Monday, March 31, 2008

A River Runs Through It

My yard that is. We got hit with a line of severe storms this afternoon. It only rained for a few hours and this was the result...



In some pictures you'll see big blobs, that's hail mixed with the rain. Our sun room flooded, but I didn't get pictures of that. And the pictures not of our yard is of the creek which is one block away from the house. The end of our street was closed off during the storm so that people could not drive into the creek waters flooding the road.

The school buses were cancelled due to hazardous conditions. Only the school didn't call until 4:35 - an hour late. I don't know, something seems wrong with that picture.

The electric went off, but that is pretty normal for here. I swear if the cloud coverage was just right, we would lose power. So after the storm passed, I took Aiden outside to see the damage. He was more impressed with the big trucks (the electric company) and the helecopters (the news) flying overhead. Here and here are the news coverage.


Sunday, March 30, 2008

Slow Dance


Have you ever
watched kids
On a merry-go-round?
Or listened to
the rain
Slapping on the ground?
Ever followed a
butterfly's erratic flight?
Or gazed at the sun into the fading
night?
You better slow down.
Don't dance so
fast.
Time is short.
The music won't
last.
Do you run through each day
On the
fly?
When you ask How are you?
Do you hear the
reply?
When the day is done
Do you lie in your
bed
With the next hundred chores
Running through
your head?
You'd better slow down
Don't dance so
fast.
Time is short.
The music won't
last.
Ever told your child,
"We'll do it tomorrow?"
And in your haste,
Not see
his sorrow?
Ever lost touch,
Let a good
friendship die
Cause you never had time
To call
and say,'Hi'
You'd better slow down.
Don't dance
so fast.
Time is short.
The music won't
last.
When you run so fast to get somewhere
You miss half the fun of getting there.
When you worry and hurry
through your day,
It is like an unopened
gift....
Thrown away.
Life is not a
race.
Do take it slower
Hear the
music
Before the song is over.


by Author Unknown


Friday, March 28, 2008

You Know You Have a Special Needs Child When...

* You compare ER's instead of grocery stores.

* You compare your child's oxygen saturations.

* You view toys as "therapy".

* You don't take a new day for granted.

* You teach your child HOW to pull things out of the cupboard, off the bookcases, and that feeding the dog from the table is fun.

* The clothes your infant wore last fall still fit her this fall.

* Everything is an educational opportunity instead of just having plain old fun.

* You cheer instead of scold when they blow bubbles in their juice while sitting at the dinner table (that's speech therapy), smear ketchup all over their high chair (that's OT), or throw their toys (that's PT).

* You also don't mind if your child goes through the house tooting a tin whistle.

* You fired at least 3 pediatricians and can teach your family doctor a thing or two.

* You can name at least 3 genes on chromosome 21. (You really know your toast if you can spell the full names correctly)

* You have been told you are "in denial" by at least 3 medical or therapy professionals. This makes you laugh!

* You have that incredible sinking feeling that you've forgotten SOMETHING on those few days that you don't have some sort of appointment somewhere!

* You get irritated when friends with healthy kids complain about ONE sleepless night when they're child is ill!

* Your vocabulary consists of all the letters OT, PT, SP, ASD, VSD, IFSP, etc.

* You keep your appointment with the specialist even though a tropical storm is raging because you just want to get this one over with.....you waited 8 months to get it.....and besides, no one else will be there!

* Fighting and wrestling with siblings is considered PT.

* Speech therapy occurs in the tub with a sibling.

* When potty training is complete, you take out a full page public notice in the Washington Post.

* When the Doctors/Specialist/Hospitals etc. all know you by your name without referring to your chart.

* You keep a daily growth chart
.
* You calculate monthly statistics for the number of times your child vomits, and did this for more then one year.

* You phone all your friends when your child sits up for the first time, at age two.

* With a big smile on your face you tell a stranger that your four year old just started walking last week.

* Her medical file is several inches thick and growing.

* You have a new belief.....that angels live with us on earth.



I first received this email when Aiden was about 3 months old. And I still have it saved in my inbox. Debbie, Addi's mom, reminded me of it.


Thursday, March 27, 2008

For the Love of Oreo's Double Stuff Cream

Aiden loves cookies. So yesterday I gave him an Oreo to chew on. Much to my surprise he twisted the Oreo to get to the creamy center. Meanwhile, the chocolate cookie part was discarded and forgotten about.





Wednesday, March 26, 2008

MRI and Hip X-Ray Results

New Dr. Pediatrician just called with the results of Aiden's hip x-rays and the MRI x-rays.....

