HAPPY BIRTHDAY PENNY!!!

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.

YOU WERE ABOUT 15 MINUTES OLD IN THIS PHOTO

ABOUT 10 DAYS LATER AT CCMC NICU, THIS WAS THE FIRST TIME YOUR BROTHER WAS ALLOWED TO HOLD YOU. HE WAS THE PROUDEST BIG BROTHER EVER. AND HE SITLL IS. . . .

DOWN SYNDROME OPENS NEW WINDOW ON CANCER

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.

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.

SHE'S BAAAAACK!!

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!

Fun times at Wickham Park

Baby Steps

First off, I hope everyone had a lovely Easter. Ours was really wonderful. I had Scott's sister Wendy over with her husband and their grand daughter Aarylin.

Penny is just so close to walking and I am so excited!! I don't remember this whole process with Nathaniel, probably because it was so quick - no time to enjoy it. Penny has been standing up in the middle of the room countless times a day and more often then not, she will take one little hop-like step. She then shakes her hands with excitement and pride, then falls. It is so adorable. Sometimes she takes 2 steps. Today after her nap, I walked her one-handed from her bedroom to my bedroom and then 2 steps away from my bed I let go. She took the two steps to the bed so she could get closer to her daddy. Yesterday morning, she took 5 steps from the dinner table toward me. I just love her so much!!

Her 2nd birthday is coming up next month and I really want to have a super birthday for her. She had been through so much and I am really looking forward to celebrate the anniversary of her birth. I just can't think of the perfect idea yet. Anyone who wants to come to the Hartford area and celebrate Penny's birthday with me shoot me an e-mail. It will be on May 30. Again, just not sure what the festivities will be yet.

So Close to Being Done!

You can scroll down a little bit to see the bathroom before pictures. I have to find a new outlet face plate (the one I got to match the light switch didn't fit, go figure) And the faucet doesn't actually dispense water yet. But BABY STEPS!!!

Another Day at the Museum

We were so lucky to hang out with Amy's cute family. Here is Chloe, she is about 7 months old or so and she is such a cutie!!!

I will post more pictures soon, but Flickr is bugging out on me!

More important notice.

Because I am bored at work.

The fact that I am going to Montana a few days before I am laid off has not escaped me.

Play Date for Penny

www.flickr.com

A couple of weedends ago Penny, Nathaniel and I went to her new friend Dora's house. I hung out with her mom, Jill and Nathaniel got to play with Nicholas, Dora's 6 year old brother. Nick enjoys Bakugan and Legos just like Nathaniel. Penny and Dora had a great time playing and checking each other out. They both love, love books. Dora is such a little cutie pie and I can't wait for our next get together because I know that they really had lot of fun together and Jill is just such a nice and wonderful person. Thanks for having us over Jill!!

Wordless Wedsnesday

Go Dillon

Please pray for an uneventful surgery for Dillon and a quick recovery. He is have his g-tube placed today God willing. This will be huge for him!

HAPPY ST. PATTY'S DAY

Who Was St. Patrick?

"St. Patrick, the patron saint of Ireland, is one of Christianity's most widely known figures. But for all his celebrity, his life remains somewhat of a mystery. Many of the stories traditionally associated with St. Patrick, including the famous account of his banishing all the snakes from Ireland, are false, the products of hundreds of years of exaggerated storytelling.

Taken Prisoner By Irish Raiders

It is known that St. Patrick was born in Britain to wealthy parents near the end of the fourth century. He is believed to have died on March 17, around 460 A.D. . . ."

You can read the whole story by clicking on the title or here.

AND YOU CAN TAKE THE IRISH QUIZ HERE. It doesn't test how Irish you are, just how much you know about Ireland. :)

Blankies for Babies

I have wanted to post on this for some time now. Jaxson's mother Lacey, who has so much on her plate already, wants to comfort other children that may be going through a rough stretch of medical concerns with her blankets. I think it is so wonderful that she wants to donate her time and materials for this. I personally know a mother (and her kid) that has benefitted from Lacey's thoughtfulness.

So if you think your child would like a blanket or you know a child that might need a blanket spread the word. You can also go onto this site and donate. Every $ counts and it helps to offset Lacey's expense of materials so she can get more blankets out there!!

I won another award!!

