Weekly Therapy Update and LOTS more!!!

So after a bought in the hospital, Raymond had been feeling better.  He ended up back in the hospital for a few more days after that because he was dehydrated.  He seems to be feeling better but has a very runny nose.  Therapy has started back up for him.  We finally have a new physical therapist and she is wonderful.  She told me she has a brother two years younger then her with Down Syndrome.  I would guess she's somewhere in her 40's, so her brother is around that age.  Next time she comes, I want to ask her specifically how old he is.  She and Raymond have a very good relationship with sparked immediately.  Makes this mama happy : )

 

Raymond also has a new speech therapist because his previous one is out on maternity leave.  She had a healthy baby boy on Monday named Cole.  Congrats to her and her family!

 

We have been working on getting Raymond into the feeding program this summer.  Our insurance company has been not the most cooperative.  They informed us that they pay for in-patient feeding services, recognize Hershey Medical Center's billing codes and will pay on them once submitted.  Here is the problem and scary thing about that.  Last year, the insurance company denied Raymond the feeding services.  This year the say that they pay, but will not give us a pre-approval and will not tell us how much per day they are willing to pay.  Hello?  That is no help what-so-ever.  The feeding clinic cost's approximately $2,000 a day.  We will be there for up to twelve weeks.  Even if the insurance company is willing to pay half, that still leaves us with a $12,000 bill.  That isn't something financially we can handle.  Ugh.  The clinic also can't get him in until July 8th.  That's a month later then we were originally hoping.  If anyone drops out of the program we can go earlier, but without a pre-approval, we won't be going at all.

 

I called the Ronald McDonald House to make out room reservation in hopes we are going to the feeding clinic.  I was annoyed by the time I got off the phone with the guy.  He told me that I would have to check out Friday night and I could check back in on Sunday morning.  Okay.  I understand that we will not be the only people staying there.  But, we will be at the feeding clinic until 6:00 every night.  Then I will have to go back to the house, pack up all our stuff, clean the room and check out...for a day.  Then come back down Sunday, check into a new room, and unload all our stuff again.  This, all with four kids (one a newborn).  I will have a TON of stuff.  I tried explaining this to him but it didn't seem to matter.  It will be a major pain in my rear-end if I have to do that every week.  The lady at the feeding clinic who deals with the insurance told me she will talk to the Ronald McDonald House and see what she can do.  She doesn't want me to have to go through all of that either.  Hopefully we can work something out.

 

Our computer died a few weeks ago also.  We have since got a new one but I'm having a very hard time getting used to it.  It runs on Windows 8 and I don't think it is very user friendly.  I have barely been on the computer at all, to even just check my email, because I don't like the set-up.  I guess I will get used to it in time but until then, stay patient with me because I probably won't blog as much.

 

Because I didn't already have enough to do, I'm now officially a board member for Celebrate Down Syndrome.  I'm excited to be able to help them work towards there goals and make CDS a well-known name.  This group is out of Lancaster.  I've steered away from the Eastern Pennsylvania Down Syndrome Center over the past year or so for personal reasons.  I'm not going to discuss them on here but it is a group that we still support, just not nearly as much.

 

Isabella wrote me this poem:

 

"Your smile is sweet as honey.  You are better than chocolate money.  And you are the perfect love dove of life.  And you brighten my smile every day."

 

Raymond fell asleep on the living room floor and this is what Lily did...

 

She covered him with a scarf and lined up some of their stuffed animals next to him to take a nap too.

 

Everyone has been happy to have warmer weather...

 

 

For Isabella, that means wearing new summer cloths!

 

 

 

Don't forget to check out her shoes!

 

Raymond also has some new summer cloths.  I love this shirt in particular.

 

Isabella and I cut out a dress for her to sew together.  She really likes using her new sewing machine.

 

 

I signed Isabella up for a class at Jo-Anne Fabric's the other weekend.  It was a class to make headbands.  Some parts were a little difficult for her, but for the most part, I thought she did a really good job.

 

 

 

 The finished product!

 

Yes, she put a button in the middle with a skull and crossbones on it.  She LOVES anything to do with Halloween.  It started with the movie, Scooby Doo and the Ghoul School.   Then she saw Hotel Transylvania and watches it all the time.  The latest thing with girls her age and a little older is Monster High.  It's a show about mostly female monster's in high school.  She has two dolls, a DVD, a drawing set and clothing - all Monster High.  She wrote a book the other day about zombies. Oy vey! 

 

After the class we went to Salad Works for lunch.

 

 

Afterwards, we went to a birthday party for a little girl in Isabella's class.  It was at the Leesport Farmer's Market, so we parked at home and walked over.  There were a lot of activities for the kids to do.  We started at the t-shirt table.  I'm glad we did because the more kids that went over, the messier the table got. 

 

 

 

Logan, Isabella and Deja (the birthday girl)

 

Then we headed outside to wait in line to ride the horse.  Isabella, Logan and Violet (Isabella's best friend) were being very silly.

