To the BEST Daddy and Husband EVER!!!

We LOVE you with all our hearts!!!

XOXO

Erica, Isabella, Raymond and Lily

Weekly Therapy Update

"Raymond had a really good session today despite the heat!  Raymond practiced:

1) Ball activities for trunk strength in sit on ball

2) "Ring-around-the-rosie" to work on 1/2 kneel to stand with slight hand held support

3) "Head, shoulders, knees and toes" for leg strength and balance

4) Raymond side-sat placing himself in this position 2 times independently today

5) Wheelbarrow walking 10 feet"

-Lisa, Physical Therapist

06/11/12

"Raymond was very quiet and sleepy today.  We practiced:

1) 1/2 kneel into stand with help while playing "Ring-around-the-rosie"

2) Side-sitting with more independence

3) Trunk strengthening on exercise ball

4) Jumping Jack's"

-Lisa, Physical Therapist
06/12/12

"Raymond was ready to play today.  He said "close" spontaneously closing the door. 

Worked on practicing signs for animals - Raymond imitated bird and cat; physically prompted dog, horse

Worked on picture exchange - He needed hand over hand to give the pictures

Bubbles - Raymond said "blow" spontaneously"

-Kristen, Speech Therapist
06/14/12

Until Next Time!

Lots of Love,

Light: Installations by Bruce Munro

Last Thursday we went to Longwood Gardens for a members only preview of Light: Installations by Bruce Munro.  We were all really looking forward to it.  We've seen people setting up for it the last few times we were there.

In anticipation, Isabella wanted to paint her nails.  Lily also wanted her toe nails painted.  She was so thrilled.  When Daddy got home, Lily screeched and pointed to her toes.  What a little cutie!

It wasn't quite dark when we arrived.  We walked around a while and discovered some very cool things.

Daddy spotted a lot of bullfrog tadpoles in this water.  We quickly found out why.  He and Isabella counted 15 bullfrogs under and around the tall grass and water plants.  They both thought that was very cool. 

Raymond took this picture of Lily.

Raymond walked around for a while but once it got dark he had a really hard time walking.  I'll explain.  Several things affect the body's equilibrium.  Joints, ear's, vision, and temperature are a few examples.  Those examples are all things that specifically play a factor into Raymond's balance.  Raymond has hearing loss, "floppy" joints and is very sensitive to heat.  He relies heavily on his vision for his balance.  Once it got dark, and Raymond was unable to see as well, his main source for balance was thrown off.

I'm posting this picture because it cracks me up.  NOT at all flattering of either of us...but funny. 

Glowing rain drops

These displays kept changing colors.

The lily exhibit is open Grandma!

Isabella really likes the carnivorous plants.  She and Daddy enjoy looking at them together.

I'm glad Lily didn't notice these banana's in the conservatory.  She would have wanted one!

Raymond was so exhausted by the end of the night.

I wasn't really able to play around with my camera settings while we were at Longwood Gardens to try and get better pictures of the displays.  I don't have a fancy camera by any means, but it does have a lot of different settings, most of which I've never used.  Here are two pictures I took from the Longwood Gardens website to show you the lite displays a little better.

We had a great time and hope to get back again before the exhibit is over.

On a side note, the weather has been pretty nice for a while now.  Sadie has been terribly anti-social because all she wants to do is sunbath out back and patrol the yard.

In my next life, I want to come back as a dog!

Until Next Time!

Lots of Love,

Weekly Therapy Update

"Raymond was a little testy today!  He practiced:

-Side Sitting

-Kneeling

-1/2 Kneel into standing

-Step on/off curb

-Walk outside and stepping on/off a variety of surfaces"

-Lisa, Physical Therapist

06/07/2012

"We worked on word board and gestures.  Animal sounds - Moo, Baa.  Words - Cloud, Baa, Hat.  Matching Skills with Colors."

-Stacey, Special Instruction

06/07/2012

"Raymond was more able to sit for each activity today (he had his feeding tube in : ) ). 

Characters - Raymond said "One, Two..." and finished Ready, Set w/ GO! and "Whee".

Helped Raymond point to face parts for Monster Puppet - Language Bombardment.

Doors - Raymond labeled dog (woof), cat, bird.

Worked on attention - sharing to put pieces in puzzle."

-Kristen, Speech Therapy

06/07/2012

Until Next Time!

Lots of Love,

Catholic Chruch To Lift Ban On Boy Taking Holy Communion Because He Has Down Syndrome

from The Daily Mail by Chris Brooke:

When Denum Ellarby walked down the aisle with his classmates to take Holy Communion for the first time his parents felt a mixture of pride and relief.

