push some Pediasure on her, but three sips was all I could get out of her.
And she did listen to one Lady GaGa song, but that's about all she could handle.
You could see her IV taped down on her right wrist and arm.
I was doing everything that I could to baby that IV so we didn't have to start another one on her.




Then it was back to the couch.

Post-op Day #3: Monday
Still the same.
I felt like I was just hitting "play-rewind-stop-play" over and over.
Co-sleeping was never something that I did with my children when they were babies.
I was too afraid to do that.
They slept in a bassinet next to my bed.
But Kate was too big for a bassinet, so co-sleeping was the next option.
I couldn't have let her sleep in her own bed anyway.
That was just too far away from me and for me to hear her.

Home Health Nursing came by for the third and final day.
You can see that Kaitlyn is a bit more perky today, even sitting up on the couch and watching TV!
Her pain was pretty well controlled with the medicine that we were prescribed.
But she would usually start getting irritable around 30-45 minutes before the next dose was due.
She had become the master of the remote control!
Yes, she was in charge of everything that we watched!
And let me tell you, Cailou's voice got on my last nerve!



Tomorrow would be our first day to venture out of the house and further than the driveway.
We had our post-op visit with the Optho surgeon.
That story comes next......

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Tuesday, June 21, 2011

"Let's Choose" a Winner!







And the winner of the "Let's Choose" blog giveaway this week is.......








JESSE OR JULIE CHALICH!!!!!






Congrats!



And now the rules.........


You must email me @ apraxiamom@gmail.com within the next 48 hours with your mailing information.



If I do not hear from Jesse or Julie Chalich within those 48 hours, another winner will be chosen!



Thank you ladies from "Let's Choose" for allowing me to preview and review your great product!



And next week, tune in for yet another great giveaway!!!


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Monday, June 20, 2011

Let's Choose: A Social Skills Game Giveaway!


Many times, a child with special needs has more than just one special need.
And many times, one of those needs includes a decreased proficiency in social skills.
My daughter is a perfect example, and she is working so hard at fixing it.
But there are times that we run out of ideas of exactly how to teach these ever important skills.

Enter "Lets Choose": a flexible behavior management and social skills game.
The interactive card game that:
*helps kids internalize their choices and the consequences associated with those choices,
*is designed by two teachers certified in speech-language, special and general education,
*is aimed at 3-8 year olds as well as older kids with special needs.

Developed by two fantastic women, one who hold a Master's Degree in Special Education and the other holds a Master's Degree in Speech Language Pathology, they have a combined total of 32 years experience working with children in a variety of settings from general education to special education, public schools to private schools, and from preschool to high school.



"Let's Choose™ teaches thelanguage of social interaction by providing tools to
help children practiceproblem solving in simulated, and eventually real, social
situations. Childrenwith autism, learning disabilities, attention deficit, and
other learningissues, can learn to be more flexible in social interactions. In
addition, Let'sChoose™ gives them the vocabulary for more successful social
interaction."

Examples of improving social skills include:
*Getting someones attention by saying their name
*Asking and answering questions
*Tone and volume of voice
*Eye contact

ABOUT THE GAME
When I opened the game for the first time, I found 20 green choice cards and 20 purple consequences cards.

Honestly, I found the cards to be amusing and creative!
Each card is simple and is not filled with busy pictures that would lose a child's attention.
The stick-figured people on each card were portrayed with the appropriate
facial expressions, and the use of props on each card helped tell the story
about the card with little explanation necessary.
Even better, the game is able to be modified to my 3 year old's abilities as well as my 7 year old's abilities.
Translation: I was able to tell my 3 year old son a story about
the card in language simple enough for him to understand and remember, while my
7 year old was able to look at the card and build on the story of each card as I
asked wh-form questions (who. what, when, where, why).
The three of us were
also able to play a "matching" game with the cards, matching the choice card to
the consequence and vise versa.


The game provides specific vocabulary for kids to use in various social
situations. It addresses the structure of asking questions and answering in
grammatically correct ways. The game also helps children learn that there is
often more than one outcome to a social situation, teaching flexibility."

Another thing that I liked the most about this game is that I could reference the game when I was at the store with my children...and they remembered!
When I reminded them about their "green choices" and their "purple consequences", they looked at me as if they completely understood.
We talked about behaviors at home versus behaviors in the store and how their actions in the store may not be the best choices.


I loved it. It worked!

Without children realizing it, the Let's Choose home game becomes a great home speech therapy product!
You are able to teach your child many domains of speech such as pragmatics, vocabulary, language, and syntax.
And when you are separate the green/purple cards into categories such as responsibilities, manners and behaviors you can narrow your teaching field to specific areas of concern for you or your child.

