Tuesday, March 29, 2011

Happy 2nd Birthday Sweet Pea!


Two years ago today Sweet Pea entered our world.  I can not even begin to describe how differently I feel today than I did that morning.  Let's just say that I am THRILLED to be where I'm at today emotionally!  I love this little girl with all my heart and soul and I can't imagine my life without her.  We all celebrate her successes and are extremely proud of all that she has done and all that she is.  Sweet Pea can melt your heart with one sweet smile and you are never the same again!

Sweet Pea is doing so many things right now, but I will attempt to summarize as best I can...

Height: 31.5 inches (50% on DS charts)
Weight: 24.6 pounds (between 75% - 90% on DS charts)



Gross Motor: As I've celebrated already...Sweet Pea is walking!!!!  She is getting more steady every day and her arms are getting lower than her shoulders so she isn't quite a zombie anymore.  We are working on climbing up and down stairs, squats (bending down and getting objects off the floor) and sit ups.

Fine Motor: She has a pincer grasp, but it still isn't clean.  We are working on getting her to hold a writing utensil (crayons mainly).  She started by holding the tip of the crayon with the tip of her pointer finger in a very strange and impressive manner.  Lots of work to go on it, but she is drawing lines now instead of just putting dots on the page.

Favorite Toy:  Aunt R's old cell phone...we even keep it charged to add enjoyment by taking pictures, making beeping sounds, etc.


Signs: She has mastered 38 signs and has another 18 that are emerging.

Verbal: Sweet Pea has two words..."up" and "bye" and two animal sounds "ba ba" for sheep and "mmm" for cows.  Sounds include "ba", "ma", "oh", "da",  and she is close on "wa".  She says "oh" for "go" when we say "Ready, Set..." and "mmm" when something is good.  Lots of raspberries.  She is getting a lot closer on a number of other words.  She is working really hard on saying more sounds that have the correct number of syllables as the word that we are saying. 


Eating: She can eat a lot of different foods, but she is not adventurous and it takes really good luck and a lot of patience to get her to eat many meals.  Even a food that she has liked before will be refused at first.  It takes us telling her that she likes it and sometimes even forcing a little of it in her mouth before she realizes that she likes it and wants more.  We vacillate between giving her dairy and not because she gets sick and we wonder if the dairy caused phlegm, etc. We think she is fine with small amounts, but it's still a work in progress.  Her chewing isn't great still, but we continue to work on it.  We will be getting a new swallow study in a month or two hopefully and we are praying that she won't be aspirating anymore or that at least we can come down to nectar thick from honey thick liquids.

Therapy: Sweet Pea gets a lot of therapy, but she is doing really well with it and enjoys it so we aren't changing it.  She has center based therapy for 3 hours 3 days a week.  Physical, speech and occupational therapies are all twice a week for an hour each time.  Center based and physical therapy are the only therapies that we have to go somewhere for.  The others are either at our home or at daycare.

Daycare/Preschool:  She attends a local daycare 2 days a week for exposure to typical kids and to give Mommy a little break.  She will be transitioning to the preschool portion of the school starting on Thursday.  It will be a very slow transition and start with just 10-15 minute periods of circle time, story time and maybe snack or lunch.  She won't be joining the kids out in the playground or bike yard yet because she will get run over by all the other kids.  She needs to be a little more stable on her feet before we try that.  I know that she will be able to do it all soon, but we are going slow.  I want to ensure that we are successful with every step and I'm expecting to need to be a little creative in the process, but I know that we can (and will) do it.

Sweet Pea-isms:
Giggle wars - we laugh and then she laughs and we go back and forth copying the kinds of laughs we do.  I don't know who enjoys it more!  It's the best way to start the day! 
Hugs - not only do you get arms wrapped around your neck, but you get the added bonus of patting on your back.
Taunting - she loves to taunt us with objects and then when we reach for them she gets a huge grin, turns around and scoots/walks away.  She then looks back to make sure you are chasing her and grins even bigger.  

Sleeping:  She sleeps through the night when she is feeling well.  She moans a lot while she is asleep and it seems like she is in pain.  She falls asleep on her own very well though and she loves her bed (crib mattress on the floor) and her big girl pillow.  She is adorable when we lay her down in her bed and pull the blanket up over her.  She just lays there and looks at us as we leave the room with a very peaceful look on her face.  Love it!

