Penny, the baby girl

Penny Turns Three!!

2010-05-28T22:49:00.000-04:00

Three years ago today, it was Memorial Day 2007. I opted to stay inside and rest while my husband and my son went off to spend the day with Scott's family. I know they swam in the pool and had lots of fun. Around 11 am, I got an itch to organize everything. I cleaned out the cabinets under all the sinks. I emptied out the linen closet (something that hadn't been done in the three years we lived here); then organized the items back in. Around 2 pm I started feeling hungry and I was tired of cleaning so I went to my mother's house where she was also hosting a BBQ.

Ah, my last day of being a mother to 1 and I didn't even spend it with my son. After a few hours with my family I decided to clear out. I still had a couple of small items that I wanted to have ready in my bag in case the D-day came so I swung by Stop and Shop. Oh, how happy I was, strolling down the aisles thinking about how my new baby would be. I didn't even know if I was having a girl or a boy.

Once I was home, I relaxed, checked my bag again. Then, at about 9 pm, I started to feel what I thought were contractions. Don't ask me why, but I thought to myself, "oh boy I better eat before this gets serious because who knows when I will eat again, and anyway, this might not really be labor." So I reheated myself some turkey meatloaf and cauliflower. I tried to rest, but the contractions were nagging me and I couldn't get back to sleep. At midnight, I called my ob/gyn's office, I was asked to call back when the contractions were closer together. At 2 am, they were closer together, so I called again. I was instructed to go ahead and meet them at Manchester Hospital. Before Scott and I got our stuff and our son together, it was almost 3 am! We were almost to the hospital when we realized that we forgot the digital camera, so I made Scott turn around. I continued to moan and cry out, and my sweet 4 year old son asked me to "stop making so much noise." I love him!

We dropped Nathaniel off with my mother (2 blocks from the hospital literally, so it made more sense to bring him to her) and we went to meet our new child. During my entrance exam at 3:30 am, I was told I was 6 cm and I was quickly assigned a room. By 5 am I was ready to push!

Our child was not born until almost 7 am due to the fact that I think she was coming down face up instead of face down. The back pain was pretty much unbearable and I couldn't find a position that seemed helpful. You see, I opted against an epidural for both my children. But finally she came and a sweet child was put on my belly.

Those eyes and that small mouth instantly revealed her secrets. I didn't even know if I had a boy or girl and someone reminded me to check between her legs and announce the news. It felt like I was going through trained motions, but I knew there was some devastating news to share, and I just couldn't. I just couldn't bring Scott down. And what would he think of me if I had been wrong? So, I quietly said, "Look, she's a girl." There was no excitement in my voice, no overwhelming joy like I had for my first born. My first born. . . I thought back to when I had him and how the first thing I did was kiss some slimy stranger newborn all over his head and tell him how much I loved him. I tried to do the same thing for my daughter. I kissed her once, and I told her I loved her, but I know it didn't sound convincing.

Soon, before we had even named her, some nurse told us that it seems our daughter might have Down syndrome. No one would know for sure until the results of a blood test came back, but the nurse felt pretty confident of her diagnosis. Scott and I stared at each other. We asked to hold her some more. We were reminded that a name might be appropriate. Scott told the nurses the name that we had planned. It seemed wrong, we had planned that name for a different baby, but it was the only girl name we agreed on, so this new baby was then named Penelope Ringrose.

I focused on doing the motherly things I was supposed to, so the next thing to cross off my list was breastfeeding. Scott and I seem to remember that she latched on pretty well. I nursed on both sides and then cuddled with her until a nurse asked to take her back so they could look her over again.

A couple of hours later a neonatologist walked in and told us that our newborn had some serious cardiac problems because she was unable to sustain her blood oxygen levels. I truly thought that the next words out of his mouth was going to be "We did everything we could, but she is gone." I choked back tears waiting for bad news, but instead, I learned that she was being sustained and that she would need to be transferred to Hartford where she would get a better look and possibly a surgery very soon if needed.

At noon, when she was only five hours old, a team from UConn, took my daughter away to transport her to Hartford Hospital/CCMC's NICU. Scott followed them and I was left alone. I tried to sleep, and I may have for a little bit. It was hard and I was depressed. I could hear the other babies crying for their mothers through the hallway, but I didn't have my baby. I ended up getting discharged at 7 pm, after the nurses made me eat a filling dinner. It was so crazy to think that I was only twelve hours postpartum and I was going across two towns to see my new girl.

Scott picked me up and drove me to Hartford to check everything out. It was so surreal. I was tired, my eyes were puffy from all the crying I did, and I didn't have any clothes that fit me. I also didn't have my baby with me. I will never forget that first trip to the fifth floor, it was dark and quiet on the floor so that the babies could sleep. I scrubbed in and met some professionals. I finally saw my daughter on her warming tray. She was bright red and she looked so irritated. She kept squeezing her already puffy eyes shut and sometimes that made her eyelids flip inside out. Every few moments she would have a sad trembling lip and attempt to cry a little. She seemed like such a stranger, but my heart really did go out to her. What an awful way to start your birthday! I thought.

Well, it really didn't take long for me to fall in love with her. It especially helped when I was allowed to hold her again and also, try to nurse her again when she was ten days old. She ended up having surgery when she was 6 days old to correct a heart defect and she recovered so well. Instead of asking, why me? Why was a burdened with a disabled child? I wonder why I was blessed with such a perfect being. I truly feel so lucky to have been blessed with her.

HAPPY BIRTHDAY MY LITTLE PRINCESS. I know that this year is going to be incredible for you. School will be a challenge, but you will overcome and exceed everyone's expectations!! I love you!

Go Me!!

2010-05-06T20:19:00.004-04:00

You may remember back in January of 2009 that I took my GRE's because I was considering going back to school to get a Masters. Well, I have been a busy girl since I disappeared last October. I applied to UConn graduate school. Their West Hartford campus offers a one year accerated teachers program that will award me with my Masters as well as my teacher's certification in one year. You can click here if you are interested in the program details. My first summer course begins on June 1st and I am going crazy with stress.

Today, I received notice that I also was awarded a teaching grant for $15,000!!! That amount will go along way to paying off the bill for tuition. I'm so so excited. In the Fall of 2011 I will be teaching high school math baby!

A lot to think about

2010-05-04T14:06:00.003-04:00

Penny had her first visit to school today. As I said in a previous post, there are about twelve classes in this preschool; we went and visited Mrs. G's class. There were seventeen typical kids, some are three and some are four. Their day starts at 8:30 but since Penny was just checking it out, she was asked to come in at 9:45, enough time to sit through circle time and check out centers.

We walked through the door and Penny went running to the circle rug where everyone else was. Of course she didn't want to sit; she wanted to check everyone out and touch everyone's hair. :( I took her by the arm and sat with her. I also pointed around the rug and mentioned that everyone else was sitting there listening. Mrs. G read a book and her children sat there motionless. I was impressed. When the story was over, Mrs. G organized centers time by way of each child, one at a time, grabbed their name card (a foam rectangle with their name on the front and Velcro on the back) and walked over to whichever center they wanted to play with and put their name on that sign. Mrs. G saw the expression on my face and had to explain that they had been working on this since the fall and some of those kids were with her as 3-year olds, so they have been doing it for two years. Penny witnessed a couple other children hug th- teacher, so she ran into line to get one too. :) Mrs. G gladly hugged Penny back.

