Feb 7th: Marco and the Grapes

Marco Loves (with Capital L) grapes. To such a point that he was able to hunt down the container I had sitting on the counter (had not put it back in the fridge yet), and somehow get it to the floor (the counter is still higher than Marco, so for him to get it on the ground without dropping it was surprising). I was feeding Annelies, and usually can hear what Marco is up to (yeah, another one of those skills that seems to be born when the second child is: the skill to hear what child #1 is up to.) I was listening to him but did not hear familiar sounds, so I had to take a peek. Then I had to get my camera, because he was just so involved trying to get the grapes off the bunch. So cute. I guess if he is going to sneak tasty foods, it is good that they are somewheat healthy as well, right?

Jan 30th, Feb 6th: Intake Meeting with Placer County- First PT Experience

Jan 30th:

The purpose for Annelies's intake meeting was for the coordinator to assess our needs, answer any questions/concerns we might have, and let us know what the county offers for Early Intervention. EI is needed to give Annelies the 'tools' she needs to develop to her best potential. These services are provided and paid for by the county. We had no idea of course as to what is available. Since I still have the 'deer in the headlight' feeling at times (I am not going to lie about it, I keep myself very composed when I meet with people, but there are times I still have difficulties) I hadn't completely figured out what needed to be done in the long run for Annelies. What was so nice about the meeting was that they came to us and explained everything, and gave us a binder with information about resources available to us.

We met Esther, a very nice lady who will be part of our lives for the next 3 years (at age 3, the school district takes over for special needs). Esther is a Child Development Specialist, she will be working with Annelies and us on PT, OT and ST type things (Physical, Occupational and Speech). What strikes me, by the way, is that every single person we have met on this journey who works in this type of field absolutely LOVES what they do. Having someone like that come into your home and work with your kid is such a positive experience. Esther will also come to the daycare as well as my Mom's house, both places where Annelies will be spending some of her time when I go back to work.

Feb 6th:

Our first PT with Esther. Esther spent some time holding Annelies, and getting an idea as to where she is with her body. She observed her on her tummy on a small Boppy pillow, lifting her head, and was impressed that she had decent comtrol, and did it for such a long time. She worked with Annelies to get her to come up into a sitting position with her arms and hands towards her 'midline', and her head steady. Annelies did really well, but when she was done, she was DONE. Annelies tries very hard, but when she is done, she will absolutely let us (and preferably the neighbors) know. I am happy about that, she works hard but is most certainly her own person. As a fun break, she got to be in a swing (see picture) made of lycra. The lycra is nice and stretchy and gathers her body together (does not allow her limbs to fall to the side so much - even though she has decent limb control-). See, now this is a good use for lycra. Wearing it around our thighs when excercising is NOT. It was so cute to see her in the swing, looking up at us as if to say: Whaddareya doing? She looked really comfy in there though.

Jan 27th: 2 month checkup for Annelies, 2 year for Marco & some random thoughts

Today we had 2 Pediatrician appts: 2 month well-baby for Annelies and 2 year well-child for Marco. We decided to take one child at a time, and leave the other one with my Mom. We wanted both to be there for both appts, and be able to give it our full attention. This resulted in a lot of back & forth driving, but well worth it!

Dr H was happy with both kid's progress. Marco needs to see a specialist for his feet, he kind of walks on the insides of his feet. Really weird, because he has high arches, so no flat feet. He might need some inserts, but does not seem uncomfortable. I guess the 2 year appointment is the last one of the well-child appointments. Next round of shots are not due until 4 year old. So Marco will not see Dr H on a regular basis unless he is sick (let's hope this does not happen often!).

Annelies is still growing and gaining well. She weighs 10 lbs 12 oz and is 22 1/4 inch long. Still towards the high-end of the charts, which is good. Her progress is good. She is becoming really social, making faces (she makes lots of faces) and smiling when you smile at her. She is starting to grab her bottle and has been grabbnig fingers since birth. At this point, she is blessedly sleeping 12 hour nights (has one this the past week). Her meals during the day are a little less often and she drinks more per meal. She drinks about 24-30 oz per day.

Dr Hopper has a 20 year old patient whom she has been seeing since age 12. This girl has Ds also. She currently attends Sierra College. I haer more and more positive stories like that, and it makes me feel good & hopeful.

As a parent it is normal to have hopes, dreams and desires for your child. When you have a baby and you see a child a few years older doing something (for me with Marco, it was seeing a little boy kicking a soccer ball around in the park) you can imagine your child doing that one day, or you doing it with the child. A child offers limitless hopes and dreams for the future to a parent. When that child has a 'disability', things are a bit different. During the first few weeks of Annelies's life, I remember vividly being at Baby's R Us. I saw a 5-ish year old girl with her Daddy. She was riding on his shoulders, laughing. Pretty dark pig tails with ribbons, a tall and lanky girl. I became overwhelmed with emotion because I did not know what to picture for my Daughter. I sometimes still don't. It hurts to think that when she gets a little bigger, and the Ds is more obvious, she might be 'dismissed', people might feel sorry for her/us when they see us. It might be the first thing people see about her. It may not bother Annelies, depending on how cognizant she is. It may not make sense to worry about things that have not happened, but it is the reality of how it is. I have read a lot of things about Ds in my research, a lot of what parents have said, felt, gone through. It is what it is. Most of it is good, though. The 'public' in general is more open, tolerant and educated these days. I know for a fact though, that when I am out with her in public, I will be as proud of her as any parent is of their kid. I have the right to be so. I already am :)

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?

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!

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.