Sunday, December 13, 2009

12/10/09: Annelies Goes International

The big day began with a telephone call to tell me we had an emergency with the system at work (I must say, neither of my kids kept or woke me up as much as this 'newborn' system we migrated 2 months ago, LOL. Thankfully I get PAID to deal with this system). There have been too many of these early mornings in the past month, but because we were getting ready to skip the country I had enough energy to deal with what I could before handing it off to my co-workers so I could finish up packing and bring Marco to school.
It was difficult to say goodbye to Marco. He cried a little (he usually does now, the school is still so new for him), which made it even harder. Marco is in good hands while I am gone, getting some quality Daddy-time, and the rest of the time will be with Oma or at school.
I was still packing when Leif arrived to take us to the airport. It was a nice drive to the airport, all the work-worries kind of dropped away and I felt so good getting away from it all and just not thinking about it anymore.
Check-in went quickly, I was in the line for families going through security so I had help from others (it is a bit of manouvering with a child and a stroller by yourself, but not impossible). When we boarded I kind of had a small feeling of "ohmygod, how are we going to survive the next 10 hours? Cheapass Dutch person I am, of course I did not get a seat for Annelies. She was going to be in my lap the whole flight (or on the floor or whatever I could pull together. If I can get something for free, by god, I will. So proud of my roots!!! I was thinking: will Annelies behave or will she be loud and abnoxious? Will I regret not shelling out that additional 800 bucks for another seat (Shit, that IS a lot of money), but that fear was alleviated quickly because there were a lot of kids around us who were louder than she normally tends to be (Yes, that is saying a lot because Annelies, like the Vlaming side of the family, has a good set of pipes and does not shy away from using them).
Takeoff was smooth, I had a bottle for her and she kind of fell asleep as she was drinking. One of the flight attendants came and brought us a crib for her that I was able to put in front of my feet. A word about the service on KLM when you travel with a baby: EXCELLENT. I was impressed and immediately put at ease. The aforementioned steward came and checked on us 4 times during the flight to ensure we were OK. I also sat next to a Mom who had a 5 month old who travels back and forth quite often (she is Dutch, lives in Oakland with her Husband who is from India whom she met when he was doing an MBA in NL). We talked and had a nice time.
Annelies woke up around 3 hours into the flight and was up for about 2 hours. I fed and played with her, then put her back in bed to let her fall asleep which she did. It was awesome. I had a little TV screen where I watched about 4 episodes of the Office and 2 whole movies with no interruption. I was in heaven. Any mother is going to understand me, no kids and no work, no phone just me and a pretty comfy seat (I had the wall in front of me so put up my feet) and my own little TV. That is how I got through the 10 hour flight very quickly. (Almost too quickly, LOL).
Right before we started to land, Annelies woke up (they had opened the little window covers and turned the lights back on) and I repeated the routine from takeoff with a bottle of milk for her, it went beautifully, no crying, no fuss. She is such a trooper!
I will post pics as soon as I can figure out how to load them to my account...

Sunday, December 6, 2009

Dec 2, 2009: Happy First Birthday, Annelies!!!

She is ONE!!!!

Unbelievable that one year has passed since Annelies was born. In some ways it went really fast, in others it feels like we have lived a lifetime. One of Annelies' birthday presents was her 1 year checkup with the pedi. Since we are traveling within a week I asked to move her shots to next visit. That way we can be sure she will not have any residual effects from them.

