Hello?

The reason I love this so much is that it makes me think about my brother. 

I can actually remember the first time I saw him do this.  Haha!

Until Next Time!

Lots of Love,

Weekly Therapy Update

Raymond didn't have much therapy this week.  He has had several appointments that have taken up the entire day.  On Tuesday we saw cardiology.  Raymond was a good boy for his echo cardiogram.  Everything looked good from a cardio stand point.  The problems that Raymond is currently experiencing, in his opinion, are all pulmonary.  Dr. A. said he doesn't need to see Raymond back for a year unless he starts to have problems.  Let's hope not!!!

Raymond (along with Isabella and Lily) has been fighting a cold.  In one week he lost 4 pounds.  He looks so gaunt and skinny.  Hopefully he gains it back quickly.
Yesterday Raymond went to see Dr. Halligan at the oncology clinic in Philadelphia.  They had to drawl blood to look at his CBC, and the nurses had a very hard time getting a vein.  By the time they were done, I was dripping with sweat from holding him down.  The poor kid screamed and thrashed with all his might.  Raymond is VERY strong when he wants to be - it took three of us to hold him down.  I do not have to results from the blood test yet.  I will at some point today.  Dr. Halligan told me that Raymond still has a 1 in 4 chance of the Cutaneous Leukemia turning into AML (Acute Myeloid Leukemia) until he is a teen.  This is the type of Leukemia that most of the kids in the St. Jude's commercials have (as a point of reference).  When I hear about the blood work, I'll be sure to let you know how it looks.  I'm suspecting that it will look the same as last time.
Dr. Halligan gave Raymond two brand new toys, a stethoscope and about 400 tongue depressors.  He is such a nice man.  I did notice however, that his hand was really shaking while he was examining Raymond.  The last time we saw him, I didn't notice that.  Selfishly, I hope that doesn't mean he won't be practicing much longer.  He has been head of the pediatric oncology department for 38 years.  If Dr. Halligan would leave, so would I.  He is the ONLY reason I go back down to that hospital.  I would switch to Hershey, then all of his doctor's would be in one place. 

*** 

 

Raymond did see Stacy once, but was not very cooperative.  Hopefully today's therapy goes better!

 

"Raymond said sun and bus : )  We worked on labeling and show me where's ___________ (specific objects) 50%.  Raymond was not feeling well today.  Worked on blowing and counting birthday candles."

-Stacy, Special Instruction

09/26/2012

 

 

Until Next Time!

Lots of Love,



Sophie

This is just for fun because it reminds me SO much of my Sophie.  If she could talk, this is something she would say.  She also makes that same face!

 

Until Next Time!

Lots of Love,

Impactful Donation

Cable TV pioneer Dr. John C. Malone makes impactful donation to the Global Down Syndrome Foundation

from the Global Down Syndrome Foundation:

Cable TV pioneer and Chairman of Liberty Media Corporation, Dr. John C. Malone, announced a $100,000 gift to the Global Down Syndrome Foundation to benefit the organization’s marquee annual benefit, the Be Beautiful Be Yourself Fashion Show.

The fundraiser will be held at the Sheraton Downtown Denver on Saturday, October 13, 2012 with celebrity and self-advocates such as dancer DeOndra Dixon, actor Luke Zimmerman, Music Icon Quincy Jones and Academy and Grammy Award-winner Jamie Foxx.

The Global Down Syndrome Foundation’s annual marquee event is equal part awareness-building and fundraising for the Linda Crnic Institute for Down Syndrome. The Be Beautiful Be Yourself Fashion Show is the largest single fundraiser for Down syndrome in the United States. At the heart of the event is the reality that Down syndrome is the least-funded genetic condition by the National Institutes of Health.

After welcoming a granddaughter with Down syndrome into his family, John J. Sie, another cable TV pioneer who worked for Dr. Malone for more than 20 years, helped to launch the Crnic Institute and the Global Down Syndrome Foundation.

Dr. Malone commended his longtime friend and colleague, John J. Sie, for his approach to stimulating research and medical care benefitting people with Down syndrome. “I’ve known Johnny for a long time now. When he sets his mind to something he will get it done,” said Dr. Malone. “That’s good news for people with Down syndrome and their families – the research Johnny is underwriting is exciting and promising. I’m glad I can help.”

“This gift means a great deal to me, my family and of course the millions of people with Down syndrome who deserve more research funding and better medical care,” said John J. Sie, board member of the Crnic Institute. “We so appreciate John and Leslie’s generosity and friendship.”

