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Wednesday 30 November 2011
A sneak peek at one of the photos from the photo shoot while we were in Chicago. Love. Love. Love it. One of my absolute favorite photos of her. She looks so grown up in this picture.
For Arlynn's Sister
Penulis : Unknown on Tuesday 29 November 2011 | 13:51
Tuesday 29 November 2011
For Arlynn's Sister ... not sure if you're still reading my blog or not, but I hope you'll see this post meant for you!
A couple weeks ago you left me a comment asking my permission to use something for a school project, but there was no email associated with your comment or blogger account.
I went to your blog (your sister is adorable, BTW!) and couldn't find an email there either. I was going to leave you a comment on your blog but it doesn't appear you have comments enabled. So I have no way of contacting you, that I could find anyway, except by posting on my blog for you.
So if you see this please leave me a comment with your email ... or just email me mdbeau98 at yahoo dot com so I can reply to you.
Thanks!
A couple weeks ago you left me a comment asking my permission to use something for a school project, but there was no email associated with your comment or blogger account.
I went to your blog (your sister is adorable, BTW!) and couldn't find an email there either. I was going to leave you a comment on your blog but it doesn't appear you have comments enabled. So I have no way of contacting you, that I could find anyway, except by posting on my blog for you.
So if you see this please leave me a comment with your email ... or just email me mdbeau98 at yahoo dot com so I can reply to you.
Thanks!
Big Signing Time Sale!
Penulis : Unknown on Monday 28 November 2011 | 06:22
Monday 28 November 2011
Through today you can get 40% off orders of Signing Time DVDs when you spend $40 or more.
This is a great discount especially if you've been wanting to order (or need holiday gift ideas to give to the grandparents etc!) Baby Signing Time DVD Gift Set, Baby Signing Time: Full Collection!, Signing Time Series 1 DVDs, or Signing Time Series 2 DVDs.
It also applies to orders including Flash Cards, Music CDs, Books, and T-Shirts.
(It does exclude gift cards, digital downloads from Signing Time on Demand and Potty Watch.)
We loved using the Signing Time DVDs when Kayla was younger. It sure did help bridge that gap of communication when she was mostly still non-verbal, or we had trouble understanding her speech.
Lucas watched the videos too and picked up signing easily enough, but he also was pretty verbal so he dropped signing pretty quickly! Every once in a while the kids will watch a video to refresh their signing skills... which is coming in handy now. We recently met a family who has a daughter Kayla's age who has CP and is deaf. So the kids are being reminded to use their signs when they talk with her and I'm glad they can make that connection with her.
This is still one of my all-time favorite videos of Kayla signing and signing along with Rachel.
This is a great discount especially if you've been wanting to order (or need holiday gift ideas to give to the grandparents etc!) Baby Signing Time DVD Gift Set, Baby Signing Time: Full Collection!, Signing Time Series 1 DVDs, or Signing Time Series 2 DVDs.
It also applies to orders including Flash Cards, Music CDs, Books, and T-Shirts.
(It does exclude gift cards, digital downloads from Signing Time on Demand and Potty Watch.)
We loved using the Signing Time DVDs when Kayla was younger. It sure did help bridge that gap of communication when she was mostly still non-verbal, or we had trouble understanding her speech.
Lucas watched the videos too and picked up signing easily enough, but he also was pretty verbal so he dropped signing pretty quickly! Every once in a while the kids will watch a video to refresh their signing skills... which is coming in handy now. We recently met a family who has a daughter Kayla's age who has CP and is deaf. So the kids are being reminded to use their signs when they talk with her and I'm glad they can make that connection with her.
This is still one of my all-time favorite videos of Kayla signing and signing along with Rachel.
Trip To Chicago
Penulis : Unknown on Friday 25 November 2011 | 13:06
Friday 25 November 2011
In pictures, here is a recap of our whirlwind trip to Chicago:
The kids loved walking around and seeing all the "really, really tall buildings!" everywhere
We returned to our hotel room after walking around just in time to find they were bringing complimentary milk and cookies! (Unfortunately we couldn't enjoy any right away because we were getting ready to meet the group for dinner!) I did ask if they happened to have anything gluten-free and they called back and said the chef would make some chocolate-covered strawberries for Kayla!