Everything looks good!!!!!!!

A doctor who doesn't call with bad results, imagine that! I think I'm in love. LOL!!!

Mr. Blue Sky Available on DVD


As per the thousands of requests we have been receiving over the past year, I am happy to announce that Mr. Blue Sky DVD is now available through the film's website www.mrblueskymovie.com

As March 21, 2008, WORLD DOWN SYNDROME DAY is finally here, we all hope to bring
awareness to Down syndrome with hope and acceptance. In honor of World Down Syndrome Day, The Mr. Blue Sky movie is now available on DVD!

The story of Mr. Blue Sky (film) is a heart-warming love story, which is as much about hope for children born with Down syndrome as it is an inspiration for all children born with any intellectual or developmental challenges. The main message of the film is:

Social inclusion and acceptance for all individuals born with any intellectual or developmental challenges.

By purchasing the DVD you will be partnering with us in both raising Down syndrome Awareness and also making a contribution as a portion of the proceeds of Mr. Blue Sky DVD will go back to the Down syndrome community in honor of our so LOVED children and their families!

To purchase DVD just go to the website www.mrblueskymovie.com and follow the link for BUY DVD.

'Mr. Blue Sky challenges society's barriers by presenting a fresh look at our preconceptions for defining people's lives.'
'Mr. Blue Sky is a story that asks us to see all people as individuals capable of similar wants, needs, and accomplishments.'

The exposure we can bring to the public for these individuals born with Down syndrome would be unbelievable.

And, it is a LOVE story that will touch everyone's heart.

Mr. Blue Sky is a film that can change people's lives for the better!

Please help continue to spread the word to all friends and family that Mr. Blue Sky DVD IS NOW AVAILABLE, and ask them to forward to all family and friends as well etc...

Thank you for your support and concern

Sincerely,

Tom Lee
Executive Producer
Mr. Blue Sky

Splish, Splash (Aiden Was Takin' a Bath)




Tuesday, March 25, 2008

Aiden's MRI

Aiden decided he wanted to go to bed at 7:00 last night. I had decided that he was going to stay up late so that he would sleep on the way to the hospital. I woke him up at 9:30 to play and eat. He went back to bed at midnight.

Fortunately, he slept through his 3 am bottle. However when he heard my alarm go off, he was awake also and wanting a bottle. Since he was going under general anesthesia, no bottle was permitted. He whined for about 15 minutes until Dad got out fo bed and occupied him until time for us to leave for the hospital.

Aiden slept on the way to the hospital.

When we got to the hospital, we "mazed" ourselves through to radiology. There Aiden had to flirt with every woman he encountered. About 8:15, the nurse comes in and gives Aiden a dose of Versed elixir. Aiden is naturally really laid back. Now picture a really laid back person on Valium. Everything was in slow motion. His hands, which normally go 0 - 90 in under 3 seconds, were doing good to move at all. And he looked at everything as if he were seeing it for the first time.

Chris and I got to go into the scan room while Aiden was "going to night-night". The anesthesiologist got a baseline of Aiden's heart rate and nearly freaked when the monitor was reading 89. "Yes, that is normal for Aiden." When Aiden was went under anesthesia, his heart rate goes up to a more normal range, 114 - 120.

We didn't get to watch the MRI though. We had to go sit in the "Surgical Family Waiting Room" while it was being done. When the procedure is done, the volunteer calls you on the phone. Instead of calling us, the volunteer came to get us and walked us to recovery.

When we got to recovery, Aiden immediately wanted held and a bottle. We didn't bring the dreaded Pedialyte, but brought Pediasure. Aiden went through 2 bottles of Pediasure before we left the recovery area and went to his outpatient room. There he took another bottle. Due to the fact that he was eating very well and was having no issues with the anesthesia, he got discharged 2 hours 15 minutes after we arrived. This is our FIRST outpatient procedure EVER!!!!!!! I like outpatient.

Then we had to stop by Dr. Pediatrician's office to pick up a CD of Aiden's hip xrays to take to Dr. Pediatric Orthopaedic Specialist on Friday. I figured that the disc would be at check-in. Nope. So, I went to xray/imaging. Nope. I then had to go upstairs to Dr. Pediatrician's office. BINGO!!

One would think that being up at 5:30am, the child would want a nap. NOPE, not Aiden. I had to put him in his crib and turn on the piano bar just to get him to wind down enough to take a nap, and I could get a much needed nap myself. And then he took a 3 hour nap. So to get him to bed at a decent time tonight, he got his bath and bottle.



Monday, March 24, 2008

Toofers!!!!!!!!!!!!

