Saturday, October 31, 2009

Happy Halloween!!!

HAPPY HALLOWEEN EVERYONE!!!
Here's a little.... ummmm ok a big recap of what we have been up too! I'll do it in pictures, less words... enjoy!!!

Snow White Sonya and her poison apple!

Belle Beauty Zoe!


Ariel Little Mermaid Akela!

"She's got legs! Human legs!!!"

My 3 pretty princesses!

Carving time!

Akela checking out the insides of her pumpkin!

Zoe and her pumpkin!

"Ewwww!!! Guts!!!"

Separating the guts and seeds.
I was not expecting this reaction from Sonya... She was really upset about her pumpkins insides.

You have got to be kidding me! That's what is inside of my cute pumpkin??!!

Oh the horror, THE HORRORRRRR!!!!

Daddy please put it BACKKKK!!!!

That's just awful!!!

Don't worry, she eventually got over it and dug in!

Daddy and the girls gutting the pumpkins so mommy can carve them.

Zoe and Akela admiring mommy's carvings. Sonya was so tired, she went to bed and missed the results... will post more pictures after trick or treat tonight, hopefully I'll get a good one of her with the lit up jack-o-lanterns!

HAPPY HALLOWEEN EVERYONE!!!





Wednesday, October 28, 2009

"Building Self-esteem in Children / Teens with OI"







I wanted to share with you all a webcast that I watched last night "Building Self-esteem in Children/Teens with OI". The webcast has been saved and can be seen at the link below. It is approximately an hour long discussion given by Kara Ayers whom herself has type 5 OI. Kara is very informative on the topic and also has her own website where she discusses the broad spectrum of disability issues. Currently Kara is pursuing her PhD in Clinical Psychology with an emphasis on children with chronic illness and disabilities, specifically children with OI. She is finishing her dissertation on the psycho-social effects of growing up with OI. For the POLP reading this post, some of these topics can be very helpful for you and your LP as well! Not all of this discussion is necessarily directed to just children and adolescence living with OI, but can be applied to many other children with varying abilities who spend a considerable amount of time around hospitals and whom have many different appointments with varying specialists frequently.

In Kara's webcast she discussed some helpful children's books. My mom is planning on getting these books for Sonya for Christmas. I will post a review on these books with my thoughts in a future post!

Kara's Website : http://www.karaayers.com

Link to Webcast : http://www.ustream.tv/channel/building-self-esteem-in-kids-with-oi

Enjoy!!!

Tuesday, October 27, 2009

The Gummy Bear Song - Long English Version

Warning: This video will have your kids hooked! Sonya is absolutely in love with this song! I have it stuck in my head since she requests viewing it on youtube at least 5 times a day! I have to tell her that he went night night!

Monday, October 26, 2009

Black Apple Doll

I made this cute doll for Sonya last night out of some scrap fabric in just under an hour and presented it to her in the morning when she woke up! She loves her new dolly! For more info on where to find the free tutorial and pattern head over to my craft blog at Testing 123! If you like, I have a button to add to your blog!
Sonya making her new dolly dance!

Giving dolly a kiss!

Checking out her scarf!


Of course she had to taste her button too! Don't worry it's sewed on super tight!

Dolly


"Dolly" hanging out with "bun-bun"(bunny), "rrrarrr" (lion) and "pairy how" (fairy house).

Napping.... ZZzzzzz....

I think I sewed her arms on a little funny. She looks like she is in a permanent ballet position! I'll have to give this tutorial another shot and make dolly a friend or two! Now my older girls want one too!




Friday, October 16, 2009

Pumpkin Patch

I took the girls over to AGA Farms in Bedminster this past Monday to pick some pretty pumpkins in the patch, run through the corn field maze, check out the cool emu and of course snap some beautiful pictures of my cute gals having a blast!
Well, it seems the pumpkin farmers had a rough season here in PA. There wasn't much to choose from, in fact most of the pumpkins were rotting already! We searched for about 40 minutes and managed to snatch up 3 decent sized good lookers!
Telling pumpkin stories!

"So Mr. Pumpkin....."

Akela is such a ham for the camera these days!
My pretty Zoe.


All on board the pumpkin wagon!

Zoe and Akela did a great job of hauling the wagon and loading it with the pumpkins while I carried Sonya. Boy, I can't wait for her to walk!

Zoe found the first good looker!

The girls got to see a personal air plane take off on the farm's land! Sorry, no pic's of the plane, I was too busy getting this cute shot!

Where's Sonya? There she is, she's the cute pumpkin in the middle!

"Yay punkins" is what Sonya saying in this photo! I love how she says pumpkins!

Checking out our pumpkins!

Goofballs!

AGA Farms

The farm's lonely emu!

Sonya was completely petrified and screamed the second I even came remotely close to the big bird!

