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

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

Wednesday, February 29, 2012

Update

Just wanted to let everyone know that all three kiddo's are sick.  Our entire house smells like puke and diarrhea!  It seems like everyone except Raymond is starting to feel better.  So it might be a few more days until I get back to the blog.  Hope everyone else is healthy and well!
Until Next Time!
Lots of Love,

Monday, February 27, 2012

from The Phinsider:
Miami Dolphins Hall of Fame quarterback Dan Marino, and the Dan Marino Foundation, are planning a downtown Fort Lauderdale college for developmentally disabled students, according to a Sun Sentinel report. The college is looking to give student the real-world experiences necessary to prepare young adults with disabilities to make it on their own.
Marino's son, Michael, was diagnosed with autism in 1992 when he was two-years-old. Marino then founded the Dan Marino Foundation, focused on raising money for the developmentally challenged. Now, the foundation is looking to build the Dan Marino Foundation Vocational College, a first of its kind; post grade school institution for those with developmental challenges.
"We're here to teach the skills, provide the supports and reduce the supports as the program goes along," said Kerri Parmelee, the foundation's transition program director.
"We wanted to create something, much like a two-year community college, but it's totally focused on vocational," said Mary Partin, the foundation's chief executive officer.
The college would be located on the 400 block of North Andrews Avenue, and would utilize nearby apartments for students. The enrollment would cater to students from age 18 to 28, all of whom are diagnosed with autism, Asperger's syndrome, Down Syndrome, or other developmental disabilities. The school is aiming to open in the fall of 2013, with a student body of around 60 for the first semester. The school anticipates an annual tuition of around $7500 for the two-year program, and would be divided into trimesters.
Currently, federal and state public services for persons with developmental challenges are only available until age 22 - the Dan Marino Foundation Vocational School would assist would be open to students who were too old to receive further services from the state or federal governments, whether they graduated high school or not. The foundation plans on continuing the social and job skill development of these students.
The State of Florida has begun working on legislation to add the school to the State's higher education system, with the State Senate's high education committee already passing the bill. In the mean time, the foundation is prepared to run as a private institution if they cannot get the designation.
Until Next Time!
Lots of Love,

Saturday, February 25, 2012

Kay McGee 1920-2012

Kathryn 'Kay' McGee, Founder of National Association for Down Syndrome
It's with a heavy heart that I share this with you.

-Article Courtesy of the Chicago Tribune

When her daughter Tricia was born with Down syndrome in 1960, Kathryn "Kay" McGee refused to accept the conventional wisdom back then that the best course was to put the child in an institution.
"Medical advice was not to bring the baby home," said Mrs. McGee's son Michael.
Instead, Mrs. McGee took her daughter home and started the National Association for Down Syndrome.

"She said, 'This is not good enough,'" said Sheila Hebein, recently retired after 30 years as the group's executive director. "She gathered a group of like-minded parents and medical professionals to maximize the possibilities for our children."

Mrs. McGee, 91, died of natural causes Thursday, Feb. 16, in her River Forest home, her son said. She had lived in River Forest for more than 50 years.

Born Kathryn Greene, she grew up in Chicago's Lincoln Park neighborhood. She graduated from what is now Chicago State University and taught briefly in Chicago Public Schools.

She married Martin McGee in 1943. By the late 1950s, the couple, then with three children, moved to River Forest. The birth of her daughter led her to start the association in her home.

"It takes your breath away when you first get a diagnosis of Down syndrome," said Hebein, who has a son who was born with the condition.

Mrs. McGee and her husband were determined to explore every possibility for their child and for others with the syndrome, Hebein said.

"Kay reached out. They had meetings in their home," Hebein said. "She had such energy and was determined that Tricia and other children were going to have a good life."

Her other children also helped. "We were warned everybody would have to pitch in," her son said.
As a teenager, Tricia sometimes answered the phone line reserved for calls from new parents of Down syndrome children and took messages. Those parents were often surprised and heartened when Mrs. McGee told them that her daughter with Down syndrome had answered their call.

Mrs. McGee recruited nurses and other hospital personnel to pass along the association's phone number to parents of children born with the condition, along with information about options beyond institutions, her son said.

Mrs. McGee's challenge was daunting, Hebein said. In those days, educators and others understood little about Down syndrome or the abilities of the children, she said.