Her stats are AWESOME: 95th percentile for height, 75th for weight and 25th for head circumference. This on the "typical" charts. Dr H (the pedi) is super impressed with how Annelies is doing. She is cooing a lot and says "Hi" appropriately (like when we say it to her), and is starting to wave. We have not done a lot of signing with her, because we need to lear ourselves, something I am planning to focus on more this upcoming year. She sits up and gets herself from sitting to laying down position easily back and forth. Today she said "Bye" (or at least, it sounded like it to Aaron and I). She is crawling, just needs to figure out that it is faster to crawl then to roll to places she wants to go. She babbles a lot, all syllables, with intonation. She will begin with Eric, the ST who has been working with Marco, in January. (When Marco turns 3 his services will mostly come from the LUSD (School District). So I already put in for Annelies to get that spot with him. I learned, above all, to be aggressive, proactive and organized on behalf of my kids. This has helped me with work too, so that has been a good side effect :)

Enclosed are a couple of pics of Annelies and Marco in bath on the eve of Annelies' B-Day.

Sunday, October 25, 2009

Oct 17, 2009: Where Is Her Penis?

This little gem of a question was asked to me by 5 year old Riley, my friend Jenna's offspring. I loved it. I loved it because it was so simple. To him, what was lacking in my daughter was not a few brain cells, eyes that go to the side and not up, or any kind of 'look'. To him, she was only different because she does not have a penis. Like any girl would be!
Annelies and I stayed with my friend Jenna and her to kiddo's, the aforementioned Riley and 1 1/2 year old Jace. For 3 days, Annelies basked in the glory of being loved and admired by Riley. Annlies took a bath with Riley, Riley fed Annelies her bottle, he tried to get her down a play slide, helped her play on a toy horse, and told her every 15 minutes that she is beautiful. Jace took it all in stride, but you could kind of tell at times he was thinking: Hey, waitaminutehere, I was the baby...what happpened?!?!
Riley spent the last night we were there at his Dad's place. The next day, when he talked to his mommy, he told her to tell Annelies good bye from him, and to tell her she is beautiful and he loves her. And don't forget to tell her she is beautiful! Yes, I admit that my heart kind of stung at times, knowing that when they are 15 years down the road, most likely she will not be getting that kind of admiration from 'typical' boys her age. That is why we enjoy it now, as much as we can. I must also say, though, that when I saw 17 year old Chris with Annelies (when I visited Robin- see previous post) I thought: "Heck, if Annelies meets someone half as sweet and wonderful as Chris, she will be a lucky girl!"

Wednesday, October 21, 2009

Oct 16, 2009; Past and Future

Today was a wonderful day. Annelies and I woke up in the Denver area (Aurora to be exact). It was the first full day of our Colorado adventure. Since we did not have any 'dates' until the afternoon, I decided to head North to Greeley, my old College town. We stopped on our way out of town at Starbucks and headed North on I-25. We made it to Greeley by 10 am (I always get up early when I travel, so did Annelies, but she is always early). It was so strange and cool to be back on the campus! We drove around, and I snapped pics on my cellphone to send to Aaron. A lot has changed, a lot of nice new buildings. I loved the campus back then, and it is even nicer now. We parked the car, and took a long walk around Campus. In front of my old dorm, we took a break and I gave Annelies her bottle (see pic). It was so cool to be back. The weather was glorious. It was only today, sitting there looking at Lawrenson Hall in front of me, that I realized how much I appreciate my College days there. It was a rich experience, difficult at times because I funded most of it myself. Stressful sometimes because I worked my way through, and was so often freaked out at the thought about having to support myself afterwards. (Who the heck was going to give me a job??? LOL! Never should have worried about that.) I would not have had it any other way. I sat and reflected and felt good about where I came from. Students there are so nice, I talked with a couple of them. Then I did something I was never able to do during my college time: I spent $200 at the store to buy sweatshirts and T shirts and other gifts. That was awesome!

