“The only disability in life is a bad attitude.” -Scott Hamilton

"The only disability in life is a bad attitude." - Scott Hamilton

Thursday, May 31, 2012

David Arquette

Through the Down Syndrome Community, I've become friends with Gail Williamson.  She is a strong advocate and pioneer in the world of DS.  Earlier in the month she took her son Blair and his girlfriend Susie to a film screening and they met David Arquette. Someone took Blair's camera and took a photo with David Arquette. Blair didn't like the way the photo was framed and asked his mom to take another.  He then went and found David and asked him to pose with them again. According to Gail, David was so kind to them! David Arquette stayed to make sure Blair and Susie were happy with the photo.  Blair was very happy with this one...
David Arquette with Susie Schallert and Blair Williamson

How sweet of Mr. Arquette!
Just a nice thing I thought I would share with you.

Until Next Time!
Lots of Love,

Tuesday, May 29, 2012

DS Article

I think this is a fantastic article and wanted to share it with you. 

Originally posted 03/21/2012 on Christianity Today.com

Children with Down Syndrome: Will Culture Make Them Disappear?
Why we should see them as an endowment from God and not a mistaken diagnosis.
Kelly Rosati

"On World Down Syndrome Day today, the United Nations will, for the first time, officially recognize those with Down syndrome. I'd say it's about time.

Despite huge advances in improving quality of life—life expectancy has doubled from 25 to 55 years in the last 30 years due to medication, therapies, and specialized surgery—the population of those with Down syndrome is barreling toward extinction.

An amniocentesis used to be widely performed on older women who are at greater risk of carrying a child with Down syndrome, but it carried a small chance of miscarriage, so some refused the procedure. Now a simple blood test can tell a woman whether or not her baby has one extra chromosome and thus differentiates a "perfect" child from a child with a life-altering disability.

A 2011 piece in the New York Post declared "The End of Down's Syndrome," noting that 92 percent of women who receive this diagnosis choose abortion. (This was before the quick and less invasive blood test.) And just two weeks ago, a couple from Oregon received a $2.9 million settlement because their doctor failed to diagnose Down syndrome during pregnancy. The parents, through their lawyer, told the media that while they loved their little girl, they would have terminated the pregnancy had they known her diagnosis.

"What you end up having is a world without people with Down syndrome," Paul Root Wolpe, director of the center for ethics at Emory University, told the Post. "And the question becomes is that a good thing or a bad thing?"

We must not be content to live in a world where abortion weeds out Down syndrome and other kinds of disabilities. Those with Down syndrome have challenges, sometimes significant, but they bring abounding joy and expressive love to everyone and to everything they encounter. A good friend of mine has a teenage son who coaches a basketball team made up of Down syndrome children and teens. Watching them play is a pure joy; it's infectious. Even when the team loses, the players act as though they are excited just to be alive, giving each other big effusive hugs. Where else can you see such good tidings involved in competition?

In a world of cynicism, pride, and unrealistic expectations, those with Down syndrome bring authenticity, innocence, a lack of guile, and a burst of unrelenting happiness. Why extinguish that?

With that in mind, please understand that I don't want to diminish the impact and suffering that comes with finding out you are carrying a child with a disability, a unique kind of hardship. My husband and I adopted four children from foster care, two as babies. As they have grown, they have developed special needs such as Tourette syndrome, bi-polar disorder, chronic anxiety, and significant learning disorders—all before the preteen years. Genetics and poor decisions made by their birth parents during pregnancy define their troubles, and define our family's daily existence. For many like us, disability has a financial, emotional, and relational cost.

While our family struggles tremendously, and often daily, under the weight of our children's illnesses, from all outward appearances, the culture would see our children as normal—and even physically beautiful, especially to this mama. However, their challenges drive us to our knees regularly, and the spiritual maturity they articulate and demonstrate, even during the hardest moments, puts us to shame.

Children with Down syndrome and other disabilities have been seen as aberrations throughout history; they have been ridiculed, used, abused, and exterminated without much thought. Even in a modern era, they bump up against our culture's notion of beauty, perfection, and normal. Our bias against people with disabilities reveals an inner defect, a sickness of the heart that is far worse than any physical or intellectual challenge.