Funny, the older girls were also pretty intimidated by him too! Akela was a little more on the brave side though compared to Zoe.

Getting to the edge of the cornfield maze! Look at that ominous looking sky!

In the thick of the maze! Storm a brewin'!

Akela and Zoe call this picture "taking a corn field shower!" I don't know, I think they were being a bit goofy!

Sonya wasn't sure what to make of it!

She did enjoy watching her sisters being completely silly though!

That was fun!

Bonus : We managed to get outta there before the down pour of heavy rains!

Wednesday, October 14, 2009

The Second Opinion

Hi everyone!

We went down to Kennedy Krieger Institute's OI Clinic in Baltimore Maryland today to see Dr. Leet. She looked over Sonya's x-rays and said that given the fact that Sonya has not fractured frequently in her legs since birth and her only having a few PAM treatments, she is not ready to be rodded. She said that she definitely is a good candidate for rodding as her femurs and tibias are very bowed, but she needs to have more PAM first! So we are waiting. She also cleared up the C1 C2 instability debate. Dr. Kruse is saying there is NO issue while Dr. Ain feels he sees something there. Dr. Leet says that when Sonya is old enough to understand how to move her head from chin resting on chest to eyes gazing at the sky positions in a smooth transition and do so on command then they could perform a CT scan and get a better idea of what is going on there. We are all hoping it is not a Basilar Invagination issue. So, guess who's going to start practicing this smooth transition of positions?!

In the meantime Dr. Leet feels that Sonya should be getting Physical Therapy 2-3 times a week plus swimming time. She also says that Sonya is ready for a pediatric walker and that she could use some clam shell AFO's for bracing her legs. We will be calling our Physical Therapist over at duPont tomorrow to get the ball rolling on all of this! I'm so excited for the walker! Sonya has been starting to cruise (taking 3 or 4 steps) furniture and has been pulling up to stand at even higher pieces of furniture in our home.

We will be having Early Intervention coming out to our home on the 19th of November for an evaluation so hopefully we can get the 2-3 days a week of Physical Therapy through them and that would mean no traveling for us!

I am happy that we sought out a second opinion on rodding surgery. I was disappointed that our orthopaedic surgeon at duPont wasn't even willing to discuss rodding with me until Sonya was 3 years old. Now that I know the reasoning behind his not wanting to rod her until later, (Sonya's bones are just not strong enough to take on that surgery yet) I feel better. Thank you everyone for your well wishes on this trip!!!

I know you all need your Sonya fix! So here she is in all of her climbing and standing glory!





Tuesday, October 13, 2009

Mommy's Arms



Yes, one of these days Sonya is not going to fall asleep in my lap anymore. It may still be awhile off in the future, but probably not too far. She's getting closer to being 2 years old! Unbelievable! I'm going to miss these days!




Wednesday, October 7, 2009

Dwarfism Awareness Month!

When we first learned that Sonya would be born a little person I was surprisingly at peace with that fact. I knew very little about dwarfism at the time, but I knew she would be ok being little. My only concerns for her were purely medical. We were told that she had one of two lethal types of dwarfism. Lethal because she would have respiratory issues once born. All I could think about was "Please God let her be able to breathe and live!" I knew that there would be struggles when it came to her stature, but that she could overcome those struggles and live a happy life. I just prayed that she would get to live that life! To read more about our begining click on Sonya's Story.

I can't tell you how many times I have had strangers, who have just learned her age, tell me "Oh wow! She is really tiny! Was she premature?" After my response of "No, she is a little person." they look at me like I have two heads, like they are thinking "isn't that what I just said?" It amazes me how many people do not recognize the term "little person"! I literally have to spell it out for them. "A type of dwarfism." Even still, most people just don't get it. This of course most often ensues in a 30 to 45 minute conversation about how many types of dwarfism there are, as most people who have heard of dwarfism are only familiar with Achondroplasia, and of course the lengthy discussion of Sonya's particular type of dwarfism, Osteogenesis Imperfecta type 3.

