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.

Wednesday, March 12, 2008

Working Hard and Doing Just Great

Time goes by so fast. Before I know it, it is a couple months later and I haven't posted anything new to the blog. That doesn't mean there isn't anything new! Lauren is doing really great with her gross motor skills. She stands whenever she feels like it (which is often), opens and closes all the drawers and cupboards she can find, and has figured out how to get down from a step (feet first). She does some cruising along furniture, but usually only if she is properly motivated-usually by placing her Daddy's cell phone just out of reach!
Her fine motor skills are definitely getting better, and we work with her a lot. She doesn't overshoot so much with her hands, and she is much better at using her pincer grasp. She doesn't just dump objects out of a container. She will now take them out one by one, with more precision. She is also dropping objects into a bucket. We have worked on that a lot. I guess the release is an important skill to learn. We need to work on much smaller items, like Cheerios into an empty pill bottle. We still can't get her to stack objects or place them in rows, but she will get it eventually. She now refuses help eating and drinking. She just does not want to be spoon-fed! She makes a mess using a spoon, but she gets some in her mouth. I would love for her to start scooping the food with her spoon, but I still have to do that part for her. Actually, we both much prefer finger foods. It's less mess, and she gets to be independent. But she won't get better with a spoon that way! Also, we have noticed much less mouthing of objects. And we are trying to get her to draw with large crayons, but she has done very little of that.
We have been working on shoulder strength quite a bit, because it is so important in order for her fine motor skills to improve. We have her crawl up and down an incline, reach overhead, and she made up her own exercise yesterday. She stood in front of a toy box and opened and closed the lid about 30 times. That should have worn her out, but she loved it.
Lauren has been more vocal, but still no real babbling with consonant sounds. She does say "mmm" followed by "aahh," as she has done for some time. It is her complaint noise so she does it whenever she wants me. I want so much to think it is the beginning of "Mama." It's hard to say, and it's possible, considering how many times she says it when she wants me, but I have to be realistic. I guess either way, it will eventually turn into "Mama" with meaning. I better learn some patience, or I am bound to be disappointed. I know the speech will take her a long time. But I long for her to say it. Her speech therapist said today she is old enough to work with her more specifically on receptive language, and she probably won't attempt speech until she is understanding 20-25 words. I know she only knows a few: Mama, Dada, baby, kiss, no. I can't think of any others that I know she knows for sure. I also sign to her every time I say "eat," "drink," "more," "in," and "all done." She does shake her head no, and it does seem like she does it appropriately. I am constantly naming objects, and when we read books, I help her point or pat the objects we are naming in the book, and we also say the verbs that are happening in the pictures (swinging, jumping, etc.). I am so optimistic that all of this work will turn out one amazing individual (which is true, of course), but how much can I alter how severely WS will affect her?
I have been reading the posts on the WS listserve, and so many comment on the Omega 3 fats, and the cognitive improvements they cause. I don't know if Lauren is too young (14 months), but it is intriguing. I'll have to learn more. Anything I can do that will make a difference...

4 comments:

Julie said...

Wow she really sounds like she is moving along. Keep up the good work Lauren.

Jenny B said...

One of the first words Lucas (louie) understood was "kiss" as well! And we knew because he would actually kiss upon request. It was (is) such a blessing to have kisses from him.

Every minute counts.... said...

It sounds like you are doing a good job and both of you are working hard. About the talking, it will come, and when it does, it doesn't stop....she is a girl! It took Abi a littl elonger to talk but she can drive you crazy with the constant chatter now!

We have done fish oil pills since Abi was little, I can't say that it has helped for sure but I can't say it has hurt either.

Noel

Ava Jewel Leilani said...

It is so good to hear how well things are going! Way to go Lauren and momma!

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.