Welcome

Welcome to our blog. Our purpose is to keep family and friends updated regarding our family, and especially regarding our sweet baby Lauren.

Lauren was born with Williams Syndrome. Williams Syndrome is a small deletion of genetic material on chromosome #7. It happens randomly, occuring in around 1 in 7,500 births. So it's very rare and most people have never heard of it, including lots of doctors. People with WS have many similar problems and characteristics. Here are some of the main ones:

Characteristic facial appearance
Cardiovascular problems
Learning Disabilities
Hypercalcemia (elevated blood calcium levels)
Feeding problems
Dental abnormalities
Kidney abnormalities
Hernias
Hyperacusis (sensitive hearing)
Musculoskeletal problems
Excessively social personality
Developmental delays
Attention Deficit
Marked gross and fine motor difficulties
Marked visuo-spatial difficulties


How WS affects people can vary greatly. Lauren won't have every problem, but she will need lots of care throughout her life. So far, we are very fortunate that Lauren is doing very well. She does have moderate pulmonary stenosis, which is a narrowing in her heart that may require open heart surgery. This is very common in people with WS. She also receives physical therapy and occupational therapy twice a week. Her gross and fine motor skills are showing improvement.

I guess the good news is that people with WS tend to be very happy and friendly, but because they are "different," they have trouble having true friends, and I worry about her being teased and being lonely. She will most likely not marry, have kids, home, career-all the things a parent dreams their kids will be able to have. She will probably not be able to live independently, although some can work and live alone, but with support and supervision.

Sunday, October 7, 2007

Update 10/7/2007

Lauren has really been doing great. She is so happy! She is a great eater-she doesn't want much baby food anymore, she much prefers more texture, so I give her bits of meat, noodles, dry toast, and even donut holes that she makes a huge mess with!
Lauren is scheduled for another echo of her heart on Oct. 22. I am worried her pulmonic stenosis will be significantly worse, but hopefully she won't need surgery yet.
Lauren's therapy is going well, I think. She receives PT and OT twice per week. Her fine motor skills are not great. I think it is a combination of poor coordination with her hands, her pincer grasp, and a visuo-spatial problem. But she shows improvement, and I work with her a lot at home. She is so close to crawling! She gets in position and just rocks back and forth. She doesn't seem to know to raise one hand to get to the next step, and I think she also doesn't have the strength yet to balance on one side to move forward. But she will get there!
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2 comments:

Anonymous said...

Hey Connie and Biscuit!

This blog is a great idea! It is very informative. I never knew about Williams Syndrome. I am very happy to hear that she is doing well!

Best of wishes and keep the updates coming! I enjoy seeing how the other kids are growing too! SUPER CUTE!!!

October 22, 2007 at 9:26 AM
Anonymous said...

hi,my name is Kim and I live down the street from shelia and pat.
My nephew has WS also.Mitch is 7 years old.He was diagnosed when he was about 2.My brother and his wife had no idea..Doctors would ask if he was downs.....Mitch went to a special school til last year when they moved.He is regular ed,having a tough time ajusting.As with Shelia,I work with S.X.I kids,I am a parapro also..Very nice blog you have..your kids are so cute....take care,KIM

November 10, 2007 at 1:07 PM

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About Me

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Jerry and I have three daughters: Katelyn is 6, and in the 1st grade. She is in her 5th year of ballet. Kristen is 4, in pre-school, and switched from ballet to gymnastics and loves it! Lauren turned 2 years old on January 8, 2008. We live in Holly, Michigan.

DONATIONS ACCEPTED, NEVER EXPECTED, ALWAYS APPRECIATED

Lauren's extended family has graciously created a mutual fund for Lauren's future. We will care for Lauren as long as possible, but inevitably there will come a time when we are gone. We never want anyone to feel obligated to help Lauren, but there are many people who like to make donations to various causes, and would like to be able to help someone they know. Please know all donations are immediately deposited directly to Lauren's fund, and will only be used for her needs once we can no longer care for her. Donations can be made in any amount, at any time, by anyone, to the following address:

Edward Jones Investments
P.O. Box 395
New Baltimore, MI 48047-0395

Checks can be made payable to Edward Jones Investments with a note indicating it is for the Lauren Stark Fund. Questions can be answered by our Edward Jones Investments Representative, Pat Dorcey, at 586-725-6445, or post a message and we will get back with you promptly.