Overall Health: She was sick all of February with a cold and ear infections and is currently sick with a stomach virus of some sort.  She got her second set of tubes placed in November and they are still hanging in there even though the ENT thought they would be out by now.  She has a lot of teeth now, but not a complete set yet.  She has the front 8 teeth (a couple aren't fully in, but have all broken completely through), missing her canines (bottom left is trying to break through), all 4 1st molars (a couple aren't fully in) and 2 2nd molars (1 in and 1 almost in).  We are looking forward to her getting her canines and 2nd molars as I think it will help with her chewing...that and seeing an end to teething would REALLY be appreciated by all of us in this house.  We never know when she is in pain from teething, just being whiny or is actually sick.

Saturday, March 26, 2011

Poor Sick Sweet Pea

This is what Sweet Pea looked like last night...she was sick all day today and we are hoping for a healthier girl tomorrow for her birthday party!  Keep your fingers crossed!



Even though she was sick she decided to show me a new skill today (video here)...


The ending has the start of her sick cry.  She is an unhappy girl when she is sick and who can blame her?

Angel's 2 Month Birthday

I can not believe that Angel is already 2 months old.  Time is certainly flying by!  She continues to amaze me every day!

My favorite things:
* Smiles - Cutest little smiles ever!  I have to try to get it on camera.  She has a tiny little dimple on her right side, but it is lower than you would expect which makes it even cuter!

* Coos - I didn't ever really think about it, but Sweet Pea never cooed.  Angel makes very sweet sounds!

I love watching babies sleep!


Look at this neck strength!


I love this look:


Playing on her activity mat:


She can even wink...Mommy can't!





Birthday girl:

Tuesday, March 22, 2011

Sweet Pea Signing

I finally captured a couple still photos of Sweet Pea signing.  Her signs are exploding and we are exceptionally proud of her.  Mommy and Daddy need to learn more signs though!

Bed


Time (really it is her sign for Baby Signing Time which is how she knows all these signs)


Uh Oh...this may not be a true sign, but I love it anyway!

Monday, March 21, 2011

World Down Syndrome Day

Happy World Down Syndrome Day!



Here are DSALA's 2011 21 quotes for 21 days..."How I see the world though Down syndrome eyes"
Quote 1 of 21, March 1, 2011  
 
Following participating in a public rally
to oppose the California State Budget Cuts
to services for people with developmental disabilities,
Ryan told his mom...

"The bad guys are stealing the money,
we need Batman!"
Ryan Fitch 
 Age 8 
  

Quote 2 of 21, March 2, 2011  
 

"If they invented a pill to take away my Down syndrome, I wouldn't take it because this is the way God made me.  He wants me this way - and I don't want to mess around with God's plan"
By: Lydia Orso  
 Age 31



Quote 3 of 21, March 3, 2011  
 
While observing a traffic signal.

"Red stop, green go, orange..... juice."

By: Marc Williams  
 Age 7 





Quote 4 of 21, March 4, 2011  
 
Brandon's mom awoke to his face in hers,
she said "Good morning, I love you. " 

"Goo ing, I uv oo."

By: Brandon Sardo   
 Age 7 



Quote 5 of 21, March 5, 2011  
 
Paul spoke in 2 word sentences, only a few times a day.
His summer vacation had included swimming with his Grandma.
When he saw her again, 4 months later he said... 
 
"Oh Gumma, mimmin in da pool"

Not only did he say a full sentence, he displayed his long term memory skills since he only had the joy of seeing his Grandma 
a couple of times in his short lifetime. 

By: Paul Steward 
 Age 5 



Quote 6 of 21, March 6, 2011  
 
When Blair was 5 he was stuck on 2 word sentences.
His family  & therapist did everything they could to get him to use 3 words.
One morning he got up to find
the refrigerator restocked and exclaimed...

"Holy Shit, Yogurt!"
After this dad found out he heard those words while watching
SPACE BALLS with his older brother,
he explained "we don't talk like that at our house."
Blair went on his way and his parents celebrated the victory of 3 little words!

By: Blair Williamson  
 Now age 31, with plenty to say 



Quote 7 of 21, March 7, 2011  
 
Two brothers, at dinner, were asked what they were thankful for.  
The typical little 5 year old said "God and Jesus."
His brother with Down syndrome said: 

"Santa Claus"
By: Joseph D'Elia   
 age 7  



Quote 8 of 21, March 8, 2011  
 
Casey and his mom were shopping.  When they got to the cash register the clerk asked Casey "how are you?" Casey responded  

"Great" and pointed to his mom and said "I'm her kid."
 
