Yes!

Oh yeah!

 

Until Next Time!

Lots of Love,

It's Friday Already!

So if you haven't noticed, I haven't really felt like blogging lately.  The kids, especially Raymond, have all been sick.  Raymond was in the hospital and still felt pretty crumby after they sent him home.  Lily ruptured her eardrum and has been complaining about it pretty consistently.  Isabella still has a terrible cough.  Ugh.  I can't wait to open up the windows and let some fresh air into this house.  On top of all that, I have been trying to get the girls room done.  I'm hoping by next weekend it will be.  When it is, I will post some pictures.  So far, it looks great!

 

With everything else going on, Isabella ripped out some of her dental work and I had to pick her up early from school on Wednesday to have it repaired.  I felt bad getting her because it was the day before Spring Break, and I know they were doing a lot of fun things.  I wanted it to be taken care of before her mouth started to hurt.  She was uncomfortable after everything was reinserted because it felt tight.  After about an hour, she forgot all about it.

 

Lily is officially done with speech therapy.  She is doing so well.  It's fun to hear her talk and ask questions.  Her language is really developing.  For example, she used to say "Raw-Raw" for Raymond and now she calls him "Romey" (pronounced like Mitt Romney without the 'n') or "Ramen", like the noodles.  She says, "please", "thank you" and my favorite, "you're welcome".  It sounds so cute!

I had a doctor's appointment yesterday for the baby.  She is doing well.  They said I am measuring perfect and she has a good strong heartbeat : )  I know she has a strong kick too!
I have been having trouble with my sciatic nerve with the pregnancy.  I did when I was pregnant with Isabella too.  It's especially hard on the weekends when I'm at work and am standing/walking on a concrete floor for 8 hours.  My doctor told me she thinks it would be a good idea if I stop working.  She said since I have had so many C-sections that I am at risk for my uterus to rupture just from walking around.  That's a lovely thought, isn't it?  I will not be stopping just yet.  I am going to try to hold out as long as I can.  Sitting here, typing this, makes me wonder how many weeks pregnant I was with Isabella when I had to stop working (and that job I sat at a desk all day)...hmmm. 
I figured it out.  24 weeks.  I am 26 weeks now.  So the timing is about right in terms of when I started to have a lot of discomfort last time.

Easter is basically here already.  I can't believe that.  I guess it doesn't help it's so early this year.  I still have to get the kids baskets together.

The girls and I made cupcakes to celebrate.  I found an idea on Pinterest to make edible glitter.  It wasn't as sparkly as the picture on Pinterest, but it did work well.  I think next time I will use a more coarse sugar.  It would probably work better.  It's as easy as this: 

Take 1/4 cup of sugar and add 1/2 tsp. food coloring.  Bake at 350 degrees for 10 minutes.

I didn't have a lot of food coloring so we made due with what we had.

From Pinterest...

 

Ours...

 

I don't have the best camera in the world.  The sugar was actually much more glittery then it looks in this picture.

 

 

 

We put the cupcakes in liner's that look like flowers.

 

This is what Raymond did while we made the cupcakes...

 

Ran around with no cloths on like a crazy man!

 

 

Isabella and I made lime frosting for them.  Then she went to town decorating.  If you would like a sugar-high, come eat one of these cupcakes.

 

Have a great Easter everyone!

 Until Next Time!

Lots of Love,

Garrett's Fight

I would be proud and terrified all at the same time!

 

 

Until Next Time!
Lots of Love,

 

Fasten Your Seatbelt Series: When siblings need private time!

 

Until Next Time!

Lots of Love,

 

Laundry

 

Haha!

 

 Until Next Time!

Lots of Love,

Fasten Your Seatbelt Series: Why is my sibling with Down Syndrome obsessed with movies?

 

Until Next Time!

Lots of Love,

 

Happy Spirit

Until Next Time!

Lots of Love,

Dolls for Downs

 

I have actually thought about this many times when flipping through doll catalogs with Isabella.

Awesome!

Until Next Time!

Lots of Love,

 

Fasten Your Seatbelt Series: Why does my sibling have no friends?

 

Until Next Time!

