Wednesday, November 18, 2009

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!

Wednesday, November 4, 2009

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

Sunday, October 4, 2009

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.

Tuesday, September 29, 2009

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!


At the lake in Illinois

Yep, I found more photos folks! Like I said a few weeks ago, I am going to try and post more blogs, which means I have to space out the photos that I take!


Lilah and her boys at the lake: Uncle 'Ry-Ry' (Ryan), Uncle Philip, and Daddy. Oh this girl is sooo spoiled!


Yep, this is what her and daddy like to do now! He can spin her twice while she is in the air, and this is the best shot I could get of her spinning!


Lilah LOVES to do the ittsy-bitsy-spider, thus the reason why Grandma Vonda is patiently singing this song over and over and over again!


Waiting for the boat ride to begin!



Here with daddy, still waiting to see if this is the boat we are going to ride, or if we need to move on to the next!


This is the view of the lake from the balcony of a friends house. It was such a nice night out, the weather was perfect!!!


yea, I know that there are not to many pictures of me on here, but Trent actually captured a decent photo, so why not post?! I'm usually the one Behind the camera, not Infront of the camera!

I hope you have enjoyed our photos thus far! Oh and I want to send a very big
WELCOME HOME to our cousin Jeremy Ward. He just got back from his long deployment - WE LOVE YOU!!!

Thursday, September 24, 2009

A Little 'Petti'

Recently my mom and I have been making pettiskirts for the little girls in our family, and most of them have been worn on their first birthday. Well, this time I made one on my own! Whoot! It was a real time crunchers because I had about 2 weeks to do this, all while on vacation and working on school! You would think I would have more time considering Trent was on leave, but no sir!

Here is my most recent pettiskirt that I did for my little cousin's 1st birthday!






Her mommy got to choose the color scheme, and I think it turned out very well!



I hope to do a few more of these in the future, but for now will stick to here and there. They are very time consuming, as is any sewing project-but once you get the first few done, they get easier with time! Now if I can only finish the 2 quilts I have been working on!!!

Saturday, September 19, 2009

Trip to Illinois


As many of you know, we spent some time visiting with Trent's family. It was a great visit with them. Liah and I went to visit over Thanksgiving break last year while Trent was deployed, so they were waiting on Trent to get back from deployment before he would be able to see them again. The trips really aren't about us anymore, but we still enjoy our trips there! As you will see from the photos, the trip is all about LILAH!!!
I think at this point, her Papa Danny was ready to get off of the merry-go-round!
Lilah's face here was to priceless! She loved to go on the swings!

Spending more time with her Papa Danny.

Here she is with her Great Grandparents David and Judy Ward.

And even more photos with more Great Grandma's! Great Grandma Judy Ward and Great Grandma Monnabelle Beadles.

Looking so innocent on Grandma Vonda's lap!

And Grandma Vonda and Gary had to get there photo's in also! Oh goodness, she was full of photo's that day!

Thankfully the swing set and cousin Caryn were near by to help save the day from photos!


I wish I would have gotten more photos while we were there! But I was not able to, we were to busy chatting away and catching up with friends and family! I will have to 'steal' some photos from other family members in the near future and post those as well!!