For Isabella...

Weekly Therapy Update

Two of Raymond's therapist were on vacation this week.  Stacey was the only one who Raymond worked with.  Her notes are always very disjointed.  Hopefully you can make some sense out of them.

"Worked on animal sounds w/gestures - very attentive.

Worked on my turn w/gestures - nice exchange - with gestures of my turn."

-Stacy, Special Instruction

06/25/12

"Matching color/color

Matching Animal to sound

What is what?

Matching 1 item of clothing

Example: Sock to sock - shoe to shoe

Worked on roll - ready, set, roll

Nice wait/pause exchange"

-Stacy, Special Instruction

06/26/12

Mommy's Note : Raymond also said dinosaur today! : )

Until Next Time!

Lots of Love,

Teacher Spotlight

I LOVE THIS!!!

Extremely inspiring!

Until Next Time!

Lots of Love,

Fashion

My sweet Isabella is obsessed with fashion.  All she seems to ever talk about is becoming a fashion designer, having fashions shows, drawing new "inspirations" and going to Paris.  She even called Grandpa and asked him if he would take her to Paris one day when she is older.  When he asked why, she told him that Paris is where fashion designers go.

I googled "Paris Fashion" and these were some of Isabella's favorite pictures.

She told me she likes the outfit but not the hair in this picture.

If you ask Isabella what she likes to design, she will tell you cocktail dresses.  She will also tell you she wants to go to Parson's when she's older.

I'm not sure were her love of fashion comes from.  I do like to watch Project Runway and Isabella is glued to the TV when it's on.  Chris also found the Chic Channel on Hulu and has been watching fashion shows with her on the weekends when I'm at work.  (What a nice Daddy!)

I've also showed Isabella some of the sites to see in Paris.  These are her favorites...

Hey Grandpa!  Isabella is telling EVERYONE that you are taking her to Paris.

When she wins her first CFDA award, she'll be sure to thank you for all her Paris inspiration. 

But, no pressure!

Daddy found this at Ross for $2.99.  We hung it on her bedroom door.

We also found the Eiffle Tower! I shouldn't say we because it was Isabella who found it. I walked right past it.  She all but yelled in the middle of Target.  She asked if she could get it for on her dresser.  Luckily for me it was on clearence for $4.98 because I would have felt bad saying no. 

Until Next Time!

Lots of Love,

Easter Seals & Jack!

This is our friend's son, Jack.  He's an awesome little guy and was featured in an article about Easter Seals.

From mcall.com

Easter Seals Walk Helps Children with Disabilities, like Jack

When Tabatha Szivos gave birth to her baby boy, Jack, three years ago, all was right in her world. She and her husband, Ryan, both Lehigh Valley natives, lived in Florida at the time and were excited about finally starting their family.

Those first few months were bliss. But when Jack had a seizure at 4 months old, the Szivos’ world changed forever. Jack underwent a barrage of medical tests to determine the cause of his seizures. Finally, an MRI revealed he has cerebral palsy.

The disease that is characterized by loss or impairment of motor function is caused by either brain injury or abnormal development of the brain before, during or immediate following birth. It affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. It can also impact fine motor skills, gross motor skills and oromotor functioning. Each case is unique to the individual, ranging from total paralysis to slight impairment.

And, as the Szivos learned, symptoms might not always be apparent at birth. Jack’s cerebral palsy affects every muscle group in his body and his muscle tone is mixed -- very low from his legs down and so tight in his arms and shoulders that he needs Botox injections to relax the rigidity.

Tabatha says Jack’s doctors still suspect he has “some sort of muscular neuron disease” in addition to cerebral palsy. But extensive testing has not yet determined what that disease is. “We like to call him our conundrum. He’s been poked, prodded and cut open. We may end up naming a disease after him.”