I also wanted to share something else with you.  Some of you may know that Joe Paterno was a very strong supporter of the Special Olympics.  After his death, his family asked that any contributions be sent to the Special Olympics along with THON (and several other charities).  The Special Olympics received more than $80,000 in contributions from this request.  Regardless of your feelings about what happened at Penn State,  you have to admit, that is wonderful.  The Special Olympics will be able to utilize this large sum of money to do so much good.  Hopefully one day Raymond will be able to participate in our local chapter.  My sweet boy : )

Until Next Time!
Lots of Love,  

Thursday, February 23, 2012

Jesuit Academy

Our friend Dave has been featured in an article about his school, Jesuit Academy. It's a wonderful school on Chicago's West Side.  Take a minute to read or listen to the article. 

Until Next Time!
Lots of Love,

Monday, February 20, 2012

It Feels Like Spring!

I'm still here.  We've been so busy!  We will continue to be busy in the upcoming weeks.  I have a lot to share with you.  Two weeks ago I had an IEP (individualized education plan) meeting for Raymond.  Raymond, at that time, was in the 0-3 therapy program provided by the county.  On the cusp of his third birthday, we needed to talk about the transition into the 3-5 program.  For most children, this means going to a center for classroom based therapy.  Raymond however, will continue to receive services at home because of his health conditions.  This also means new therapists - something that I'm not thrilled about.  Change is good, but Raymond is making great progress with his one therapist, Stacey.  He's making good progress with all his therapists, but especially so with Stacey.  At the meeting, I told the service coordinator that I would be willing to get a new physical therapist, occupational therapist and speech therapist but I will not give up Stacey.  I want her to continue with Raymond.  I had a conversation prior to the meeting with Stacey about staying on with Raymond.  I wanted to make sure she was on board and able to handle what was to come in Raymond's therapy regiment.  As the behavioral specialist, she will be key in this transition.  (She tends to be passive-aggressive.)  I feel confident in my conversation with her that she can.  The I.U. is working with me to get this plan in place.  I disagree with the amount of services they are offering Raymond, so for the time being, he will continue with his current therapist until we come to an agreement.  I'm not willing to bend, so it might be awhile. 
On February 11, Lily turned one!!!!  On February 15, Raymond turned three!!!!  Can you believe that???  We had a joint Curious George themed birthday party for them. 
It was lots of fun. 
Lauren, Isabella and Adrienne
Lauren and Lily
(Lauren is Lily's God-mother's daughter)
      

Grandma and Grandpa even came from North Carolina.  Grandpa and Lily have the same birthday : )
Isabella picked out a birthday present for Raymond and Lily.  She bought Raymond a little piano.
She bought Lily these pop-beads.

***
I bought Greek-yogurt popsicles at BJ's the other day.  Lily really likes them!
Lily has also discovered that she can climb up on the sofa all by herself.  Yikes!
She's so proud of herself!
***
Last week we met Raymond's new neurologist, Dr. Zinger.  Do your best Dracula impersonation and that is exactly what she sounds like.  I liked her.  It will take Raymond awhile to get used to her.  Raymond really liked Dr. Giordano but he left Hershey for a better opportunity in New Hampshire.  He and Raymond knew what to expect from each other.  One thing I really liked about Dr. Zinger is that she asked me if we had local support from a Down Syndrome support group.  We do (EPDSC).  More doctor's (in my opinion) should be asking those types of questions.  Whether the child has Down Syndrome, Cerebral Palsy, Autism, etc..  It shows they care and want better services for their patients. 
Isabella went to the dentist last week.  She has 3 "dents" in her teeth (a.k.a. cavities).  Ugh.  She has to be watched when she brushes her teeth or she only brushes the front.  Hopefully her teeth aren't like Chris'.  His teeth are very soft.  I've never had a cavity.  Hopefully with a little more help brushing properly, when her adult teeth come in, she won't have any problems. 
Today we took Raymond back to see Dr. Williams at the feeding clinic.  Dr. Williams said he was "stunned" and "amazed" at Raymond's progress.  He also said "Raymond's progress is a testament to how hard" we've been working with him.  It was great to hear!  Raymond is really doing fantastic.  He's graduated onto the next step.  Instead of a nuk brush, we will be working with a spoon.  It's very exciting progress.  Hopefully Raymond will be able to swallow about an ounce of food by mouth a day.  Since we have been making such good progress at home, we are going to continue to work with Raymond at home.  Dr. Williams said he doesn't want to change things - like start an inpatient program - when things are going so well.  Yay Raymond!!!
Tomorrow Raymond and Lily have their annual check-ups.  Lily is really starting to get a silly little personality.  She's a character!
Today is such a nice day outside.  I have the kitchen window open and it's so nice having fresh air run through the house.  I'm getting spring fever!