Two cute girls (one was named Heavenly) inducted Penny into the world of centers. Each one took a hand of Penny's and then escorted her to the play-home. There was a desk with a phone and a pad of paper to take messages, a couch, dolls, a crib, a play sink and many other fun things. Penny set to sweeping the floor right away. Then she moved onto the construction center where she played cars and blocks with a couple of boys. Some cutie named Bryce took her by the hand later on to show her the writing/literacy center. I gave Penny a bucket of magnetic letters and she took to naming them as she pulled them out one by one. There was also a puzzle center and sensory table and Penny tried them all out. She was a little destructive in that she wanted to take everything out without putting the previous thing back, but she tried when directed. She also took a crayon and colored on some one's project before I could act. The four year old girl was kind of upset, but Mrs. G smoothed it over.

After centers we went outside where she really fell short. There were tricycles, little tyke cars, scooters, and sidewalk chalk. There were a couple of playscapes so I imagine the outside areas are rotated since they spent their time on the blacktop today. She was chasing after a girl with a wagon when she fell and hurt her knees. She was already kind of miserable that day since she was constipated and tired (I think she woke up at 5:30). I decided to leave from there and so I said goodbye to the para. Mrs. G was inside taking care of some other business.

I discussed our experience with Scott. I am really nervous about Penny fitting in. I know that she is great and that the teachers will love her, but I dread the looks and laughs from the other kids. I know the kids are young now so it will be truly innocent, but already, I had 4 or so kids ask me why she can't sit in a chair or why she doesn't know how to play with something. My answer generally was that she was still only two years old. Oh how staggering the difference is between her and the typical three-year-olds. I don't compare too much, most of the time I really don't care that she is on her own time table, but when it is thrown in my face like that it is really really hard not to think about it for at least a minute. . .

I'm really excited that Penny is going to be in a typical class and not the class where it is half and half. I tell myself it is the best thing for her and that she will excel, but part of me worries that school will be too hard or because she won't be able to keep up, the disparity will be that much more significant. I can't help but worry, I am her mom.

Penny starts school!

2010-04-30T16:03:00.004-04:00

Yesterday was my introduction into the world of PPTs. Well, it may be more accurate to say that my first PPT took place last month when I bravely sat down to a table with five of them and one of me. This was a meeting to discuss whether or not she qualified for services. Since I wasn't worried about the outcome, I didn't bother with reinforcements. At 9:15 am yesterday, my husband and I walked toward a rather large table with almost a dozen educators. I hate to paint a portrait of "sides" as I know we are all on Penny's side, but I have heard enough horror stories to know that sometimes there can be a "them against us" mentality. The people that had my back were Scott and Penny's Birth to Three providers. Penny's occupational therapist is herself a parent advocate and is very knowledgeable in how these proceedings should go. I also have the unfathomable support of Penny's physical therapist. Her attendance at the meeting felt like a wall holding me up. Penny's speech therapist and service coordinator/sped teacher were also present, and each had a chance to speak to Penny's strengths and then go on to discuss her needs in the preschool class.

On the other side of the table were the "NEW" teachers, too numerous to mention. I remember 3 sped teachers from various classrooms, a PT, an OT, and an ST, but I also seem to remember one or two that I can't even remember what their function was. Everyone was nice enough. One of the new teachers (the OT maybe) asked if we had a picture to share before they could get going so that they could have a visual image of her before we discussed her placements. Scott happily passed his I-phone around the table to the sounds of oohs and aahs at his beautiful little princess. Scott and I had typed out a page describing what kind of person Penny is and I happily passed out copies around the table. I had indicated that I wanted a copy of this added to the IEP (individualized education plan) because Scott and I also included some goals of our own in there. The personality summary that I passed out was met with warm reception and I was really happy that Scott and I took the time to do that. It focused somewhat on her sign language skills and that our hope, no, our requirement for her would be that she be placed with a para that can sign and understand her signs.

We had a lot of ground to cover in this session. The objectives on the table were really threefold. Penny is turning 3 at the end of May, so that means she will need services or school in June until the end of the school year. She also qualified for summer school (or EYS, extended year services) and we needed to discuss how that would be organized. Lastly, we had to decide her placement for preschool next school year. There are many options in East Hartford, but until recently, I was made to feel that many did not apply to my Penny.

Since I cannot be flexible as far as driving her there and back for individual services at school (since I will be going to school myself), we had to arrange her services in June in tandem with the bussing schedule. We worked out that Penny will go to school starting May 27 for four Thursdays. I will be able to drop her off at the school at 8:15 and then she will get her ST, PT, OT, and special ed classes back to back. The bus will arrive at the school at 10:30 to bring her across town to the daycare we have chosen for her. Scott and I feel she can handle two hours at this time, and it is not a reduction in services since she is getting ST once a week now anyway. I almost cried when I realized that I WILL be able to see her go to school on her first day and see her when when comes off the bus. School starts on June 1 for me and I thought that she wouldn't start until that week as well and I had already resigned myself to the idea that I would miss her first day.

I have to be honest here and say I was not too happy with the summer school situation. The only summer school they have available are with children with severe, significant delays. As soon as I heard that I said out loud, "Then that is not appropriate for my Penny." On paper, she will attend summer school, but what we will do is find out when and where the ST time slots are and go in for that only. ESY is not about gaining new knowledge, it is about avoiding regression. She will be fine without OT and PT for the summer, but I am worried about any speech skills she may lose.

Now comes the fun part: next school year!! Determining how long her day will be, how many days, what classroom has been a moving target with this school. There are twelve classrooms in this school, some integrated, some with only typical kids, some with very severely delayed children. . . Initially I was told she was going to go into a class with only special needs kids. Even though they know it is against the law, that was the way they were doing it. Then I found out that the afternoon Head Start Program through East Hartford is a fully integrated class that she would be eligible for. There are 18 spots and they fill 10 of them with typical kids and the other eight spots are for students with IEPs. At first I was told it was from 12noon to 2:30 (which is an awful time), but later I found out that if she was picked up, we can get her at 3:30. Scheduling wise, it is much more convenient to pick her up at 3:30 then it would be to be home for the bus at 2:40 and we didn't want to pay for before and after care, so we elected for the no bussing for the way home. I was aware that there was a full day program, but that is only for typically developing kids whose parents are under certain income requirements. Technically, the half day program's typical kids are from lower income families as well. Yesterday, one of the administrators said, "You know what, since the mom will be in school full time, why don't we put Penny in the full day program." I was like, YES!! That was want I wanted, but had been denied because "we make too much money." But this woman made it seem like it would be possible. We ended up getting 1 hour each of OT and PT a week (or maybe 30min) but there is also classroom time for these therapists so Penny will in fact be getting more. We agreed on 90 minute of ST where she will be pulled out once every other week for 30 minutes to work on some skills one on one. Additionally, she will get a couple of hours of special ed instruction to work on cognitive skills along side the integrated class.

Once I get a copy of the PPT I will see if I can share it for anyone that is interested. I feel really good about my "first time" and I am super excited for Penny to start school!! We also get to go in for a visit on Tuesday so she can meet the other kids. I really can't wait for that. only 4 days to go. . .

Penny is almost 3

2010-04-28T09:13:00.003-04:00

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?

Don't you just love it when a poem or story can really move you?

2009-11-19T09:59:00.000-05:00

On another post I will have to share my experience at the CT Down Syndrome Congress convention. But for now I want to mention that I won the door raffle and picked up several books that I am very excited about. One was "My Sister, Alicia May." For a long time, in the back of my head, I have been wanting to get a sibling with Down syndrome book for Nathaniel, but never got around to it. This book was so good it moved me to tears. Not only is the little darling girl, Alicia May, a spirited strawberry blonde like Penny, but Alicia May also had heart surgery when she was born just like Penny. I just loved the story and Nathaniel loved it too. Thank you Nancy for donating your book of poems, the book "My Sister Alicia May" and the permision to post your poem and for donating your book. I would have missed out for sure on this great read!!!

