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.

Thursday, October 11, 2007

Update 10/11/2007

Lauren had a very good visit with the pediatrician today. It was her 9 month well visit. The doctor was very optimistic when I asked about Lauren's development so far. She is very attentive and responsive, and is imitating sounds and movements, which is essential for learning. I discussed with him my need to be as proactive as possible, and ways to help her reach her fullest potential. I have been reading and researching as much as I can to see what I can do to help her. I know she will still have her issues, but I don't want to feel helpless with this diagnosis. I know there are many things I can do that will make a difference later to her quality of life. Recently, I have been trying to find ways to increase the pathways in her brain, which should result in a higher IQ. The doctor agreed, the more stimulation she receives, the better to create these pathways in the brain to facilitate learning and development. I am always looking for more ideas for raising IQ. Studies show, for example, that breastfeeding raises IQ by 3 points. (I have breastfed all my kids until the age of 18 months.) Other ideas I have read can raise IQ: baby sign language (this can be very helpful for Lauren, since speech is delayed in individuals with WS), stimulating memory (ex.: changing one component each week of an object she sees regularly, such as her mobile hanging over her crib), infant massage (I took a course when Katelyn was a baby), spreading out immunizations, protecting from neurotoxins in food and toys, proper iron intake (essential for critical areas of the brain to develop), playing classical music (classical music plays in Lauren's room every night, all night), music therapy or lessons, no television before the age of two, proper nutrition, and water intake (Lauren's physical therapist even indicated, when she saw me giving Lauren sips of water, that water facilitates brain function). I am skeptical as to whether or not some of these things can make a difference, but it doesn't hurt to try and we have everything to gain! After all, she statistically has a 25% chance of being of average intelligence. The doctor feels that based on where she seems developmentally so far, and because she receives therapy and we are starting with her so early, that her chances are even better than that. So I am extremely optimistic, even though I know she will have challenges that we will have to overcome. Who knows, maybe she will beat all the odds and be able to be very independent!
If you know of something else or have a suggestion, be sure to post me a message!!

1 comment:

Lisa said...

I love your stats chart how do I do that? Email me if you get a chance :) Lisaridgley@yahoo.com

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.