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.

Monday, November 12, 2007

11/12/2007 First Meeting with Dr. Mervis

This past weekend we drove Lauren down to Kentucky to be evaluated by Dr. Carolyn Mervis at the University of Louisville. She is considered to be one of the leading cognitive experts on Williams Syndrome. I was nervous about what the evaluation would show, but I was very relieved at her findings. Of course Lauren is so young, it is hard to know anything for sure, but the doctor was very impressed with Lauren's gross motor/physical skills. She absolutely could not believe how close she is to crawling. She said she will still probably be delayed in walking, but she will probably walk much sooner than is typical for WS. She also said her non-verbal reasoning ability seems very good. Also the fact that she doesn't have any feeding problems is very rare (and that makes things so much easier for me-one major issue I don't have to worry about). We do need to work on speech, because as well as she does in the other areas, she should be babbling now and she hardly makes any consonant sounds. Of course she will still have the common problems for WS-I expect she will have delays and difficulties learning, maybe behavioral problems, and certainly medical issues. But she is really doing great at this point. It was also such a relief to have her seen by someone who really knows about the syndrome.
I did have a bit of a reality check in talking with Dr. Mervis. She said there are some WS individuals of "average" intelligence, but even those are low average-I was hoping Lauren would be one of the rare lucky ones who are considered average. But, we will continue to hope for the best, but also be realisitic that she will not be like a typical person cognitively. I have read there are some individuals with WS that do marry, have jobs, etc. But, as negative as it sounds, many say "don't get your hopes up." Well, it's hard not to! We will just keep working at helping Lauren reach every potential that we can. We will also continue to have Lauren evaluated at the University, probably once a year. They are so great there!

8 comments:

Every minute counts.... said...

You know sometimes you still have to dream that your child is the exception to the rule. You really do it with all of your children, why not the child with WS too?!

I love going to see Dr. Mervis and Dr. Morris, we go every year and go again in Jan. I love their perspective and the fact that they can say.." don't worry about this...worry about this instead!"

Noel

Ava Jewel Leilana said...

I am so glad your visit went well!

Laura said...

We also take the trip to visit Dr. Mervis yearly. The information we are given is worth it's weight in gold!
Glad to hear you had a good visit.
Have a wonderful Thanksgiving!

Tara said...

I am so glad you had a great visit!!! Happy Thanksgiving!!!!

Lisa R said...

Glad your visit was good...Your girls are BEAUTIFUL!!!!!!!!!!!!!

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About Me

My photo
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.