In the afternoon we headed to Arvada to meet Robin and Teri and their kids. Each of these women has an older son with Ds, and a younger daughter (Robin's daughter Janet is 13, Teri's daughter Suzie is 2). It was great to see Annelies hit it off with Suzie, they played on the floor (Suzie is a quick crawler, but will probably be walking soon). Teri's son Chris held Annelies for a while. Seeing these older kids with Ds was a revelation to me. It showed me how rich Annelies' future has the potential to be. After the visit with Teri, Robin and kids Annelies and I headed to Applebee's to meet Jaime and Makinna (see picture...Annelies giving her Lip Of Discontent to Makinna, LOL). Makinna just turned 10, she is a lovely young girl attending 4th grade in a typical school. She is more like all other 10 yr olds than different. She talks in slang, loves horses, and shoes. She has friends in school who love hanging out with her. Once again, my heart was filled with excitement and hope for Annelies' future.

As I drove home, I reflected back on how this day took me to a piece of my past, and then showed me possibilities for the future.

Saturday, October 10, 2009

Oct 10th, 2009: NICU Reunion

Today we were invited to Sutter Roseville, for a reunion of NICU patients from the past year. The NICU has now been open for a year, and we were absolutely lucky that it opened when it did. I recognized all of the nurses who were crucial to our stay, they were all there (except for one) which was AWESOME. We chatted, I took pictures and they lined up to hold Annelies. So cool. They were genuinely happy to see her, and thrilled that she is thriving. I also saw the people whose little girl shared a room with Annelies; they were born on the same day. I took some pics and have an email address to stay in touch. (I always regretted not getting their information before we left, but that time was such a daze for all of us...).
Annelies passed her 10 month B day, unbelievable how quickly time goes. We are planning a trip to CO next week, to visit my friend Jenna and also someone we met since we started this journey. I am so looking forward to it. Some 'girlfriend' time, I am very much due for that! It will be just Annelies and I, and my first plane trip with a baby. Only 2 hours, so it should be OK. If this goes off without a hitch, we will go to NL this December to visit my family. Since Annelies is still 'portable', it is a good opportunity. I regret I never did this with Marco when he was this little, so now I will take that chance.
We are thrilled the fall has arrived. We are looking forward to visit Apple Hill in november (hopefully with friends who have kids- it is a matter of arranging our schedules), and the SUDS walk at the end of the month. I hope to do some kind of Christmas open house this year. It is also time to think about Christmad cards again!!

Sunday, October 4, 2009

Oct 4, 2009; Some Pictures

Today was such a lovely day, we are finally getting some fall-like weather. I stayed home with the kiddos, took a walk with them, did a bunch of stuff around the house (unpacked more boxes) and took some pictures of them together "posing" for the first time. So much fun.

Saturday, October 3, 2009

Oct 3; Just Some Thoughts

Before I had kids, and was thinking about what it would be like, invariably my mind would wander to the "What Ifs". One of these "What Ifs" happened to be Ds. What is I have a child with Ds. How do parents do it? There is no way I could handle that (I knew nothing about Ds). I also had a hard time believing that parents with a child who had a disability of any kind could possibly love, bond with, and feel proud of that child the way a parent loves a 'typical' child. Little did I know. When Marco was born, one of my first emotions was a feeling of relief. He did not have Ds. I remember looking at Aaron and saying over and over: "He is OK, he is OK". Meaning: "He does not have Ds". I thought that was the key to happiness, my child not having Ds or anything else (the reason I was scared of Ds in particular was my age. It could also have been that I always, deep down -no pun intended!!- have known that this was going to happen, and I always pushed that feeling to the very back of my mind.) Anyway, life with Marco was and is wonderful. Then Annelies came along. And after those first difficult, confusing hours, I learned the best lesson yet. I love my child. First of all; my children are kids before anything else. They happen to have some things going on, and we are getting them the best therapy we can possibly get them. We are learning to be advocates for my kids and we do this with all the love and persistance we can muster. It is the most important job I will ever have, and I am happy to do it. But they are persons. Kids. People. They will eventually be valuable participants in society, like all of us.