 

Violet's mom told me that she talks about going to Paris all the time with Isabella.  They've decided that Isabella will design the clothing and Violet will design all the accessories.

 

 

 

Last Friday was the Kindergarten music program.  It was packed full of parents and grandparents.  I was really surprised since it was at 9:15 in the morning on a week day.

 

Of coarse, Isabella is standing next to Violet.

 

A video for your enjoyment.  It's a little bumpy at times because I was laughing.

 

 

 

Sign's of spring are everywhere : )

 

 

I planted a pallet garden.  It has two types of lettuce and spinach in it.  Thank you Pinterest for the idea.  I love it!

 

 

It's small but more then I did last year.  I really missed not having a garden at all.  I don't want to go crazy because I can walk over to the farmer's market and buy things at very good prices but I wanted something.  Isabella's flower garden is in full bloom.

 

 

Miss Lily has been working on using the potty.  She likes wearing "princess" pull-ups.  She has only successfully used the potty a handful of times but she does like to sit on it.  Good steps in the right direction!

 

 

A while back Isabella was telling me that she wanted a website named Isabella's Fashion Designs.  I figured that I would start a blog for her that she could post pictures on of her fashions.  It is a work in progress and I will let you know when I update it.  Thus far, she has picked out and chosen every aspect of the blog.  The colors, style, fonts, etc.. 

Check it out!

 

Isabella's Fashion Design's

 

 

Raymond's Therapy Updates for the Week

 

"We have been working on:

Hand Skill Development

• grasp
• hand preference

-Prewriting, left hand for the duration with a 3-4 finger grasp

Prewriting/Coloring

• imitation of strokes, shapes
• simple representations

-Circular motion, vertical lines, dots

Visual Motor

• N/A today

Bilateral Coordination

• stringing beads
• cutting
• 2 handed tasks

 

-Attempted cutting playdoh with spring scissors - interest good - 2-handed tasks today

 

Self-Care

• N/A today

General

• direction following

 

-Needed some visuals, with verbal directions; great attention and sitting today.

 

Sensory Processing/Self Regulation

• N/A today

Motor Development

• N/A today

Other

• N/A today

We worked on these during:

• 1:1

Comments:

- Good session today, increased attention, sitting sharing/turn-taking with sister.  Worked on a variety of fine motor tasks with good participation."

-Becky, Occupational Therapist

05/01/2013

 

"We have been working on:

Classroom Routine

• attending
• following directions

-Raymond needed some prompting in order to follow directions

Pre-Academic

• N/A today

Play

• games/turn taking

-We worked on turn taking today.  Raymond participated with adult facilitation. 

Social Skills

 

-Raymond attended to teacher directed tasks with some prompting.

 

Fine Motor

• N/A today

Gross Motor

• N/A today

Other

• N/A today

 

We worked on these during:

• N/A today

Comments:
- More frustration behavior noted today. *Communication*

-Beth, Special Instruction Therapist

05/02/2013

"We have been working on:

Receptive Language

• Following Directions
• Concepts/vocabulary

- Following 1 step directions, "show me/give me"

Expressive Language

 

• Increase length of utterance

- Modeling 1 & 2 word phrases and signs

Using Functional Language

 

• Request/mand
• Protest
• Comment/label
• Ask/answer questions
• Ask for help
• Verbalizations
• Signs

- Using verbalizations and signs. "Mine", "Oh no", "Help" and "Fall down" to request objects/actions.
 

Articulation

• N/A today

Voice/Establish Fluency

• N/A today

Other

-Use "mine" and "help" verbalizations/signs throughout the week to decrease frustration
 

We worked on these during:

• 1:1 

Comments:

- N/A today"

Olivia, Speech Therapy
05/02/2013

 

Until Next Time!

Lots of Love,

Love Junx

The following information is taken right from the Love Junx Website.

What is LOVE JUNX?

LOVE JUNX, which now boasts over 270 members, is an entertainment school for children with Down’s Syndrome. The program began as part of the non-profit organization TOYBOX in October of 2002. The long term goals of the school are to foster self-sufficiency and self-expression in children with Down Syndrome through entertainment, and to spread knowledge and understanding of Down’s Syndrome to the public. Through their lessons and live performances at LOVE JUNX, students have the opportunity to meet other children, work together, share their joy, grow together, and make their dreams comes true. Their live performances have already received acclaim on many levels, and there have been many requests to extend lessons throughout the country.

Profile of Anna Makino

Representative/Chief Instructor for LOVE JUNX, and Representative Trustee for TOYBOX, Ms. Makino spent her school days at an AmericanSchool in Okinawa. In 1983, her father began Okinawa Actor’s School - which would go on to become the most famous entertainment school in Japan, giving birth to many stars ? where she began to study entertainment. At 14, she made her singing debut with Watanabe Productions in Tokyo. Two years later she retired, returning to Okinawa at the age of 16, where she became an instructor at Okinawa Actor’s School. Later, she made her second foray into the music business as the leader of a group called The Super Monkey’s. However, she soon decided to return to Okinawa, becoming the Chief Instructor of Okinawa Actor’s School. As Chief Instructor she was given charge of the entire school, and she turned her efforts to discovering new talent, fostering stars like Namie Amuro, SPEED and DA PUMP, who would go on to lead the Japanese music scene. In 2002 she worked with students with Down’s Syndrome for the first time though an event for the Japanese Down’s Syndrome Association, and in October of that year she began her work with LOVE JUNX.

