Penny is almost 3

Sorry I have been gone for so long. I was sucked into facebook. But I intend to disable my account come June 1 as I am going back to school and I do not want that around as a distraction. Here is my little princess. So much has been accomplished this year. She can now say a handful of words. Her favorite is "no" and she still calls me "baba" She can use about 70 signs, I wrote out a list for her preschool class and it astounded me.

Yes, she is going to school soon which is kind of why I want to get back into this thing. I was thinking that others that come after me may benefit from our experiences. Penny has been doing so great since October, no real health concerns, no roadblocks with services, that I didn't really have too much to post. But in a months time she will be in school!! Aye!

Her PPT is tomorrow. I downloaded the state of CT preschool ciriculum standards and found that she should be able to meet all those standards. She already can identify some letters and she knows colors, it is not a stretch to expect her to do so many other things during her first year of school. I know that in the fall, she will have school five days a week from 12 noon to 3:30 pm. Yikes!! I am going to miss that face so much. Well, if I have any readers around, tell me, what are YOU up to?

Penelope and CHD - Part III Chest Scar

Fact: 50% of people with Down syndrome are born with a congenital heart defect.
Penelope today, at 30 months, has this bump in the middle of her chest from the healing of her sternum. You can see the faint circle shaped scars from her chest tubes.

A close up of Penelope's chest scar. You can really see the scar from the left plural chest tube. She also had a chest tube in the middle after her 2nd surgery (for the total repair). There is that bump again.

Here is Penelope several weeks after her 2nd surgery, the incision is still healing.

This was probably the first bath Penny got when she came home, so about 15 days after her first surgery. She still had the steri-strips over her inscision. You can see the dark maroon circles a few inches under her nipples. These are the wounds from the chest tubes. The week after this, the steri-strips were removed at the cardio office and then a few days after that an infection grew in the inscision wound. I think that added to the appearance of her scar.
Yay! A clean slate. A picture of her chest before she was brought under the knife.

Penelope does not have her own pulmonary artery so she will need several surgiers throughout her life. I don't worry too much about her scar since there will be future inscisions to contend with. I hope that Penelope will grow to think of them as her battle scars.

WORDLESS WEDNESDAY

Our Visit to the CT Science Museum on 10/02/09

JUST ME AND PENNY FOR THE DAY.

www.flickr.com maxiak's CT Science Museum visit on 10/02/09 photoset

Wordless Wednesday. Halloween 2008!

Crazy to think that it is that time of year again. Yippee!!!

Only 2 months late :)

Here are the birthday photos from when Nathaniel and Penny and I all worked on his birthday cake. His birthday was July 7, 2009, but we had his birthday party on July 18 (or whatever that Saturday was ) This was the fateful day I broke my camera by the way. Penny is helping Mommy pick out the pans and bowls that we needed.

Nathaniel and Penny can't wait to get started!!

I can tell Nathaniel was trying to be very careful not to make a mess.

What a steady hand this boy has!

Penelope is so cute sitting up here stiring the batter. It looks like she is having a great time.

Now to reap the benefits of hard work and lick the beaters!!

Ta-Da!! The finished Star Trek cake for Nathaniel's 7th birthday party!!! At least he wanted something easy. Sheesh!

Penny had fun on Nathaniel's 1st day too.

So Penny climbed up on this chair all by herself, she has been doing that a lot lately. Her reward were the leftover pancakes from her brother's breakfast. Ymmmm

"Don't worry Mommy, I will help you fold this pesky laundry!"

FIRST DAY OF SCHOOL 9/01/09

Another successful day of school. Nathaniel got the teacher he wanted and he actaully said that his first day was "great!" I hope that this is a good year for him. Here are some pictures of the first day:

Nathaniel packed himself a healthy lunch that included some of his favorite vanilla yogurt.

He also packed his bag all by himself!! My boy is getting so big!

We have taken this pose each year since he started preschool 3 years ago. I should find some from past years and post them as well.

Here we are, the family waiting for the school bus to come take him away.

"Bye Mom, I can do this you know!" Me: "Have a great day my little wubby poopey bear!" ha ha ha

FlashBack Friday

Memorial Day - 2005

I am still a sucker for flattery

Yesterday, I had an awesome time with the kids at the beach at Camp Harkness. I was able to meet up with Holly and Sam as well as Laureen and Stephen. We really missed Melissa and Dillon but I know they wanted to be there. While there, I had a great encounter with an adult with Down syndrome. He was roughy fifty or so. I was outside of the bath house waiting for Nathaniel when he approached us and started talking to Penny, telling her how cute she was and such. He then looked up at me and asked me about her, what her name is and how old she is. So I told him of course. Then he began to talk to Penny again and while motioning up to me he said, "So, are you out having fun with your older sister?" I must admit I was confused at first and then when I realized he was referring to me, I did become a little flushed. I smiled so widely at this man and informed him that, "No, actually, I am her mother." He looked back up at me, then back to Penny, then back to me and said, "Nah, you look to young to be any one's mother!" I gushed again and thanked him for the compliment. He told me he was going off to swim then and we said our goodbyes. Imagine that!

www.flickr.com maxiak's pix for badge photoset

Mourning at St. Mary's

This is St. Mary's lake in Glacier Nat'l park that we visited on the 2nd anniversary of the death of my mother in law. Last year on this day, Scott's stepfather spread her ashes in this lake. I love Scott and Penny so much and it was hard to see Scott in pain on this day.

Saying good bye to our house

DSCF1963
Originally uploaded by maxiak

Sorry this is such an awful picture. We took this one in the morning before our departure and the sun was directly in our faces no matter which why we looked. :)

**Edit** Sorry Joanie! This is us leaving our vacation house that was in MT. We were sad to say goodbye

Little Hearts Picnic Pictures

Our good friend Katie from the pediatric cardiology's office at CCMC. She touched both our children's lives!!


I wonder what Penny is laughing at?


Penny is always happy to play with her boyfriend Dillon!!


These kids are starting to look like some tired babies.

That shortcake was so good she had to double fist it!!

Tired babies after a fun day at the Strawberry festival in Unionville!

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. . . .

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!!!

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