One of the sponsors of the contest - Real Kids Shades - took all the families out to dinner Thur night. We went to Rainforest Cafe (where the manager was great in talking to me about what Kayla could have and they would prepare it off to the side to reduce the risk of any contamination.)
On our way back to our room after dinner we encountered Santa!
On our way!
Picked up from the airport in a limo
View from hotel room
Exploring Michigan Ave (the Conrad was our hotel)
The kids loved walking around and seeing all the "really, really tall buildings!" everywhere
We returned to our hotel room after walking around just in time to find they were bringing complimentary milk and cookies! (Unfortunately we couldn't enjoy any right away because we were getting ready to meet the group for dinner!) I did ask if they happened to have anything gluten-free and they called back and said the chef would make some chocolate-covered strawberries for Kayla!
One of the sponsors of the contest - Real Kids Shades - took all the families out to dinner Thur night. We went to Rainforest Cafe (where the manager was great in talking to me about what Kayla could have and they would prepare it off to the side to reduce the risk of any contamination.)
On our way back to our room after dinner we encountered Santa!
On Friday we walked to the Navy Pier (but didn't stay outside to walk around because it was too windy!) But we did go inside to the Children's Museum - this is the view from one of the windows.
We were all dressed up from the photo shoot and had some time before the dinner and awards banquet, so I took some photos in the hotel lobby.
At the dinner:
The next morning we were able to meet up with some friends that I've known online (and we met in person in San Antonio for the NDSC Convention). Lisa and her kids Cori and Jamie!
Heading back to the airport:
The excitement of the whole weekend finally caught up with Kayla. 5 minutes after we were in the air she leaned over like this and passed out.
Special Exposure Wednesday
Penulis : Unknown on Wednesday 23 November 2011 | 09:06
Wednesday 23 November 2011
The Post & Courier did another article on Kayla: Eyes Win The Prize.
I love how they again cropped a picture to highlight her eyes and put it on the cover!
ABC News 4 also came out for another interview. Local Girl Wins National Award for Most Beautiful Eyes Contest.
And the Summerville Journal Scene's article came out today: Her Eyes Won The Prize. What I like about this article is that I started to ramble on about the scholarship, the need for having a special-needs attorney make sure we set this all up so it won't negatively impact Kayla in the future, and the hope that Congress will pass the ABLE Act ... this is a perfect example of how the ABLE Act could be used.
I love how they again cropped a picture to highlight her eyes and put it on the cover!
ABC News 4 also came out for another interview. Local Girl Wins National Award for Most Beautiful Eyes Contest.
And the Summerville Journal Scene's article came out today: Her Eyes Won The Prize. What I like about this article is that I started to ramble on about the scholarship, the need for having a special-needs attorney make sure we set this all up so it won't negatively impact Kayla in the future, and the hope that Congress will pass the ABLE Act ... this is a perfect example of how the ABLE Act could be used.
Well Hello, Beautiful Eyes!
Penulis : Unknown on Sunday 20 November 2011 | 04:46
Sunday 20 November 2011
So... most people already know via Facebook ... but I have to announce on my blog as well ...
Kayla is the grand prize winner of Prevent Blindness America's Most Beautiful Eyes Contest!
I still don't think it has quite sunk in yet! She is the recipient of a $25K college scholarship (maybe that is the part that hasn't sunk in yet!)
And she will now be the face of the Star Pupil program for the next year!
What an amazing time we had in Chicago meeting the wonderful employees from PBA and the sponsors of the contest.
I know this post doesn't do our trip justice - I will have to do another post later; but we just got home last night and we're already off for a dolphin site-seeing trip this morning!
Thank you for sharing in our excitement!
Kayla is the grand prize winner of Prevent Blindness America's Most Beautiful Eyes Contest!
I still don't think it has quite sunk in yet! She is the recipient of a $25K college scholarship (maybe that is the part that hasn't sunk in yet!)
And she will now be the face of the Star Pupil program for the next year!
What an amazing time we had in Chicago meeting the wonderful employees from PBA and the sponsors of the contest.
I know this post doesn't do our trip justice - I will have to do another post later; but we just got home last night and we're already off for a dolphin site-seeing trip this morning!
Thank you for sharing in our excitement!