Thanks to Joanie I now have another award. I guess you get this for having a good attitude or some crap like that. You know, "When life gives you lemons, you make lemonade."

So, I would like to hand this out to a few people I know that just have a swell attitude about life, even though there have a been a few bumps in the road of life.

Melissa from Having fun at home with Master Dillon.

Lacey from Jaxson's fight.

Jessica from Raising Joey.

Cammie at The Helflin Family.

Michelle at The Zoromski Chronicles.

Erin from Adelynn's Journey.

And Rene at Life with My Special Ks.

Now the recipients can pass this on to as many or as few blogs as they want, maximum of 10! You will need to link to the other person's blog. Lacey, for the love of all that is good. We will figure this out together ok! and then you need to comment on their blog so that they know to come find this award.

Congratulations winners!!

Museum Visits

Nathaniel, Penny, and myself have been taking advantage of our CT Museum pass. For a yearly membership fee, we have access to several musuems across the country. We have been to the Lutz serveral times. Penny really gets engaged even though she is not yet walkin; however it is not too big so I don't feel that she gets overstimulated or anything.



Here is Penny checking out the model cow with working udders!!



Now she is constructing her own farmyard.



Nathaniel brought Penny "under" into the yellow submarine that they have there. She loves that thing.


I think Penny could stay at the helm (is that what they call it on a submarine?) and press buttons all day! One button plays The Beatles "Yellow Submarine."

So much to catch up on

So I have not disappeared off the face of the planet. I apologize for being away for so long, but there has been so much to do. This week I have started a bathroom remodel project.




Not that I want to complain or anything, but why, why can't anything be easy. This wall paper backing is NOT coming off easy in any way. I have tried to commit about an hour every day after work to scraping the paper off the wall, but I can't even get one tiny wall done in an hour. Please excuse my giant butt!! But, hey, I have a wonderful little helper. For now, we are going to paint the walls. Color is TBA, and I want to change out the vanity top and the sink. It has seen better days.

The glaze has been literally popping off the sink bowl. It is a creepy noise when you are on the toilet and then you hear this noise like chipping glass. You can't see it in this picture, but there are spots where you see the cobalt metal that is rusting.

My Miserable Little Girl

That little girl was the most desperate, miserable little baby I have ever seen tonight. Part of me wished I could provide her comfort, the other part wanted to pass this off as possibly the onset of the terrible twos. Scott and I were unable to put her down for a nap until closer to 3:00pm. On it's own, that should not have been enough for the meltdown that ensued. She woke herself up around 5pm. At the time she woke up I considered that a plus. Penelope is a much crankier baby when she is woken up by an external source. Scott brought her downstairs and we both took turns trying to calm her down. Scott went to make dinner and I cuddled with her on the couch. Any move I made elicited screams and cries from that little girl.

Then dinner time came. Typically, when Penny sees the highchair, we get big smiles out of her. However tonight there was only a lukewarm reception. I was able to buckle her in without resistance. Then. The food was served. I do not believe I have ever heard her scream and cry as loudly and for as long as tonight. Every attempt to feed her brought more screaming. I took her out of the highchair and had her sit in my lap a bit. She calmed down, but just. I admit I was a little tired of her behavior so I put her on the floor. There. She had such an awesome temper tantrum. She rolled around on the ground. She sreamed; she flailed around; she breathed in and out so fast I thought she was hyperventilating. I tried to ignore her and go back to my dinner. After I said, "Welcome to the terrible twos," Nathaniel was a little amused since he knew she was still only one year old. Of course he had to correct me.

We tried to put her back in the high chair and feed her yogurt to replace the offending spaghetti and sauce I had attempted to poison her with earlier (any one who has ever fed my daughter knows that marina sauce can never do wrong, she would eat absolutely anything if it has tomato sauce on it.) Even the yogurt upset her so badly. In between bites we couln't tell if she was holding her mouth in agony or trying to sign "eat," but we kind of gathered it was the former. Oh the horror!!

Scott and I finally blamed her very unusual behavior to her molars that may be coming in. Being a little tired and cranky would possibly be enough to put her over the edge when the severe mouth pain began to come in. Penny had been grabbing at her ears and her mouth all weekend, and I have been wondering about the 2 year molars. So we gave her some Tylenol and put her to bed with a bottle. I do hope that she feels better tomorrow. Poor baby!!!