LPA Christmas Party

Yes, I am WAAAY late on my postings, but the end of this year has been a very busy one! Over the holidays I was working, going to class and trying to deal with all the stresses that is NOT suppose to come with Holiday Spirit and Joy!

In the meantime, our family blog was left to sit and collect 'dust' to say the least! Let me catch you up, blog by new blog, massive amounts of photos and as few words as possible! :o)

To start off with, since we moved back to Kansas, we have been enjoying everything that our local LPA chapter has to offer! In San Antonio, there was a surrounding chapter, but not as close to home as we have here. In early December, we went to the Scheer's house for our annual Sunflower Chapter LPA Christmas party, where Lilah had a blast! *As did all of us!!!* We were able to catch up with families that we missed over our nine month stay in San Antonio!

Here is my observer, Lilah, watching Katie and Blake take hits at the stacking cups.

There goes Katie, speeding up the stairs another time!

... and Lilah trying her hardest to keep up with Katie. The whole time going up she was saying, "Katie, wait! Katie, hold on! Katie!" It was so cute, and you can see Katie waiting for her!

Blake, showing me how much time I have left to take his photo!

Lilah found this cute shopping cart full of hand puppets and stuffed animals....

and this is what she picked out! No smile because it was getting late, over an hour past bedtime!

Duane and Misty (Blake's mommy) watching the kiddo's play with a toy garage set. They were so nice and knowledgeable! I felt like I was playing 20 questions with them, asking if I should do this with Lilah, not do that, what works, what doesn't work and all almost anything else you can imagine! They gave me great advice for her, for now and later in life-so sweet and understanding!

Maddie, Katie's sister, and Ashley-they tried to sneak out of having their picture taken! HA, gotcha girls!

Oh, did I mention there was a game on that night?! So where was my daddy and Dan Scheer (Katie's dad)? Yep, lounging watching the game!

And another picture of my Daddy, with Carson in the back-I think he was trying to get out of a picture as well!!!

This was one of the better pictures we were able to capture at the end of the night!

Denise Hayes, Misti Morley, Duane Jewett, Carson Hayes, Blake Morley, Gary Boykins, Myself *bleh!*, Lilah, Dan Scheer, Maddie Scheer, Ashley Sayer, Katie Scheer and Kate Scheer

We were so happy to be able to celebrate the holidays with our extended family!!!

Holiday Crafts

Since Trent is away for part of the Christmas season, I thought it would be fun to make some crafts for him to have while he is away. Lilah LOVES to do crafts at home, especially anything with stickers! This craft project was so much fun to do with her and you can find these little foam things at any craft store!

I like how the reindeers noses are REALLY sparkly red! Don't mind the drunken eye look, that is where Lilah wanted to put the stickers! My little crafter!

If you can't tell, I had to think of something to stick the reindeer too and it also had to be able to hang. What better to do than recycle?! I found an old gift bag and just cut the sides and bottom off, then attached the reindeer to the outside of the bag! It is perfect for hanging on the wall or even on a tree!

This tree took a bit more work than I thought! Because the tree has sparkles on it, the surface is not as smooth as is needed to stick all the way on! I also had to get used to the idea that the tree will NOT look like that in the picture if a 2 year old is crafting it. Who knew that snow could stick vertically?!

The star is also stuck down with double stick tape!!!

The imbalance of everything makes it that much more adorable!

Happy holidays to everyone!!!

Giving Thanks!

To start this blog off right, if some of you have not heard already- Lilah's doctor told us that her results from the MRI all looked good-but she will still need to be followed up in about 3-6 months. We usually go around the 5th month mark-just in time for a new doctor in Colorado! Ha! But, since our doctor is so great in TX, she has given us high recommendations for a doctor in Kansas and another doctor in Colorado- now just to inform insurance that these are the individuals that we will NEED to see-another mission!