Aiden has a tooth!!!!!!! It's a molar, but it's a tooth!

Aiden's Easter

We hope everyone had a good holiday. We spent the day at Grandma Nise's house for dinner and an egg hunt. This was really Aiden's first Easter, as last year it was following his heart surgery and he really wasn't up to doing much. He was still so drained.

But we got lots of pictures and some video

Eating Peeps



Easter outfit



Hunting eggs






Sunday, March 23, 2008

Saturday, March 22, 2008

Aiden's Virtual Easter Basket

If this is your widget, log in to CafeMom to access additional controls.

Friday, March 21, 2008

Join in the Celebration





Click on the title or here to go to the World Down Syndrome Day website to learn more about this wonderful day.





If you don't have a child or family member with Down syndrome, that's okay. You can still show your support for children like Aiden. We asked all of our friends and family members to wear yellow and blue on this very special day.

Thursday, March 20, 2008

Prayer Request and A Small Favour to Ask

Rhett is having surgery tomorrow and his brothers and sister are very worried about him. Rhett will be in the hospital on Easter Sunday and unable to spend this holiday with his family. Pam has opened her blog for all comments. If you would PLEASE stop by Rhett's Journey and let Dakota, Hunter, and Chloee know that there are people from all over the world praying for Rhett, it would help soothe their minds.

Wednesday, March 19, 2008

Cheez-Its



For more Wordless Wednesday, click here

Happy Birthday Terry (Noah's Mom)

Happy Birfday




Please stop by Noah's Trek to wish Terry a very Happy Birthday



Before and After

I got this idea from Debbie, Addison's Mom. She went shopping and found a really cute "Mom Bag" and then told how she had seen a really cute satchel. But, alas, with kids, really cute satchels are no longer feasible.

So, here is my BA (Before Aiden) purse - one of those really cute little things:

And here is AA (or After Aiden):

And here is a comparison showing the size difference:

Tuesday, March 18, 2008

Aiden's First Dental Appointment

Once we found the office complex, we had a pretty good visit. Aiden sat in the chair just like a big boy would. And Dr. Pediatric Dentist stuck his finger in Aiden's mouth; Aiden didn't fight at all. (It's probably a good thing Aiden is used to getting my finger stuck in his mouth for his gum brushings).

The good news is Aiden does have teeth. The bad thing is, like everything else associated with Down syndrome, his teeth are delayed. Dr. Pediatric Dentist said that children with T21 generally pop one or two through starting at 18 months. Legally Aiden is 18.5 months, but technically he is only 17 months when you factor in the prematurity. So, hopefully in the next month or so we'll have toofers.

And as soon as Aiden gets those first teeth, he gets to go back in for regularly scheduled visits. But until then, we just keep Aiden on his routine "healthy dental (by that I mean gum) brushings, to establish good oral hygiene."

And while we were on the way to the dentist, Dr. Developmental Pediatrician's office called to schedule that appointment. 4 months from now, in July, Aiden has an appointment with him.

Her: "I see Aiden has a lot of (long pause). Aiden really has a lot of (long pause)."
Me: "Issues?"
Her: "I'm glad you knew where I was trying to go with that."
Me: "Aiden has so many issues that we don't call them issues. Aiden has subscriptions." (Issues would mean that we have select things. Nope, Aiden has them all. And they aren't going away. Therefore, Aiden has a lifetime subscription.)
Her: "That is a good way to look at it."

It was kind of funny when I talked to the scheduling person. She was trying to be "PC" about Aiden. I guess she didn't want to offend me. It really is kind of hard to offend me. I, for one, know firsthand what Aiden's issues are. I have been dealing with them for quite some time now. Like, um, since before he was born.

Monday, March 17, 2008

More Specialists and Tests

Aiden goes to a pediatric dentist tomorrow for a "limited exam". He doesn't have teeth yet, but since he teethes and hasn't pushed any through yet....

Then Thursday he has to go to the hospital for pre-op. Next Tuesday he has an MRI to check for a tethered spinal cord.

Then on the 28th, we get to make an hour and a half drive to see the pediatric orthopedist to check for hip dysplasia.

I'm not making his Spring Break any fun......

Sunday, March 16, 2008

Developmental Milestones

Reaching developmental milestones is a big thing for all families with small children. However, to those families who have a child blessed with a little something extra, reaching those milestones is HUGE.