The clerk repeated to make sure she understood,
"You're her son"
and Casey replied  

"Oh, she knows!"
By: Casey Powell   
 age 30



Quote 9 of 21, March 9, 2011  
 
Angela was trying to tell her father something.
He wasn't getting it, and asked her to repeat slower, twice.   
Finally, in frustration, Angela shook her finger at her father and said:  

"DAD CONCENTRATE"
By: Angela Armenta 
 age 24   



Quote 10 of 21, March 10, 2011  
 
Jessi's mom was on her way inside a business,
Jessi asked if she could wait in the car,
mom told her sure, as long as they could see each other.  
Jessi informed her mom:

"I'm almost 18 you know!"
By: Jessi Rendleman  
 age 17 of course!    



Quote 11 of 21, March 11, 2011  
 
Jon's mommy set him up with an activity and told him she would be
doing the dishes and to call if he needed her.  Jon replied:   

"One more thing 'fore you go... big cheer for Mommy.  GO MOMMY! GO MOMMY!"
By: Jonathan Psaute   
 age 6   

Quote 12 of 21, March 12, 2011  
 
Jason wrote his mom a Valentine Card that read: 

"Roses are Red
Violets are Blue
Sugar is Sweet
And so do You."
By: Jason Kingsley    
 age  36



Quote 13 of 21, March 13, 2011  
 
Amanda & Jon have dated since high school.  In passing, Amanda's mom mentioned that Jon had Down syndrome.  With a surprised look on her face, Amanda said: 

"He does?" taking a moment...
"That's cool."
By: Amanda Kragt    
 age 28   



Quote 14 of 21, March 14, 2011  
 
Kayla was 10 when she attended a funeral with her mother.  
She wanted to go with her mom to pay her respects at the open casket.  After saying a prayer she asked her mother: 

"What happened to her legs?"
By: Kayla McKeon     
 now age 23     



Quote 15 of 21, March 15, 2011  
 
Jessica's mom asked her, and her 4 brothers, what they wanted to be when they grew up.  The boys answered "An engineer, an artist, a marine biologist, a waiter."  Jessica put her finger to her chin and thought... then with a big smile, she rose her arms high above her head and said: 

"BIG!"
By: Jessica LaPrade      
 age 5  



Quote 16 of 21, March 16, 2011  
 
Casey's program was closed in observation of a Jewish Holiday.
His step dad said "But Casey, your not Jewish."  
Casey responded: 

"Well... I am now!"
By: Casey Powell       
 age 31  



(Missing day 17 for some reason...)


Quote 18 of 21, March 18, 2011  
 
Sadie was sitting on the kitchen floor playing with the families 1 year old puppies, addressing the puppies individually she said:  

"Emmy, I'm Sadie... Lizzy, I'm Sadie"
By: Sadie Little       
 age 3 



Quote 19 of 21, March 19, 2011  
 
When Ibby doesn't want to do something his response is: 

"I CAN'T like that!"
By: Ibby Siebenman        
 age 6


Quote 20 of 21, March 20, 2011  
 
Watching her Grandmother's coffin lowered into the ground,
Amanda whispered to her mother: 

"Happy Trails"
By: Amanda Kragt 
 age 24  
 
Quote 21 of 21, March 21, 2011  
 
Blair and his mom were seeing a chiropractor,
his mom was referred for a massage.  
When she arrived she was told the usual message therapist was not in but
her appointments were being filled by a visiting Tibetan Monk.  
When she told the story to friends, often in front of Blair,
she was teased that after the Tibetan Monk
she surely would never want "just any" massage therapist to treat her.
One day, on her way to the chiropractor
she asked Blair if he wanted to go,  
but explained she was getting a message
so the appointment might be a little long.  Blair responded: 

"Yes I want to go, I want to see the monkey that has been giving you massages"
By: Blair Williamson        
 age 31            
 

Friday, March 18, 2011

Sisterly Love

Sweet Pea is loving her little sister!  She is fascinated with her and wants to be close to her every chance she gets.  Angel often appears quite worried by Sweet Pea's excitement...and she is probably wise to be!  I can't wait until Angel is old enough to play with Sweet Pea!  It's going to be a magical day for them both!









Thursday, March 10, 2011

Pigtails

I was never meant to have girls...but now that I have two of them I have given in to the fact that I need to start learning how to do their hair.  Sweet Pea is NOT happy about being my test subject, but hopefully we will both get better quickly.  Here is my first attempt at pigtails...they didn't even make it until school that morning!