And just so you know, the Let's Choose game has been awarded the 2011 National Parenting Center Seal of Approval (TNPC)!
Hmmm. I could've told you that!

So who is interested in this awesome game?

Here's what you need to do to enter this great giveaway:
***********************************************************************************
1.) Go to the Let's Choose Facebook page, "LIKE" them, and let them know that you read about them here! It's a great game, so why wouldn't you like them!!

2.) Become a fan of my Facebook page and leave a comment. If you are already a fan, leave a comment to count as your entry.

3.) Become a follower of my Twitter page and "retweet" my promotion of this blog giveaway. You have to do both for this entry. If you are already a follower on Twitter, just retweet my tweet about this giveaway to count as your entry.

4.) Leave a comment on this blog post with a valid email address. Sorry, but no anonymous comments will be counted as entries.

You may enter all 4 ways.
Contest begins on Monday, June 20th and ends on Tuesday, June 21st at 12:00 noon (CST).

Winner will be chosen by at random and will be contacted by e-mail and on my Facebook page.
Please leave valid email addresses.
If there is no response in 48 hours, another winner will be drawn.
Sorry, but there will be no P.O. Box winners.

This giveaway is for US Residents only.

GOOD LUCK!



(Please see "Disclaimer" tab for full details of this and all reviews and giveaways. Thank you.)


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Sunday, June 19, 2011

Happy Father's Day!


What Makes a Dad

God took the strength of a mountain,
The majesty of a tree,
The warmth of a summer sun,
The calm of a quiet sea,
The generous soul of nature,
The comforting arm of night,
The wisdom of the ages,
The power of the eagle's flight,
The joy of a morning in spring,
The faith of a mustard seed,
The patience of eternity,
The depth of a family need,
Then God combined these qualities,
When there was nothing more to add,
He knew His masterpiece was complete,
And so,

He called it ... Dad

~~Author Unknown.~~

Happy Father's Day to all of the wonderful Dads out there!


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Friday, June 17, 2011

Kaitlyn's Surgery Story

I know that it has been two weeks since surgery, but I am finally finding the time to put together all of the photos that I took as well as all the feelings and emotions that I had on that day.
Below is the day in pictures:

Here it is, 5:30am and we are on our way.
She is smiling and is quite happy, but little does she know what she is about to experience.
I had talked with her a few days prior to surgery about what was going to happen, the sore throat that she would have afterwards, and that I would be staying home from work for two weeks to be with her.
She said she understood.
And I believe that she understood.

While in the pre-op area, she wanted to listen to my music.
This photo is of her jammin' to Lady GaGa.

You can see in this photo that she is aware that something is going to take place soon.
The pre-op nurse came in to check her vitals, and Kate was watching every move she made.

We darkened the room for her so that we could all relax.
Surgery was running a bit late, so we wanted her to stay calm.
Here, she is having some "quiet time" with her baby doll that my Dad bought for her.
The nurse even gave the baby doll a hospital ID band!

And some quiet time with Daddy.

She went back into surgery at 10:20am.

One more kiss.

One more "I love you!"

One more "I love you more!"


91337.

That was her designated number so that we could track where she was in the surgical area.

91337.

I will never forger that number.

I sat and listened to Bolero on my iTunes, just staring out the window at the hot summer day.
I prayed silently to keep her safe.
I kept focusing on the distant drum in Bolero.
Then back to the operative board.

91337.

At 11:15am, the ENT surgeon came out and met us in the family conference room.
"She did wonderful!"
I could breathe a sigh of relief.
He said that her tonsils were no longer a size 4, but a size 2+ (thanks to the injections of antibiotics and steroids one week prior!).
Adenoids came out, too, and her palate was a normal shape.
(NOTE: you can't take out adenoids if the palate is cleft.)
Now she was in the hands of the Optho surgeon.
Back to the waiting room.

Back to Bolero.
Back to staring out the window at the summer heat.
Back to praying.
Back to watching the operative board.

At 12:45, the Optho surgeon came out.
He didn't call us into the conference room.
He caught me totally off guard.
I was pacing at the window, praying, listening to my calming music when I heard him.

"She's all done."