For the family have had to battle what they regarded as ‘cruel discrimination’ by the Catholic Church to ensure their eight-year-old son with Down’s Syndrome could take part in the important First Communion ceremony.

Until the Daily Mail highlighted his plight in January the local priest, backed by the diocese, was refusing to allow him to take part as he would not understand the preparation classes or ‘enjoy participation in Mass.’

His mother Clare Ellarby believed his disability was responsible for the church’s refusal to accept him and collected a 400 signature petition in support of Denum from the local community.

But in the wake of the bad publicity the church had a change of heart.

At a meeting with the parish priest Father Patrick Mungovin and the boy’s headteacher at his Roman Catholic primary school, special arrangements were agreed for Denum to be prepared for First Communion.

Mrs Ellarby had not been going to Mass with Denum because she thought the hour-long service was too much for him, but she started taking him to church each Sunday to persuade the priest to accept him.

Although he was not allowed to join his classmates in their monthly preparation sessions, he was given his own private weekly religious tuition by a member of the church support staff.

Despite all this Denum’s parents remained unsure of what would happen until a week ago when the priest told them he would be allowed to join his school friends in the communion ceremony.

‘I am very happy they have allowed him to take communion after all, but they have made him do more than most other people,’ said Mrs Ellarby, 31.

‘I think they shouldn’t have done what they did in the first place and if it wasn’t for the Daily Mail and the media interest he would not have been taking part at all. 'The church, quite rightly, came in for a lot of criticism. I think they have got a way to go before properly accepting children like Denum and other people with disabilities.’

Mrs Ellarby said four generations of her family had worshipped at St Mary of the Angels Church in Batley, West Yorkshire, where Denum was baptised and where she had taken her First Communion as a child.

She and her husband Darren, 37, a property developer, said she expected her local church would be ‘flexible’ in their approach to Denum being prepared for the ceremony and were shocked at the parish priest’s stance.

‘I am really glad that Father Patrick changed his mind and has made this possible,’ she said.

After previously making his first confession, Denum did what was required on Saturday when he took his First Communion in front of dozens of friends and relatives.

‘It was a lovely service and I am so glad we fought for Denum to be treated like anyone else,’ said Mrs Ellarby.

Unfortunately the church has still not completely learnt from the experience. Three weeks ago church officials held a First Communion party for the classmates who had been prepared together, but Denum did not receive an invitation.

The church always denied ‘banning’ Denum. A spokesman for the diocese refused to comment on Denum’s situation, but said the church wanted ‘to thank all those people both young and old who have shown the courage to come forward, take part in the preparations and so take this step in Faith.’

Until Next Time!
Lots of Love, 

Coventry Ends Deal to Cover Sequenom's Down Syndrome Test

from Reuters:

"Genetic analysis products maker Sequenom Inc said insurer Coventry Health Care Inc terminated an agreement to provide coverage for its prenatal test to detect certain chromosomal abnormalities including Down Syndrome.

Coventry had agreed to provide coverage to its 2.2 million members for Sequenom's MaterniT21 PLUS testing service, which needs only the mother's blood to detect chromosomal abnormality, from July 1. Sequenom said on Thursday that Coventry terminated the agreement without citing any cause, effective August 31.

Sequenom shares fell 12 percent to $4.22 in after-market trade. They closed at $4.77 on Thursday on the Nasdaq."

If you are not sure what this article is referring to, let me explain.  There is a new blood test that will detect Down Syndrome in babies while still in utero with a 99.1% accuracy.  No other testing is required.  This has been called the "cure" for Down Syndrome because it gives parent's plenty of time to terminate the pregnancy.  Currently, 92% of parents who find out their child will have Down Syndrome (normally via amniocentesis), abort.  That is a crazy number!!! 
Now, image what that percentage will be with a simple blood test.

Until Next Time.

Lots of Love,

Weekly Therapy Update & More...

This week has been light on therapy with the holiday on Monday.  We've also had a situation with Raymond's one therapist, Stacey, that up until this point, I haven't shared.  I was unsure of her future with our family but we've finally made a decision concerning it this week.  I've also decided to share the incident with all of you. 

