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, January 14, 2008

Happy Birthday, Lauren! Update January 14, 2008

She's officially no longer a baby! Lauren turned one January 8. I can't believe how fast the first year goes by. We had a really nice party for her on Saturday and she of course loved all the attention. Obviously from the pictures you can see she enjoyed the cake!

Lauren has continued to make some really nice progress in her therapies. She is starting to cruise around slowly. She asserts her independence, and often doesn't want help with feeding herself, standing, etc. Just today she clapped her hands a few times, unprompted. She also said "Mama" today, but I am not convinced she said it purposely with meaning, as much as I would love to think that she did! She was whining for me at the time, so maybe...

Lauren does seem to be stuck in some 9 month behaviors. She still mouths objects and toys quite a bit, and she bangs objects constantly. Yes, that was a goal we were happy to see her achieve, but it is still a 9 month skill, so I am hoping she will keep trucking along those milestone markers. One of the therapists suggested it was typical for her to be at that phase, since she hasn't been crawling that long. She hasn't had the opportunity to check everything out in her environment to be past some of the 9 month skills. Her fine motor skills are not terribly impressive. They are improving, but with all the advancements she has made with her gross motor skills, they say not to be surprised that the fine motor skills and language skills have taken a backseat. She doesn't have much precision with her hands. She overshoots and pushes with her hands instead of grasping objects, and she doesn't turn her hands over well.

Here are some developmental goals I have for Lauren: waving bye-bye, turning hands over to look at palms, dropping objects in a container, stacking objects or placing them in rows, using a spoon better, cruising, babbling, recognizing family members' names, less rocking and head-banging.

All things considered, we continue to feel fortunate with all of Lauren's strengths, but we have much to work on!

11 comments:

Laura said...

I love the new pictures! She definately looks like she enjoyed her special day, and her cake!
All three of your girls are just beautiful.
Sounds like Lauren is really doing well. Michaela was, and still is, VERY independent and refuses to let anyone help her. I think her first sentence was "I do it myself"!

Katie said...

Happy Birthday Lauren!!
The photos are gorgeous, you have 3beautiful daughters!
Lauren sounds like she is doing great!!
xxoo

Penny said...

Happy Birthday Lauren!

Love all the pictures!

Keith banged a lot too until he learned how to play with toys appropriately. Sounds to me like she is doing great!

Tara said...

Happy Birthday Lauren! She is such a doll! (actually, all your girls are!). It sounds like she is doing great - that's wonderful she's trying to cruise around furniture and even feed herself. Sounds like you all are doing great things with her!!!! Keep us updated.

Every minute counts.... said...

Glad to see the new pictures. I love the one of all the girls at the top!!
There is always a never ending list to work on but enjoy the small victories..."mama" is great!

Happy Birthday Lauren!

Noel

Ava Jewel Leilana said...

Happy Birthday Lauren! I love all the pictures especially the one with her cake face.

Anonymous said...

Happy Birthday Lauren! Glad to see you doing well. See you soon!

J-Skin,Jayse, and Veronica

Nicole said...

Happy Birthday Lauren!

Your girls are adorable and Lauren sounds like she is doing just great. You will have so much fun this next year. Emerson is turning 2 in a few weeks and I am so sad to leave the "1's" behind. Take care and welcome to blogging!!

Nicole

Ava Jewel Leilana said...

I forgot to mention Ava Jewel use to head bang, I use to tell the doctors it was like she was trying to go through the walls. Well next thing you know she was doing it anymore. I like that you make goals for her, something I never even thought of and will be making my list before her EI evaul on the 30th, thanks!
Anna

abcmommy said...

Wow! She's absolutely adorable and she's doing so great!! My daughter Abbi is very close in age to Lauren, so we have many of the same goals. She's doing better with fine motor and just recently began crawling everywhere at 14 months. So, like you, I think that next "milestone" is always just around the corner!

Julie said...

Your girls are absolutely beautiful. You will be surprised how much she will do in the next year. When Noah turned 1 he wasn't even sitting up. He just turned 2 in January and he is walking, climbing ( age appropriatly, he is such a boy), and starting to jump up and down. She is going to take off now. You'll see.

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.