Going back to those thought I used to have, I actually felt pity for parents of kids who had disabilities. I now cringe at the idea that someone may feel that way about me. Of all the things that could be the worst (besides anything that directly relates to the health of my kids), the fear that someone might pity me is the worst. Interesting, isn't it? I know there are/will be people who do. And I want to tell them to be happy for me (I mean, how freaking CUTE are they?!?!?!) LOL!!!) Not a day goes by where I don't feel so, so overwhelmingly happy and grateful to have these kids and Aaron in my life.

Wednesday, September 9, 2009

09/09/09: The Aftermath

So it has been a week since Marco's diagnosis. We have been on a bit of an emotional roller-coaster. At the same time, life goes on. Kids still need to be cared for and jobs still need to be done, so there is not really a lot of time to mope around. We are not mopers anyway, but I have certainly had moments of feeling sorry for myself. Then there have been the moments of jealousy towards everyone I know who has 'normal' kids. Not in a bad way, so please do not avoid me if you read this and are near me. Nor will I come and steal your kid and leave you mine. LOL. I have been assured that these feelings are normal parts of coping with a tough situation.
One thing I started doing a lot was looking at Marco's behavior and thinking: Is that an Autism thing or is that a Toddler thing? I don't think Marco throws tantrums more than the average toddler, but he does get really impatient with himself. On the way home today, he started playing with his shoelace. He unthreaded it and tried to re-thread it. He was successful. Now, I would consider this an advanced fine motor skill for a 2 1/2 year old! But he will get upset with himself if he does not get it in the first try. (Ohmygod, he kind of sounds like me at work. LOL. Much of my job is trying to figure out things and sometimes I want to cry/scream/curse if I can't. At least, I do tend to get impatient with myself. ) I also started giving him brief commands when I want him to do something. Repeat until he does it. And he totally gets it!
Then, I freaked out because I read somewhere if you have one sibling with Autism, the others have higher risks. ACK. I mean, come on, you say. Annelies has enough to deal with with the Ds! I agree. Yet I have read about instances where kids with Ds ALSO had Autism. So I started drilling Annelies like a mad woman when we were doing her PT excercises this weekend. I made her hand me a toy, and I would hand it back to her, back and forth. And switching hands. And making eye contact. And calling her name to get her to look at me. I bacame drill seargeant Mommy. Annelies finally gave me a look that said: WTH is WRONG with you?!?! So I laid off. (Today in her Wee-play class, the teachers observed how good Annelies was about grabbing a toy from me, though, so we made significant progress. Go us!)
The bottom line is, and this goes for both Aaron and I, we love and enjoy our kids. We appreciate the challenges in front of them, and admire them that much more for being able to tackle those challenges, and overcome obstacles with grace and a sense of humor.
I also want to thank all our friends & family. Once again, your outpooring of support, words of encouragment and faith from near and far has been none less than phenomimal. Thanks, from the bottom of our hearts!

09/02/09: Annelies is 9 Months Old

Hard to believe that Annelies was born 9 months ago. She is 9 months old, and thriving. She passed the 20 lb mark and is 28 1/2 inches long. These measurements put her in the top 75 percentile of typical growth charts for weight and length. She is able to sit independently for long amounts of time, and can spend some time on her hands and knees with hip support. She is starting to army-crawl a little, but sometimes goes sideways or backwards. Not sure how she does that. She is incredibly talkative, and babbles a lot with influctions/intonations in her speech, really cute. She also laughs out loud. I remember Marco doing exactly the same at that age. She is a little, uh, louder than Marco was though. She is starting to be interested in toys, and reaching a lot for different things we hand to her. Eating is going well (hence, the healthy weight). She eats a lot of fruit and is becoming more familiar with vegatables. I am preparing foods a little more lumpy so she gets used to texture. She is not bothered by this.
I am kind of forgetting what 'typical' milestones are, not really keeping track anymore of what Annelies does and how 'far behind' she is. I know some of the major milestones, like walking of course, but am not so bothered anymore that she will be developing at her own pace. That said, she really really likes to stand up. When she is on my lap of on the floor in front of me, and I grab her hands, she is up on her feet in a flash. So cute. But the biggest factor in standing is trunk control, if she does not have trunk control, she needs to lock her legs to stand up. She is getting much more trunk control since she is sitting up independently now, so she certainly is getting stronger.
It is hard to believe 9 months went so quickly. Soon I have to start thinking about planning a 1 st B-Day party for her!