Dr. Malone is Chairman of Liberty Media Corporation, a position he has held since 1990. He is also the Chairman of the Board of Liberty Global, Inc. (LGI), a position he has held since June, 2005. From 1996 to March 1999 when Tele-Communications, Inc., (TCI) merged with AT&T Corp., Dr. Malone was also Chairman and Chief Executive Officer of TCI. Previously, from 1973 to 1996, Dr. Malone served as President and CEO of TCI. He currently serves on the Board of Directors for CATO Institute, Expedia, Inc., Discovery Communications, Inc., and SiriusXM. Additionally, Dr. Malone is Chairman Emeritus of the Board for Cable Television Laboratories, Inc. as well as Director or similar capacity for various family businesses, Trusts or Foundations.

John J. Sie is founder and former Chairman of Starz Entertainment Group LLC. Founded in 1991, the Colorado-based company is owned by Liberty Media Corporation and is the parent of premium movie networks, including Starz and Encore. Sie is considered by many to be the father of digital television – in 1989 he submitted the very first white paper on digital compression to Congress and the FCC that would dramatically change the landscape of television in the United States and the world. In 2005, Sie retired and with his wife Anna established the Anna and John J. Sie Foundation. The Foundation supports the sharing of knowledge amongst peoples and cultures throughout the global community, with emphasis on Down syndrome, education, media, business, and technology.

About the Linda Crnic Institute for Down Syndrome

The Linda Crnic Institute for Down Syndrome is the first medical and research institute with the mission to provide the best clinical care to people with Down syndrome, and to eradicate the medical and cognitive ill effects associated with the condition. Established in 2008, the Crnic Institute is a partnership between the University of Colorado School of Medicine, the University of Colorado Boulder, and Children’s Hospital Colorado. Headquartered on the Anschutz Medical Campus, the Crnic Institute includes the Anna and John J. Sie Center for Down Syndrome at the Children’s Hospital Colorado. It partners both locally and globally to provide life-changing research and medical care for individuals with Down syndrome. The Crnic Institute is made possible by the generous support of the Anna and John J. Sie Foundation, and relies on the Global Down Syndrome Foundation for fundraising, education, awareness and government advocacy. It is a research and medical-based organization without political or religious affiliation or intention.

About the Global Down Syndrome FoundationThe Global Down Syndrome Foundation is a public non-profit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy. Formally established in 2009, the Foundation’s primary focus is to support the Linda Crnic Institute for Down Syndrome, the first academic home in the US committed to research and medical care for people with the condition. Fundraising and government advocacy that corrects the alarming disparity of national funding for people with Down syndrome is a major short-term goal. The Foundation organizes the Be Beautiful Be Yourself Fashion Show - the single largest annual fundraiser benefitting people with Down syndrome. Programmatically the Foundation organizes and funds many programs and conferences including the Dare to Play Football and Cheer Camps, Global Down Syndrome Educational Series, and Global Down Syndrome Multi-Language Resource Project. The Foundation is an inclusive organization without political or religious affiliation or intention.

Calories

Until Next Time!

Lots of Love,

Weekly Therapy Update & More

Raymond had a pulmonology appointment on Wednesday.  She was not happy that Raymond hasn't been wearing his oxygen but understands how difficult it is to keep it on him.  She is in agreeance with me that Raymond's gallbladder needs to come out sooner then later.  We see the GI doctor in about 2 weeks and if he doesn't go forward with the process then we will make an appointment with Peds Surgery.  I don't want this surgery to be an emergency which it will end up being if we wait.  So I'll let you know the progress on that.

After Raymond's appointment we had a little extra time before we had to rush off to get Isabella from school.  I decided to take Raymond and Lily to the chocolate factory.  They both loved the ride.  They have been on it before but I think they are both able to better understand it now.  Raymond especially liked the singing cows.  There was a whole lot of dancing going on in our car. 

Here are two pictures from on the ride.  I didn't take many because my camera was about to die from having it on so much at the zoo on Sunday.    

 

While we were at the chocolate factory, there was also a bus full of woman from The First Baptist Church which is in Evansville, Louisiana.  They were on a bus trip to Hershey.  So anyone who knows Raymond even a little bit, knows where this story is going before I even tell it.  These ladies where all over Raymond and Lily, but especially Raymond.  Imagine for a moment if you will, in your best Southern drawl, a dozen ladies saying things like, "They are dolls!", "Your children are so well behaved." and my personal favorite, "We love the babies with Down Syndrome.  They are such a blessing."

 

I think I'm going to move to some small town in Georgia.  I will drink a mint julep everyday at noon to chase my piece of pecan pie.  I'm going to wear a big obnoxious hat and start to say things like, "I do declare!" 

Yes.  It's settled.  I'm moving south.

 

***

 

I don't have all the therapy report papers for this week.  Some of the therapists still owe them to me.  So for the time being, here are two.

"We worked on words and gestures - through session - word "o" open - blue dough - playdoh - actions - brush teeth - put on shoes - open book - brush hair - worked on my turn - used gestures - nice transitions between activities."