For the Christian community, John's story about the healing of a man born blind is particularly meaningful:
As Jesus was walking along, he saw a man who had been blind from birth. "Rabbi," his disciples asked him, "Why was this man born blind? Was it because of his own sins or his parents' sins?" "It was not because of his sins or his parents' sins," Jesus answered. "This happened so the power of God could be seen in him." (John 9:1–4, NLT; emphasis mine.)
God's glory is manifested in weakness and imperfection, for he is truly the God of the sick and desperate among us. His power is made perfect in all of our disabilities (2 Cor. 12:9).
It should also be said that children born with imperfections don't surprise God. Scripture tells us he sees us in the womb, imparts wisdom to us in the womb, and knows every hair on our head. With that in mind, we can confidently say that mental, emotional, and physical disabilities don't define our worth. We are all equal in God's eyes, and all of infinite worth. A man or woman who belongs to Christ is his beloved child with a preciousness no man can extinguish.
"Right to life" includes all of human existence, from the preborn to the elderly and infirm, and to every stage and experience in between. I am not given to hostility, acrimony, or argumentativeness where it concerns the sanctity of life. I believe those who advocate for abortion are of infinite worth to God. Lately, however, I have to fight off greater feelings of paranoia as I watch where our society is heading. Are we increasingly embracing a culture of death? Is eugenics creeping in with a vengeance?
With advances in genetic testing and the foretelling of the end of Down syndrome, I have to wonder who's next. If a test can reveal future childhood diabetes or cancer, blindness, deafness, a propensity toward violence, and even ALS (Lou Gehrig's disease) later in life, will couples choose abortion? What possible disability or disorder will be eradicated next? What will we as a society become as we strive to avoid suffering and hardship, and raise cultural expectations of normal? And if we see the preborn as just a mass of cells dividing and re-dividing, instead of as a real child with a soul, where will this path lead us?
Even as I fear the answers to these questions and fight for the right of these individuals to a life of dignity, I acknowledge a great God who has the power to change hearts and minds. And when an individual with Down syndrome crosses my path, I will never see it as anything less than a reminder of what is good and holy."
Kelly Rosati is vice president of community outreach and sanctity of human life for Focus on the Family.

This article first appeared in the March 2012 issue of Christianity Today. Used by permission of Christianity Today, Carol Stream, IL 60188.

Until Next Time!
Lots of Love,

Monday, May 28, 2012

Sunday, May 27, 2012

If you haven't seen this video, it's really touching.  Michael, who is 6, has Cerebral Palsy.  His Daddy is a Marine and just returned home from Afghanistan.  While being gone for over a year, Michael learned to walk.  Michael's mother and family kept it a secret from his father until he returned home.  This is the video of Staff Sgt. Jeremy Cooney seeing his son, Michael, walk for the first time.  Get your tissues ready and click play.


Until Next Time!
Lots of Love,

Friday, May 25, 2012

Weekly Therapy Update

"Raymond did well today.  He sat with his legs extended in front of him to play for longer periods and even placed himself in that position one time independently.  Raymond practiced sit-ups and belly time time play for trunk strengthening.  He practiced playing in right and left side sit, kneel and half kneel with help while playing."
-Lisa, Physical Therapist
05/21/12

"Raymond had a good session today attending well while playing with each toy I presented him.  He played well in side sit and kneeling positions with help today.  Raymond played briefly on his belly over my lap.  Attempted standing on the couch cushions for "fishing" but he did not tolerate this well today."
-Lisa, Physical Therapist
05/22/12

"Raymond signed and said play in imitation when I arrived.
Pots and spoons - Raymond imitated stir, stir (approximatly).  Worked on sharing with Lily and following directions.
Potato Head - Raymond worked nicely on pointing to labeled parts on himself and Kristen - He completed the whole head !! : )
Bubbles - Raymond imitated buh-buh with gesture, verbal and tactile prompts."
-Kristen, Speech Therapist
05/24/12

Until Next Time!
Lots of Love,


Thursday, May 24, 2012

Tie-Dye and Apple Pie

Tuesday morning I woke up to a bang.  So I crawled out of bed and went into Raymond's room since I heard him babbling.  This is what I found.

Notice anything off in this picture?


