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

21 Things About Penny That Are Not About Down Syndrome

I admit, sometimes I need some inspiration for blog posts (don't we all). So I thought I would post 21 things about Penny that don't have to do with Down syndrome. This is not an original idea to me, but I like to keep it going.

You can read the original to see how she has changed HERE.

**REVISED FOR 2009**

1. She still has cradle cap and she is 29 months old. When will she get rid of this??
2. Penny loves to play "I am going to get you!" A game where she is chased by one of us as she runs and laughs as hard as she can.
3. She loves it when she gets attention from her older brother Nathaniel, but. . .
4. Does not like it when he tries to pick her up or hold her, she prefers his attention while she is in mommy or daddy's arms.
5. Penny will eat anything if it is in tomato sauce. Including vegetables!
6. She likes to lick and kiss things like the wall, the chair, my leg. . .
7. She loves music and likes to dance along.
8. Penny thinks it is funny when she throws food on the floor. It is her way to defy us or something. Now she tries to be sneaky about it though and waits when we are not looking.
9. She likes going "bye-bye in the car." When she hears that phrase she immediately begins to dig for her purse and puts it on and walks to the door.
10. Her feet stink all the time and we have no idea why.
11. She likes to share her food and drink by putting things to my mouth or her daddy's mouth - even when the food is soggy with her saliva.
12. She can say "dog!" when she sees one in a book or on TV; in person, she loves them!
13. Penny has been pretty much sleeping through the night since she was 3 months old (with a few exceptions when she is sick or after her 2ND surgery), but. . .
14. She wakes up a 6 am and we cannot get her to shift her schedule even when we put her to bed later and later.
15. Penny loves Spongebob Squarepants, who doesn't???
16. She hates it when I rub her hair, she is probably afraid I am going to pick at her cradle cap or something! lol.
17. Penny likes to play with tea set and then put the cups and such back in her container.
18. She LOVES her daddy and he will win every time.
19. She has a babysitter that comes over 3 days a week and her grandmother watches Penny 1 day a week.
20. Her favorite word is "Dada!" It is not my favorite word when she yells it over and over again at 6:00am.
21. Her mommy and daddy think she is the cutest little girl in the world!

MY 250TH POST!!!

Thanks to Tricia and her muse, Georgia , I have a mission for October. As many of you know, October is Down syndrome awareness month and I am so excited that my 250th post kicks off the month!! Yay!! So check back often. There may be some oldies but goodie posts recycled, but mostly, there will be some new stuff for you to check out.

YOU CAN CLICK HERE TO READ THE RULES AND JOIN FOR YOURSELF!!

From the mouth of a seven year old.

Nathaniel and I were driving home together from cubscouts when he said to me, "Mommy, I would like to have 17 more babies."

Me: "17. More? From me?"

Nathaniel: "Yes."

Me: "Well, I am 30 right now, and usually woman stop having babies around 40 so I don't know that 17 more is possible."

Nathaniel: "Ok how about two more?"

Me: "Well, if your daddy and I are able to buy a house we may want to have more, but we were also thinking about adopting since there are so many children that need a home."

Nathaniel: "What does adopting mean?"

Me: "Well, sometimes a kid doesn't have a mommy or a daddy and so they live somewhere that can take care of them until a new mommy or daddy comes and decides they want to love them and take care of them."

Nathaniel: "WHAT?!?!?! Do they live in cages or something? Do they get to eat?"

Me: "Usually they don't live in cages. They go to school and they eat too. They just don't have that one mommy or daddy that can give them love like you have."

Nathaniel: "Does it cost money to adopt someone?"

Me: "Well, the kid is free but you have to pay for the paperwork."

Nathaniel: "WELL LET'S GO RIGHT NOW! Let's go get one of these kids and bring him home right now!"

(SIGH) The world must seem so easy to this boy.

Have you laughed yet today?

OK this is completely off topic, but seriously, THIS IS FUNNY!!!

THE RESULTS ARE IN!!

I know there is still 5 days until the 2009 CDSC Buddy Walk, but I am so excited to announce that so far, Team Penny Girl has $625.00 in donations for the CDSC. Wow!! I am really humbled at that. Thank you to everyone who was able to donate. And I will see a bunch of you at the park as well. Thanks for your support!

I guess donations can still be made until the end of 2009 as well.

Prayers for Melissa

In about ten minutes, Melissa's back surgery will begin. I pray for a speedy recovery and let us also hope that your pain is elimanated!! I love you Mel! Get better soon.

UPDATE: Melissa had a quick surgery and was on the road to recovery by 11am. She did not react well to the anesthesia; however, she is still in great spirits!

Stuff that makes you say "What?!!"

I heard a story similiar to this last year in NY and could not believe it. It is crazy to think that this stuff really goes on. If you don't want your child, then give him or her up for adoption!!

http://media-dis-n-dat.blogspot.com/2009/06/oregon-parents-sue-over-costs-of.html

My First Time

Last night, my family and I braved the crazed masses and drove to McDonalds last night for our school proceeds night. I like to get there early to find a seat in the play area. Otherwise, I don't see Nathaniel for an hour. Of course I had to keep Penelope restrained in her highchair so that we did not run the risk of her being trampled by the fifty or so screaming lunatics. After she was done eating, I told Scott I was going to let her loose in the main area of the establishment so she could stretch her legs.