Lots of Love,

 

It's Behind Me...

This made me chuckle.

 

 

Until Next Time!

Lots of Love,

No Therapy This Week

There has been no therapy for anyone this week.  The kids have all been sick.  Only yesterday did Raymond start to move...seriously.  He was like a big lump all week.  Chris and I were starting to get worried because he is taking an antibiotic and steroid and it didn't seem to be helping at all.  But thankfully, he is picking up now.  Lily is also feeling much better.  I received a call from the school nurse yesterday about Isabella.  She was coughing very hard.  We know that this cough she has is going to linger but the nurse said she heard a lot of congestion in Isabella's chest.  So I took her back to the doctor yesterday and he gave her a different antibiotic to hopefully knock it out once and for all.  She has missed a lot of school with this bout of pneumonia.

On Wednesday Isabella had a dentist appointment after school to have a cavity filled.  I was a little nervous because she would have to get a shot of Novocaine in her mouth.  She freaks out if she has to get a vaccine at the doctor, so I expected the worst with a needle going in her mouth.  The dentist did a good job of not allowing her to see the needle.  Isabella was uncomfortable but did such a good job.  I was impressed with how well she did.  She didn't like the numb feeling afterwards, but who does?  Isabella continued to update me on the progress of her mouth "waking up". 

I also had to cancel some appointments that Raymond had scheduled this week.  He was in NO condition to go to any of them.  Luckily for us, the appointments were able to be rescheduled in a timely manner.  Sometimes with specialists, you have to wait months for an appointment when you reschedule. 

I found a new store at the King of Prussia mall that I just love for the kids.  It's called Monsoon.  I took Isabella there so she could pick out a dress.  She fell in love with the store.  The ladies that worked there thought she was so cute.  They asked her is she would be interested in being in a fashion show.  5...4...3...2...1...FREAK OUT!!!  She was SO thrilled!  The manager told me that they aren't sure exactly when the fashion show will be because they are still trying to work things out with the mall.  She took our names and my information and said she would call as soon as she knew more details.  Isabella of coarse keeps talking about it.  She will be ready!  When she is feeling better I will have her put on the dress she chose and take a picture for everyone to see.  It's cute!
And for those keeping track, the baby is a girl!
: )

 

Until Next Time!

Lots of Love,

 

Spread the Word to End the Word

Spread the Word to End the Word is an ongoing effort by the Special Olympics, Best Buddies and other supporters to raise the consciousness of society about the dehumanizing and hurtful efforts of the R-word and encourage people to pledge to stop using the R-word. 

The campaign, created by youth, is intented to engage schools, organizations, and communities to rally and pledge their support at www.r-word.org and to promote the inclusion and acceptance of people with intellectual and developmental disabilities.

The official annual day of awareness is held the first Wednesday of every March.

 

Spread the Word to End the Word was founded by college students Soeren Palumbo (Notre Dame 2011) and Tim Shriver (Yale 2011) in 2009, and continues to be led by passionate young people, Special Olympics athletes and Best Buddies participants across the United States and in many other parts of the world.

 

Respectful and inclusive language is essentail to the movement for the dignity and humanity of people with intellectual disabilites.  However, much of society, does not recognize the hurtful, dehumanizing and exclusive effects of the R-word.

 

Language affects attitudes.  Attitudes impact actions.  Make your pledge to choose respectful people first language today at www.R-word.org.

 

"I pledge and support the elimination of the derogatory use of the r-word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities."

 

 

Tim Shriver was recently on The Colbert Report to talk about the Spread the Word to End the Word Campaign.  Steven Colbert asked him if this request, society not using the r-word, was the same as  policing language.  Without even pausing, this was Tim Shriver's response:

"I didn't say you can't use the word. I don't want to be a cop, I want to be a teacher. You're allowed to be humiliating, degrading and hurtful.  I'm allowed to petition you to at least recognize what you say and be aware of the option you have to stop."

 

Well put.  Very well put.

 

Until Next Time!

Lots of Love,

Fasten Your Seatbelt!