Most people with the many different types of dwarfism would not consider their type of dwarfism as a disability. For Sonya it is different. "Frequent fractures of the long bones, the tension of muscle on soft bone, and the disruption of the growth plates lead to bowing and progressive malformation." is stated by the Osteogenesis Imperfecta Foundation. These frequent fractures hinder her ability to be as mobile as a person who is of average stature and unaffected by OI. Sonya doesn't let any of this "hindering" get in her way! She is a very determined little girl and nothing will stop her from achieving great feats! She dragged around a 5 pound half body cast at just 17 months of age (her stats : 17 pounds and 27 inches at that time) moving from room to room with a broken femur for 7 weeks! She found a new way of getting around after she broke her arm at 14 months of age and could no longer bear pressure on it to crawl! Sonya amazes us and others with her strength as she pulls up to stand on her 90 degree angulated weak and brittle femurs (thigh bones) and again when she hoists her small 27 inch frame up on top of our couch that is almost as tall as her at 20 inches. She is strong despite her fragile bones and small body. It may take her longer than the average height toddler to accomplish things such as walking and running but she'll get there when she's ready! She is one amazing sweet girl and we are blessed to have her as our daughter!
Aside from OI and dwarfism being a very small part of who Sonya is, she is a typical almost 2 year old! Sonya loves hamming it up for the camera, giving a little bit of an attitude here and there, telling us "NO!", playing dress up and tea party. She loves building with her blocks, naming the pictures on her flash cards, looking at her books and playing with her baby dolls. Her appetite is small like her and she is generally a picky eater as are most toddlers. She could watch Elmo all day if I let her and she finds it amusing when the cat meows loudly after she pulls his tail. She enjoys taking rides around the block in her Step 2 Car Buggy and her Radio Flyer Wagon when she is in a cast. She is terrified of the lawn mower and the vacuum and immediately wants to be held and comforted when either are running. Sonya is completely all out obsessed with Beyonce's Single Ladies hit song and requests frequent plays of the video on YouTube. One of these days I will have to catch her on video dancing and singing to it! She hates being contained, in the highchair, car seat, stroller, or by a gate just like any other toddler usually does and will do anything in her power (usually screaming at the top of her lungs and throwing a full out tantrum) to be freed! Surprisingly she is just awesome at going to bed for me! She almost always, with only a few rare exceptions, falls asleep within only 5 minutes after I put her to bed!
Sonya makes my heart skip a beat every time she says "I ya you" (I love you) and she has me laughing in stitches when she says "Jus poopie!" (Just poopie!) referring to whats in her diaper at any given moment. She gives warm squeezey hugs and slobbery kisses and you can bet if you are with her for just 10 minutes you will see her pick her nose at least once! She will pout when you tell her to stop. Sonya loves to get her hands on my phone, my keys and everything else that she can't have that lives inside my purse. She can be silly and quirky at times but she is always just super cute, sweet and lovable!
As you have read, Sonya is your typical almost 2 year old. Being a little person whose bones are fragile and break easily is just a small part of who Sonya is. Although her type of dwarfism, OI, is a serious condition and it does affect her daily, she doesn't let it own her or run her life. When it comes to Sonya life, she is the star and she runs the show!
Sonya with her two older sisters Zoe and Akela last October (2008)

Sonya this October (2009) wearing the same exact outfit, same size!

Sonya pulling up to stand October 2009

Sonya with her Daddy's size 10 1/2 work shoe October 2009

Ok, so now I'll take a moment to express my feelings about the "M" word. It is flat out unacceptable and offensive. Many people compare it to the "N" word that is used with hate and ignorance to describe African Americans. Both of these terms should be eliminated from our language! I also think of it this way : using the "M" word to ridicule someone of short stature is just as terrible as it would be to point and laugh at people with other genetic conditions. Is it acceptable to poke fun at someone with Alzheimer's Disease, Autism, Cerebral Palsy, Diabetes, Downs Syndrome, Epilepsy, Hemophilia, Muscular Dystrophy, Parkinson's Disease or Spina Bifida....etc... The answer is NO! So why do people think that it is acceptable to ridicule, point and laugh or whisper about people with a type of dwarfism? It's a genetic condition! It comes down to this : We are ALL human! We all come in different shapes and sizes, colors and personalities. Isn't this something that is taught to us all when we are in preschool or kindergarten?! Shouldn't it have sunk in by now?! Ok, I'm off my soap box.

Now I pass on this message from Little People Of America. Here's to spreading dwarfism awareness!

FOR IMMEDIATE RELEASE CONTACT:
October 1, 2009 Gary Arnold
Little People of America
1-714-368-3689
GArnold@accessliving.org
LITTLE PEOPLE OF AMERICA RECOGNIZES OCTOBER AS
NATIONAL DWARFISM AWARENESS MONTH

October has been declared National Dwarfism Awareness Month by Little People of America. Little People of America (LPA) is a national support organization for people with dwarfism and their families. LPA provides peer, parent and medical support for the dwarfism community.

LPA began in 1957 with actor Billy Barty and 20 short-statured friends. The first LPA meeting was monumental for a group of people who were severely mislabeled and misunderstood by society. Today, Little People of America is a thriving international organization providing much needed support, education, educational scholarships, and community outreach.

In declaring Dwarfism Awareness Month, LPA hopes to raise positive awareness around dwarfism, address common misconceptions, and increase opportunities for people with dwarfism around the country.

“People with dwarfism are no different than any other person. We may just need a well-placed stool. Our members are children, college students, business professionals, doctors, engineers, mechanics, artists and teachers. We can do anything an average-height person can do,” says Lois Lamb, LPA President and a person with dwarfism.