So, to show how a child with Down syndrome reaches those milestones differently from a child who doesn't have Down syndrome, here is the chart:

DEVELOPMENTAL MILESTONES

Milestone Down Syndrome Range Typical Range

Gross Motor
Sits Alone 6-30 Months 5-9 Months
Crawls 8-22 Months 6-12 Months
Stands 12-39 Months 8-17 Months
Walks Alone 12-48 Months 9-18 Months

Language
First Word 12-48 Months 8-23 Months
Two-Word Phrases 2-7 Years 15-32 Months

Personal/Social
Responsive Smile 1 -5 Months 1-3 Months
Finger Feeds 10-24 Months 7-14 Months
Drinks From Cup 12-32 Months 9 -17 Months
Uses Spoon 13-39 Months 12-20 Months
Bowel Control 2-7 Years 16-42 Months
Dresses Self* 3-8 Years 3-5 Years
*unassisted


In Aiden terms, those in red he is working on or already does.

Saturday, March 15, 2008

March Madness

No, not college basketball March Madness. It's March Madness for Chelsea!

Chelsea's family needs your help, so click here to find out more. And if you are a mom, sister, daughter, grandmother (you know, a WOMAN), then you need what Chelsea's mom is offering. And if you aren't a woman (coughdad,husband,fathercough) then you need it for the woman in your life.

Let Sleeping Dogs Lie

This is how I found Aiden and the new puppy taking a nap yesterday



Normally if they are that close to each other, one gets mad.

PASSED!!!!!!!!!

Committee OKs bill to limit Down Syndrome 'genocide'

Posted on Mar 4, 2008 | by Staff WASHINGTON (BP)--A Senate committee has passed legislation that could serve to reduce the killing of unborn children diagnosed with Down syndrome or other conditions.

The Senate Health, Education, Labor and Pensions Committee approved the Prenatally and Postnatally Diagnosed Conditions Awareness Act, S. 1810, by unanimous consent Feb. 27.

The measure seeks to address the lack of information and support reportedly given to parents whose unborn children are diagnosed with conditions such as Down syndrome.

It has been estimated about 90 percent of American children diagnosed in the womb with Down syndrome are aborted. A similar abortion percentage exists for unborn babies diagnosed with spina bifida, cystic fibrosis and dwarfism, according to the bill's sponsor, Sen. Sam Brownback, R.-Kan.

"The effect of our abortion policy at this moment is that we are in the midst of a genocide of children with Down syndrome, cerebral palsy and other in utero genetic conditions that medical analysis can detect," Brownback said in a commentary published in The Wichita Eagle in July, when he introduced the bill. "If we think there's a chance the child may have a disability, too often he or she is killed in the womb, and the system seems to push it."

The bill would require that parents whose children receive a diagnosis of Down syndrome or another impairment be provided with the latest information on the condition and be informed of support services available. This would apply to a diagnosis on a child before birth or until a year after birth. The measure also would establish a registry of families willing to adopt special needs children.

"It is difficult, sometimes overwhelming, for expecting parents to receive news that their unborn child may be born with a disability," Brownback said in a written release after the committee's action. "This legislation will help parents receiving such news by supplying them with current and reliable information about the many options available for caring for children with disabilities. "

The American College of Obstetricians and Gynecologists (ACOG) made a controversial recommendation in January 2007, recommending that all pregnant women, no matter their age, be offered testing for Down Syndrome. Previously, women 35 years and older were automatically offered testing for the condition, according to ACOG. Pro-life advocates decried the recommendation, saying it would increase the number of unborn Down syndrome children targeted for elimination.

Sen. Edward Kennedy, D.-Mass., is the lead cosponsor of the Brownback-authored bill.

Friday, March 14, 2008

A Prayer Request

A friend of ours, Elliot from Elliot's Expeditions is undergoing his very first surgery today. Wee E is having spinal cord surgery to repair a tethered spinal cord.

If you would say a prayer that the surgery goes great adn he has a quick recovery time, Michelle (Wee E's mom) would appreciate it.

Thursday, March 13, 2008

Robby's Night

I got this in an email from one of my oldest friends. I like the meaning behind it and I felt it fits in with Aiden's story.


True Story Worth Reading !!!

At the prodding of my friends, I am writing this story. My name is Mildred Hondorf. I am a former elementary school music teacher from Des Moines , Iowa . I've always supplemented my income by teaching piano lessons-something I've done for over 30 years. Over the years I found that children have many levels of musical ability.. I've never had the pleasure of having a prodigy though I have taught some talented students.

However I've also had my share of what I call 'musically challenged' pupils. One such student was Robby. Robby was 11 years old when his mother (a single Mom) dropped him off for his first piano lesson. I prefer that students (especially boys!) begin at an earlier age, which I explained to Robby.