You can click on Nancy Tupper Ling's name below to link over to her website, or click on the title to link to the poem itself. I highly recommend you check it out!

Our Fragile Emissary
By: Nancy Tupper Ling

With modern screening and such
they wonder why
you're here, on this earth
in our home
and in our arms,
after all, anyone
with any sense would have resolved
this problem of you
pre-birth, pre pain.

Blonde Beauty,
tiny as you are,
you catch their stares,
strangers' second glances
into tender baby blues.
And your young
sweet ears hear whisperings
("Down's," "defects")
words dropped loosely
at extra-chromosomed girls.

With such stinging receptions
how we long to shelter you,
surround you; keep your
gentle smiles to ourselves.
Instead, we hold you
up, for others to see;
let you, our fragile emissary
speak to an imperfect world.

Whew! I've been gone a long time

2009-11-18T09:21:00.003-05:00

Since I am no longer working behing a computer eight hours a day, I find it hard to sit down and update my blog. Actually I have been a little busy. I took the Praxis II exam for high school math teachers and I have been finishing up my admissions essay. But more importantly, I have been settling in as a stay at home mom. I actually do house work. Imagine that!! I was so spoiled by Scott. But I need to pull my own weight and do stuff so that he wants to keep me around :)

I have Halloween pictures on my facebook account. Unfortunately, after I got the photos uploaded to facebook, but before I got around to uploading them to flicker or to my external hard drive, the device that I use to connect the memory stick to the pc broke so I have to get a new one. It is only $15 a Walmart, it is just a matter of getting over there. The card slot on my pc has been broken for a while and we lost the cord that came with the camera, it is not a typical usb cable. The cost to replace our Sony cord is $80 so I would rather get that other thing. Too bad, our little princess was great!

Penny is doing all kinds of amazing things and I have to say that I love staying home with to be a part of development. She says circle (kirkle lol) and draws a round sort of thing that closely resembles a circle. She started to say "up" on Monday and yesteday I swear she said "yeah." We do a lot of coloring and work with shapes. I sort of dabbled with color recognition, but I don't know if she is ready for that. She does get really engaged with shapes though so I am going to stick witht that.

We hit a museum once sometimes twice a week since we have free admission to practically everywhere. And I still have time set aside for her naps.

HAPPY HALLOWEEN

2009-10-31T08:33:00.002-04:00

What are your pumpkins being for Halloween?

Cardiology Check up.

2009-10-30T19:54:00.005-04:00

Penelope had her annual cadiologist check up today. I must admit that I am a little bit nervous going in. I know I shouldn't be because Penny is obviously doing really well, but there is always a little part of me that waits for the bad news.

WELL, today we learned that Penny is really close to 30 lbs, and she is 34 inches. We also learned that everything looks good! The insuffiency in the valve was measured at a trivial amount. Her branch pulomanary areteries have grown as they should!!

Here is hoping that her next surgery can wait until she is 7 or 8 years old. YAY!!!!

Penelope and CHD - Part VII

2009-10-29T11:15:00.003-04:00

You can read where I left off in Part VI right here.

Sunday night, June 3, 2007 brought a tough decision. At the advice of Penelope's primary care nurse both Scott and I went home that night to get a good night sleep and spend time with Nathaniel. I can't remember the time, but we were asked to come in early the next day for us to say good bye and good luck to Penny.

Of course, we were running late so Scott and I went running to Penelope's NICU alcove so that we could put kisses all over her little body. We prayed that she would be returned to us. Next we had to pack everything up since she would not be returning to the NICU. The plan was that she would go to the PICU (pediatric intensive care unit) and then from there to a regular floor.

Penelope was 6 days old this morning, but she had never eaten anything. All her nutrition had been i.v. up until this point so I had a ton of those 2 oz cylinders with my breast milk which I needed to pack up and ship out. Eventually, the team was ready to transport her, and Scott and I were packed up and the race began. I say race because it was quite a long trip from the NICU in Hartford Hospital to the facilities at CCMC where she was going to be dropped off. There were no less than four professionals walking with us including her primary nurse. They all wanted to rush because they did not want her to crash while en route to the operating room.

We went down an elevator to the bowels of the hospital and then through a long tunnel that ran under ground, under the roads to the parking garage. There were two sets of steel security doors on the Hartford Hospital side and after what felt like an eternity of walking, anther 2 sets of steel doors on the CCMC side. When the first set had been visible, I thought, great we are almost there, but after we passed through those doors, another long corridor loomed ahead. Finally we got to the end and found another elevator on the CCMC side. We turned a corner and it was here that I had to say good bye to my little baby. She looked so helpless in the isolette that she was transported in.

Our hope was that she was going to be a good candidate for the full repair. This meant that the hole between her atriums and the hole between her ventricles would be stitched up. Also, a donor pulmonary artery would be placed where hers was missing. We were warned that Penelope would look quite swollen after the surgery and that the earliest we may not see her until 4pm if the complete repair was done, but maybe earlier if the a shunt procedure was done.

We waited, and waited. I kind of had this feeling that someone would give us hour by hour plays, but that was not accurate at all. We were assigned a family room where we could sleep as long as our child was assigned a room in the PICU. The regular floors in the hospital allow (and accomodate) rooming in for the parents. However, they have a strict policy against parents sleeping in the PICU. That was fine with us, the family room was one of four bedrooms that shared two bathrooms (with shower facilities) and a kichenette. I thought it was great! We didn't have to run back and forth to home and we only lived 15 mintues away. How great was this anemity to those traveling hundreds of miles!

Finally, after waiting in several different waiting rooms looking for someplace to feel comfortable, we retreated to our room. At last, at 1:15 pm, the Dr. himself knocked on our door. We shared a meeting in the hallway to the rooms, and were told that Penny's coronary arteries were not in a good spot and she was outfitted with a BT shunt. He could tell that we were disappointed for this because this meant we would have to come back in 6 months or so, but he said it was definately the best for her. He went on to admit, some doctors are more agressive and perhaps Boston would have done the full repair to avoid having another invasive surgery, but he liked to err on the side of caution to avoid damaging a vitail coronary artery and so he stuck with the shunt. We thanked him for his compassion and his hard work. We knew she had been in good hands!!

After what felt like another eternity, the closing team finished up with Penny, and we were allowed to meet her in the PICU room. I can honestly say about this experience that I walked right in, and then I walked right out. That baby in the bed was not mine. But the name on board clearly placed baby Ringrose to that room. Penelope's ICU nurse came in to explain all of the pumps and the breathing tube (in case we didn't already know about it) as well as the foley catheter, and the chest tubes. She told us that Penny was retaining fluid after the surgery which was more than common and that our baby was being administered lasix to help her heart in getting the fluid off of her. It was scary to go in there an sit by her bedside. I couldn't even imagine having to go through that myself and here was this little girl hooked up in so many places.

CraZy DreAm I HaD

2009-10-28T09:41:00.003-04:00

Anybody that knows how to interpret dreams, your comments are welcome.

A large convention type hall was used for a meeting of people with Down syndrome and their families. I haven't yet been to a CDSC convention or a Natainal convention so I am not sure what they are like, but I have a pretty good idea. I was alone with Penny, because in my dream Scott stayed home with Nathaniel. I had been having a great time getting to know other families and other children and some adults with Down syndrome too. This dream felt so real, like I really knew these people.

At some point, it was like there was a lock down. We were all trapped in this hotel that housed only the convention people. Armed guards could be seen through windows at pretty much every locked exit. Obama was visible through a large glass, sitting behind his presidential desk with body guards standing on either side of him. Suddenly, his voice came on a speaker and he announced that we were all to be terminated since our children's lives were not ended before they were born. I don't remember the exact words in the dream, only that the method of execution for us was that gas would be piped into our convention space.

