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.

Friday, December 14, 2007

On The Move! December 14, 2007

She did it! Lauren has started crawling. She started creeping forward a couple feet or so on November 13, then went a little further each day after that. Now she is on the move, making her way from room to room. Now the fun begins for Mommy!
Lauren continues to show a lot of progress with her gross motor and fine motor skills. She is able to pull herself to a standing position, and even purposely steadies herself so she can let go and stand alone briefly.

She is now banging two objects together. We worked on this in therapy for a long time, so it was a joy to see her "get it." She is also learning to adapt her hand to pick up and manipulate objects out of containers.

Lauren is now able to stay more focused. Her attention span is improving, and she seems quiet when she is "working," like she is concentrating. She is showing more problem-solving skills and an interest in figuring out what we are trying to show her.
So, I remain optimistic and am so grateful for her therapists who are dedicated to keeping her on track with her development.
We are looking forward to a wonderful first Christmas with Lauren!
Happy Holidays!

14 comments:

Penny said...

That's great news! Go Lauren!

Have a great holiday!

Every minute counts.... said...

I am glad that things are going well!!
have a Merry Christmas!

Noel

Tara said...

YEAH Lauren!!!!!

Ava Jewel Leilana said...

What wonderful news! Happy Holidays!

Andrea said...

Congratulations on Lauren's progress! My DD is 1yr and seems very similar to Lauren. She just started crawling and is working on standing up but still nonverbal. I would love to hear more about Lauren's attention issues. We live in Japan and cannot get therapy (we're trying) and I have concerns, if all goes well we'll see Drs. Mervis & Morris at the WSA conference next year but that is a long time to wait!

Laura said...

Yeah, Lauren! That's such great news. She sounds like she's doinf amazing.

Happy Holidays!!!!

Ava Jewel Leilana said...

We wish you all the beauty, cherished traditions, and joys of this lovely holiday season. May you be surrounded with the things you hold dear and enjoy most, now, and throughtout 2008.
Merry Christmas and Happy New Year from both of us - and remember that broken cookies aren't fattening!
Warm regards
Ann & Ava Jewel xo

Katie said...

How wonderful! Clever little Lauren!!!!
I hope that you guys have a wonderful first christmas as a family :) Happy New Year too!
xxoo

Gina said...

Hi Connie! I found you through Ava Jewel's Blog. Lauren is just soooo cute. She reminds me of my Gianna as an infant.Gianna was chubby like that too(lol). I look forward to the updates about your little princess!

Kim, Grandma to Ava,ws said...

So nice to meet another Michigander! Were you at the WS party in Troy this month?

Lauren is beautiful. Sounds like she is doing remarkably well. Isn't it just the cutest when they start to crawl?

Merry Christmas!

Lisa R said...

Way to go Lauren!!! Look out Mom

Kerry said...

Your Lauren is so adorable! I look forward to reading more about Lauren and your family.

Congratulations on the crawling!!

Whitney said...

Hey I just found your blog. Do you think Lauren can swing by Indiana and show Blake how to EAT!!! I'm so glad to hear she's not having that issue. Blake's 6 months old but has been in the hospital 4 out of those 6 months so his head control not where it should be and I don't think rolling is going to happen really soon but hey I'm not giving up hope! Blake's quite a chuck to right now!

Laura said...

Wishing Lauren a very, very HAPPY
1st BIRTHDAY!!!!

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.