Kayla is a Finalist!
Penulis : Unknown on Thursday 17 November 2011 | 09:35
Thursday 17 November 2011
I just updated my blog, but in case you're visiting via a direct link to this post here is the update to the contest: Kayla is the grand prize winner! She is the face of the Star Pupil program AND won a $25K college scholarship! See the press release from my blogs home page.
So... remember last month when I announced that Kayla was the state winner for the Most Beautiful Eyes contest?
A panel from Prevent Blindness America narrowed the state winners down .to 5.
Those 5 were sent to the 3 celebrity judges (former TV broadcaster Larry King, Pittsburgh Pirates player Derek Lee, and NASA astronaut Walter Cunningham). The celebrity judges picked the 1st, 2nd, and 3rd place winners.
A few weeks ago I got the call that Kayla was one of the top 3 finalists! Wow!
Kayla has become a little celebrity around town.
The Post and Courier did a follow-up article.
The Summerville Journal Scene wrote and article.
ABC News 4 came out for an interview.
Here is the video clip:
We were at Ye Olde Fashioned Ice Cream and Sandwich Cafe the other day and when we walked in the lady behind the counter said to me, "She looks like the girl in the paper with the pretty eyes." Me, "Yep! That's her!"
The winner will be announced Friday night at the annual awards dinner and banquet.
The winner will receive a $25K college scholarship (2nd and 3rd place receive scholarships too) and become the face of their Star Pupil program for a year. Excited much?!
Please keep your fingers crossed for Kayla!
So... remember last month when I announced that Kayla was the state winner for the Most Beautiful Eyes contest?
A panel from Prevent Blindness America narrowed the state winners down .to 5.
Those 5 were sent to the 3 celebrity judges (former TV broadcaster Larry King, Pittsburgh Pirates player Derek Lee, and NASA astronaut Walter Cunningham). The celebrity judges picked the 1st, 2nd, and 3rd place winners.
A few weeks ago I got the call that Kayla was one of the top 3 finalists! Wow!
Kayla has become a little celebrity around town.
The Post and Courier did a follow-up article.
The Summerville Journal Scene wrote and article.
ABC News 4 came out for an interview.
Here is the video clip:
We were at Ye Olde Fashioned Ice Cream and Sandwich Cafe the other day and when we walked in the lady behind the counter said to me, "She looks like the girl in the paper with the pretty eyes." Me, "Yep! That's her!"
The winner will be announced Friday night at the annual awards dinner and banquet.
The winner will receive a $25K college scholarship (2nd and 3rd place receive scholarships too) and become the face of their Star Pupil program for a year. Excited much?!
Please keep your fingers crossed for Kayla!
Special Exposure Wednesday
Penulis : Unknown on Wednesday 16 November 2011 | 09:50
Wednesday 16 November 2011
I'm Better At...
A few weeks ago the kids were at the table when I heard Lucas make a comment. He said, "I'm better at coloring." It wasn't said in a boastful, mean, or teasing way. More like a matter-of-fact way. He was just making a statement. I was pretty sure I knew what he meant by that and it made my heart heavy. So my first, quick response was to tell him something like "We don't say that."
He asked me, "What don't we say?" Just to be sure I did understand what he was said I asked him to say it again. He seemed a little shy and unsure, but he said again that he was better at coloring. I asked him what he meant by that, who was he better at coloring? I think he was a little embarrassed and didn't want to say anymore. He knew he said something that got my attention but couldn't quite figure out what it was. Finally he said, "Better than Kayla."
So I told him "That's what we don't say, that we're better at something." He asked, "What word are we not supposed to say?"
Bless his heart. He thought he said a 'bad' word. I tried to explain to him that he colors his way and she colors her way but we shouldn't say that we're better than someone else.
Then this morning he was looking at one of Kayla's pages she colored and said, "I don't like scribbling." I asked what he meant and he mimicked scribbling across her page. I said that Kayla colored that page. He said, "I don't like it."
I told him that wasn't nice to say because Kayla tries her best to color. Then I went on to say, "Remember Kayla has Down syndrome? That means some things are harder for Kayla to do. Writing and coloring are harder for Kayla, but she still tries her best. It isn't nice to say we don't like something that someone did the best they could."