While I was in West Virginia with my brother and nephew, Chris and Ellie took turns watching the kids.  That Thursday Ellie was here and Raymond was scheduled to have therapy with Stacey.  Stacey was running late (as usual) and Ellie wasn't sure if she was coming.  So finally Stacey arrived at our house, almost two hours late, with a cardboard box in tow.  Inside the box was a tiny kitten she found on the side of the road.  After Stacey showed it to the kids, Ellie told her she could put it in the bathroom.  So she did and without washing her hands, continued working with Raymond.  So let me list some things about the situation that upset Chris and me.

• Why in the world would she stop to look into a cardboard box on the side of the road when she was already so late?
• She didn't wash her hands
• The cat could have been placed in our enclosed breezeway
• Feline Leukemia (we have two other cats and a dog who could get very sick)
• Feline Aids
• Rabies
• Fleas
• Lice
• Bacteria
• Worms
• Cat Scratch Fever (Yes, that's actually a real thing...not just a Ted Nugent song)
• She knows Raymond is medically fragile - that's one of reasons he still gets home-based therapy.
• Raymond has a G-tube.  It is an open wound which means the area is very susceptible to infection.
• We feel that Ellie should have never been put into that situation.
• Seriously, putting Raymond in this situation could have posed fatal if he were to get an infection - his system cannot fight things off like other children. 
• Unprofessional!
• IT NEVER CROSSED HER MIND THAT IT WAS A BAD IDEA TO BRING AN UN VACCINATED KITTEN INTO OUR HOUSE!!!

We've been stewing over those things/situations/scenarios, along with about 400 others, these past two weeks.  We were both very angry.  I spoke with Stacey the next day and told her I didn't want her to see Raymond until further notice.  She seemed unsure as to the reason why at first, and then it clicked.  She knew what she did was wrong.  A little too late if you ask me.  She stated that she had no excuse for her actions.  I was NOT happy.  (It didn't help that I was sitting in the hospital with my sick brother.)  So, in that conversation, I made her cry.  She had never seen (or heard I guess since we were on the phone) that side of me.  I consider myself a very nice and upbeat person but when it comes to any of our children, I will sting when I strike.  I'm protective of all of them but fiercely so over Raymond.  I didn't yell at her but I was extremely firm.  I asked her what in the world she was thinking, and she had no response. 

Shortly after that conversation, I called Stacey's boss, Carla, to discuss the situation with her.  She informed that she would get the reports from the ASPCA about the kitten.  She called a few days later and said the kitten had a clean bill of health which really eased our minds.  So then we had to decide whether or not to allow her to continue to see Raymond.  Chris said no.  I, on the other hand, was unsure if that was the right thing to do.  Stacey is very good with Raymond and he does love her.  So I thought about it foe a while longer.  On Tuesday, I called Carla and told her Stacey could start to see Raymond again with the stipulation that she start getting to our house on time.  I had let her tardiness slide up until this point because of her connection with Raymond.  Being late is one of my biggest pet peeves with people.  I think it is so rude to tell someone you'll be there at one time and show up an hour or two late.  This was a regular thing with Stacey.  She was getting to our house when Raymond should have been taking a nap.  It was throwing his entire schedule off.  Hopefully she is able to improve her time management.  I'm hopeful that sometime next year Raymond will be able to go and participate at the Berks County Intermediate Unit.  This will be a major transition for him.  I don't really want to switch Behavioral Specialist now and then again in a year.  The fewer transitions for Raymond the better.  Major changes like that can be so hard for him.  He gets attached easily.  I don't want him to have a major set back.    

Stacey will continue with Raymond next week.

What would you have done?  Do you think we made the right decision?

Here are the two therapy updates from this week...

"Raymond had a great session with me today despite the very hot temperature.  It was too hot to go outside today!  In the house he practiced right and left side sit seated between my legs while playing with toys to my right and left sides.  He worked on kneeling (supported) to play with the  hammer/ball toy.  Raymond raises to stand through 1/2 kneel with less waist support and with better form.  He stood on Tuesday 1 time out of 6 trials to reach for a ring.  Raymond is doing a better job keeping his legs out in front of him (verses a tight ring sit) while playing independently.  He steps on/off the small stool with ease."

-Lisa, Physical Therapist

05/29/2012

"Raymond was quiet today but played nicely and used many signs.  He enjoyed drawing with markers and imitated my gestures with sounds "ee", "oh" and "oo".

House and Keys - He imitated "ow" with house.  Used sign language to ask "Where are keys?"  and language bombardment.

Raymond spontaneously signed "cat", "bird" and said "woof" for dog.

Racetrack - He said "1,2,3 GO!""

-Kristen, Speech Therapist

05/31/2012

Until Next Time!
Lots of Love,