I cried so much in this dream. We all protested and demanded to know why our children's lives were not valued. Additionally, many of us had family left at home and we insisted that this was good reason to let us all live. Obama was unwaivering in his intent.

Luckily, it was a huge space that we were confined to, so in my dream, the gassing took an infinitely long time to produce any effects. I noticed a police officer (dressed unlike the guards) in a window and I held up a sign and waved my arms to get her attention. I communicated to her that Obama was in this building with us and he intended to murder us all. This officer was able to confront Obama and call off the mass murder. But he gave me a terrible look and let me know that this was not over, especially with me.

SO, what the heck does this mean?

Who has the time?

2009-10-27T16:02:00.002-04:00

Right? You know, to look through old posts when you only just started following a blog. My blog is so boring anyway. . .

Well, I just watched this video myself today and I must say, this is the first time I have seen this in at least a year.

http://babygirlpenny.blogspot.com/2008/01/ok-so-scott-and-i-figured-this-video.html

Click above to track back to one of my first posts, about 20 months ago to see baby Penny! This is why my blog name is baby girl Penny afterall!

I am such a proud Momma!

2009-10-27T12:45:00.002-04:00

So, word number five in Penelope's vocabulary? Is it Mamma? Madre? Mum? or Mother? NO. How about the word, "butt!"

. . .

. . .

. . .
I have to admit I am kind of to blame on this one. But when your 2 1/2 year old is running around the house happily smacking herself on the bottom yelling, "Butt, butt, butt, . . . butt. . . butt, butt. . . butt!" it is a wee bit difficult to hold back the smiles.

{Sigh} I love that girl!!

Penelope and CHD - Part VI

2009-10-26T13:11:00.003-04:00

You can read where I left off in Part V right here.

The Thursday afternoon, I sat there nodding my head at all the things Katie had to tell me. Katie was the physician's assistant to the pediatric cardiac surgeon. Anyone who has met Katie will agree with me here that she is phenomenol.

She mapped out what was wrong with Penelope's heart and explained the diagnosis of Tetralogy of Fallot with pulmonary atresia. I was told that Penny would need a surgery immediately, but that the sugeon, Dr. Mello, was scheduled on important cases throughout the week at other area hospitals. There were two scenarios of what would occur during surgery. The preferred outcome was a complete repair. This is where the doctor would cut inside the heart, fix both the holes between the atriums and ventricles. Also, a donor artery would be used to replace the missing vessel. This was only a possibility because when working with a heart so small, the coronary arteries can cover a lot of the surface area of the heart, making it difficult to find a safe place to cut into the heart. If the coronary arteries were too much in the way, Dr. Mello was going to insert a BT shunt between her pulmonary artery and aorta (kind of like a synthetic ductus). The shunt would allow Penny to stay oxygenated so that she could grow and develop, but also her heart would grow bigger, possibly allowing the space to perform a complete repair later.

So, the advice was that we were to play the waiting game. We prayed that Penny would be kept stable enough to wait until the scheduled surgery on Monday.

Later on Thursday, I met with Penny's primary nurse, Rhonda. I loved her way of letting me keep as much control as possible since I was the parent. She also insisted that I get to hold my child so that Miss Penelope could understand that her mother was there for her. I have to say that day I got to hold my newborn for the first time since she was taken away from me in Manchester, it was wonderous. I got to smell her, feel her soft skin, kiss her warm head, and wisper all my love to her. As saddened as I was still of the diagnosis of Down syndrome, and then the news of the heart defect, I felt all the tension float away as I got to settle in with Penny in the chair.

THANK YOU FOR THAT RHONDA

The next couple of days were a blur of the NICU, coming home to find all the flowers and cards people were sending, pumping, and napping. Scott or I were always are the hospital. There was never even a discussion about this. We could never have let our daughter be alone even for a few minutes. So, we took turns staying home with Nathaniel and making sure that his needs were met. My mother also watched him a lot.

It should be noted as well, that at this time, Scott's 59 year old mother, Sandy, had been recently admitted to the same hospital to be treated for some respitory concerns. She would get into a wheelchair and get her husband to take her down a few floors to come into the NICU and visit. It was tough to see her so sick, but I loved that we could not keep her away from her new granddaughter.

By Saturday, it was clear Penelope had a very difficult time keeping her little body going. The balance to keep her respitory and blood pressure rates where they wanted it against the ever important blood oxygen saturation level (or pulse-ox) was difficult. I got a call from Scott in the middle of the Saturday night that they were going to intubate her. He came home to switch shifts with me and we both wanted to go to the hospital to see her. After we left Nathaniel with my mother again, we headed off.

Seeing Penny with the breathing tube was very traumatic for Scott, it reminded him of his ailing mother and I remember how moved I was by his tears. For me, it was honestly just one more thing. She was going to have surgery the next day and she would have been intubateted so I saw this as one less thing to worry about tomorrow! But it was still touch and go and Penny was a very sick baby. My grandmother called her nephew, the deacon and asked him to meet us at the hospital to baptize her. Scott and I were so happy for this because we didn't want to take any chances.

Welcome Kim and Family

2009-10-25T10:50:00.002-04:00

There is a new mom blogging about her family with something extra and I am excited to welcome her to the blogging community. Hi Kim!!

I can't wait to hear about all the adventures of Andrew and Hailey. If you would like to welcome her, please check her out at the below link.
http://www.ourwigglebugs.blogspot.com/

How well does discipline work for your child with Down syndrome

2009-10-24T22:08:00.003-04:00

So today, Penny was a really "bad baby." She bit Nathaniel on the cheek. Really badly. I put her in the time out corner. This was the second time I ever put her in time out. It took her awhile to stay there, but finally she got the point.

After two minutes of continuous sitting, I let her get up and led her back to her brother. I pointed to his cheek and told her that what she did hurt him and I asked her to say sorry. Boy did she cry!!! Was she said that she hurt her brother. I don't think so since I don't believe children at that age can feel empathy. But maybe a person with Down syndrome are more advanced in that area? Who am I to judge? I think it more likely that she was upset by my tone and that she was put in time out.

What do you think?

Question of the Day - Please answer!

2009-10-23T11:19:00.004-04:00

I wish I had thought of this picture for Wordless Wednesday.

My question is, "WHAT DO YOU THINK PENNY IS SAYING TO DILLON?"

If People with Down Syndrome Ruled the World

2009-10-22T09:50:00.004-04:00

Please click here if you would like to see Dr. Dennis McGuire's rendition from an address at a 2005 National Association for Down Syndrome assembly. It discusses ideas from dancing, to hugging, to what movies might be like.

Before you head over there, tell me: What do you think the world would be like if "People with Down syndrome Ruled the World?"

And I am really excited about going to the CDSC's annual convention this year and I just registered today. The guest list includes Emily Perl Kingsly, Jason Andrew Kingsley, Mitchell Levitz, and Dr. McGuire will be there to speak on his essay in person. Yay!!! So this link above is just a sneak peak for me. I know, I am so sneaky!!

2009 CDSC Buddy Walk Pictures

2009-10-21T20:45:00.002-04:00

Hey guys, this is really just so inspiring to me. Please stop by and check out the photos from this wonderful day. Team Penny Girl was definately representing!! Even my mother is in there. Ha!

CLICK HERE TO CONNECT TO THE SITE FOR PHOTOS

Penelope and CHD - Part V

2009-10-20T08:34:00.007-04:00

Fact: 50% of people with Down syndrome are born with a congenital heart defect.
You can read where I left off in Part IV here.