Her journey to explore started out harmless enough. She waved; people waved back. She smiled; people smiled back. She let out a ton of "oh" and a bunch of "ah". The appropriate amount of positive reception was met. Then an employee gave her a balloon and boy, did she kick up the cuteness a notch. Everyone nearby marveled at how happy that balloon made her. Penelope continued her amble through the tables when a boy, probably 4th or 5th grade, sitting with his friends only, POINTED AT MY DAUGHTER AND LAUGHED. He yelled, "LOOK AT HER FACE, ISN'T IT FUNNY LOOKING!" Penelope was already on to the next row and I was pressed to chase after her so I didn't have too much time to react. I was able to discern the rest of his group chuckling and they agreed, "She does have a funny looking face."

I moved on. We are talking ten year olds. I wish one of their parents were around to say something. I choose not to this time. My first time. Boy, how could I let ten year olds dampen my mood? Even for just five minutes.

Wordless Wednesday. Halloween 2008!

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

Always Remember 9/11/01

It is incredible to think that eight years have passed since that crazy day that took so many lives, and so much from the rest of us. Growing up, I often heard grown-ups speaking of where they were at the time Kennedy was assisinated, and I am sure their parents had their own moment of rememberence. That day that changed your life forever. I am curious to know what other people remember on that day and how the knowledge unfolded in their day.

At this time I was commuting to UConn as I embarked on my final semester. As a part-time student, 22 years old, and care-free living with my parents, I had the luxury of sleeping in on this day. I have had a half dozen dreams in my life time that have stuck with me to this day, the earliest from when I was 4 years old and I drempt that all my family members were mosters from B-rated horror movies. Yes, Gramma, you were the witch! Dad, you were a short version of Frankenstein. ha ha.

On this day, Tuesday, September 11, 2009, I woke up from an aweful nightmare that was not about to end. My dream was that I was carrying twins. I just sort of had this feeling of always being pregnant in my dream even though this was clearly a unique experience to me. I was so happy in my dream at the prospect of becoming a mother for the first time. My joy quickly faded when I delivered my children. One baby was born still and I was devestated. I hope to never learn the despair one accepts if this were to happen in real life, but for me, in this dream, it was so real. The other baby, a boy, was born of normal size, but at a developmental level of a teenager. He refused to speak to me, he refused to nurse of my breast, and he hated it when I held him. I wept and wept in my dream, why would my baby truly hate me? He was able to speak to strangers and appearently didn't need to eat. In sum, my own flesh and blood did not need me! This was truly such a nightmare.

I woke up around 10 am with this aweful feeling of despair and anxiety in my chest. I couldn't help but wonder about my ability to be a mother when and if the time came that I would be bleesed with such a miracle. Would my baby hate me right off the bat? Would I be able to nurish my own children naturally? Silly things for a 22 year old college student to feel, right?

Going through the typical motions of the morning felt distant to me, but I had a couple of errands to run so I tried as best I could to shake this feeling of despairation. My mother must have been out of the house as I am sure she would have told me what had occured if I ran into her. I just remember getting into my car, turning on the radio and hearing that the state of Connecticut was in a state of emergency. I seriously stopped my car and looked up at the sky once more to confirm that there was no blizzard going on in September. "State of emergency?" I said out loud, "What for, there is no inclement weather. The sky is perfectly clear." Up until this date, I had only known for that message to go out during a serious Nor' easter blizzard. I continued to listen on my drive to the pharmacy. Nothing specific was announced on air, so my confusion grew. I went into the store and bought what I needed. When I got back into the car, the details finally unfolded for me. I don't even think I got out of the parking lot. "Why would people want to do this?" "How was I able to just go into a store and buy something; what gives me the right to go on with my life 'business as usual' when so much tragedy transpired?" I was sobbing in my vehicle. This was really just too much.

For the rest of the day, I sat glued to the television, never desensitized to the horrific images. Class the next day was a blur and as the weeks followed, hundreds and thousands of flags everywhere demonstrated a unified sense of patriotism. The lives lost in the aftermath by the city workers furthered the tragedy. My father-in-law is a fireman for his town and they are such a brotherhood, that he felt like it was his family in the trenches.

Many of the lives lost that day were people going about their own normal day to day business. Many of them were about 130 miles from me. Please remember!! Say a prayer for those families that lost that day. Eight years is still not enough time to heal completely.

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!

Team Penny Girl Sponser #2

I just received word that our TEAM PENNY GIRL T-shirts just arrived and I cannot wait to see them. This is so exciting.

So, . . . I just wanted to give a shout out to our other TEAM PENNY GIRL sponser, Aero- Med, of our own Glastonbury, CT. They donated a generous amout to the CDSC in honor of Team Penny Girl as well as paid for the printing of the T-Shirts that Harbor Productions donated.

THANK YOU SO MUCH ALLISON AND THE OTHER PEEPS AT AERO-MED!!
YAY!!!!!

Who loves to See Penny Dance?

Off To the Farm!!

I am so excited to be heading off to the Fish Family Farm day to benefit the Lutz museum this afternoon. I know that Penelope and Nathaniel will have lots of fun!

TEAM PENNY GIRL SPONSOR

click to enlarge

I am so excited!!! Team Penny will be sporting some beautiful T-shirts donated by Harbor Promotions/ Harbor Publications, Inc. of Madison, CT. I was moved to tears when I learned that this company wanted to help us show our spirit for the CDSC Buddy Walk.


You can also visit them online at http://www.harborpromotions.com/. Thank you Harbor Promotions!!!

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

And I thought we were in the 21st Century People!!