A little while ago I purchased the book, Fasten Your Seatbelt: A Crash Coarse on Down Syndrome for Brothers and Sisters, off of Amazon.  It is intended for children a little older then Isabella, but I figured better to be more prepared then not.  The book is about questions that siblings of children with Down Syndrome often ask.  It helps prepare parents for how to appropriately answer these questions.  It is also a book that children could read themselves.  Brain Skotko, one of the author's of the book, is a sibling of someone with Down Syndrome.  He is a wonderful advocate and speaker.  He and the other co-author, Sue Levine, have a series of web video's on YouTube answering and talking about some of these questions. 

 

I've decided to feature one of these video's on the blog every week until we've seen them all.  NOT all the questions in the book are on YouTube, but what is, gives you a very good taste of what you will find inside.  A lot of what I talk about on this blog is related to younger children with Down Syndrome - because that's what I know.  I think this will be a nice change of pace.

So check back on Monday's to see these video's.  I really think you will enjoy them!

 

Until Next Time!

Lots of Love,

I'd Rather...

 Until Next Time!

Lots of Love,

Weekly Therapy Update

Raymond's Therapy Update for the Week

"We have been working on:

Receptive Language

• Following Directions

- Attempted ID of verbs (Raymond imitated gestures/signs).

Expressive Language

- Raymond put 1 item away when given a choice of two.  Prompts to make selection instead of pushing non-desired item away.

Using Functional Language

- Raymond mastered use of functional word "open".  He is working on me, in-out - big.

Articulation

- Raymond attempted to imitate "me" - "out" today.  Imitates sign for "big".

Voice/Establish Fluency

• Raymond is requesting "book" using a sign at the beginning of the session.

Other

• N/A today

We worked on these during:

• 1:1 (Home)

Comments:

- Work on "in/out", "big", "me" imitation."

Allison, Speech Therapy
02/21/2013

 

 

Lily's Therapy Update for the Week

"Progress since last session - Including Parent Report:

- A friend noted to Erica that she has much easier time understanding Lily.  The family listened to the songs and tape. 

Outcome(s)/Goal(s) from IFSP/IEP to be addressed:

- #1. Lily will increase her language to express her wants/needs especially at mealtime. 

GOAL MET!

 

- #2. Lily will increase clarity of phrases to be understood by family member's during play and meal times.

NEW GOAL

Daily Routines Used:

• Play with toys
• Book Activities (Ipad)
• Songs and Rhymes

Strategies Used

• Offer Choices
• Turn Taking
• Modify Environment
• Describing or Labeling What You Are Doing
• Adjusting pace by Wait or Pause Response
• Model or Demonstrate for Child (Eat App)
• Encourage Child to Imitate
• Positioning (stool)

What we did today to address outcome:

- Lily began differentiating vowel in "Mommy" and "Daddy".  Erica reports that Lily is experimenting with pitches.  She's saying "I love you".

- We modeled "oo" words during stories, pictures and games.  Lily and Isabella took turns playing a matching game and Lily named pictures - moo, moose, boot, etc. with model.

 

- Lily blew bubbles today!

 

- She imitated lip protrusion and said "you" appropriately one time. She spontaneously said "monkey on" for Let's Eat Monkey App.

 

- We reviewed names during turn taking

Plans for next session:

• Egg with toys - hunt/hide
• Quarterly review

Suggestions for families to do within their activities/routines:

- Continue modeling 2 syllable words with different vowels; Lily, Mommy, Daddy.  Ask "Me or you?"  Baby Babble 3 TDN and phrases.  Barney matching pictures game.

Progress information to be collected between sessions:

- Success with DVD.  I-You.  Understanding Lily's phrases."

-Ellen, Speech Therapy

02/27/2013

 

 

Last night I had to take Raymond to the hospital because his g-tube came out and I didn't notice.  The balloon popped so he didn't fuss when it happened.  We didn't get home until around 4am.

He and Lily are both fighting colds and fever's now.  Lily seems to be having a harder time getting over it then him - surprisingly. 

 

 

My handsome boy!!!

 

 

Lily wanted her picture taken too!  She's eating beef jerky in this picture.

Isabella was home almost all week with pneumonia.  Poor girl!

 

Until Next Time!

Lots of Love,