How about now?  Yes, Mr. Raymond broke the side of his crib off.  Ugh.  We were hoping to use the crib for Lily.  Chris is going to see if he can fix it but Raymond sure did a number on it.
About 3 weeks ago we bought Raymond a twin mattress.  We weren't planning on putting it in his room until we painted (since his new twin bedding doesn't match the wall color).  That idea is now out the window.  So Tuesday night Chris brought the frame in and set the mattress up.  We had also planned (and still do) to cut Raymond's door in half so we can see in but he can't get out.  We will also be turning to lock around.  Since we hadn't been prepared for this hiccup, we put a gate up at Raymond's door to keep him in the room overnight.  He seemed very happy to have a big-boy bed in his room when Chris and I showed it to him.  He snuggled up in the bed right away.  He also stayed in the bed overnight!  That was the most impressive part.  Now I need to buy him twin sheets.  I didn't even think about getting him a few sets.  I put a pair of Isabella's sheets on his bed that Grammy bought her when she first got her twin bed.  They are blue with sharks, turtles and fish.  They are also the only none girlie pair she has.  So, I will have to take a trip to Target or Ross for sheets (and pajamas) for our big boy!
On Tuesday, Isabella and I tie-dyed.  She was so excited.  I told her we could in the morning and as soon as Raymond and Lily went down for a nap she was all but pulling me outside. 


 She had a tank top and two t-shirts.




When we were all done outside, we took the shirts inside, covered them with plastic and let them sit overnight.  After covering the shirts in plastic, Isabella and I made Daddy an apple pie.  She loves to help me cook and bake.
Yesterday morning, we rinsed out the tie-dyed shirts.


I think they turned out great!

Nap time yesterday wasn't as smooth as bedtime.  Raymond didn't want to stay in his bed.  After the third time he got up and went to the doorway, I laid in bed with him.  He really liked that.  He wrapped his arm around my neck and rubbed the back of my head.  As happy as Raymond was that I was in bed with him, he still wasn't settling down.  I thought maybe I was more of a distraction then help at that point.  So I told him it was time for a nap and left the room.  I heard him in his room and at the gate but decided not to go over to him.  Then I didn't hear much and went to peek around the corner into his room.  This is what I found...  


He took a nap, just not in the most comfortable place.

I also have some very exciting news to share.  Raymond has been chosen to be honoured by having his name on the t-shirt of an Olympic torch runner while they carry the torch for the 2012 Olympics.  Isn't that cool?!?! 
We will be able to order t-shirts soon, so if you are interested in purchasing one, let me know.
EXCITING!!!

Until Next Time!
Lots of Love,

Wednesday, May 23, 2012

Marshmallows

The weather was nice Saturday evening so we decided to roast marshmallows.

Isabella's marshmallow mouth.

Lily was happy to have a marshmallow too!



Good job Daddy.  You made two little girls very happy : )

Hopefully, soon, Raymond will be able to join in the marshmallow eating fun.  In the mean time, he sat this one out. 


What a sweet sleepy boy.

Until Next Time!
Lots of Love,

Monday, May 21, 2012

WV

I'm back from West Virginia.  My brother is home and doing much better.  Thank you for all the emails, phone calls, texts and prayers for him.  I had fun spending some one-on-one time with our nephew, Alexander.  I think the last time that happened, he was three months old. 


Alexander likes to do gymnastics.  He's really good at cartwheels.


Here he is mid-cartwheel.
He thought it was fun that I was cartwheeling with him.

On Thursday I went to watch Alexander's baseball game.  He did such a good job!


While there, I met Caramel.  SHE WAS SO CUTE!!!

If Isabella would have been there she would have wanted to take her home...okay...to be totally honest, I kinda wanted to. 

After the game, Grandma asked Alexander if he wanted to go to Dairy Queen.  He was so excited!

Nothing like a blizzard after a winning baseball game.

Thanks for keeping Aunt Erica company buddy! 
You tell the best stories and always make me laugh!

Until Next Time!
Lots of Love,

Saturday, May 19, 2012

Weekly Therapy Progress

"Raymond was more cooperative today and did not mind me manipulating his legs.  He did a nice job playing in left and right supported side sit when placed for approximately 1 minute at a time.  He played briefly in supported half kneel and high kneel which he would not do last session.  Raymond is doing great with his wheelbarrow walking.  He only briefly tolerates playing in long sit on the floor when placed."
-Lisa, Physical Therapist
05/14/2012

"Raymond gave me a hard time at the start of the session not wanting me to touch or position his legs.  We went outside to play and worked on safety on the back stairs and staying within the boundaries of the backyard with cues of "stop" and "go that way".  He needed a lot of help at first but then responded to the cues 2 times independently."
-Lisa, Physical Therapist
05/17/2012

"Played outside with Lisa, PT, today.  Language bombardment of play words, through, down, up.  Worked on following directions to stop with physical prompts.  Raymond used "Go" when prompted with "Ready, Set..." and said "okay" and "jump" during play. 
Race Track - He used sign for "car" and said "go" and "down". 
Raymond signed "cat" and said "meow" when I said "cat". 
Used pictures to request potato head parts - He only did 2, then refused further."
-Kristen, Speech Therapist
05/17/2012