As published by the Wall Street Journel
By Sue Shellenbarger
An Ohio Supreme Court decision allowing a breastfeeding mother to be fired from her job for taking breaks to pump milk has ignited an angry buzz among bloggers.
The decision came in the case of LaNisa Allen, a temporary warehouse laborer for Totes/Isotoner Corp. in West Chester, Ohio. Ms. Allen was fired after taking unscheduled breaks from work to pump milk. She fed her five-month-old baby before reporting to work for her 6 a.m. shift, but found waiting until her scheduled 11 a.m. break to pump milk was too difficult. Any breastfeeding mother could relate to the discomfort and leakage Ms. Allen said she was experiencing.
Ms. Allen asked her bosses either to let her take an extended break at 10 a.m., or to extend a brief 10-minute break she was allowed at 8 a.m., to allow her time to pump, but neither request was granted. After suffering for several days, Ms. Allen began taking an unscheduled restroom break around 10 a.m. every day to use her breast pump, court papers show. A supervisor told her she was violating work rules by not waiting until her 11 a.m. break, and she was later fired.

you can read the full article here: http://blogs.wsj.com/juggle/2009/08/31/can-pumping-at-work-get-you-fired/

another point of view can be viewed here: http://www.salon.com/mwt/broadsheet/feature/2009/08/28/fired_for_pumping/

still another point of veiw can be seen here: http://www.columbusdispatch.com/live/content/local_news/stories/2009/08/28/LACTATE.ART_ART_08-28-09_B1_8EET5UK.html?sid=101

And if you would like to send an e-mail to Totes/Isotoners to tell them how you feel, you can do so at this address: mailto:customeraffairs@totes.com

Nathaniel's Dreams are coming true

So we got the mad hook-up tonight!! Turns out, Nathaniel is a boy aged 6-8 and LEGO wanted him to play with Legos for an hour and then give them feedback. I wasn't too clear on the compensation piece, but I figured at worse, they would give him a small set of free Legos right. And it was in the town next to us, and it was in the evening so it was doable. Well, Nathaniel was giving me a hard time, because he wanted me to give him all of whatever money he makes. I told him no, it would go to his savings. Well, wouldn't you know, he got this Lego Service Station Set (I priced it at $120 on Toywhiz.com) AND a check for $50. He doesn't even know about the money. He is too excited about his Legos that he gets to build tomorrow. So, in the end. . we both win!! I can't wait for the next one!!!

This couple will be matching

So, I was at Target (my favorite store) and saw this raincoat that I thought would be perfect for Penny's boyfriend, Dillon. Then I saw the matching hat and I was sold!! I then noticed the pink set and I knew I had to get this for Penny. Can you imagine how cute our kids are going to be. I am almost hoping for rain this year at the Buddy Walk so that they can be sporting their rain gear together!! ( I didn't bother with the umbrellas, we are talking about a 2 and a 3 year old) Oh, and I couldn't find the pic of the yellow matching hat online, but rest assured. Dillon got a hat too :)

Penny feeds herself Oatmeal!!

. . .And she is starting to get really good at this too. Barely a mess! I am so proud and impressed with her.

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!

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What every crazy fun night at home needs!

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THEIR VERY OWN PENNY!!

ENT follow up

Well, we were asked to wait for awhile, which is ok, I happen to have patience for this sort of thing. Penelope's ENT visit is scheduled for Oct. 12 at 9am. Hopefully I will be laid off by then, but if not, I will just take a morning off so that I can be with the ENT (ear, nose, and throat) doctor that morning.

Wish us luck!!

Audiological Report

Hear (pun intended) is the audiological report that came in the mail over the weekend. I think these things are interesting to review and I figured I may not be the only one. We spoke with her pedi last night to get a referral to an ENT . . . and another journey has begun!

click to enlarge

Some more milestones

One thing I never take for granted with Penelope is her ability to feed herself and try new foods. Too many of her friends have aversions to eating, or are just plain picky eaters. Penelope can use her fork and spoon well enough for a two year old. She can self feed with her fingers like a champ, and she will pretty much try anything once. For example, I was surprised a few weeks back when she tried some sauteed collard greens and continued to ask for more. Also pretty recently, we began to give Penny a whole corn on the cob. She LOVES IT!! Today, I decided to have her try a whole fresh peach. I took the tiniest of bites first just to expose the flesh to her and then I handed it over. She LOVED IT!! When she had chomped off enough to expose the pit, I dug it out for her and tossed it. She demanded that I be quick about handing the fruit back over to her too. She is just so funny, she finished the whole dang thing!

Another thing that I am so incredibly proud of just happened this past Tuesday. We went to this family lake house to have a nice refreshing dip after work. I sat her down, waist high, in the water at the shore. I then showed her about twenty times how to blow bubbles under water in the hopes that she would copy me. I had pretty much given up with Nathaniel asked me to turn around to look at some feat he had accomplished and when I turned back to look at Penny, her face was under the water and she was blowing bubbles just like her Mama had done! Since this day I ask her to blow bubbles during bath time and she has happily complied.

I love getting excited over the little things in life!

Friday's Favorite Quote

I am going to start something new, at least, I think it is new. I love going on websites to find a good quote to get me smiling, thinking, or both. From now on I am going to share my favorite one on Friday!