But Robby said that it had always been his mother's dream to hear him play the piano. So I took him as a student. Well, Robby began with his piano lessons and from the beginning I thought it was a hopeless endeavor. As much as Robby tried, he lacked the sense of tone and basic rhythm needed to excel. But he dutifully reviewed his scales and some elementary pieces that I require all my students to learn.

Over the months he tried and tried while I listened and cringed and tried to encourage him. At the end of each weekly lesson he'd always say, 'My mom's going to hear me play someday.' But it seemed hopeless. He just did not have any inborn ability. I only knew his mother from a distance as she dropped Robby off or waited in her aged car to pick him up. She always waved and smiled but never stopped in.

Then one day Robby stopped coming to our lessons.

I thought about calling him but assumed because of his lack of ability, that he had decided to pursue something else. I also was glad that he stopped coming. He was a bad advertisement for my teaching!

Several weeks later I mailed to the student's homes a flyer on the upcoming recital.. To my surprise Robby (who received a flyer) asked me if he could be in the recital. I told him that the recital was for current pupils and because he had dropped out he really did not qualify. He said that his mother had been sick and unable to take him to piano lessons but he was still practicing. 'Miss Hondorf, I've just got to play!' he insisted.

I don't know what led me to allow him to play in the recital. Maybe it was his persistence or maybe it was something inside of me saying that it would be all right. The night for the recital came. The high school gymnasium was packed with parents, friends and relatives. I put Robby up last in the program before I was to come up and thank all the students and play a finishing piece. I thought that any damage he would do would come at the end of the program and I could always salvage his poor performance through my 'curtain closer.'

Well, the recital went off without a hitch. The students had been practicing and it showed. Then Robby came up on stage. His clothes were wrinkled and his hair looked like he'd run an eggbeater through it. 'Why didn't he dress up like the other students?' I thought. 'Why didn't his mother at least make him comb his hair for this special night?'

Robby pulled out the piano bench and he began. I was surprised when he announced that he had chosen Mozart's Concerto #21 in C Major. I was not prepared for what I heard next. His fingers were light on the keys, they even danced nimbly on the ivories. He went from pianissimo to fortissimo. From allegro to virtuoso. His suspended chords that Mozart demands were magnificent! Never had I heard Mozart played so well by people his age. After six and a half minutes he ended in a grand crescendo and everyone was on their feet in wild applause.

Overcome and in tears I ran up on stage and put my arms around Robby in joy. 'I've never heard you play like that Robby! How'd you do it? '

Through the microphone Robby explained: 'Well Miss Hondorf, Remember I told you my Mom was sick? Well, actually she had cancer and passed away this morning And well . ... She was born deaf so tonight was the first time she ever heard me play I wanted to make it special.'

There wasn't a dry eye in the house that evening.. As the people from Social Services led Robby from the stage to be placed into foster care, noticed that even their eyes were red and puffy and I thought to myself how much richer my life had been for taking Robby as my pupil.

No, I've never had a prodigy but that night I became a prodigy. . . Of Robby's. He was the teacher and I was the pupil for it is he that taught me the meaning of perseverance and love and believing in yourself and maybe even taking a chance in someone and you don't know why.

Robby was killed in the senseless bombing of the Alfred P. Murrah Federal Building in Oklahoma City in April of 1995. And now, a footnote to the story.

If you are thinking about forwarding this message, you are probably thinking about which people on your address list aren't the 'appropriate' ones to receive this type of message. The person who sent this to you believes that we can all make a difference. So many seemingly trivial interactions between two people present us with a choice: Do we act with compassion or do we pass up that opportunity and leave the world a bit colder in the process?


If God didn't have a purpose for us, we wouldn't be here!

New Lifetime Channel Movie




The Memory Keeper's Daughter

Genre: Drama

Stars: Dermot Mulroney, Gretchen Mol, Emily Watson

Premieres Saturday, April 12 at 9 pm et/pt on the Lifetime Channel

The birth of a child should be the happiest moment in a couple’s life. But when a doctor’s wife has twins, one of whom has Down syndrome, this physician makes the difficult decision to send one of his babies away. An attending nurse discovers his plan and intervenes, putting into motion events that will haunt the doc, his wife and his son for the next 20 years. This all-star movie features Dermot Mulroney (“The Wedding Date”), Gretchen Moll (“3:10 to Yuma”) and two-time Oscar nominee Emily Watson (“Angela’s Ashes”). Based on The New York Times best-selling novel, The Memory Keeper's Daughter by Kim Edwards.