Our achievements so farAs the first professional entertainment school for those with Down’s Syndrome in Japan, the teaching methods of LOVE JUNX have garnered the interest of many instructors and experts. Children with Down Syndrome are thought to have a hard time gaining muscle mass, and to be unsuited to hard exercise. Thus the hip-hop and break dance performances of the students at LOVE JUNX were said to be a landmark achievement, and the high potential shown by the students received high acclaim at LOVE JUNX’s first live performance in 2003. LOVE JUNX became the first participants other than experts from Japan at the 8^th annual Conference of the World Down Syndrome Association, which was held in Singapore in 2004, and were singled out for their performance and teaching methods which left a huge impact on both the experts and families of those with Down’s Syndrome from all over the world.

In Japan their activities have been the subject of numerous television programs: (List TV Programs appeared on)

In February 2005, 63 members performed at the Winter Special Olympics in Nagano. In March of this year 70 members performed at the opening ceremony of the Aichi Expo. In response to overwhelming requests, lessons will open in the Kansai area of Japan this April.

 

About our lessonsAt LOVE JUNX we focus on making an environment where students will fall even more in love with what they love. Lessons that are enjoyable, and let students grow to love dance
Having fun, and growing to love dance is what makes students want to dance more. And once they want to keep dancing, they will begin to practice it on their own, to think for themselves and make their own discoveries. It is the moment that the student decides he wants to dance, and makes the decision to do so, that he take the first step towards growth. The students aren’t simply doing what they’re told, they are thinking for themselves. They aren’t simply waiting to be taught, they start to move forward on their own. This is the kind of environment that we try to create.

We believe that the most important thing in entertainment is not to force students into a mold provided by the instructor, but to draw out the myriad of talent and individuality sleeping within each student. In order to do this, a large part of our lessons at LOVE JUNX focus on free style dance., in which each student brings their own power and energy to the forefront . This is the true basis of entertainment ? the most important thing to foster is not technique, but heart. To use both your body and soul to express what you feel in the music. And in entertainment, it is important to want to do everything that you can for your audience, to want them to have fun. To give everything you’ve got for others. It is this generous heart that we believe it is most important to foster.  
 

 

I'm including this video because about a minute into it you can see a Love Junx class in action!

 

Until Next Time!

Lots of Love,

Gobble! Gobble! Gobble!

I hope that everyone had a nice holiday!
In preparation for Thanksgiving, Isabella and I made sugar cookies.

We wore our matching aprons.  I think I'm going to have to make Isabella a new apron because this one is getting a little small.

 

We used food coloring and made the cookie dough different colors then rolled them together.

 

We cut out turkeys, acorns and leaves.

 

 

Isabella was excited for Thanksgiving.  She was happy that Mommy, Daddy and Grammy would all be home together for the day.  I made raspberry & cheese danishes for breakfast.  They are yummy!

 

 

On Friday, I took Isabella to a tea house for her birthday.  It was so much fun!  She and I both really enjoyed ourselves.

 

 

The ladies that work there gave Isabella a fancy hat to wear.  She, of coarse, loved it. 

 

I wasn't sure if Isabella would drink tea or not.  She ordered mint tea (yuck!!!) and had one cup.  I had the house blend and it was very good.  Isabella has found a new appreciation for sugar cubes.

 

 

 

 

When our main plates were brought out, all the ladies there, including the other customers, all sang happy birthday to Isabella.  She was thrilled to tell them all she was 6.

 

 

We will definitely be going back.  It was wonderful!

When we got home, Isabella was allowed to open her gifts from Grammy a day early.

 

 

 

Lily helped.

 

On Tuesday we went to Longwood Gardens.  They now have the Christmas lights up.

 

 

This year's theme is stars.  Last year it was gingerbread.

 

My Sweet Babies!!!

 

 

Isabella and I likes the red lily's.

 

Lily thought this big Christmas tree was amazing!

 

We are so busy next week!  We have 4 appointments, Raymond's regular 5 therapy sessions and Lily's 1 therapy session.  Also, Monday night I will be the Barnes & Noble in Lancaster at the gift wrapping table.  I am volunteering for the group Celebrate Down Syndrome.  Hopefully it brings a lot of awareness to them.  The following Monday is Raymond's surgery.  They've added tubes, ear cleaning and tissue removal from his ears to Raymond's surgery that day.  Busy!  Busy!  Busy!

 

I'm not going to put up any therapy updates from this week.  Truthfully, I just don't feel like it.  Raymond had good sessions with everyone except his physical therapist.  I think he just needs to get to know her a little better.  I'll make sure I put something specific up next week.  

 

Until Next Time!

Lots of Love,