"IT IS NOT GIVING CHILDREN MORE THAT SPOILS THEM; IT IS GIIVNG THEM MORE TO AVOID CONFRONTATION." - John Gray from Chilren Are From Heaven

Audiological Exam and Montana Travel

I am such a proud momma to my darling Penelope. She was such an excellent baby during the air travel to Montana. On the way there we had to take three planes. This would have been bad except my kids were truly angels during the whole ordeal, so I was able to manage just fine. We were supposed to leave the CT airport at 7:50. Since I had the baby and I wanted to buckle in the car seat, we arrived at 6 am. *this is a small airport* We learned at the time of arrival that our flight was delayed until 10:50! This was really bad news because our connecting flight in MN departed at 11:40 am. We didn't arrive at MN until about 2pm and we were quickly shoved onto another plane to Salt Lake City in an effort to reroute us to Montana. This proved difficult since we had a hard time getting seats together, but it all worked out. I sat with the kids, Scott in a different row, as well as Matt, Wendy, and Martin peppered elsewhere throughout the fuselage. Once we arrived in SLC, we had some time to breathe during our five hour lay over. Mind you, we had all been up since about 5 am CT time and our flight did not leave until 9:30 UT time. You can imagine we were a little tired. I was a little sad sitting there at the SLC airport knowing that we should have been at MT a few hours ago. The airline provided food vouchers so we were more than fine and we were able to spend very little to no money on food in the airports.

The point I wanted to make was that even with all of these take offs and landings, Penny hardly complained. Maybe a little whining from time to time, but never really upset over the altitude change.

Our travel did get a little stressful in that the rental car store closed at 2pm on Saturdays and we were not arriving until 11pm. There was some big horse show in Kalispell so all the other rental car agencies were booked. AND all the hotels were fully occupied. Now, we had a vacation home lined up, however, we were supposed to meet him between 2pm and 3pm. Several attempts to reach him and apprise him of our situation proved only failure and we were worried that even if we got a car to get off the airport grounds, where would we sleep that night? Moments before we boarded our 9:30 pm departure from SLC, a voice mail was retrieved that indicated that our home would be left open for us and that we could go over the paperwork (i.e. rental payment) the following day. THANK THE LORD!! So we were able to board this plane with that sense of security at least.

Once at the Kalispell, MT (glacier Nat'l park) airport, I sweet-talked my way in to an Alamo minivan. I was charged a disgusting $184 for the night and I had to promise to return the damn thing the very next morning when I got into my Enterprise cars, but we were desperate! I drove the absolute wrong way to the rental house that added about 25 minutes of travel time, because ya know, I wanted to take the scenic route at midnight when there are no street lights, and a deer (or worse, Moose!) could jump onto the road at any second. Damn! I should have taken that damage waiver. :) Luckily, the following morning myself and a few people in my party arrived at Enterprise to pick up our scheduled vehicles. (Thanks Doc Vivien!!) And we traveled back to the airport to hassle the manager about this insane $184. I was able to further sweet-talk the manager into a reasonable $69.99 (after taxes) and I was on my way with a huge smile on my face. I mean, we could have easily paid that in cab fare to the rental house 30 miles away so it was all good.

Additionally, Penny had her audiological exam yesterday at the Glastonbury office of CCMC. This was all new to me, however, I have no doubt that I will learn fast the ways of the ear. She failed her tympanic test, as it was pointed out to me that her graph made a very shallow peak indeed. It was suggested to me by the audiologist that this may indicate fluid in her middle ear, or it may just be her baseline. She said some children with Down syndrome exhibit this sort of graphical representation even though they suffer no hearing loss. Of course, it would have to be up to the actual doctor to report any true diagnosis.

Then we were ushered into the sound booth where I was met with two speakers. One situated on the top left corner of the cubicle, and the other in the top right corner. I was instructed to hold her and let her demonstrate on her own if she is able to determine what side of the room a particular sound was coming from. Basically, each time the administrator spoke into the speaker, Penny exhibited good hearing. If the administrator chose a static or other soft noise, Penny did not do too well. It was funny because even though she would not turn her head as we would have liked to definitively demonstrate that she could tell where and when the sound was produced, she would imitate the sound, thus indicating that she at least heard the noise. It was a really subjective test at that point. Overall she didn't flat out fail, but there were some concerns.

Then the audiologist put this headband thingy on her that positioned two soft round "speakers" directly behind her ears on the nerve itself. The conventional wisdom is that this "noise" bypasses the middle ear by putting sensory information directly on the nerve. She "passed" pretty much 100% of the time. This did reflect that she possibly has some mild hearing loss. We need to proceed with these concerns and see an ENT as soon as we can to explore further. Most likely there is some fluid in her middle ear that muffles the sound she hears in her day to day. She can hear noises, but we want her to be able to hear clearly and I will do whatever it takes!

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

Back From Montana

What a week we just had!! We enjoyed gorgeous weather and a beautiful rental house located in the tranquil Glacier Park area of Montana. Over the week I will plan to post pictures from our vacation. Check back often!!

Penny eats her Zuchinni

Pucker up!!!

So, Penelope has just been an explosion of development lately. I know that it is true now that kids can only work on one thing at a time!! All that hard work to learn how to walk was truly taking up most of her brain power. :)

She knows roughly 40 signs now and sometimes she uses signs that i don't even know. Everyday there is a new one. She will use a modified sign for help when she wants me to turn on a toy of hers and it is really great. No tantrums when she cannot get her toy to work. She simply walks over and puts it in front of me and then signs "Help".

Wednesday I came home from work and there was my happy girl waiting to give me hugs and kisses. Yes, kisses. She puckers up her cute little lips and will smack away until her mouth lands on you. I was so amazed. Honestly, Nathaniel was over 3 when he learned how to kiss. He used to make this noise that sounded like "mmm-baaaah" when he "kissed" us. So I am loving life now that I am getting kisses from my precious little girl.