I left the hospital and arrived home after 10:00 pm. That was probably the longest day of my life! But. It was not over. I wanted to use the breast pump before I took the sleeping pill and went to bed. I had rented the hospital grade Medela pump from Manchester, but I realized I was not in possesion of all the accessories I thought I had saved from Nathaniel. So, I put the machine away and went to bed, hoping, . . . no praying, that everything was going to turn out ok. I cried myself to sleep.

The next morning my mother picked me up to bring me back to the hospital. (I think Scott went to finish up the loose ends at his job so he could focus on Penelope over the next few weeks.) I didn't want to push myself by driving around God's creation, but physically, I felt great. It was still hard to believe that I just had a baby the day before. First we went to Babies R Us to see about those accesories I needed for the breast pump. They didn't have it, so we treked back to Manchester Hospital. I was able to purchase what I needed and off we went to Hartford Hospital.

After parking and the journey to the NICU I was able to greet my baby quickly before I learned where the private rooms were so that I could express my milk. There were three lactation consultants at the CCMC NICU, and one woman in training, so it was a comfort to get that support. Even the attending said something to the affect that this was the best thing I could physically do for her at this point. Busy work, to stave off the feeling of helplessness. But important work none the less.

I felt like I was waiting around forever to meet Penny's cardiologist. I received word that they wanted to do another echocardiogram to confirm the diagnosis and to make sure that her heart was going to keep working until they could get her in for surgery. This day was Wednesday, but the earliest they could get her in was Monday, June 4, 2007. Of course, when I finally decided to take a quick break to grab something to eat and express milk, the doctor came and went!

The next day, my friend Audrey drove me around. I still wanted to take it easy, since under normal circumstances, I would still be in the hospital. She drove my son and I to his school to drop him off and then headed to the hospital. It was this day that I learned a lot about Penny's anatomy.

The itty bitty ductus arteriosus was being kept open by medication and was keeping my daughter alive! The ductus is not labeled in this picture, but it is the very small vessel between the aorta (AO) and the branch pulmonary arteries (PA). Penelope was born without that ever important pulmonary artery. The ductus that was kept open magically by medication is something that generally closes after birth when the baby starts to use the PA to actually get oxygen from the lungs and not from the mother. I learned that Penelope was diagnosed with Tetralogy of Fallot and Pulmonary Atresia. If she had a stenotic or narrow artery, she might have been allowed to come home for a few months until she got big enough for a proper surgery. These are the many issues that make up the diagnosis. Firstly, she is missing the pulmonary artery, or PA. In addition to the problem with the PA, she also had a hole between the two artiums (atrial septal defect, or ASD). Also, she had the hole between her two ventricles. Since she had no PA this was the only way to get blood to move in a circular path. As seen in the diagram, her aorta sat right above the hole in the ventricular wall (ventricular septal defect or VSD) and it pulled blood from both the right and left ventricles. This is called an overriding aorta. She also had right ventricular hypertrophy because her right ventricle worked extra hard to try to pump blood into a pulmonary artery that did not exist and extra muscle tissue built up on that side.

Penelope and CHD - Part IV

2009-10-19T11:49:00.007-04:00

Fact: 50% of people with Down syndrome are born with a congenital heart defect.

You can see pictures of her scar here in Part III. Or read where Part II left off here.

Scott and I finally left the Manchester Hospital a little after 7pm. Again, all I can tell you was that it was so surreal. I know there are plenty of moms that like to leave the hospital as soon as possible, but I was not one of them. Only 12 hours earlier, my daughter Penelope was delivered.

I needed to see my son again before the night was over as well as pick up the prescription for the sleeping aid so we headed out to my mother's house while the prescription was filled. I hugged and kissed Nathaniel so much that night. I had already begun to project my feelings of loss onto him and wondered how his life was going to be affected by his new sister. After I was satisfied that Nathaniel was settled in for the night, we made a quick stop back at the pharmacy and then off to Hartford we went.

Scott had stayed with Penny for several hours earlier in the day so he already knew where to go and what to expect.

It was close to 9pm when we parked at the garage. It was a warm spring evening when we walked out of the garage and across the courtyard and into Hartford Hospital. CT Children's Medical Center is adjacent to Hartford Hospital so CCMC is able to place their NICU in HH to have that unit close to the maternity ward. We were stopped briefly since visiting hours were over, but were quickly on our way up the elevator.

As we approached the large steel security doors to the NICU, I almost didn't want to go in. We were eventually greeted at the window and given nametags. On the other side of the doors, Scott schooled me on how to scrub in. I remembered back to when my baby brother Joe was born premature. I was ten and I was allowed to see him, but I had to scrub in as well. Scott and I headed to her little alcove there in the North wing of the NICU. About only five beds were permitted on this wing and it was so quiet. All the lights were off and I could hear the soft beeping of the machines. Occasionally, an alarm would ring in the distance. But in Penny's small wing, she was the only really sick one. The nurse on duty greeted us and led us into her little corner.

The first time I looked at her, I actually felt numb. A whole lifetime must have passed since last I held her at 9 am. Her eyes were so incredibly swollen that the edge of her eyelids flipped out a little, especially when she cried or was upset. In fact, the whole top part of her head was red. The corners of her small mouth were downturned and her chin was all scrunched up from the scowl. Her arms and legs were sprawled out. I tried to comfort her, and patted her arm. This immediately got her agitated and her eyes looked even more firery. The nursed warned me that it might not be a good idea to touch her while she was on the medicine to keep her heart working. "It can make you grumpy," is what she said to me.

So much time has passed since her birthday; I can't even recall how many lines were in her. But at minimum, she had an arterial line, two peripheral i.v.'s, a sensor on to continuously monitor her temperature, a pulse oximetry probe, and sensors to measure her respiratory rate. I quickly learned the meaning of the green, blue, white, and red lines on the monitor hanging above her bed space. I don't even remeber if she had a nasal canula at this point. I know that she was not on a respirator at this time, even though the prostaglandin medication she was on affects the respiration rate. I wasn't able to stay long. And even though it seemed unintuitive to leave my newborn behind me, I had to leave. I had to get out of that place.

Another great wedding!

2009-10-18T17:54:00.001-04:00

You all just have to check out these pictures. So inspiring. I am so blesssed to live in the times that we do. Penny is going to live such a full life. I know it.

Josh & Bernadette's Ceremony Highlight from AndyCam Productions on Vimeo.

Stuffy nose

2009-10-17T23:55:00.003-04:00

I am so blessed in that Penelople rarely has a stuffy nose. I know a lot of her friends have had their adenoids taken out. But not Penny.

So on the rare occasion that she has a stuffy nose from the weather or a cold or what have you, she is an agry beast. I feel so bad shen she can't sleep due to her stuffy nose. Poor baby.

What kind of tricks do you try to get your little ones clear for the night?

Penelope and CHD - Part III Chest Scar

2009-10-16T07:30:00.003-04:00

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.

Go get 'em Jaxson!

2009-10-15T08:13:00.001-04:00

I hope that all of you get a chance to stop by Jaxson's Fight. He is havng a trach put in today and it is making at least one family member nervous.

Sigh! All the challenges that we must face. Lacey, I hope that you know you are not alone. Good luck Jaxson!!

Penelope and CHD - Part II

2009-10-14T07:37:00.004-04:00

Fact: 50% of people with Down syndrome are born with a congenital heart defect.
You can read about Part I here. The next time I saw my beautiful girl, it was about 11:30 am. You can see that she was tucked away into the incubator and ready for transport to Connecticut Children's Medical Center (CCMC). Everything was still a blur. I remember the physician from UConn going over a waiver with me. I remember he had this tick and said "hmm" between practically every sentence and that annoyed me. But, he was nice enough and he promised to take good care of her en route to CCMC.

