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.

Sunday, September 28, 2008

Walking, Talking, and Amazing Us All

It was recently pointed out to me by a close family member that they have been checking for an update for some time now! Well, I do apologize, but time just gets away from me. So Lauren has just been doing great. She has made some great progress. She continues to be very healthy, and her heart is in great shape. The cardiologist told us in June that when she returns in December, that he doesn't think she will need an echo, and they only plan to do an EKG and exam. This is great because she has to be sedated for an echo, and of course it's wonderful that her pulmonary stenosis is gradually improving.

We went to see Dr. Mervis and Dr. Morris in Kentucky in August. It's always great to go there and get feedback from someone who sees enough WS to let us know how we're really doing. Well, they were pretty impressed. Dr. Mervis said Lauren's fine motor skills are especially good for WS at her age, and that fact that she points is unheard of. This is an important developmental milestone, and she reached it much earlier than expected, thanks to her occupational therapist. They tell me the earlier a child points, the earlier they can learn to read. Don't ask me to explain it, but they tell me in her therapies that things like her eyes crossing the midline of her body, and crossing her hands over to the opposite sides, and pointing, and other things will really affect her learning and reading. It's pretty interesting and I am sure glad they seem to know what they are doing.

Anyway, Dr. Mervis and Dr. Morris indicated some of Lauren's abilities, and lack of difficulties, are "unheard of." Dr. Morris said, "Didn't she read the book [about WS]?" And her pediatrician once said, "You almost wouldn't know she had WS." I don't know why we have been so blessed, but we are so grateful.

Lauren has been walking since July. She started taking steps in May, but she took her time getting comfortable with it. Her balance is one of the things that is unheard of, and she has a normal toddler gait. Now that she is walking, she has really made improvements with her language ability. The therapists said this would happen. Kids often can't concentrate developmentally on too much at once, and learning to walk takes a lot of effort. Dr. Mervis said her communication skills are above average, in that she gestures and can follow a pointed finger. But her language was only average. Since our visit, she has really made a lot of progress with speech. She imitates quite a bit of what we say, and says lots of words, unprompted. Here's what she can say: Mom, Daddy, Hi, meow, woof, moo, this, on, uh-oh, up, hot, ball, balloon, mine, and more. She repeats the following words when we say them: sock, teeth, cheese, book, nana (banana), snack, spoon, bye-bye, out, and flower. She understands an impressive list of words and phrases: peekaboo, No, in, kiss, hug, baby, not in your mouth, give me, where is, use your spoon, nice, sit down, stand up, more, what does a cat/dog say, close it, do this, nose, walk backwards, and hello. If you say any of these things to her, she clearly understands what you mean. She also uses some sign language, and we continue to teach her more signs.

Our therapists aren't going to let her slack off just because she is doing so great! Here are some things they have her working on for Physical Therapy: jumping up, walking over a line on the floor (to improve downward gaze for height differences), walking upstairs instead of crawling, prepostional movements (up, down, over, under, etc.), and running. Occupational Therapy: twisting off caps and removing lids, putting Cheerios in a small-mouthed bottle, and then dumping them out, using fingers instead of palms to put large wooden puzzle pieces in their slots, stringing large rings on a rope, and using a fork to stab food. Speech and Language Therapy: a new animal sound each week, many new directions (we say and demonstrate actions such as clap your hands, touch your nose, pat your head, etc. -eventually she will know what they mean without being shown), and songs demonstrating in, out, up, down, fast, slow, etc.

Lauren has come so far, but there is always more to learn and hurdles to overcome. I know she will still have many problems and difficulties in her future, but we have finally reached a point where we have been able to just enjoy her and not worry so much. We have accepted her syndrome, and it's still scary and causes us worry, but we know we are very fortunate. No one knows what learning difficulties she will have in school, what social problems she will have and whether or not she will make many friends, what her level of independence will be, and whether or not she will be able to be employed, etc. But, right now, she is so happy, and we are so happy.

4 comments:

Every minute counts.... said...

I am so happy for you and your family. Glad that medically things seem to be going well, and developmentally things are going well too. Great news.
Thanks for the updated pictures, Lauren is beautiful.

Noel

Rachel said...

Hey there! This is such a great way to learn more and understand where Lauren is in terms of her development. With so little time, hectic lifes, etc. it is amazing to me that you find time to do this. I think I can speak on behalf of all of us that we really appreciate it. She is such a doll!

Ava Jewel Leilani said...

I love all the pictures, you family is truly beautiful! Congrats on all the good news1

Julie said...

Glad she is doing so well.

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.