His voice was so calm and reassuring.
I felt myself shaking.
My hands trembled as I tried to pull the ear buds from my ears.
I couldn't speak.
I just stood there, frozen and speechless.
My eyes began to well with tears.
And then he hugged me.
"It's all good...you can relax now" he said.
And I did relax.
And I cried.
And when I looked at the surgeon, his eyes were filled with tears as well.
He understood my fear.
But for a surgeon to stand there and allow himself to be as vulnerable as a parent and show his emotion....I was speechless and comforted at the same time.
He quickly tried to get himself together, stammering over his words and talking really fast to hide that he was crying, too.
But it was too late.
I saw his emotion and I appreciated it more than he would ever understand.
This was more than just a doctor or surgeon.
This was an amazing man who cared for my daughter as if he were her father.

Upon entering the Recovery Room, my heart broke as I saw this:

Her tiny finger showing me and the PACU RNs that her oxygenation was great, not like the episodes of apnea we were having one week prior.
That tiny finger held so much information.

After almost two hours, we were able to coax her into a chair to swallow some pain medicine and drink a melted popsicle.
It was so hard to see her in pain and be so scared.

By 3:30pm, she was sitting in her wheelchair waiting for Daddy to bring the car around so that we could go home.
Her right arm was wrapped with Kerlex, protecting the IV heplock that they were sending her home with so that she could get three days of IV hydration.
The. Best. Idea. Ever!

And when we got home, little brother Andrew bought her some pretty pink carnations in the hope that it would make her feel better.
She squeaked and cried when he gave them to her.
He got scared and ran to hide.
He was not used to seeing his big sister like this.
I thought to myself "he is going to have a rough time during this recovery period".

He left eye was bruised and swollen shut from the surgery of resecting and realigning the lateral muscle to treat her strabismus.
The right corner of her mouth was cracked and dried.
Her right lower lip was swollen from the ET tube that they intubated her with during the 2.5hr procedure.
She was a mess.
She smelled so medicinal.
But she was home.

And for the next two weeks, she slept in my bed.
I never co-slept with my children when they were newborns.
I was too afraid.
In this case, I was too afraid if we weren't co-sleeping.

Sleep well, my sweet girl.
It's going to be a long two weeks!
I am so proud of you!
You are my hero.
You are stronger than anyone has ever given you credit for.
I love you so much.

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Spirituality: There's an App for That!




There is no doubt that my faith in God has helped me through many rough bumps in the road of special needs that we travel.

No doubt.

And even in some of the darkest times, I can always find a rainbow somewhere.
Yesterday was no different.
Yesterday was the "Meet-and-Greet" for both of my kids for ESY (Extended School Year).
I am blessed that both of my children enjoy school and the social interactions that they get from it.
And for the last two weeks, Andrew has missed school terribly.
Kaitlyn has been too busy recovering from surgery to miss school, so I will cut her some slack.
So as we drove to Andrew's school first, I could see in my rear view mirror that Kate was starting to wilt.
When I asked her what was wrong, she said "I am sick."
This recovery has really been hard on her.
Her energy is low.
She has little to no appetite.
And she seems a tad withdrawn.

And while Andrew skipped into school and said a cheerful "HI!" to his new summer school teachers, my little Kate looked sad.
And that made me sad.
After Andrew's event, we headed over to Kaitlyn's school.
Her teacher this summer will be the same teacher as last school year, Miss M.
Kate loves Miss M!
Technically, we didn't have to go to her Meet-and-Greet because Kaitlyn knows her teacher.
But I thought it would be some good medicine for Kate to see her and her school.
Maybe it would perk her up a bit?

Wrong.
She was quiet, withdrawn, and spoke in a mouse-like voice.
I was deflated.
I thought for sure that this would be the spark we needed for Kaitlyn to get over this post-surgical hump.
It didn't.

As we walked back to the car, I checked my phone and received an email that was certainly a rainbow in this blah morning.
A man named Gary had sent me an email about a religious app for an iPad and if I was interested in it.

I would be totally interested in it, had I owned an iPad.
But I don't, believe it or not.
Unfortunately, an iPad is a luxury item for me right now, and we have two huge surgery bills to pay for out-of-pocket since we went out-of-network.
But that was our decision, and we are fine with that decision.

But the app is called "Wee Pray---Pray With Me", was developed by Dawn Kempf, and it is something that I am sure many of you would like!







"Are there times you miss your child’s bedtime prayer?
Date Night?
Do you work a different shift?
Travel for business?
Share custody?
Are your Grandchildren in another state?
Are you deployed away from your family?
Are you already at work before your children awaken?

Wee Pray - Pray with Me allows you to record special
prayers or messages for your child to play when you
aren’t available.

Prayers and messages are easily emailed to other Wee
Pray - Pray with Me owners. Grandma and Grandpa can
easily pick their favorite photo, record their messages and
email it right to you."


It's really a great app!
Thanks, Gary and Dawn, for being that little rainbow that I needed yesterday!




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