Lucas has heard "Down syndrome" before - it's not that we don't say it. We talk about why we go to the Buddy Walk, and it has come up other times that Kayla "has Down syndrome." But I know that doesn't mean anything to either of them right now.
I knew eventually I'd have the talk with Lucas about Ds and what it means for Kayla and how it affects her; I just didn't expect it to be so soon. I didn't expect to have to start talking to him about it when he was 3. Not that it's a bad thing; the earlier the better so he'll be used to this being a natural part of our lives and discussion. I just didn't think he would notice subtle differences so easily at this age.
And looking at the differences in their coloring pages really brings home to me how the low muscle tone affects Kayla's fine motor skills. It is much harder for her to color and write. He is very precise, careful, controlled, and detailed when he colors. Kayla's fine motor skills hinder her from coloring as easily as Lucas as she uses wide, long strokes.
I have no idea why this one won't upload right-side up! But it was just to show how small Lucas can color around the rim of the bowl and the letters.
I do get glimpses of Lucas being the caring, concerned and protective brother though. Before any of these conversations there was a day that we were at the library and they were using the computers to play a few games. A girl younger than Kayla came over to watch her on the computer and kept trying to help out. Lucas was sitting next to Kayla and kept watching this girl; finally he kept telling her, "She doesn't need your help. My sister doesn't need help."
He asked me, "What don't we say?" Just to be sure I did understand what he was said I asked him to say it again. He seemed a little shy and unsure, but he said again that he was better at coloring. I asked him what he meant by that, who was he better at coloring? I think he was a little embarrassed and didn't want to say anymore. He knew he said something that got my attention but couldn't quite figure out what it was. Finally he said, "Better than Kayla."
So I told him "That's what we don't say, that we're better at something." He asked, "What word are we not supposed to say?"
Bless his heart. He thought he said a 'bad' word. I tried to explain to him that he colors his way and she colors her way but we shouldn't say that we're better than someone else.
Then this morning he was looking at one of Kayla's pages she colored and said, "I don't like scribbling." I asked what he meant and he mimicked scribbling across her page. I said that Kayla colored that page. He said, "I don't like it."
I told him that wasn't nice to say because Kayla tries her best to color. Then I went on to say, "Remember Kayla has Down syndrome? That means some things are harder for Kayla to do. Writing and coloring are harder for Kayla, but she still tries her best. It isn't nice to say we don't like something that someone did the best they could."
Lucas has heard "Down syndrome" before - it's not that we don't say it. We talk about why we go to the Buddy Walk, and it has come up other times that Kayla "has Down syndrome." But I know that doesn't mean anything to either of them right now.
I knew eventually I'd have the talk with Lucas about Ds and what it means for Kayla and how it affects her; I just didn't expect it to be so soon. I didn't expect to have to start talking to him about it when he was 3. Not that it's a bad thing; the earlier the better so he'll be used to this being a natural part of our lives and discussion. I just didn't think he would notice subtle differences so easily at this age.
And looking at the differences in their coloring pages really brings home to me how the low muscle tone affects Kayla's fine motor skills. It is much harder for her to color and write. He is very precise, careful, controlled, and detailed when he colors. Kayla's fine motor skills hinder her from coloring as easily as Lucas as she uses wide, long strokes.
I do get glimpses of Lucas being the caring, concerned and protective brother though. Before any of these conversations there was a day that we were at the library and they were using the computers to play a few games. A girl younger than Kayla came over to watch her on the computer and kept trying to help out. Lucas was sitting next to Kayla and kept watching this girl; finally he kept telling her, "She doesn't need your help. My sister doesn't need help."
"The Clarity Of Polarity"
Penulis : Unknown on Monday 14 November 2011 | 18:44
Monday 14 November 2011
“The Clarity Of Polarity”
They call you senseless
because you choose to sense less.
As soon as problems arise,
You elect to desensitize.
You could have more
Than what you think is in store;
But disdain seeps through your pores.
You’ve lost the hunger for more;
Yet you have the very nerve
To let your point of view curve
As you ridicule us openly
For chasing what we deserve.
You call us a bunch of fools
For not playing by your rules.
Please lose that bully mantra.
We’re no longer in grade school.
Catch back is for the birds.