-Stacy, Special Instruction

09/18/2012

"Raymond said "bubble" and signed "play" when I arrived.  He imitated "key" and "turn-turn".  Used gesture ques to help him put shapes in - He needed some extra prompting at times but sometimes followed easily.

Race track - He completed Ready..... with "set - go!"

Practiced signing animals - Lion - Raymond imitated and "growled".  He also imitated giraffe sign."

-Kristen, Speech Therapist

09/20/12

 

Until Next Time!

Lots of Love,



Philadelphia Zoo

On Sunday, the Philadelphia Zoo was hosting a Down Syndrome Awareness Day.  The event benefited the T21 Club of the Delaware Valley.  We took the kids, who were all very excited to see the animals.  The weather was perfect!  

 

 

Grammy went too!

 

 

Lily thought this tortoise eating grass was so funny. 

She kept laughing when it would chomp on the grass.

Inside the Peacock Pavilion, there were activities, snacks and vendor's for the families specifically there for the Down Syndrome Awareness Day.

 

Isabella got her face painted.  She was thrilled!

 



 

When we left the pavilion there was a virtual parade of peacocks walking by.

Have I ever mentioned that I don't like birds?

 

 

ROAR!!!

(That's what Raymond said)

 

Lily kept blowing kisses to all the animals.  She is SOOOO cute!

 

Raymond's favorite animal by far was the giraffe.  He kept signing "giraffe".

 

 

Lily enjoyed watching the giraffe too.

 

My Girls

 

Silly Face!!!

 

Everyone had such a nice day at the zoo.  By the time we got to the car, the kids were exhausted.  They all fell asleep on the way home.

 

Thank you to the Philadelphia Zoo for hosting an event to raise more awareness for people with Down Syndrome.  These efforts make all the difference in the long run.

 

Until Next Time!

Lots of Love,



Special Olympics Address

I know people have very mixed emotions about Sarah Palin.  Regardless of whatever your feelings of her are, I think this video is worth watching.  It is her 2009 Address for the Special Olympics.  I remember watching it in 2009 not too long after Raymond was born and at that time really relating to what she was saying.

Until Next Time!
Lots of Love,

Change the World...

Until Next Time!

Lots of Love,

Weekly Therapy Update & More

Hey Everyone!

Sorry there hasn't been much personal stuff posted on the blog lately.  We've been so busy that I just don't know where the time went.  Last Friday we went to the annual Chili Pepper Festival with Grammy.  We tasted some goodies and bought some to bring home. 

 

 

Raymond enjoyed looking at the horses that were taking people back and forth to the farm.  I wish I had a picture of his face when he first saw them.  It was so cute!

 

Lily slept most of the time but woke up for the last ten minutes.  She also really enjoyed the sausage sandwich that Grammy bought her for lunch.  Lily gets her love of sausage from the Scheks side : )

 

Earlier this week while Isabella was in school, Raymond, Lily and I went to visit my friend Drea.  She lives on a tree farm in New Ringold.  It is beautiful there!  We went for a walk to the pond to see the ducks and geese.

 

 

Once Lily saw the geese, she took off!  Drea actually had a hard time keeping up with her.

 

I couldn't get Raymond to take his eyes off the pond for a picture.

Finally he turned my way.

 

Yesterday, I had my meeting with the Intermediate Unit about Raymond's transition.  It went well.  Both the IU and I were happy with the outcome.  I'll have more to update you on with this situation in the near future.  I'm looking forward to this next step in Raymond's development.  Exciting things are coming for our little man.

 

 

Here are the therapy updates for Raymond:



"Raymond had to be woken up before therapy today.  He slowly warmed up to the session but was not his usual active self.  Raymond did a lot of ring-sit position today with soles of his feet together which he has not been doing.  He practiced playing in long sitting position on the floor sitting in right and left side-sit and heel-sit which he tolerated only briefly.  Raymond mainly practiced keeping his stability and balance while pulling the balls off the Velcro target.  He fell 2 times but then figured out how to squat and bend slightly forward to prevent himself from losing his balance."

-Lisa, Physical Therapist

09/11/2012

 

 

"Raymond was finishing his tube feed when I came today.  We started the session with sitting positions.  Raymond has regressed in this area using a tight ring-sit or squat with his butt on the floor as his primary sitting position.  He worked on v-sit, 1/2 ring-sit, kneeling and heel-sit position.  Attempted scooter play outside today, however, Raymond refused to be outside."

-Lisa, Physical Therapist

09/12/2012

 

 

 

Also, September is Childhood Cancer Awareness Month.  This is dedicated to my sweet Raymond and all his little friends who are suffering and couping with cancer.  Say a prayer tonight for all the children affected and their families.  



 

 

Until Next Time!

Lots of Love,