The Szivos moved back to the Lehigh Valley when Jack was 9 months old and settled in Breinigsville. Jack is now 3. And although he cannot talk, sit up by himself or crawl, he has made significant developmental progress. Through Easter Seals, he is receiving speech and swallow therapy. His foods must be pureed and his liquids, thickened, to keep him from aspirating. And he’s learning to chew, but needs constant reinforcement therapy or he regresses. He’s learning to communicate. He now can say “mama” and make pucker sounds to give kisses or indicate when he’s thirsty. And he uses his eyes to make choices between two objects.

He has friends at preschool at the Parkland School District Troxell Building. He loves music and plays with toys that are activated with switches. His favorite new toy is an iPad that he operates with his fists.

When they moved back to the area, Tabatha and Ryan, grateful for the helpful services Easter Seals provides, started raising money for the organization through its annual fundraiser, Walk With Me Lehigh Valley. They are so committed that each year at Jack’s birthday, they ask family and friends that their gifts be donations to Easter Seals.

The 2012 Walk With Me Lehigh Valley begins at 10:30 a.m. June 23 at the Malcom Gross Rose Gardens in Allentown. The one-half-mile and 1-mile family fun walks begin at 11 a.m. The $20 fee includes a sports sack, T-shirt and lunch. There will be fun activities for children, special mascot appearances (including Iron Pigs’ Ferrous and Max M. Call), Harley Hill Alpacas and therapy dogs.

This year, Jack is a Lehigh Valley ambassador. And his team, Jack Attack, hopes to raise at least $2,000. You can help by walking individually or joining a team. Or you can make a donation to Easter Seals or directly to Jack’s team at www.walkwithme.org/allentown. Info: 610-289-0110, ext. 202.

Until Next Time!

Lots of Love,

Weekly Therapy Update & More

Yesterday I took Isabella for her appointment with the new dentist.  She seems like a nice woman.  Very soft spoken.  We had a consultation with her about Isabella's cavities.  Isabella has inherited her Daddy and Pop-Pops teeth.  They are very soft.  She has had two cavities repaired by her old dentist but her had suggested oral sedation to fix the rest.  Yes.  There are more.  She has 6 more and will have to have one of her back teeth taken out all together.  Maybe two.  The dentist won't know for sure until she gets in there and sees how it is once she removes the other tooth.  Isabella's front teeth are all fine.  It's the back ones that are giving her all the problem's.  The dentist also told me that it is really important for her to floss since all of her cavities are in between her teeth.  I think I'm going to make some type of chart for her for in the bathroom so she doesn't forget any of the steps.  Maybe that will help a little?  It can't hurt, right?  The procedure is scheduled in the hospital for July 18.  Isabella is not a very good patient, so hopefully she doesn't get herself too worked up.

Yesterday I had a heartfelt conversation with Raymond's speech therapist, Kristen.  She is feeling that she is at a standstill with Raymond.  She told me that she feels that she has let Raymond down.  His speech really hasn't improved and she doesn't know where to go next.  I appreciated Kristen's honesty.  I know she felt this way about 8-10 months ago but then they (she and Raymond) seemed to "click" again.  I have noticed lately though, that she has struggled with him.  Kristen doesn't know how to handle or appropriately re-direct him when he gets off task.  It is something that is very frustrating for her.  Especially when she sees his other therapist do it.  So know we need to make a decision together whether or not she continues to work with him.  She is a very good therapist and Raymond does like her but he also needs someone who can be affective with him.  I'll let you know what we decide.  Also, I was contacted by the Berks County Intermediate Unit to start the mediation process since I didn't agree with their plan for Raymond.  That should be interesting.

Wednesday night I met some of my friends at the Wooden Keg.  My friend Linda decided to sing on open mic night. 

Drea & Linda

Matt, Alex (posing as an annoying Asian tourist - his words, not mine) & Renee

Linda

 She did great!!!