I still hadn't grasped the enormity of the situation. I look back on this picture with distaste. Why was I smiling? What did I possibly have to smile about? Why was I holding my belly like I was still full of child? I guess, I still didn't know what to do with my hands at this point. Only 5 hours ago, there was still a baby in there. Immediately after this picture I had to yell at Nathaniel for playing with the buttons. I didn't know what these buttons did. He might have done some serious damage!

Scott was welcomed to follow the ambulance. Enter friend: Mike, this kid that Scott had met only a few months ago came to visit us immediately after hearing about the news. He brought me the most beautiful flowers and stood by Scott's side the entire day. Later that year, he moved onto another job and Scott and he lost touch. He was a tremendous source of support for Scott during this time and I was glad to have him. Mike was able to drive Scott behind the ambulance. We are so blessed that CCMC was only 20 minutes away so I wasn't worried that my family was too far away. My mother took Nathaniel back to her home and I was left alone to rest.

Proir to my mom leaving, as I sat there wondering what to do with myself, the obstetrician that attended during the beginning of my labor paid me a visit. We had just met earlier that morning, as I had all of my visits with the midwives in the practice. He did not stay with me through to the end of my delivery. Another woman who labored at the same time ended up with an emergency C-section and he moved on to her when my favorite midwife arrived to deliver my daugher. Yet, while I sat and stared, this doctor came back to me. He came in to see how I was doing and to offer any advise, should I seek it. I thought that ws very nice of him.

The plan was that I remain at the hospital a few hours for observation and my midwife would discharge me after dinner. I thought in my head that Scott would find out what was wrong with our daughter, wait for her to get settled in and come back in time for a dinner together . After dinner, we would promplty be freed and then he would take me back to Hartford. I expected all would go according to my plan and I would be reunited with my daughter by 7 pm.

It seemed forever until Scott returned to my side. He couldn't recall the issues that were concerning Penelope's heart or a name of a diagnosis. But he said that the Dr. Cardio said it was pretty common and the outcome was hopeful. I was warned that she was on medication to keep her heart working until they could decide on a proper course of treatment.

I seem to remember that Scott must have ran home to do something, because I was left alone, waiting for those discharge papers to come. Dinner came and went and still no word of when I could be let out. I decided to get myself to the nurses station and get in their faces a bit. My midwife was bound to be out there somewhere. As I head out to the station, I could hear the other mothers with their babies and I started to get emotional, yet I continued on to the desk. I stood and waited for an eternity for someone to pay me some attention. Since no attention came, I walked further past the desk to the great window of the nursery. There were no newborns in there right then, but the hurt in my heart began to deepen because I could not even opt to have my baby there. I headed back to the nurses station and with each step, another tear came down my face. By the time several nurses had time for me, I was weeping. I demanded to be discharged! Why should other mothers that had their babies get to go home before me??!?!

I remember being held up by two nurses, one on each side, to escort me back to my room. On one side was the new midwife on duty. She sat in with me and let me cry. The one thing that anyone said to comfort me in those first days was from her and it sticks with me to this day. She said to me, "You grew her the best way you knew how." Which was to mean, this was in no way my fault. It was such a relief to hear these words even before she went through the specifics. My baby was a wonderful 7 lbs 5 oz. She was born at 39 weeks and 6 days! All the work I did to keep myself healthy during my pregnancy will pay off because I just gave her every advantage I could to make it on the outside. Of course, my work wasn't done. The daunting task of pumping and storing my milk was ahead, but that is another series for another week.

This midwife and I had a discussion. I remember sobbing over the fact that my son was not planned (Scott and I weren't even living together when this miracle was made.) And it was hard in the beginning to get through all that. Now, Scott and I were married, settled, and decidend to bring a new life into this world, and it wasn't anything like we planned. (Geez, I sound like a poster child for "Welcome to Holland") She told me it was ok to feel this way. In a very obvious way she expressed her concern about post partem depression for me and that she wanted me in for a check up at four weeks. She also prescribed some sleeping pills. This prompted me to voice my concerns about my expressed milk. She told me that I can take the first night off from that and my milk would still be there the following day. She ordered me to take that first night off and really get a good night sleep in order to face what lay ahead.

AS ROUGH as that was, I am glad I took her advise.

More to come in PART III

Random updates from my house

2009-10-13T09:25:00.003-04:00

+ Penelope used two signs together this weekend for the first time. She wanted more milk after she finished what she had in her cup. Thus she signed "more" and then "milk." I almost cried!!!

+ My mother took Nathaniel to Chucky E Cheese yesterday for lunch and I met up with them with Penny. She and I played skiball together and she was fascinated by the tickets that came shooting out. Much, much later,we were getting ready to head out, when Penny found a stray ticket. She picked it up and walked across the facility. I didnt' know where she was headed but I followed her at a distance. When she got to the three steps to bring her into another section, I continued to hold back. She gingerly walked down the three steps by herself while holding onto the low railing!!! Her mission was to put the ticket back into the skiball machine. lol!

+ Last week Scott left Penelope unattended in the living room while he got himself dressed to go to work. When he came downstairs to a quiet living room, he discovered Penny chomping down on a 7 oz bar of Hershey's chocolate. (I bought it for a cubscout prop.) He said her face was covered in chocolate and she tried with all her might not to give up the contraband to her father. Needless to say she was upset that he stole her prize away. I told Scott that no man should come between a girl and her chocolate. What was he thinking anyway?!?!?!

+ Penny loves dancing to "All the Single Ladies" by Beyonce and will mimick the "Oh, oh, oh, oh,. . .. oh, oh" part very well. She loves to dance and walk backward for this song. lol!

+ I finally busted out all of Nathaniel's Thomas the train stuff that he accumulated over his younger years. Penny loves them! She and Nathaniel built train systems together this weekend.

+ Penny says these words: "Hot", "Dada", "Down", "Duck", "Ah Done", "Fish", "Juice", "No", "Ha" (Hi) and "What's this?" If she hears a "k" sound in any other word, that is how she designates it. As in book, cow, cat, milk. . . . She calls all these things "Kuh!"

Penelope and CHD - congenital heart defect PART I

2009-10-12T08:59:00.007-04:00

Fact: 50% of people with Down syndrome are born with a congenital heart defect.

When we were waiting for Penny to be born, Scott and I thought that we were getting a "normal" and healthy baby. We didn't know if our child was going to be a boy or a girl, we didn't care, as long as he or she was healthy. We didn't elect for blood screening or further genetic testing. We didn't care, as long as he or she was healthy. The two ultrasounds did not indicate anything other than a healthy, normal baby. We didn't know our child carried a secret in her malformed heart. THAT we would have cared about, had we known. . .

Within minutes of her birth we learned that she had a lot of characteristics of Down syndrome. We were left alone with her to bond, but all of our questions about what the diagnosis meant were put on hold until the neonatologist arrived. At 9:00 am, when Penny was about 2 hours old, the nurse must have noticed that Penny was still an unhealthy shade of purple, and my daughter was taken away. The nurse didn't say anything to that affect when this happened. I was told only that Penny need to be looked over. When Nathaniel was born, I insisted all exams were done in my room so that he didn't have to leave my side, but with Penny, I was already worn and consented readily.

I was still in shock over the morning's events, and dead tired I should add since I went into labor around 9pm the night before and labored all through the night to deliver my beautiful girl at 7:00 am. So when the neonatalogist finally showed up some time after they took my daughter, it was a little hard to focus. My recounting of this morning's events, the morning of my daughter's birthday, is to the best of my ability.