Until Next Time!
Lots of Love,


Tuesday, May 15, 2012

Feeding Clinic

Raymond had an appointment on Friday with Dr. Williams at the feeding clinic in Hershey.  Grammy came early and stayed with Isabella and Lily so I could take Raymond alone.  He was a good boy and held my hand and stayed right with me the entire time. 
Raymond has not been doing well with feeding.  He had been doing well, then caught a virus before we went on vacation.  That really seemed to knock his progress back leaps and bounds.  Lately, Raymond has been letting any small amount of food I give him pool in his mouth.  Before getting sick, Raymond would at least attempt to move the food around in his mouth.  Now he isn't.  He is still very interested in food which is a good sign.
There are two main types of feeding problems I discussed with Dr. Williams.  The first was behavioral, which is most common.  The second is simply not physically being able to eat.  Raymond suffers from the second.  He is worried, however, that this physical inability to eat may turn into behavioral feeding problems if not managed.  Dr. Williams said he's never had a patient so willing to participate in the process.  Raymond wants to get in the high chair and he tries to put the nuk brush in his mouth.  The poor kid's body just doesn't know how to appropriately respond to the food.  So collectively we have decided it would be in Raymond's best interest to go into an intense inpatient feeding program.  Because of his willingness to participate, Dr. Williams feels Raymond might be able to finish the program in as little as 4 weeks.  The extreme end of that would be 12 weeks.  I'm also confident that it won't take long to teach Raymond's body how to respond to food.  The only concern that Dr. Williams has for Raymond is drinking liquid out of a cup.  That and chewing will be our biggest hurtles.  We will still probably need to utilize Raymond's G-tube even after the program so he doesn't get dehydrated.  It will be wonderful to give him real food!!!
***   
I hope everyone had a wonderful Mother's Day.  Isabella came to my work with Daddy to take me to lunch.  She also made me such an adorable card.  Inside she wrote, "Your smile is as sweet as pudding."  What a cutie!
***
Our house has been busy as usual.  Miss Lily is walking all over the place.  She is so cute!!!  She is very proud of herself for being able to get up and go.  These last few days she has been walking more then crawling.  Lily also loves to have books read to her.  I love when she scoots over to me backwards and plops down in my lap with a book.  Lily and Raymond are so funny together.  Last night the two of them laughed for hours.  It's nice to see them play together.  Sometimes Raymond is a little rough with Lily.  He tries to hug her too tight and right around the neck.  He's getting better though.  Lily is very quick to let Raymond (and everyone else in the room) know that she doesn't like what he is doing.  Lily is a screamer.  She's very sensitive.  Seriously.  Just typing that makes me laugh.  She cracks me up!
Raymond has been doing well.  He's been really trying to vocalize and talk to us.  I think it's so cute when he takes his little play cell phone, holds it up to his ear, and says, "Okay. Bye!" 
He's very adventurous and attempting to jump off of everything and anything.  It's funny to see the difference in boys and girls.  Hopefully Lily doesn't decide to try to jump off of everything too.  She, as of right now, is much more cautious then Raymond.    Raymond also really likes "Mo", a.k.a. Elmo.  Every time we turn on Netflix, he yells, "Mo!", claps and points at the TV.  When we were at Joanne Fabric's the other week he saw yellow fabric with Elmo on it and was so excited.  I want to go back and buy some to make him a pair of summer jammies.  We also bought Raymond a twin size mattress.  I have mixed feelings about it.  Raymond is at the point where he's really too big for his crib.  Especially since he can crawl out of it and normally hurts himself doing so.  The problem with a regular bed, is that he doesn't understand to stay in it.  We are planning to cut the door about 3/4 of the way up so we can see in his room and turn the handle around so it can be locked from the outside.  We don't want him to come out at night and hurt himself.  I worry that he will fall down the basement stairs.  The door is almost always closed but sometimes we forget.  That would be the night he'd come out of his room looking for someone.  The biggest problem (in my mind) we face with Raymond thus far, is that he doesn't understand cause and affect.  For example - If a child goes in the kitchen and puts their hand on a hot stove top and burns themselves, typically they will never do it again.  Replace Raymond in this scenario.  He would burn himself then go back out in the kitchen and do the same thing all over again 5 minutes later.  That is one of the reason's we are desperate to get a fence.  He would run right out in front of a speeding car.  He knows it's a car and sees it's going fast but doesn't understand that if he gets in front of it that it will hurt him.  Grammy can confirm that.  We can't afford a fence right now but hopefully we will save enough soon.       
    Isabella has nothing but fashion on her mind.  She is always creating designs.  I recently bought her two prom/bridesmaid dresses at a garage sale for $3.  They are too big for her but she was thrilled to have them and enjoys typing or pining things on them.  I'm pretty sure she is going to be a fashion designer.  She has a tie-dye kit that she can't wait to use.  Maybe that will be a good project for this weekend.  I also bought (a while ago) a thing that will attach jewels to clothing.  I haven't shown it to her yet because I know she will become obsessed with putting jewels and gems on everything.  It's coincidental that I bought it so long ago and now she loves that type of thing.  (It was 90% off on clearance at Hancock Fabrics) 
***
The weather for the most part has been nice. 
Everyone has been happy to go out and get some fresh air!