Here are the therapy comments from this week:

"Raymond was hooked up to his feed for his session today so session was limited to stationary activities.  Raymond is doing a better job with sitting in a variety of positions.  He tolerated long sit on the floor and right and left side sit for longer periods!  Raymond is even using these positions for independent playing.  Raymond tolerated the ball much better today when I used only small, slower movements vs. the large quick movements."

-Lisa, Physical Therapist

06/19/2012

"Raymond was not himself today-difficult to get him to engage-some words-worked on varies sensory positions and preacademic skills-matching and gestured animal sounds-less impulsivity with throwing."

-Stacey, Special Instruction

06/19/2012

"Raymond practiced a variety of preschool motor activities including:

1) "Ring-around-the-rosie" working on stand through 1/2 kneel

2) Animal imitation - Frog, dinosaur, flamingo and crab

3) Exercise ball - "wheels on the bus" and "walk ol' Joe" for trunk strength

4) Sitting in a variety of positions to play

5) Jumping jacks, jumping over"

-Lisa, Physical Therapist

06/20/2012

"Raymond worked with each activity for a short time.

Potato Head - Good attention.  Raymond pointed to face parts or imitated my gestures to ears and nose.  Completed activity.

Boat - Raymond imitated and later used the lion sign during his own play.  He imitated the giraffe sign one time."

-Kristen, Speech Therapist

06/21/2012



Until Next Time!

Lots of Love,

Busy! Busy!

Summer time is here and you know what that means...corn on the cob!!!

Corn on the cob is Lily's new favorite food.  She had two entire ears and cried when we didn't have anymore to give her.  Chris and I felt so bad.

This week is extremely busy us.  On Monday Raymond had an appointment at the ENT clinic in Hershey.  We had to get up early to go because we were the first appointment of the day.  Miss Lily fell back asleep in the car. 

Notice anything funny in this picture?

We were the only people in the reception area when we arrived.  This is what Raymond did while we waited...

Every time a nurse or doctor was in the hallway, Raymond tried to show them his umbrella. Let me be more specific, female nurses or doctors only.

When we were called back the first thing Raymond had to have done was a hearing test. He was very cooperative. The doctor's assistant sat in the room with us while the test was being preformed and Raymond kept hugging her. It was so funny!

I was then told by another doctor that Raymond hearing is getting worse. She stated that he has moderate to severe hearing loss in both ears. She gave us a prescription and instructed us to put 5 drops in both of Raymond's ears twice a day and come back to see her in 2 months. At that point, they will determine whether or not Raymond needs to have another procedure done to his ears. What concerns her is that she sees no wax in Raymond's ears. If he had wax build up, that would probably explain the continued hearing loss. If there isn't any improvement with the drops, he will need to be fitted for hearing aids immediately.  This isn't the first time we've been told Raymond will need them.

Tuesday, along with two therapy sessions, we had to go get my front tires changed.  There is a train table at CJ's which is helpful.

Raymond played with the train table for awhile and then decided it would be fun to run around like a crazy man.  He laughed and laughed for over an hour and a half.  The guys who work there thought he was funny (thankfully).  They even played a little with him.  Raymond gave the younger guy a big hug around the legs.  He's such a sweet boy!  When I was paying for everything, the older man behind the counter told me he thought I was a good mom : )  That was nice of him to say.

 
After we got home, I put in Elmo in Grouchland for Raymond.

This was the first time he's ever seen it.  He sure does love "Mo"!

Today we have therapy, errands and I'm going to be meeting a friend later this evening.  Tomorrow I have to take my neighbor for a colonoscopy and Isabella has a dentist appointment.  Raymond also has therapy in the morning.  Raymond has therapy again on Friday and I have to go to work.  This week is zipping by!

Until Next Time!

Lots of Love,

Living with Down Syndrome: A Mother's Journey

I watched this and it felt like Kelle was telling my story.  The story of my feelings, fears and uncertainties those first few months with Raymond.  I thought I would share it with you. 

Until Next Time!

Lots of Love,

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,