No revenge needed for these nerds.
You probably can’t pronounce our words;
So just act like you never heard.
How dare you call us absurd?
How are our views unrealistic?
We understand how real life is.
We aren’t just schematics and statistics.
You can’t denounce our possibilities
Because we are inclined to probability.
You can’t deem us a nuisance
Because you can’t read our blueprints.
I’m not all that spectacular:
I have a bit of a vernacular,
A small circle of friends
And no real desire for trends.
I won’t lord over you
Or make you want to go off;
But since you want to be right,
Let me take the time to show off:
“Your criticism is like catechism:
You act like you’ve been instructed
To demolish what we’ve constructed
Like a voracious ensemble conducted
By the subliminal and timid:
So ignorant and insipid
Yet brimming with enough ambition
To try and purge our lipids;
But we will not dissolve.
You chose not to evolve.
No scathing will be exacted
Because you decided to be vapid.
Our views will not be understated,
Trounced upon or degraded
In the name of those
Who call us flashy or over rated.
Now is that nasty?
Does it taste like bile?
Is it bitter and vile?
Then just put down the vial,
Place yourself on a new excursion,
Search for a new destination,
Submerge yourself in subconscious immersion;
And engage in some meditation.”
I’ve no honest need or want
To figure out your motivation
When it comes to your loathing
For our love of dissertation.
To be brutally honest,
You really don’t know how to act.
Your convictions are groundless
And they lack substantial tact.
All are inclined to their decisions;
Whether they are loose or exact.
You can shape your own opinion;
But you cannot alter fact;
And the fact is plain to see
Behind that cloak of secrecy.
You may judge us openly;
But you hate yourself more than me.
You wish that you could listen.
You wish that it was different;
But you can’t accept what’s given
Neither can you dismiss it.
You will never find help
Because you don’t like yourself.
Instead of owning your flaws,
You hide them high on that shelf.
The need to be
Must not include we.
Solitary is he.
Singularity is she.
I can never be you.
You shouldn’t want to be me.
Remove those shades and see
What it’s like to be free.
Learn to celebrate individuality.
Refine your route of persistence.
Stop trying to keep your distance.
Just be grateful for your existence.
Written By: Devin Joseph Metz
They call you senseless
because you choose to sense less.
As soon as problems arise,
You elect to desensitize.
You could have more
Than what you think is in store;
But disdain seeps through your pores.
You’ve lost the hunger for more;
Yet you have the very nerve
To let your point of view curve
As you ridicule us openly
For chasing what we deserve.
You call us a bunch of fools
For not playing by your rules.
Please lose that bully mantra.
We’re no longer in grade school.
Catch back is for the birds.
No revenge needed for these nerds.
You probably can’t pronounce our words;
So just act like you never heard.
How dare you call us absurd?
How are our views unrealistic?
We understand how real life is.
We aren’t just schematics and statistics.
You can’t denounce our possibilities
Because we are inclined to probability.
You can’t deem us a nuisance
Because you can’t read our blueprints.
I’m not all that spectacular:
I have a bit of a vernacular,
A small circle of friends
And no real desire for trends.
I won’t lord over you
Or make you want to go off;
But since you want to be right,
Let me take the time to show off:
“Your criticism is like catechism:
You act like you’ve been instructed
To demolish what we’ve constructed
Like a voracious ensemble conducted
By the subliminal and timid:
So ignorant and insipid
Yet brimming with enough ambition
To try and purge our lipids;
But we will not dissolve.
You chose not to evolve.
No scathing will be exacted
Because you decided to be vapid.
Our views will not be understated,
Trounced upon or degraded
In the name of those
Who call us flashy or over rated.
Now is that nasty?
Does it taste like bile?
Is it bitter and vile?
Then just put down the vial,
Place yourself on a new excursion,
Search for a new destination,
Submerge yourself in subconscious immersion;
And engage in some meditation.”
I’ve no honest need or want
To figure out your motivation
When it comes to your loathing
For our love of dissertation.
To be brutally honest,
You really don’t know how to act.
Your convictions are groundless
And they lack substantial tact.
All are inclined to their decisions;
Whether they are loose or exact.
You can shape your own opinion;
But you cannot alter fact;
And the fact is plain to see
Behind that cloak of secrecy.