New Friend for Penny

On a brighter side, I think Penny met her new best friend. Up until now, Penny has met a lot of boy children with Down syndrome, and we were on the look out for a girl that is local to hang with. Well, we went and visited a family that lives about 15 minutes away. If the mom sends me her pix (again my camera was not operable) and her permission to post I will throw some pictures up soon. I know that this is a match made in heaven so to speak because her name is Helen. Both Penelope and Helen are strong Greek names that are rich in Greek mythology. In fact, the name Helen made it on my short list for that reason, but Penelope won out in the end.

Penelope was the wife of King Odysseus of Ithaca. Odysseus was pretty much forced to help the king of Sparta when his wife, Helen of Sparta was "kidnapped" by the prince of Troy. Thus began the Trojan war, ten year battle over a woman. Helen's beauty was unmatched and she was said to have had "the face that launched a thousand ships" because of all the countries involved in this fight. All the time that Odysseus was absent from home, twenty years in fact, Penelope never once took on another lover. She had many suitors since there was an empty thrown, but she turned down each one of them because Penelope believed her husband was to return. The name Penelope has two meanings; the first is "always faithful" but the name also has a more literal translation, "one who weaves." This is because it was said that during the time Penelope waited for the return of her husband, she was constantly weaving a garment to keep herself too busy for the suitors.

So sad and other thoughts

We had Nathaniel's 3rd celebration for his 7th birthday on Saturday. It was a glorious laser tag party, sans Penny so that Scott and I could get in there with Nathaniel and tag him over and over. Well, I dropped the camera and it is broken. I can't even get my computer to read the card so I can't tell if that was damaged as well. I just emptied the photos recently so the only pictures are those that I took on Friday while making the cake with Nathaniel and Penelope. And then those pix taken on Saturday of course, but man, was that cake cool! Not to mention that we only had that camera for about a year and it was a couple hundred dollars. It makes me so sad. . . .

**update** Scott purchased the protection plan that will cover you if you damage your own camera so they are sending us a new one. YIPPEE!!!

New Penny Montage

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Ramdon Thoughts

This is were I will be in 2 weeks! I cannot wait for my vacation to Montana. This will be Penelope's first trip on a plane. Nathaniel went out to California when he was 3 and still in diapers. He was so cute then.

It is increasingly difficult for me to stay focused at work. I am not sure if it is because I am getting laid off soon and my work load is staring to taper off, or if it is because I need this vacation or what? If there is anything I have learned about myself is that I need a heavy workload to stay focused on anything. When the work amount is lessened, I don't feel that sense of urgency and then nothing gets done! When I look back on my college career, I could maintain the Dean's list when taking 5 or more classes, but whenever I decided to "take it easy" with 4 classes, I did awful.

Also had a couple of those moments where I questioned my ability to be a mother. Last night I took the kiddies to the town pool in East Hartford. It was our first trip in the wading pool because the last few times it was closed. (Don't get me started on that) I let Penny run/wade right into the water without holding her hand and . . . she. . . FELL. Face first right into the water! By the time I picked her up she was already gagging on water. I could hear her clearing her airway so I tried not to panic, but man, it was pretty scary. After that, I would not let go of her hand!

Then, after the pool session was over, I let the kids play in the play scape right outside. I parked myself on the bench to watch them enjoy the summer evening. Penny seemed to find something interesting since I saw her bringing an object up to her gaping mouth. I got up as quickly as I could and yelled, "No Penny! That is yucky!!" Alas, she is fast when it comes to food. What I found in her hand was a cream sandwich cookie with her little teeth marks in it. IT WAS TEAMING WITH ANTS!! They began to crawl from the cookie in her hand up her arm. I slapped the cookie out of her hand and swatted the ants off her chubby arm. As I brushed cookie crumbs of her face several seconds later, a live ant crawled out of her mouth!! GROSS!!! Several minutes after that, her tongue ejected a dead ant from her mouth too.

My only hope is that ants are a laxative and this traumatizing experience will help out her constipation issues. lol.

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!

Little Miss Delicate Fingers

Like most parents, I continue to fall into the trap of obsessing over what my child is not doing, when I need to celebrate more in what Penny is doing. I so wish she could talk to me, is saying "mama" too much to ask?

Don't get me wrong, I love to listen to her beautiful babble. It is wonderful that she vocalizes as much as she does. And she understands a lot. Sometimes I really feel she is saying things but I don't understand her. Like "what's this!" I really think she says that, but it is very high pitched and jumbled I might be making that up. She certainly has a very respectable vocabulary for a 2 year old. (New 2yo at that!) She says dog, duck, all done, dada. And she has at least two dozen signs that she uses consistently.

I love that she is so social. She is never shy around strangers!

One of the things that I have been noticing a lot lately is her ability in fine motor skills. She has been building megablock towers since about Christmas time. Although she does yell at the blocks a lot to get them to cooperate :) She is good at putting tiny pasta or Cherrios in a narrow necked bottle. (Such as a water bottle or empy trial size shampoo bottle) She even amazed the OT last week when she held the bubble wand on her own and showed everyone she could put the wand into the bottle on her own and then proceeded to blow bubbles. I love watching her tiny fingers pick up blueberries and eat them. Her mouth has been blue a lot from this new experience.

Also she is so strong. She will think nothing of picking up the entire bag of megablocks or her farm house or doll house and walk around the house with it. Looking for a suitable place to camp out.