On other news, we weren't able to celebrate Thanksgiving with Trent this year, but we did spend the time with most of my family.  I only have some pictures below, I guess my Nikon's flash is a bit much for some of my family to handle! hehe- and trying to get a great shot without Lilah pulling on my leg is a bit difficult to deal with as well! I hope you all enjoy the photos!

Make a Smilebox scrapbook

Like I mentioned before, we weren't able to spend Thanksgiving with Trent because he is now in Florida. But, he will be with us for Christmas this year, which I am excited for! Until then, we will be praying that he makes it through TACP tech school, Go baby Go!!! We love you!

MRI-AGAIN!!!

Yep, that is coming as no surprise for me. Lilah had an appointment with her Nuerosurgeon, Dr. Aronin today. For some reason, in the back of my mind, I had this feeling that she would have to get another set of MRI's done- not for the fact that we could ever go one whole year without having any type of medical something done - but I have been noticing she is snoring more often, louder than usual, and her shirts are even more difficult to get over her head than they usually are.

Well, I tried to attach a chart to here, but couldn't get the points plotted like I wanted to, so here are some stats on her head circumference:

5 March 2008:          51 cm                                           50%tile

24 September 2008 : 54 cm        98%tile     75%tile  *this was also one day pre-op*

7 Oct 2008:               53.6 cm    98%tile

18 November 2008:  54 cm        98%tile     75%tile

18 November 2009:  56 cm

As you can tell, I do not know what percentile some of her numbers are, but going by what the other numbers are, they are higher than what they should be.  If you were to see her numbers plotted on a chart, they would continue to peak and not curve smoothly like they should along the average curve (it does not matter if they are plotted on an average head chart or achon chart) the numbers just are curving right.

I am not sure what the next step is beyond her MRI's. Dr.Aronin wants to be sure that her brain is doing well, especially involving fluids on or around her skull and brain, and make sure things are developing the way they should be.

We picked a perfect time to move back home again! NOT! Although I do LOVE my family to pieces, and hate it when Trent has to leave- but her doctor is such a WONDERFUL doctor to have, and she knows what is going on involving her. Having to change doctors for only 6 months is very frustrating, especially considering what is going on right now- which no one knows! *BREATHE* that is what I have to keep telling myself! One thing at a time, one day at a time!

I will be sure to keep everyone posted as to what is going on, and how well she is doing. She is a trooper when it comes to getting MRI's done- I can't wait till she is at the age where she does not need them often and/or she does not have to be sedated for them! Grr, this tugs at my heart for her!

Please continue to keep her in your thoughts and prayers! Thank you for the support, hugs and love to you all!

Beautiful Colors...

Oh, the beautiful colors of fall! I have been wanting to take photos of Lilah and all the colors that have been outside, and the other day, the weather was to nice not to!

I wish the tree was smaller, this way she could have gotten closer to it, but all the smaller trees had no more leaves on them :o( so we had to make due!

I had to bribe her with candy to get her to stand on this rock. I'm also glad for good neighbors not running outside and yelling at me for being in their yards!

Look how big this tree is! It's hard to capture all of it and her in the same shot!

If the weather holds up, we'll be heading to the zoo soon enough! She loves being outside, and soon enough it'll be to cold to go outside! Oh, and mommy does not do snow! :oP

NATIONAL DWARFISM AWARENESS MONTH

I am 'stealing' this from another LP blogger friend, Tonya Sweat. You can find her blog at: http://knoahsarc.org/

She has a TON of useful and helpful information regarding LP and various links for support groups and programs offered.

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.

Are we there yet?!

Ok, this is Lilah at the VERY beginning of our trip! See how happy she is to go see family!

Trying to keep herself occupied with colors and paper... see Zeus?!

Yep, he's still trying to find a comfortable position to lay in...

Poor guy, he's to big for the back seat of our car! Oh well, they both did great on this long trip!

 And right here folks is the navigator of our expedition! I love this man so much, he only made me drive about 2 hours! Hehe Oh how I love you!!!

Thankfully that loooong drive there and back is OVER! We had a great time with family, love you guys!