Until Next Time!
Lots of Love, 

Friday, February 10, 2012

These are both so cute that I wanted to share them with you.



The next few days are going to be very busy for us.  I'll have lots to share come Monday.
Until Next Time!
Lots of Love,

Thursday, February 9, 2012

Cell Phones for Autism

 Recently, Chris an I got new cell phones.  We seem to have so many old cell phones sitting around.  I used to donate them to the Women In Crisis Center but we don't live close to them anymore.  I came across an organization that takes your old cell phones, recycles them, and part of the money goes to Autism Speaks and other local organizations.  They are based out of Coral Springs, Florida. So I printed out a free FedEx label and off they went.  If you or someone you know is looking to get rid of an old cell phone, don't throw them away...donate!
Until Next Time!
Lots of Love,

Tuesday, February 7, 2012

Feeding Tube Awareness Week


This week happens to be Feeding Tube Awareness Week.  Most of you who read this blog know that Raymond has a feeding tube.  It was put in on March 19, 2010.  I can't believe it's been almost two years!  Before Raymond had a G-tube, he had an NG tube.  The difference is that the NG tube is a small tube inserted through the nostril and fed down into his belly.  The G-tube is permanently placed in the stomach.  We were happy to get rid of the NG tube because Raymond pulled it out all the time.  The feeding tube really improved Raymond's quality of life.  He stopped getting aspiration phenomena every month and started to gain weight.  Without the NG and G-tubes, Raymond would have never survived.  I strongly believe that.  

We get feeding and oxygen supplies delivered to our house once a month.  Often, we are sent the wrong supplies.  Chris and I hate to throw the items out but once it gets to us, the supply company won't take it back (even though the item's are unopened).  I've been trying to find somewhere to donate them.  I've called dozens of places and looked at so many websites.  All the places I've come across don't take G-tube supplies.  Finally, after over a year of looking, I've found somewhere to donate - G-PACT.  The kicker is, one of the locations is relatively local in Harleysville, PA.  I'm SO glad I came across them.

Until Next Time!
Lots Of Love, 

Friday, February 3, 2012

I hope everyone is having a great week!  We've had a very busy week thus far.  On Monday morning I discovered that Raymond's G-tube had come out in the middle of the night. That's happened plenty of times before but this time the G-tube had been out for something like 10 hours. I wasn't able to get the tube back in myself. Ugh. I called Raymond's GI doctor and surgeon but both offices instructed us to go to the emergency room. Raymond was in the middle of physical therapy and the guy was on the way to measure our yard for our fence. So I called Chris and asked what he wanted me to do. Cancel the fence guy (who was already on the way) or did he want to come home. Chris decided to come home and by the time he got here therapy was ending and the fence guy was just finishing up. We headed out to Hershey, hoping that the Er wasn't really busy. They took Raymond pretty quickly and just that quick Raymond became very upset. For over three hours, Raymond was uncontrollable. He screamed and thrashed around continuously. It was exhausting for everyone. Thank goodness the nurses and doctors are so patient with him. Most of them recognize him when we arrive.
Tuesday was also a busy day.  Isabella had an appointment at the podiatrist office.  She complains a lot about her feet.  Much more then a 5 year old should.  She does have insoles for her shoes but they haven't seemed to be helping.  Dr. Wolfe said her feet are pretty severe for how small she is.  Isabella is flat footed and her ankles are really turned in.  We need to have customer insoles made and it will take awhile to correct the problem.  Dr. Wolfe also said he doesn't think it can be totally repaired but we can make her much more comfortable.  After that appointment, we headed to another.  This one was much more fun...Sweet 'N' Sassy!!!

She was so excited!  At the end of the day Isabella told me she had such "a fun and fancy day".
After Sweet 'N' Sassy, we went to Grammy's house for the evening.
Raymond and Lily liked her singing and dancing snowman. 
  I, however, am still dreaming of the song it played : )
 
This upcoming week will be a busy one as well.  Next Saturday is Lily's first birthday!!!  Wow!!!  We are having a birthday party for her and Raymond that day.  Raymond's 3rd birthday is on the 15th.  His birthday's always make me a little emotional (in a happy way).  This month is also busy with appointments. 
So make sure to check back for more updates.  I'll have a lot to share.
 
Until Next Time! 
Lots of Love,