Our new adventure is the terrible twos. I remember that three was much much worse with Nathaniel. Maybe with girls it is two? She has been having temper tantrums more often lately. I know, I should let herself dive down the stairs in an effort to keep her happy. :)

I guess the bottom line here is that of course I think she is wonderful no matter what milestone she has reached yet. I just want her to stay happy and healthy!

Nathaniel Update

MY LITTLE BOY TURNED 7 ON 7/07. I cannot believe that seven years have gone by so quickly!!!

What I am about to tell you is his secret. If you see Nathaniel, you cannot mention this to him otherwise I might be in big trouble. But it is too juicy not to tell people. :)

Nathaniel told me the other day that he will have to marry his friend Satiria. I asked him why, do you love her? He told me no, he kissed her so now he has to marry her. WHAT?!?!?!? I asked him how this happened. He told me that first he kissed her on the cheek and then he kissed her on the lips. How is this starting already?

Last night he announced that she is his girlfriend. But he was really sheepish about it. I just hope he doesn't get his heart broken. Although, she did call to hang out with him last night as well (before the announcement) and Nathaniel declined the offer. He would rather play video games than hang out with his girlfriend. So typical of a guy!!!!

Penelope the Terror

Penny: "DA DA DA DA DA . . . .DA DA DA. .. DADADA. . . DA DA DA DAD DDADDDAAA"

Me: "No, MAMA, MAMA, MAMA."

Penny, with her cute look and hands gesticulating like she is giving a disseration: "DA DADADADAD DAD ADAD DADADADA DADAD DA, AHHHHHHH"

Penny ambled over to her brother and seemingly began to hug him saying, "AAAAWWW." Then she commenced to viciously slap him repeatly in the face. Usually Nathaniel is very patient, but tonight, he seemed intent to enjoy the video game time he had earned. He turned around and yelled at Penny, telling her to stop hurting him and to go away. It only took a few seconds for the hurt to build in her face. She clenched up her face and burst into tears. Then she looked up to see me sitting there across the room. She ran over to me all the while crying and waving her hands wildly in the air. I felt like she was saying "Mommy, how dare Nathaniel talk to me like that!!! Make it all better with your kisses."

I kind of forgot what it was like to have someone come to you to be comforted. Even though she was sad, I loved every minute of the comforting.

Remembering 4th of Julys past

So my post is a day late. . . sue me.

Seven years ago yesterday I had approached my due date with Nathaniel. It was a very hot day, not like yesterday at all. I am pretty sure the temperature had reached 100 degrees. Having stopped working only 1 week prior as a waitress at TGI Fridays, I enjoyed lounging around at my parents house for a BBQ that day. Amazing that I cannot remember the 4th 3 years ago, but that day I remember all sorts of details. A good friend of mine, Kelly, stopped by with gifts from her mother and herself for the new baby that was to arrive. I was only 22 with all sorts of expectations of what motherhood was going to be like.

I tell his birth story to Nathaniel every day on his birthday, July 7. Has it really been 7 years already???

Two years ago yesterday I woke up early to get Nathaniel ready to go to CCMC. Penny had been re-admitted five days earlier for an infection to her open heart surgical incision. She hadn't responded to oral antibiotics, and we weren't sure what we were dealing with so, she was kept on the inside for a full course of IV anceph. I was bummed for obvious reasons, but also because we would have loved to spend the holidy with Scott's mother. (Of course we didn't know this was her last 4th of July.) Scott and I were hopeful that Penny was getting freed that day and we would have the rest of the day out of that place. Scott had slept over since we never left her in the hospital by herself. Nathaniel and I made our way through the short fifteen minute drive, and then spent an unusually quick 5 minutes to find a parking space. I pulled Nathaniel in one of the wagons since I was ready to take advantage of any fun thing for Nathaniel. In the lobby in front of the main elevators they had two tables with volunteers making party hats. It was such a neat thing for Nathaniel (almost five) to do. I was so grateful for that, I mean, how nice is it that they do this for families on a holiday. We finally made it upstairs and I learned that Penny was indeed going to be discharged that afternoon!!!!

Tonight, Nathaniel is at the Manchester fireworks with Scott. I got a call at 8 pm that Nathaniel had fallen asleep at 7:30 or so. What a tired maniac!!! Poopers finally crashed at 9 pm tonight after I worked her hard at the playscape down the street. This girl can crawl up the stairs and slide head first down the short slide. What a nut!! Then we had girls night out at Friendly's. We tried out a booster seat for the first time, instead of the high chair. She was wonderful! So engaged with her meal and her momma. We conversed most of the eveing about Dada, but sometimes we talked about the light, and sometimes we discussed the baby in the booth near us.

I hope everyone esle is having a great holiday weekend.

Happy Independece Day

I know the weather hasn't been too accomadating the northeast, but I wish everyone a wonderful 4th of July. Scott still doesn't want to take Penny to see fireworks, he is afraid she would be upset with the loud noises. How do other parents fare when taking their little ones out to firework festivities?

How stressful is your morning?

I try not to wake up before 6 am, although sometimes the wailing of a 2 year old still prompts me to jump out earlier. I move into the shower first thing. I have always been a morning shower person. I hate going to bed with my hair wet. Also, my hair is so fine that if I go to bed with wet hair, it becomes so matted that my pinwheel spot looks like a gigantic bald spot. After I am done in the shower, I brush my teeth and get dressed. I jump in the car within 20 minutes of waking up. If I am really motivated, I might do makeup or hair, but since I am in dire need of a hair cut I haven't been motivated to do anything with my hair lately.