You may judge us openly;
But you hate yourself more than me.
You wish that you could listen.
You wish that it was different;
But you can’t accept what’s given
Neither can you dismiss it.
You will never find help
Because you don’t like yourself.
Instead of owning your flaws,
You hide them high on that shelf.
The need to be
Must not include we.
Solitary is he.
Singularity is she.
I can never be you.
You shouldn’t want to be me.
Remove those shades and see
What it’s like to be free.
Learn to celebrate individuality.
Refine your route of persistence.
Stop trying to keep your distance.
Just be grateful for your existence.
Written By: Devin Joseph Metz
Cancer is Rearing its Ugly Head Again
Penulis : Unknown on Sunday 13 November 2011 | 19:38
Sunday 13 November 2011
In Sep 2009 my dad was at the beginning stages of being diagnosed with pancreatic cancer.
By Oct 2009 that diagnosis was determined to be stage 4.
He began chemo and an MRI in Jan 2010 revealed that the pancreatic head mass was essentially not visible.
By Thanksgiving of 2010 my dad was declared in remission; we enjoyed sharing a wonderfully thankful Thanksgiving holiday with him and his wife.
By the title of this post it's obvious the cancer is back.
He's been off chemo but has continued to have follow-up blood work over the past year.
Over the past few months the CA19 (cancer marker) number has been increasing. Once it went over 100 (I think normal is around 37) his doctor had my dad start chemo again.
A few months ago he had a scan to check the pancreas and it was still showing as being clear from any mass.
The CA19 continued to rise. The doctor felt like the chemo wasn't effective anymore and had him stop.
Another follow-up appt for a scan showed lesions on the liver. A biopsy was scheduled.
The results from the biopsy confirm that this is pancreatic cancer metastasized in the liver.
He'll be starting another type of chemo; one that was used in the 50s ... but if it's not showing any good progress he might start on a trial.
Today my dad walked in his 3rd Purple Stride Walk for Pancreatic Cancer. That's a miracle in itself considering his stage 4 diagnosis 2 years ago.
I'm once again asking for prayers for my dad ... prayers that he can beat this cancer yet again and walk in many more Purple Stride walks.
Cancer sucks.
By Oct 2009 that diagnosis was determined to be stage 4.
He began chemo and an MRI in Jan 2010 revealed that the pancreatic head mass was essentially not visible.
By Thanksgiving of 2010 my dad was declared in remission; we enjoyed sharing a wonderfully thankful Thanksgiving holiday with him and his wife.
By the title of this post it's obvious the cancer is back.
He's been off chemo but has continued to have follow-up blood work over the past year.
Over the past few months the CA19 (cancer marker) number has been increasing. Once it went over 100 (I think normal is around 37) his doctor had my dad start chemo again.
A few months ago he had a scan to check the pancreas and it was still showing as being clear from any mass.
The CA19 continued to rise. The doctor felt like the chemo wasn't effective anymore and had him stop.
Another follow-up appt for a scan showed lesions on the liver. A biopsy was scheduled.
The results from the biopsy confirm that this is pancreatic cancer metastasized in the liver.
He'll be starting another type of chemo; one that was used in the 50s ... but if it's not showing any good progress he might start on a trial.
Today my dad walked in his 3rd Purple Stride Walk for Pancreatic Cancer. That's a miracle in itself considering his stage 4 diagnosis 2 years ago.
I'm once again asking for prayers for my dad ... prayers that he can beat this cancer yet again and walk in many more Purple Stride walks.
Cancer sucks.
My Own Pet Balloon/Canines For Disabled Kids
Penulis : Unknown on Saturday 12 November 2011 | 19:30
Saturday 12 November 2011
Canines for Disabled Kids (CDK) is a non-profit organization based in MA. They help kids with disabilities gain independence and participate more fully in society through canine-assistance programs and resources.
Since 1998 CDK has sponsored over 130 assistance dogs; they have been able to increase the number of children being accepted for assistance dogs, and reduce the wait time for many of these children to between 3 months and 1 year, rather than 2 years or more.