Lily wanted to go into the flower bed.

This is the best picture I took of Raymond outside.  The kid never stands still!
 ***
My grandmother was diagnosed last Friday with an inoperable brain tumor. I found out today that it is malignant. Please keep her in your prayers.
I'm heading to West Virginia to stay with my nephew for a few days. My brother is in the hospital and I don't want his wife to have to worry about Alexander too.
I'd appreciate prayer's for my brother too.

Until Next Time!
Lots of Love,

Sunday, May 13, 2012

Friday, May 11, 2012

Weekly Therapy Progress

"Raymond was in quite the mood today.  He was more interested in self directed activity over therapy activities.  Raymond practiced sitting with legs straight out in front while playing which he is tolerating better.  he practiced half kneel into stand with moderate assistance.  He played briefly in side sit and half kneel with help.  Raymond stepped up on the stool and jumped down using both feet simultaneously today."
-Lisa, Physical Therapist
05/07/12

"Raymond was not quite himself today.  He would occasionally "space out."  Raymond refused to be in kneeling position today.  He practiced playing in long sit on the floor.  He also practiced standing in tiptoes briefly.  He is very unstable and unbalanced on his tiptoes."
-Lisa, Physical Therapist
05/08/12

"We worked on following directions with prewriting skills - nice writing with up/down - nice circle - he said, "round, round."  We worked on lacing and gesture use in session - sing song - more sign animals."
-Stacey, Special Instruction
05/08/12


"Raymond worked nicely today participating in each activity. 
Train tracks - language bombardment of parts.  Raymond imitated "tracks" and "choo-choo" (approximated). 
Keys and doors - Raymond imitated "oh" for open and approximated "turn-turn".
Gears - He imitated "whee"
Potato Head - Nice use of pictures to request
Good following directions."
-Kristen, Speech Therapist
05/10/12

Until Next Time!
Lots of Love,


Wednesday, May 9, 2012

Registration

Last Thursday Isabella has Kindergarten registration!  Oh my.  She's getting so big.  I'm excited for her.  She's really looking forward to it.  While Chris and I took Isabella to her registration, my friend Marty stayed with Raymond and Lily.
The perfect outfit to register for Kindergarten!
After we got back, Chris went to work and Marty and I took the kids to Longwood Gardens.


Crystal Rain Drops

I want one of these for at home.  So pretty.


Lily with the Lily's



Isabella got a little too close to smell a flower.  Can you see the yellow pollen on her nose and lips?





This tree reminded me of something out of Dr. Seuss's the Lorax.

Isabella went into the kids area for a few minutes but I didn't let Raymond or Lily.  I didn't want them to get real wet since it was a little cool outside. 
Raymond protested that decision as we walked away. 

Chubby Little Squirrel




Can you spot the ladybug on Raymond's head?  It stayed there for awhile.

The kids area is always so fun for everyone!





Boo!!!

Isabella brought her notebook and drew lots of pictures of things we saw that day.

Where's Isabella?


 Isabella wanted me to take a picture of this goose on it's nest.  


 Marty and Isabella


 Everyone had a nice time.  Before we headed home, I reserved our tickets for the new Light exhibit at Longwood Gardens from the imaginative British artist and light designer, Bruce Munro.  Chris, the kids and I are going on a member's only night. 
I'm really looking forward to that.  It's going to be beautiful. 
There were a lot of people setting up displays for it already.  That made us even more anxious.
Daddy got home from work not too long after we did.


Lily was tuckered out from her busy day.  Luckily, Daddy is so comfortable : )

Until Next Time!
Lots of Love,