I love and hate it when the babies don't wake up. They slow me down considerably because I would have to change Penny's diaper and make sure she has enough entertainment in the crib to last her until Scottie gets up. It also makes my day when I get to rub my face on her babyish cheeks and kiss her all over. Nathaniel usually tells me first thing that he loves me if he spies me before making it to my car.

My car ride to work is usually only 20 minutes. I really don't think I could handle more of a commute then that.

I would like to get back into doing yoga in the morning. I feel so much better even after 3 or 4 days of yoga.

All in all I would have to say that my mornings are not very stressful?

How is your morning?

2 year check up

Penny had a check up today. She is doing very well, as anyone might have guessed. She weighed in at 25 lbs 10 oz. She also started to sign cold. It is the funniest thing!! :)

Is there anyone that will have us?

Everytime I come back from a trip I long for more. I had a bug in my hat for a brief time about possibly flying out to CA in October to see my family, but I decided to put a hold on that for a time. Now, I am toying with the possibility of driving my family to Chicago from CT to visit my friend that I just saw. This will only work out if I am laid off by Sept 1. Irene will be on maternity leave until about October and I will only consider this trip if I get to spend time with both her and the baby. I thought that Chicago was 11-12 hours, but I learned today that it will be 14 and one half hours! We will most likely have to stop over somewhere and break it up. So if anyone lives near I-80 (from PA to IL) and they are willing to possibly maybe give some respite to my traveling family in September let me know!!! I love road trips!

Jambo!!

I am back from Chicago and I am beat!! I am stuck here at work since my office is a 2 minute drive from the airport I just thought it would make more sense to finish out the day at work and then go home at 4pm. But it is so hard!!! 2 hours left before I can see my babies. My girlfriend Irene lives out there and she is having herself a little Tanzanian-American baby any day. She met her hubby in Tanzania in June of 2006 when she went out to do some volunteer work for six months. I finally got to meet him and I learned that he is such a perfect man for Irene.

Irene, good luck to you when the baby comes!!! I pray for a fast and pain-managable labor for you!! Give the baby lots of smooches for me.

Away I go. . . .

I really intended to have Penelope's birthday pictures as well as pictures from the Little Hearts picnic up, but I have been such a slacker lately.

I am flying out to Chicago tonight all on my lonesome to visit a very close and dear friend from High School whom with I have remained close. Strange that I am soon turning thirty and two of my closest friends are from high school and they have lived out of state pretty much since we graduated. I also connect with 2 other friends pretty regularly.

My friend Irene that lives in Chicago is having a baby at the end of the month. Please pray and hope for a smooth delivery and a healthy baby. Thank you all and I will post when I get back!!

Man, maybe I should just find people to biography all week!

from http://www.louisianamedicalnews.com/news.php?viewStory=1172

Dr. Dennis Mello

By: PATRICIA GANNON

No one ever has to plead with Dr. Dennis Mello to have a heart. It's an absolute necessity in his business, literally and figuratively.

As a pediatric cardiovascular surgeon, he often delivers the most serious diagnoses for the most fragile of patients. It's a job he does well, for a number of reasons.

"I took congenital heart surgery and was almost finished with the study when my first son was born requiring congenital heart surgery," said Mello. "It solidified everything. I can look at it (the specialty) from both sides."

"I was fortunate to be where I was."

It also helps that his father was a plumber and for many years, Mello likewise supported himself fixing leaks and valves while still in school. Although he briefly considered ophthalmology, the signposts along the way were clear. "Once, when I was a medical student, I watched a heart surgeon—a pediatric heart surgeon—and that was the moment for me. I always loved to take care of children."

Congenital heart surgeons treat lesions or conditions people are born with, from premature babies to adults. "It's sort of a misnomer," said Mello. "Some patients require further surgeries as adults. They need to be managed, a valve put in, or one degenerates and needs to be changed-- for instance, a baby was born without a valve. Eventually the valve will become too small and require multiple operations. We don't have a valve that lasts forever."

Still other operations are corrective, meaning all the parts of the heart are there, but in disarray. Other patients sometimes have half a heart and will have palliative operations but will never be normal. "Instead of four chambers, they have three," he said. ""It's congenital, not acquired. We make it work well the way it is."

Born in Farmington, Connecticut, just outside of Hartford, Mello was a Yale undergrad and later attended medical school at the University of Connecticut, where he did his surgical residency as well. His cardiac training came later at the University of California in San Francisco, and included two years of adult cardiac studies and two years pediatric cardiac and congenital training—the latter under the trained eye of influential pediatric surgeon Dr. Frank Hanley,

After completing his training, Mello returned to Connecticut as director of Pediatric and congenital surgery at Children's Hospital of Connecticut, and subsequently collaborated in a similar position with another physician at Yale Children's Hospital. He is 44. "But physically, it feels like 69," he laughed. "You go through a lot of schooling, I didn't finish until I was 35 and I've been at this for 10 years.

"The work puts on about 30 years."

Married to an anesthetist and the father of three, Mello was recruited by Ochsner after the post was left vacant after Katrina. "It's a great institution," he said. "I was recruited and came down not only to rebuild, but for the opportunity."

Thus far, Ochsner's new director of pediatric cardiac surgery has also been accorded the opportunity to evacuate. "The storm was interesting," he said, referring to Gustav. "My wife preceded me here, then called and said 'You have to get down here, we have to evacuate.' I slept one night in my new home and had to leave it."