Want to hear about a fun and unique way to donate CDK? Check out My Pet Balloon. This was created with the thought in mind of allowing children to simulate the child-pet experience - with a little imagination. My Pet Balloon come in a variety of animals from dinosaurs to ladybugs to ponies to pandas and everything in between. They are large, durable, helium-filled balloon animals, with legs and leash. Once filled they last a couple of weeks ... when they start to soften/deflate just bring them back to a store and ask to refresh the helium!
How does this help out CDK? Read this link to see the partnership between the two organizations. When you order a My Pet Balloon through this link then $5 will be donated directly to CDK. Win-win. A unique gift for your child and an automatic donation to a wonderful organization that helps kids with disabilities acquire service dogs.
Since 1998 CDK has sponsored over 130 assistance dogs; they have been able to increase the number of children being accepted for assistance dogs, and reduce the wait time for many of these children to between 3 months and 1 year, rather than 2 years or more.
Want to hear about a fun and unique way to donate CDK? Check out My Pet Balloon. This was created with the thought in mind of allowing children to simulate the child-pet experience - with a little imagination. My Pet Balloon come in a variety of animals from dinosaurs to ladybugs to ponies to pandas and everything in between. They are large, durable, helium-filled balloon animals, with legs and leash. Once filled they last a couple of weeks ... when they start to soften/deflate just bring them back to a store and ask to refresh the helium!
How does this help out CDK? Read this link to see the partnership between the two organizations. When you order a My Pet Balloon through this link then $5 will be donated directly to CDK. Win-win. A unique gift for your child and an automatic donation to a wonderful organization that helps kids with disabilities acquire service dogs.
21 Act Bills
Penulis : Unknown on Friday 11 November 2011 | 06:43
Friday 11 November 2011
Just heard about another item to contact your state reps about! It is called the 21 Act bills and encompasses 2 bills to make up the 21 Act package.
From the NDSS: Senators Sherrod Brown (D-OH) and Susan Collins (R-ME) introduced two Down syndrome bipartisan research bills. Read their statement here.
These bills are the:
Background Information on the Bills:
The 21 Research Resource Act will expand and intensify Down syndrome programs of the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) to create an infrastructure of Down syndrome tools, including a Down syndrome contract registry, Down syndrome research database, and Down syndrome biobank. These research resources will further strengthen the research being conducted on Down syndrome across the country and better equip our research community with the tools necessary to facilitate their research. This bill also establishes a Down Syndrome Consortium with NIH to facilitate the exchange of information and make research efforts more efficient by integrating the perspectives of key stake holders. This bill requires no additional funding from the government.
The 21 Research Centers Act will create at least six Down Syndrome Translational Research Centers of Excellence that provide an optimal venue and infrastructure for translational research on Down syndrome. The bill requires NIH to publish a research plan on Down syndrome, and update the plan every five years. This bill provides $6 million in annual funding to support the Centers of Excellence.
Follow this link to take action. So easy to just click on the email template and edit for your own personal information and then send it off to your state reps asking them to cosponsor these bills.
In other news ... remember the petition to make World Down Syndrome Day an official date on the UN calendar? It has passed!
"This afternoon, in the UN Headquarters in New York, during the plenary meeting of the Third Committee, the Brazilian proposal was read and adopted by consensus, with the co-sponsorship of over 80 countries." Yay for some recognition!
From the NDSS: Senators Sherrod Brown (D-OH) and Susan Collins (R-ME) introduced two Down syndrome bipartisan research bills. Read their statement here.
These bills are the:
Trisomy 21 Research Centers of Excellence Act of 2011 (S. 1840)
Trisomy 21 Research Resource Act of 2011 (S. 1841)
Background Information on the Bills:
The 21 Research Resource Act will expand and intensify Down syndrome programs of the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) to create an infrastructure of Down syndrome tools, including a Down syndrome contract registry, Down syndrome research database, and Down syndrome biobank. These research resources will further strengthen the research being conducted on Down syndrome across the country and better equip our research community with the tools necessary to facilitate their research. This bill also establishes a Down Syndrome Consortium with NIH to facilitate the exchange of information and make research efforts more efficient by integrating the perspectives of key stake holders. This bill requires no additional funding from the government.