Dr. Neo came into my room and introduced himself to Scott and me. I am sure my eyes were swollen from crying over the Down sydnrome diagnosis. But hell, I just had a baby with no epidural, so who cares what I looked like. He jumped right in to tell us that while Penny was being looked over, they realized that she was not maintaining a healthy blood oxygen saturation level (or pulse-ox). He said that they were working on her to keep her alive. That they had to put some lines in her to run some tests. And in my head, I jumped ahead, and thought that the next thing out of his mouth was going to be an unexpected, "We did everything that we could, but she didn't make it." Dr. Neo just looked so solemn, and was so soft, that I thought he was bringing me news of death. But in fact, Dr. Neo, went on to explain that there was something wrong with her heart and she would have to be moved to CCMC for examination.

My mother came in the door at this point with my son, my beautiful four-year old. I breifly wished I could be him, to not know all this chaos that was suddenly in front of me. I could see he had his spiderman pajamas under his T-shirt. A phase he went through so that he could change into Spiderman and be the Hero at a second's notice! My mother took one look at Dr. Neo, ignored the fact that he was right in the middle of talking to me and announced, "Who is this guy anyway?" with a wave of her hand directed at the doctor. I gaped and said, "Mom, he is the neonatalogist and he is talking about the baby." I don't remember if Dr. Neo recapped for my mother's benefit, or if he went on, but I further learned that he called a colleague at UConn's John Dempsy Hospital to come out and faciliate the trasport of my newborn. I later learned that my mother was annoyed that the doctor didn't introduce himself so she felt the need to intervene. I guess this is from all those years of being a nurse. LOL!

When Dr. Neo asked me if I had any questions, I couldn't think clearly enough to think of any. My mother asked him how soon I could be discharged. Where would I have been without her?!? At the time she asked that I thought she was crazy. Uh, hello? I just delivered a baby 3 hours ago! I wanted to forgot all this had happened. I wanted meals brought up to me. I wanted to sleep. I wanted to not have to leave the hospital and deal with whatever was out there in the world. Of course, a few hours after Penny was removed from the hospital, I couldn't wait to get out!

The plan was to move her by noon time and once she was in the hands of the cardiology team at CCMC, we would learn what was wrong with her heart and if she would need surgery.

More to come in PART II

ENT in One Days

2009-10-11T12:33:00.000-04:00

I know that I will post to keep you all updated, but Penny will finally have her ENT follow up on Monday with Dr. S at CCMC. I am really exicted and I hope that we will get some practicle solutions to how her speech is progressing. Wish us luck!

Karen Gaffney's latest Triumph

2009-10-10T08:33:00.003-04:00

A LONG, COLD SWIM FOR A CAUSE
October 8, 2009 06:47 PM
By Martin Finucane, Globe Staff
Karen Gaffney, a tiny woman -- 4 feet 9 inches, 95 pounds – who limps and can't use her left leg at all when she swims, nevertheless churned five miles through the frigid, choppy waters of Boston Harbor today.

You can click here to read the rest of this story. There is also a video!

My Penny Poopers and Really, What is in a Name?

2009-10-09T08:28:00.010-04:00

Scott would like me to change the name of this blog to Penny Poopers. This has been her nickname for as long as I can remember, but I don't think it would make a good blog title. lol. As any parent of a child with a disability will agree, WE CAN TAKE NOTHING FOR GRANTED! Bodily functions are no exception. Scott and I were delighted that after a very brief stint (6 days mabybe) with the NG tube, Penelope had the strenght to eat on her own and gain weight like a champ! With the feedings, came the diapers, and boy is my daughter gifted in that area as well! She is coming upon 30 months old now and we still call her our little Penny Poopers.

Her given name is Penelope Adara. I have posted on this before, but I love her name so much and this is my blog so I will brag about it all I want. Penelope was the wife of Odysseus, as in that Greek guy that took ten years to travel from Troy when the Trojan War ended back to his home in Ithaca. The Trojan War itself took ten years as well. So for twenty years, Queen Penelope was without her husband. The story goes that for all that time, she waited faithfully for him to return, and never took on another lover even though there were many, many, men at the door. An alternate meaning to the name Penelope is "the one who weaves." This is more literal because while Penelope was waiting all that time for her husband to return, she would weave every day. Adara has roots in many cultures. In Irish it means "From the ford at the oak tree." In Hebrew it means the exalted one, or one to be praised. I kind of like that meaning too, since so much attention is lavished on her at home. But the meaning we picked was also from the Greek roots, "One who is beautiful, a virgin." So as you can see, we had high expectations for Penelope from the second she was born! Scott and I had been against naming her before she was born. We had a few names to think about and had decided to meet her first before giving her a name.

I always wanted a strong biblical name for my sons, as in Nathaniel Eden, and Greek names, rich in mythology, for my daughters. Kind of weird huh?

I'm curious to know why you all picked the names that you did. Well, except for you, Chloe Sierra, I already know all about how you helped your mommy and daddy pick out your name.

I am going to tag ten wonderful bloggers so I can learn about how their names came to be. I hope you all have time for this!

THE RULES: I want you to post about your child's (or all your children's) name on your blog. Then tag ten other people on your blog as in below. Choosing a name for our child is so important when we were playing that ultimate waiting game, but I am so afraid we loose the meaning as time goes on. I mean, when do we even use a middle name?!?!?!?

I tag:
1.) Amy (even though I know Chloe's name, maybe other people want to learn. Besides. I would love to learn about the name Xander!)
2.) Jessica at Raising Joey
3.) Melissa at Master Dillon
4.) Michelle - I would like to know about all three of your daughter's names, oh and that boy of yours too if you have the time. :)
5.) Cammie at the Heflin family. Was Addy already named when you got her?
6.) Lacey at Jaxson's fight. Really, where does the name Mondo come from?
7.) Melanie at the Beatan family
8.) Renee at My Special K's - Who's crazy idea was it to have children with K names and with only 7 seven letters? Please, tell us where that came from?! )
9.) Jeana and Wayne at Feisty Kaelyn
10.) Last but not least - Tricia at Unringing the Bell.

Siblings

2009-10-08T09:00:00.000-04:00

Something I think about nonstop was brought to the foreground on one of my favorite blogs last weekend. You can read an installment of what the Ely family is going through right now by clicking here. I feel terrible that this wonderful family is going through something so stressful right now, but they are all strong and I have no doubt that it will all work out for them. Also, Cammie hit the nail on the head with her post the other day. I love how she felt the need to defend that she wasn't doing her children a huge injustice by the adoption of sweet adorable Addy.

There are many websites and organizations that provide support for the siblings of people with disabilities, such as http://www.siblingsupport.org/about/copy_of_index_html

I am often concerned about how Nathaniel processes all that goes on with Penny. On one occasion, I was suprised when he lashed out and said that he is not glad Penny has Down syndrome, that he is not glad Penny had to have heart surgery and almost die. He would rather have no friends and have a sister that didn't have to be sick then to have all the friends that he made through Penny and her diagnosis. I thanked him for his honest reaction, what more could I say? But many a time, Nathaniel told me how much he loves Penny, or how she is the cutest girl ever. Those remarks were completely unsoliciated I should add.

He clearly loves his sister. I know he will be a better person because of her, and that the benefits for him are so numerous I could not possibly post them all. But I need to confess something here. I worry. I worry that he will grow into thinking that he will need to take care of her. Now, I KNOW this will not be the case. If anything, she will end up taking care of him!! HA HA; he is just so careless all the time. I have no doubt that she will be living on her own one day. (or with a spouse. . . ) Strangely, this topic of living with Penny has been brought up by Nathaniel, but Scott and I try not to make it into such a big deal and we let Nathaniel know that he will not have to take care of her.

