Friday, January 23, 2009

Jan 22nd: Wardrobe Malfunction

This is how I found Annelies this morning. Since she is starting to grow out of the outfits given to her by Aunt Ericka, she had to resort to wearing a nightgown. They are practical since they have an opening in the bottom for easy access. Well, it appears the opening in the top is practical for her for easy escape. She wiggles her way up while she sleeps, and the nightgown stays in place, thus exposing her shoulders and more if I don't get to her quickly. I laughed so hard when I saw her, and got my camera (god knows what she was thinking). The look she gave me was kind of like: Yeah, this is what happened to me. What are you gonna DO about it? Poor child. LOL.

And to think that Aaron was all concerned about having a daughter, and how she might dress during her teenage years. We can not drive through Loomis (especially around the time school lets out in the spring and summer) without him commenting on the way teenage girls dress these days (where was he in High School, I wonder? I don't think that much has changed...but Oh well). So a week ago or so, when we saw an interesting outfit, I looked at him and said: Well, with Annelies having Ds, this may be an issue you never have to worry about. She may have a different mind set from 'typical' teenagers when she gets to that point. How wrong was I?

Wednesday, January 21, 2009

Jan 21, 2009: Mixed Feelings

Today, the company I work for laid off 4% of its workforce, approximately 350 positions. So many mixed emotions there. A large group of my Department was let go. Many people who were let go were really positive about it, they have plans to go back to school and/or stay home with their kids, or have other jobs already. What saddens me is that positions were opened in India in order to cut positions in the US. This makes me mad and sad. The sarcastic part of me thinks maybe in a few years India will be oursourcing to the US. Sad LOL. Many of the positions cut were in IT/Help desk, about 300 (from what I heard).
After working in the same department for over 8 years, you can't help but feel about your co workers as a kind of extended family. You see them every day, they are a part of your life. To have a group of them cut out of your day to day is tough. You are grateful not to be let go but you feel guilty for feeling grateful because you know the people who did get let go. You wonder how these decisions are made. Another sarcastic part of me feels that whoever made these decisions still has a job.
I was close to some of the people let go, specifically one who worked on our floor. She and I went through the baby stuff together when I had Marco and she had her daughter. She is one of the most positive people I know. She is really positive about this whole thing, and will be successful at what she chooses to do next. I will so miss seeing her on a day to day basis though. Good thing there are things such as facebook to keep people connected these days.

Jan 21, 2009: HAPPY BIRTHDAY, MARCO!!!

Today is Marco's second Birthday! He will be going to school, but only for a short day. Dad is working today, so Marco, Annelies and I will go up to Lincoln to the Grandparents and spend the night. Marco's Birthday will be celebrated on Sunday with friends & family. Attached is a picture taken by Liselot. This picture captures the essence of Marco, basically a very happy little guy.

Have a nice day, everyone!

Tuesday, January 20, 2009

Jan 20, 2009: Echo Cardiogram

Today, we had to meet with the Pediatric Cardiologist for a follow-up echocardiogram. I was a little nervous. All babies are born with a 'hole' that seperates the 2 upper chambers of the heart, which allows for blood to be pumped through. This is because in utero, the lungs do not function and the heart does not need to pump blood to them. After birth, the lungs start circulating blood to add oxygen, and this hole closes since it is no longer needed.
The findings were as follows: Annelies still has a small hole between the upper ventricles, called PFO: Patent Foramen Ovale. The Doctor is not worried about this, he is confident it is closing on its own. She also has a heart murmur, which is caused by the openings to the lungs being a little on the small side. This is called Periphery Pulmonary Stenosis (PPS). This is a very routine thing to have happen, not even indicative of Ds, and the Doctor feels confident that this, too, will go away on its own. (Lots of people have heart murmurs, and this is a very common cause). So, everything looks very hopeful. This Doctor was absolutely awesome. When we asked questions, he drew the heart on a piece of paper, and explained it all clearly to us. Often, you kind of get a general explanation, because the Doctor is in a hurry and needs to go on to the next patient. Somtimes the Doctor kind of talks down and gives you a feeling he/she knows so much more and there is no way you will understand so they don't even try. This one took his time and made sure he answered every last question we had. I was impressed. It was a positive experience, and Annelies bahaved like a champ. She is such a good girl :)

Tomorrow, Marco turns 2!! I just finished putting together the treats for him to bring to his class tomorrow. We will have a party for him on Sunday, a lot of people are coming. I am planning this party and also one for my Sister in Law's B Day this Thursday, so this is a week full of party planning and cooking. I am enjoying it so much, and am realizing this is something I am good at! Maybe I missed my calling. Of course, the hospitality indusry is taking a huge hit in this economy so now is not a time for be to become entrepreneurial in this field, LOL.

Aaron and I were at Costo today (shopping for the aforementioned parties) and had lunch there afterwards. We had Annelies with us, and Marco was at my mother's. An elderly lady approached us and told us she absolutely HAD to look at the baby. She was really nice and told us how cute she thought Annelies was. We talked for a while. Afterwards, I turned to Aaron and told him how I kind of almost feel the urge to tell people that the baby they are going gaga over has Down Syndrome. Kind of almost like as if to ask them if they would still feel the same way about her. He understood exactly what I was saying. Personally, I feel that if I were to do this it would not be fair to Annelies. She has the right to have people go crazy over her like any 'normal' baby, right? And not to have to start her life out with a 'label'.
When she gets older, it will probably be obvious to a certain degree that she does have Ds. We will get attention then, I am sure. Most of it will be positive, but I am know there are still people who live in the dark ages and will label her in their minds as 'retarded', and actually feel pity for me and/or Aaron and even Marco.
I don't care for the word 'retarded', it sounds harsh. My most recent reading now has the definition of "cognitive ablilty" and "intellectual disability". I find these terms a little less harsh than "retarded". Funny enough though, I was at the barn today watching a lesson. The girl riding had to try to remember a course and was having a hard time of it. She said she felt so retarded. I was not in the least offended. I am glad about that, I am not too sensitive. I don't want people to feel like they have to walk on eggshells around me.

Down Syndrome- Some Statistics

Statistics for the US:

  • Approximately 6000 babies are born with Down Syndrome each year in the US. This is about 16-17 babies per day.
  • Overal odds are 1 in 700 in overall births for a baby to be born with Ds.
  • Odds increase with Mothers age but 80% of babies with Ds are born to mothers who are under 35 years old.
  • Ds is not only caused by the egg, it can also be the sperm, although the chance is less.
  • Currently there are approximately 340,000 people in the US with Ds.
  • Survival rate is to about 55 years, but this is an average. I think if you look at Ds babies who are born without a heart issue, this age may be close to the number for non Ds people. Also, open heart surgery on newborns has become 'routine' just in the past 15 years, so I think that initial rate is artificially low.
  • One I do not like: Chances of Leukaemia are 15-20% greater for a person wioth Ds. Generally it is the kind of Leukaemia toddlers get. While knowing in the back of our heads the realities, we will not live our lives in fear, and not let anything get in the way of our enjoyment with her in our lives.

Statistics for The Netherlands:

  • One in 650 births, and 80% are born to mothers 35 and younger.
  • About 35%-40% have heart defects (smaller number than in the US).
  • 1 and a half times as many babies are born with Ds in the Netherlands than 20 years ago.
  • 16 in 10,000 babies are born with Ds.
  • In 2003, 322 babies with Ds were born in NL. (In 2003, the population in NL was determined to be 16,149,000 by the UN.)