Friday, May 29, 2009


2 years old
I can't even believe that at 6:50 am this morning it was 2 years ago that my life changed forever. My dear Penny, my heart is filled with love for you. I hope that many great things come for you this year.



Wednesday, May 27, 2009


By Liz Szabo, USA TODAY
People with Down syndrome confront a wide range of health challenges, including mental retardation, congenital heart disease and hearing loss. Yet doctors have long wondered why this community is protected from one of the most devastating illnesses: cancer.

Although people with Down syndrome are at increased risk for leukemia, they rarely develop solid tumors, such as cancers of the breast or colon, says Sandra Ryeom, a researcher at Children's Hospital Boston and author of a study published online Wednesday inNature. In a study of 17,800 people with the disorder, the mortality rate from cancer was less than 10% of what doctors would expect to see in a general population.

In the past, doctors assumed that people with Down syndrome simply didn't live long enough to develop solid cancers, because many died in their 30s, Ryeom says. Yet children with the disorder don't develop common pediatric cancers, either, such as neuroblastoma or bone tumors.

The answer to the mystery probably lies on chromosome 21. People with Down syndrome have three copies of the chromosome instead of two. That extra chromosome — and extra copies of disease-causing genes — are responsible for many of their health problems. But researchers suspected that the extra chromosome may protect them indirectly by preventing tumors from growing new blood vessels, she says.

In experiments in mice and in human cells in lab dishes, Ryeom and her colleagues found two genes on chromosome 21 that block this process, called angiogenesis. She suspects there may be several additional genes that block angiogenesis, as well.

Interestingly, angiogenesis isn't involved in leukemia, the cancer of the white blood cells that's more common in Down syndrome patients, says Jessica Pollard, a pediatric oncologist at Seattle Children's Hospital not involved in the study.

Doctors already treat cancer with a variety of anti-angiogenic drugs. The first of this new class of drugs, Avastin, was approved in 2004.

Ryeom is trying to develop additional cancer therapies based on her research.

Roger Reeves, a professor at Johns Hopkins University Medical School, says he's working on a drug based on another anti-angiogenesis gene on chromosome 21, called endostatin. Doctors already are testing that drug in humans.

Pollard describes Ryeom's findings as intriguing but says researchers need to do more human studies.

Tuesday, May 26, 2009

Has anyone else done this?

Information on PECS (picture exchange communication system)

"The Picture Exchange Communication System (PECS) is an augmentative communication system developed to help individuals quickly acquire a functional means of communication (Bondy and Frost, 1994). PECS is appropriate for individuals who do not use speech or who may speak with limited effectiveness: those who have articulation or motor planning difficulties, limited communicative partners, lack of initiative in communication, etc."

My good friend Audrey, is employed at a school that utilizes this system. She is very enthusiastic about it and gave me a bunch of resources for me to learn about this program. Audrey mostly works with autistic children and PECS seems to be helpful in her experience. The last time our ST came out she introduced us to this as well. There hasn't been enough studies to show if this encourages or inhibits verbal communication, but for those that are verbally delayed, any alternative method to communicate has to be good. I can't even imagine how frustrating it is not to be able to communicate my needs and wants.

Basically, you have this board with Velcro and you stick pictures of people or things or ideas (like "want") and the child will come over to the board, grab a picture to exchange it for the real thing. The transfer has to be immediate, almost overlapping, to ensure that the association is strong. Sarah (Penny's ST and Marni (her sped) were both very impressed at how quickly Penny got the idea of this method. . . and her strength to rip that picture off the Velcro. That was pretty tough. And Penelope didn't even tire of these exercises for a good 30 minutes. I think that the B23 office is making her a board of her own. Hopefully, we will have the time and energy to be consistent with this sort of thing. As of now, Penny knows to walk over to our pantry cabinet, stand at the door, point and wine until she gets a snack. How cool would it be if she exchanged a picture for her graham cracker?

If anyone Else has any experience with PECS I would be interested to hear about it. Thank you.

Sunday, May 24, 2009


How did a whole month go by?!!??? That is truely insane to me. I guess I have been too busy at work to slack off and keep up with my blog :)

Penny is the most wonderful child in the world. Every day I think about how remarkable she is. (Well, ok, maybe not last weekend when she cried from 9p to 3a straight and then was up again to greet the day at 6a on Sunday ready to go!! Turned out she had an ear infection.) It is just so neat to see the progression it takes for her to learn how to walk. Just 2 weeks ago she would take 5 to 9 steps or so, fall and then crawl the rest of the way. Last week, she was still at the 5 to 9 step maximum, but when she fell, she would stand right back up and walk another 5 steps, fall, then get right back up and walk some more. SO EXCITING!! This weekend, she goes for it all the time walking 10 steps is the norm; she can just about transverse our living room without taking a digger.

Yesterday we went to Bushnell Park in Hartford, there is a carousel from 1914 that is actually quite fast. Penny and Nathaniel really enjoyed themselves at the park. In between rides, they played right outside the carousel building where there is a decent sized playscape on a spongy material. Penny enjoyed the slides; she is so daring, she wanted to go down head first all the time. This girl is crazy!!

Right now, I am watching her feed herself little pineapple tidbits from a dole fruitcup. She has her little fork, and she makes these cute stabby motions at the food. She fishes until something finally sticks. Then she generally holds the fork up to marvel at her accomplishment with an "AHHHH-OHHHHH," and then proceeds to eat.

Still not too much progress with the verbal communication, although it is clear she completely comprehends just about everything I say to her. I talk to her like she is a typical 2 year old, as I have learned not to underestimate her in that department. She uses about a dozen signs regularly. The words that she can say all start with "D" such as dada, down, duck, dog, and done. Pretty much all small mamals are "Dogs" although she can discrimate when she puts her mind to it. She can sign "cat" and uses it when she sees one in a book, but in person she will either say, "dog" or make a very pronounced hard "c" sound. In any event, her eys get so big and wide they look like they will pop right out of her head. She is so dang cute.

She is content to play with her blocks for an hour at a time, even by herself while I get things done, but of course she prefers company as any child would.

My heart melts each time she kisses me. Basically this is a wide mouth contact on my cheek. But I can tell she is proud of herself too, because these kisses are given on command, and again, she is able to demonstrate that she understands me, and that is a cool thing.

So where have I been? Well, working 40 hours a week as usual. Monday night is libray night for me and Nathaniel. Tuesdays I do have off, so no excuses there. Wednesday night is soccer practice for Nathaniel, Thursdays was swim lessons: I had parent and child swim class with Penny and Nathaniel had his level 2 class at the same place and in the same time slot. I was very excited about it, but Penny was sick and missed the first 2 or 3 classes. Then we went to a class, but the following 2 weeks were canceled. They had closed and drained the pool to change the filter. The very first class after that was the first day water had been added to the water and it was FRIGID!! Penny lasted all of five minutes before she was a purple baby. Of course being of concern for her heart defect, I didn't push the matter. The last class was supposed to be last week, I think, but we kind of dropped out of it. We will pick it back up with fall classes. Friday nights were cub scouts, as I am the den leader for this fine group of boys. 5/15 was our last official meeting, although there will be plenty of activities through the summer. Our Saturdays and Sundays have been filed with various playdates and museum visits. I will have to tell you about our visit to Boston on another post.

Anyway, I just wanted to finally check in with you people. I have pletny of video of Penelope walking, but I just need to get in on the pc. Oh, yeah, SHE IS TURNING 2 ON FRIDAY! I can't believe my baby is turning 2.

I hope everyone has a fun and safe memorial day!