Wednesday, March 9, 2011

Wordless Wednesday: Angel Cuteness

I can't believe she is 6 weeks old today!!!!  The time certainly is flying by and I'm going to miss these days...even though I don't get enough sleep, get spit up on regularly and haven't figured out what her cries mean yet.  She is so adorable that I will take all of that and more!  Happy 6 week birthday Angel!  Mommy, Daddy and Sweet Pea love you VERY much!






Tuesday, March 8, 2011

Walking!!!!

I'm calling it officially...We have a walker! 













And she walks with shoes on her hands too!  Yes, you heard me right...we have a walker!  Sweet Pea has decided that it's time to start walking instead of crawling!  We couldn't be prouder!  She is carrying stuff all over the house and loving her new found freedom and ease of moving.  Her endurance is building quickly and we are going to keep working hard on it, but she is doing amazing and I'm on cloud nine.

Sweet Pea wants to thank the following people:
1) Cousin O - You have been helping me walk for months and you make me so happy every time!

2) Auntie J - You may be called "Mean Auntie J", but I know you are really a softie underneath it all.  You help push me and keep me from taking the easy way out and for that I thank you...even if I continue to choose to poop on you for it!  (Backstory - Sweet Pea has a long history of pooping anytime Auntie J is around and sometimes it has literally been ON her!)

3) Grandma - You have been helping me work on walking for a LONG time and I've loved all our time together.  Thank you for always taking me when I'm sick and not at my best!!!!  I love my Grandma cuddles though!

4) My good friend John - This is my mom's friend's child and every time I get together with him I seem to learn something knew.  Yesterday you got me to believe in myself!  I do have to say that part of the reason was that I decided I better walk to protect myself from getting run over by you too much.  You are all boy and I love you for it!

5) Everyone else...therapists, daycare friends and teachers, blog friends, everyone - You have given me so much encouragement and love!

Saturday, March 5, 2011

Great Walking Strides

Sweet Pea is making huge progress walking!  She will often stand up and walk instead of her version of crawling.  She can make it 20 feet on a good day.  We are working on building her endurance and trying to have her walk everywhere.  We went to the park with her cousins yesterday and you can check out her progress in these videos...

Check her out here...and her amazing Cousin O too! (This one is very long...if you want a shorter video then check out the other 2 videos)


Here she is again...


And again...

Tuesday, March 1, 2011

See and Learn - First Words - Matching

We have started working with Sweet Pea on the Down Syndrome Education Foundation's See and Learn reading program.  (Make sure you go to the US version as they do have a UK version as well)  The first stage is called First Words and here is what their website says about it:

See and Learn First Word Pictures contains four activities to help children learn 60 common first words using pictures. It is designed for children who are at the first stage of learning language.  This step also prepares children for learning to read by developing their visual skills through matching activities. They will use these visual skills later in the See and Learn Language and Reading program.

Activities

See and Learn First Word Pictures consists of four activities:
  • Activity 1 - Looking at First Word Pictures
  • Activity 2 - Matching First Word Pictures
  • Activity 3 - Selecting First Word Pictures
  • Activity 4 - Naming First Word Pictures
I did Activity 1 just a few times and she seemed to enjoy it, but it wasn't very exciting and I had no idea how future activities would go.

I quickly moved on to Activity 2 (matching) and we are having HUGE success with it.  It only took a few tries and she started to really get the idea of matching.  Here is a video of her doing a couple of the pictures.  You start with the baseboards that only have two pictures on them and then move on to the ones with four pictures.  I love how she requests more when we finish with a board!
 


We are now starting to work on Activity 3 (selecting).  The first time I tried it she did it correctly with the first 4 about 75% of the time, but the next two times I tried the activity she did not do hardly any of them right.  I think she has a hard time focusing and listening to what I'm asking for so I need to make sure that I'm working with her when she is at her best.  The first time I tried the selecting activity was in the middle of an afternoon.  The next two times were right before bed.  Definitely not the best time to be trying this.  The reason for doing it before bed is that Sweet Pea sees the folder that holds the cards and baseboards and starts pointing to it and requesting to play with them.  How do you say no to a girl that is loving to learn?!?  I guess we will need to do it twice a day and only do the matching in the evening.  One of the key things that this program stresses (as it seems many programs do) is to always make it a success and don't let your child fail so that is why I want to ensure I'm doing it when she is at her best.

Let's hope that Sweet Pea continues to love this program and everything else educational!

Here is another video of Sweet Pea matching.  I love her laughter in the middle of this one!


And one more...Yes, you do hear her let a lovely fart loose!  And I apologize for the shaky camera work...that is what happens when I'm trying to keep Angel quiet and video tape at the same time.