The 21 Research Centers Act will create at least six Down Syndrome Translational Research Centers of Excellence that provide an optimal venue and infrastructure for translational research on Down syndrome. The bill requires NIH to publish a research plan on Down syndrome, and update the plan every five years. This bill provides $6 million in annual funding to support the Centers of Excellence.
Follow this link to take action. So easy to just click on the email template and edit for your own personal information and then send it off to your state reps asking them to cosponsor these bills.
In other news ... remember the petition to make World Down Syndrome Day an official date on the UN calendar? It has passed!
"This afternoon, in the UN Headquarters in New York, during the plenary meeting of the Third Committee, the Brazilian proposal was read and adopted by consensus, with the co-sponsorship of over 80 countries." Yay for some recognition!
He Has Good Intentions
Penulis : Unknown on Thursday 10 November 2011 | 10:48
Thursday 10 November 2011
Lucas brought the mail in the other day. Included in the mail was the Publix sale flyer. He grabbed a pen off the counter and took it, and the sale flyer, to the table.
He told me he was going to make my shopping list (ie circle items to buy).
I heard him say something about getting this cereal because it's gluten-free. I glanced over and saw it was Lucky Charms, which of course is not gluten-free. So I asked him why he thought that one was gluten-free. I love his answer. His heart is in the right place - always being concerned about Kayla and what she can and can't eat.
He told me he was going to make my shopping list (ie circle items to buy).
I heard him say something about getting this cereal because it's gluten-free. I glanced over and saw it was Lucky Charms, which of course is not gluten-free. So I asked him why he thought that one was gluten-free. I love his answer. His heart is in the right place - always being concerned about Kayla and what she can and can't eat.
Special Exposure Wednesday
Penulis : Unknown on Wednesday 9 November 2011 | 10:12
Wednesday 9 November 2011
Jeans? Capris? Or ...? The story behind the picture:
The other day I ran upstairs to Kayla's room and grabbed her a pair of jeans. I went back to the living room and tossed them at her telling her to get dressed. She started to pull them on and kept saying she needed help. I was distracted, briefly glanced over at her, and told her she needed to unzip them first.
You know the pair of jeans you have that are just a little to snug for you, but you love them so you continue to wear them? The only way you can get them on is to wiggle, jiggle, jump, and tug to get them up over your hips?
Yeah, Kayla had a bit of that going on. But she persevered and got those jeans on.
Then she told me she needed help again; with snapping them. I pulled the jeans across her waist and wondered why they were so tight on her. I know she doesn't have a pair of jeans that are too small for her waist.
I glanced down and saw that these jeans fell above her ankles. I knew these weren't a pair of her capris either.
I looked at the tag on the back of the jeans and sure enough ... suspicion confirmed. The missing pair of jeans ... missing from LUCAS'S dresser!
Yes, these are a size 3T! She wears a 6 ... yet she somehow managed to get those jeans on!
I could not help but sit there and laugh at the sight of her wearing Lucas's 3T jeans! And I had been saying to Lucas over the past few weeks, "You are missing a pair of jeans. Where did that pair of jeans disappear to?"
Mystery solved.
The other day I ran upstairs to Kayla's room and grabbed her a pair of jeans. I went back to the living room and tossed them at her telling her to get dressed. She started to pull them on and kept saying she needed help. I was distracted, briefly glanced over at her, and told her she needed to unzip them first.
You know the pair of jeans you have that are just a little to snug for you, but you love them so you continue to wear them? The only way you can get them on is to wiggle, jiggle, jump, and tug to get them up over your hips?
Yeah, Kayla had a bit of that going on. But she persevered and got those jeans on.
Then she told me she needed help again; with snapping them. I pulled the jeans across her waist and wondered why they were so tight on her. I know she doesn't have a pair of jeans that are too small for her waist.
I glanced down and saw that these jeans fell above her ankles. I knew these weren't a pair of her capris either.
I looked at the tag on the back of the jeans and sure enough ... suspicion confirmed. The missing pair of jeans ... missing from LUCAS'S dresser!
Yes, these are a size 3T! She wears a 6 ... yet she somehow managed to get those jeans on!
I could not help but sit there and laugh at the sight of her wearing Lucas's 3T jeans! And I had been saying to Lucas over the past few weeks, "You are missing a pair of jeans. Where did that pair of jeans disappear to?"
Mystery solved.
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