“Raising a child with dwarfism is new for most parents. Being part of LPA has made a tremendous difference. My daughter and I both have great friends and role models. High school is not an easy time for most teens, but neither of us feels alone in dealing with any extra challenges,” says Joanna Campbell, average-height mother of a teen with dwarfism.

More about LPA and dwarfism:

* There are over 200 distinct forms of dwarfism and skeletal dysplasias.

* People with dwarfism are generally not taller than 4′ 10″ at adult height. The typical height range is 2′8″ to 4′5″.

* Eighty percent of people with dwarfism have average-height parents and siblings.

* There are an estimated 30,000 people in the United States and 651,000 internationally with a type of dwarfism.

* In July 2009 the word “midget” was declared inappropriate and offensive. Preferable terms are: having dwarfism, short stature, little person, lp, and the medical terminology use of dwarf. A person’s name is always the most preferred.

* LPA has registered a complaint with the FCC over the use of the “m” word. Our goal is to raise awareness around the offensive impact of the word in order to eliminate use of it in media, popular culture and in everyday language.

* LPA has 6500 members across the United States and includes 70 chapters active in all 50 states.

* Skeletal Dysplasias affect bone growth, but generally do not affect cognitive abilities.

* LPA hosts an annual national conference each July which draws 2500 attendees for a week of activities, including educational and medical workshops, sports, and social networking and events.

For more information about National Dwarfism Awareness Month, please visit www.lpaonline.org or call 1-888-LPA-2001. Events supporting National Dwarfism Awareness Month will be occurring throughout the United States all during the month. Contact the chapter in your area, or the Regional Coordinator for Dwarfism Awareness Month listed on the website.

The National Dwarfism Awareness Month program is dedicated to increasing public knowledge about people with dwarfism.

Mission of LPA “LPA is dedicated to improving the quality of life for people with dwarfism throughout their lives while celebrating with great pride Little People’s contribution to social diversity. LPA strives to bring solutions and global awareness to the prominent issues affecting individuals of short stature and their families.”

The LPA National Office is located in Southern California. You may also contact Joanna Campbell, Executive Director at info@lpaonline.org or (714)368-3689.

Tuesday, October 6, 2009

Zoe's First Bento!

What the heck is a Bento, do you say? Check out Wendolonia! I ran across her blog when I was searching for some lunch box ideas for Zoe. I am sooooo tired of packing the same old thing for her when she doesn't want to buy the "too weird" lunch cafeteria food or when we are strapped for cash. These days it's mostly our bank account that is screaming no to buying a lunch. So I have been trying to save us some bucks by getting Zoe to pack more often. Anyways, Wendolonia has some awesome ideas for packing a cool lunch!

Bento is a single-portion takeout or home-packed meal common in Japanese cuisine. A traditional bento consists of rice, fish or meat, and one or more pickled or cooked vegetables as a side dish. Haha, my kid would probably faint at the sight of that lunch! We had our own take on the bento! Containers range from disposable mass produced to hand crafted lacquerware. We used some airtight lock and lock containers and some pretty colorful silicone baking cups for ours! Although bento is readily available in many places throughout Japan, including convenience stores, bento shops, train stations, and department stores, it is still common for Japanese homemakers to spend considerable time and energy producing an appealing boxed lunch. Bento can be very elaborately arranged in a style called kyaraben. Contests are often held where bento arrangers compete for the most aesthetically pleasing arrangements. Kyaraben is typically decorated to look like people, animals, or characters and items such as flowers and plants. There are similar forms of boxed lunches in the Philippines (Baon), Korea (Dosirak), Taiwan (Biandang), and India (Tiffin). Everything is separated neatly in little compartments. I just thought it was a much better presentation than wrapping the sandwich up in saran or foil and throwing it along with a bag of chips into the lunch box.

Zoe's first bento!
I kept it real simple!

Red seedless grapes

Pirates Booty! AKA : cheddar puffs

PB&J finger sandwiches cut into pumpkin shapes with a cookie cutter. Sorry, no pictures of the pumpkins!

Cinnamon and sugar crisps!
The recipe = EASY!

Take a flour tortilla, spread a thin layer of butter over top, sprinkle with cinnamon and sugar mixture, slice in strips with a pizza wheel and bake in oven at 350 degrees for approximately 5-8 minutes. When the edges are slightly browning and the top is bubbling they are ready!

All together now!

For the record : She loved every bit of it!!!

Sunday, October 4, 2009

Sonya Conquers The Couch!

Sonya, 20 months old, learns to climb the couch! Keep in mind Sonya is standing on femurs that are bent at 90 degree angles. She is only 27" tall and the couch seat is 20" high up! She has some very impressive upper body strength!