This is not to say I don't want to mold him into a man that will stick up for her. I mean, I am him mother. I should be able to mold him all I want. For example; Nathaniel and his friend "T" were in the way back seat of the van this weekend when T announced he was hungry and he would, "like some fries please." Nathaniel and T decided to share a large one, and I said fine, as we were smack dab in the middle of lunch and dinner time. When I handed the fries back to T, I asked him to give a couple to Penny, I know she would like some. T stated that he wasn't going to give her any, but yet waved some in her face and started to laugh. Nathaniel laughed along with T. I understand that this has nothing to do with Down syndrome or disability; just kid stuff, believe me, I dissed out my own share of mean stuff to my brothers. However, I kind of yelled at Nathaniel and asked him way he thought this was funny. I asked him to think about if he would like it if we did that to him, and told him that he was going to have to stick up for Penny until she had a voice. Bottom line: DON'T LET YOUR FRIENDS BE MEAN TO YOUR SISTER!

As he grows older, his comments give me a window into his own growth and development. I don't even know really how to answer to the latest thing that has come up a few times (Caveat: this is going to sound insensative, but we are talking about the honesty of a 7 year old) Nathaniel will preface his comment with an observation that most people with Down syndrome look weird, and then concludes with, "Penny doesn't look weird, right? Penny is so cute!" I am curious to know how you all would react to that. I told him that, "Yes people with Down syndrome do have different facial features, but that they look different, not weird." I also mention to him that Penny is still young and as she grows older, that look might become more obvious. Just to prepare him; yet I don't want to leave suggestions. . .

I know that it is natural for him to be curious and I welcome any questions. I would rather him ask me then to go out in the world and unintentionally hurt someone's feelings. My hopes and dreams for him are the same that any other mother would have.: I hope that he grows up into a caring, wonderful young man that will cherish a life-long loving relationship with his sister!

WORDLESS WEDNESDAY

2009-10-07T11:24:00.002-04:00

IS ANYBODY ELSE CONCERNED ABOUT THE MOON BOMBING?

2009-10-06T14:23:00.004-04:00

I have complete faith in NASA and I am sure they know what they are doing. However, does anyone else have images from the remake of THE TIME MACHINE where the moon was in bits and pieces?

You can click on the post title to read an article about this amazing event on Friday. Also, it says that if you have a decent enough telescope, you will be able to see this occur on Friday at 7:30 am.

Down syndrome doesn't keep Cordova man from living full life

2009-10-06T09:58:00.000-04:00

By Mary Powers , Memphis Commercial AppealSunday, May 3, 2009

The Monday morning soup kitchen had just closed when his boss arrived with his next assignment -- vacuum the four second-floor classrooms.

"This is my baby," Kenny E. Thielemier Jr. joked, as he retrieved the upright vacuum cleaner from the closet and headed down the hallway to the elevator.

He spent the next 15 minutes moving chairs and managing the vacuum's long cord as he and the appliance moved efficiently from room to room.
Before his work day ended nearly six hours later, he swept and mopped floors, carried bags to the trash bin outside and refilled the votive candles in the sanctuary of St. Mary's Catholic Church.

After three years as a part-time St. Mary's custodian, Kenny, 23, of Cordova, knew the routine.
After the recent breakup with his long-time girlfriend . . .

YOU CAN READ THE REST OF THE STORY BY CLICKING HERE OR ON THE TITLE. It's sort of long, but a great human interest piece.

New Advice For Doctors Diagnosing Prenatal Down Syndrome

2009-10-05T09:40:00.000-04:00

New Advice For Doctors Diagnosing Prenatal Down Syndrome
Article Date: 29 Sep 2009 - 3:00 PDT

New prenatal tests for Down syndrome are soon to be offered to all pregnant women across the United States, yet telling an expectant couple that their child will be born with Down syndrome is a task very few physicians are trained for, claims research published in the American Journal of Medical Genetics. The study, which reviewed decades of surveys and interviews, offers several recommendations for how physicians can best deliver . . .

You can read the rest of the article by clicking above.

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Garth Brooks, "Standing Outside the Fire" Video

2009-10-04T09:03:00.001-04:00

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

2009-10-03T09:10:00.002-04:00

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

2009-10-02T09:52:00.002-04:00

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!!!

2009-10-01T08:26:00.005-04:00

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.

2009-09-25T10:32:00.003-04:00

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?

2009-09-23T14:26:00.007-04:00

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

THE RESULTS ARE IN!!

2009-09-22T11:06:00.003-04:00

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

2009-09-22T07:35:00.003-04:00

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?!!"

2009-09-21T14:51:00.002-04:00

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

2009-09-18T10:29:00.003-04:00

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!

2009-09-16T09:16:00.003-04:00

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

Always Remember 9/11/01

2009-09-11T09:18:00.003-04:00

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 :)

2009-09-10T20:20:00.008-04:00

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

2009-09-10T12:52:00.003-04:00

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?

2009-09-08T14:53:00.002-04:00

Off To the Farm!!

2009-09-05T09:24:00.001-04:00

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

2009-09-04T09:48:00.003-04:00

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.

2009-09-03T10:07:00.000-04:00

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

2009-09-02T10:21:00.006-04:00

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!!

2009-09-01T09:53:00.005-04:00

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

2009-08-27T20:40:00.002-04:00

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

2009-08-24T09:28:00.008-04:00

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!!

2009-08-22T08:40:00.004-04:00

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

FlashBack Friday

2009-08-21T10:41:00.002-04:00

Memorial Day - 2005

I am still a sucker for flattery

2009-08-19T15:00:00.004-04:00

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

What every crazy fun night at home needs!

2009-08-17T22:20:00.006-04:00

Make an on-line slide show at www.OneTrueMedia.com

THEIR VERY OWN PENNY!!

ENT follow up

2009-08-12T23:49:00.002-04:00

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

2009-08-12T08:22:00.017-04:00

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

2009-08-09T13:52:00.003-04:00

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

2009-08-07T10:34:00.005-04:00

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

2009-08-05T22:26:00.005-04:00

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

2009-08-05T13:51:00.004-04:00

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

2009-08-03T11:00:00.002-04:00

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

2009-08-03T09:00:00.003-04:00

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

2009-07-29T16:12:00.000-04:00

Pucker up!!!

2009-07-24T15:27:00.002-04:00

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

2009-07-21T08:53:00.002-04:00

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

2009-07-20T13:54:00.003-04:00

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

2009-07-16T18:00:00.000-04:00

Make photo slide shows at www.OneTrueMedia.com

Ramdon Thoughts

2009-07-16T09:27:00.003-04:00

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

2009-07-13T22:27:00.004-04:00

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!!

2009-07-13T22:25:00.002-04:00

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

2009-07-13T22:20:00.004-04:00

Little Miss Delicate Fingers

2009-07-13T17:37:00.002-04:00

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

2009-07-10T11:05:00.004-04:00

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

2009-07-09T18:16:00.002-04:00

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

2009-07-05T21:20:00.003-04:00

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

2009-07-04T11:05:00.003-04:00

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?

2009-07-01T17:23:00.002-04:00

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

2009-06-23T15:45:00.002-04:00

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?

2009-06-19T12:02:00.003-04:00

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!!

2009-06-15T13:33:00.003-04:00

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. . . .

2009-06-12T11:36:00.002-04:00

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!

2009-06-08T10:44:00.003-04:00

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

2009-06-05T13:22:00.002-04:00

"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.

2009-06-05T10:23:00.003-04:00

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?

2009-06-02T10:27:00.004-04:00

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!!!

2009-05-29T10:13:00.003-04:00

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

2009-05-27T07:36:00.003-04:00

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?

2009-05-26T10:22:00.003-04:00

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!!

2009-05-24T07:46:00.007-04:00

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

2009-04-21T10:59:00.000-04:00

Baby Steps

2009-04-13T20:19:00.003-04:00

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!

2009-04-02T23:09:00.003-04:00

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!!!