Hurricane season and living out of boxes aside, Mello says New Orleans is a good fit. He likes the friendly people, the different culture, and learning to walk with his head up, not down, like they do in the Northeast. But while he worked on his home in Connecticut, he's resisted the temptation to renovate in New Orleans.

"I've been doing it awhile, plumbing, heating, carpentry, making furniture. I wanted to get settled first. Otherwise, I'd focus on the crown moldings the doors and cabinetry," he laughed. Not only does he use dangerous tools, it's a risk he takes on a regular basis. "I've been doing it a long time," he said. I have a woodshop, and I come home at night and go out and do stuff, you know, get the kids involved. I don't actually pull myself away from the family. It's not like golf."

He also has his eye on Lake Ponchartrain. A former yacht club member back home in Connecticut, he hopes to get his racing sailboat up and running soon.

But first and foremost is growing the premier congenital and pediatric department in the area. "We have a major one to the west, in Houston," he said. "I'd like to dominate the whole Southern Region."

Mello dedicates what little spare room he has in his professional schedule to missionary work in other countries. Every year, he travels to St. Petersburg, Russia, and then to the city of Ascension, in Paraguay. In just ten days time, he'll leave with a medical team, half of which he recruited from Ochsner and half from Connecticut. It's a mission he warms to. "Children in the U.S. have easy access," he explained. "Even in Russia, an unbelievable number die simply because they have no access." Mello volunteers his time and organizes other doctors in his field, then lobbies to the companies that manufacture his sutures and valves. "I'm really passionate about it," he said.

"You'd be surprised, Russia's so backward. They don't put their money and resources back into their people. Paraguay simply has no money."

What doesn't surprise us is Mello is all heart.

Dr. Mello did both Penny's surgeries and boy, was he good! He also repaired Dillon's heart as well as Georgia's and many many other children. I was actually devestated when I learned he moved down to New Orleans last September. Those kids down south sure are lucky. Penny will need additional surgeries eventually and we will have to decide if we want to go to Yale, Boston, or the new guy (girl) at CCMC at the time her next surgery is needed.

Friday Quote of the Day

"At no time is the human being a blob of protoplasm. As far as your nature is concerned, I see no difference between the early person that you were at conception and the late person which you are now. You were, and are, a human being."~Dr. Jerome Lejeune

http://www.splendoroftruth.com/curtjester/archives/2007/05/jerome-lejeune.php

I am really interested in Dr. Lejeune right now.

Question of the Day.

Does anyone have some neat plans for the summer that they want to share? Scott's step-father is taking us to Montana at the end of July. I can't wait!! We have Nathaniel in the Fun Days day camp run by the East Hartford parks and rec. He is signed up for June 29 thru July 24 and it is from 8am to 4 pm. If they have space open in August I may have to add some weeks. I just don't know when I will be laid off to plan for all this. But we always have Diana as a back up plan.

Soooo, tell me your plans.

An example of May 2010?

My calendar was marked today with an 8:00 am visit by Penny's PT and OT, Yvette and Linda respectively. We generally have them come together because we can only fit so many appointments in the week. At 8:07 I began to get a little nervous. Did I have the time right? Was today supposed to be a 9:15 visit with Scott. "Oh man! Now I am going into work late for no reason," I thought to myself. At 8:09 (and my clock does run a little fast), I picked up the phone to call Yvette, when I saw Linda walking up toward my door.

After we exchanged greetings I asked if Yvette was just running a little late, and Linda gave me this bewildered look. Linda then explained that she had been informed that morning that Penny was doing so well in the physical development department that she was discharged from Yvette's case load. Well, I didn't want to take this out on Linda since this was certainly not her doing, but I had to hold back the tears. You may recall from a previous post that Yvette is very important to me. Not to mention that this came as a huge surprise. I began to wonder what was going on because I know that my approval is needed to change Penny's plan. Then I thought, well maybe Scott was aware and in agreement to this and he forgot to tell me. He is always forgetting things. I attended Penny's OT in a confused (and a bit angry) state. I was upset that I never got to say goodbye; but on a more important note, I didn't agree that Penny lost that service. She is only 2. Don't I get another year out of the birth to 3 services.

At 9 am, Scott emerged from the bedroom and came down the stairs. Immediately I asked about his last visit with Yvette and if it was mentioned that her services would be reduced. Scott thought about this for a moment and then explained that they might have agreed to reduce her visits to one time a month rather than two since Penny is doing so well, but he was pretty sure he didn't dismiss Yvette's visits all together. Linda was still there at this time and admitted she could have heard wrong this morning too. . . but she didn't sound very convincing. I asked her to have Yvette call us if she met up with her.

At 9:00 am I should have been on my way out the door, but this really upset me and I was serious when I said I was holding back the tears. At 9:15 I finally got the gumption to get out the door when the phone rang. Marni was on the other line when I answered to explain that Linda just called her. No less then fifteen emphatic "No"s later, she told me that services are not cut without written documentation and a review meeting so that everyone has an opportunity to consider any changes. I kind of figured this, and I said as much to Marni, but I also explained that if Scott agreed to once a month, I am on board with that. I was just really confused and concerned if the services were just cut all together. She assured me that no, it doesn't work that way and we have a our annual review on June 16 anyway so we can address any changes to her plan at that time and have it all in writing. Hopefully, we will be meeting with Yvette sometime this month. I mean, the girl is good, but she isn't walking up and down stairs yet, so I know she will still benefit from PT at this stage in her life.

So, even though alls well that ends well is where I should be at right now, I wonder; how am I going to handle May of next year when her B23 services end?

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!