Tuesday, September 1, 2009

09/01/09: Here We Go Again...

So when Annelies was diagnosed with Ds, and I was kind of getting used to the diagnosis, I started to look at things that could be worse than a Ds diagnosis in order to help myself get past that moment. I am sure there is a fancy Psychological term for it. One of the things I said: Well, at least it is not Autism. Because my view of Autism was as bad as the one I had of Ds (I thought all kids with Autism were like Rainman, not able to have any kind of connection, severely cognitively delayed except maybe in one area where they were savants). Well, I get to eat these words today. Today we had an appointment with a Psychologist for Marco, to basically check out of he belonged on the Autism scale. And he does. On the mild side of the spectrum. Marco's indicators for Autism are that he does not share joy with others (I guess it is 'innate' for kids to share joy over a toy or a new thing, they show this my looking at the toy/object, then at the person near them. He does not do that. He shows joy, laughs and smiles, but does not look at us in such moments) and he does not make appropriate eye contact. Physically, he flaps his hands when he is excited (I always thought that was just a cute Marco characteristic) and he used to walk on his toes a lot, now he does it less to almost not. So he is on that cusp.
In the back of my head I know that this is actually something that can be overcome. But I have so many thoughts running through my so, now I am on that train, too. WTF!?. I mean, really. (and you have to realize this was in the last 12 hours, and I am running a 102 degree fever right now too, so I am rambling). Why us? Aaron and I were not even going to BE parents. We were going to not have kids, and be selfish and do what WE wanted. And...the worst thought is that I am an absolute failure as a procreator. (This is hard, buit those who know me best know that I tend to beat myself up quite often). Now, lest you freak out about me saying this: I would not change my kids for the world. I love them more each day, and that is endless. My pride for them could not be bigger. But I am a bit miffed at whoever thought that we could handle this. But somwhere in there, I know we can.
In a moment of clarity, Aaron said that our kids will balance each other out: Annelies will teach Marco to share joy, and Marco will teach Annelies intellectual stuff she will need to learn to get through life. That was the most beautiful thing I have ever heard him say. I think in the end we will all be stronger. Not feeling so strong right now though. One thing I learned about Autism is that 70% of people who have it are indeed cognitively impaired (the Psychologist said "retarded" but through my Ds connections I have learned that this is not a PC term to use..). Marco's IQ test indicates that his IQ is in the normal range. So we have that at least. He also said we need to 'challenge the diagnosis', which was nice to hear. He is not putting a label on our kid. He feels that there is a big chance that Marco can come in at 5 or 6 years old, and repeat the test and have the diagnosis reversed. He has seen that happen many times in cases similar to ours. He also said we needed to be very demanding parents. We need to do and ask for and get what is best for our kid(s), be it at school, daycare or whatever. The squeeky wheel, he said. Ironically so very different from how I have lived my life. I have always been a "Yes Maam, No Sir" kind of person, not really standing up for myself, not wanting to attract attention to myself. Interesting the lessons life sends our way. Guess I am not meant to be that timid person. (and believe me, since Annelies's birth it is much, much less).
It is kind of funny, because when we had Annelies's diagnosis, it was known that it was 'for life'. She will always have Ds, but she will be able to develop to her best potential simply because she has a lot of support and we are getting her the best of the best or therapy. With this Autism diagnosis, being that it is 'mild', it can be reversed, he can grow out of it, ot can go away (or whatever you want to call it). It is just so weird to have that stereotype blown out of the water. That a kid with Autism can be loving, and huggy, like Marco. That they can have joy and show it, but they need to learn to fully share it. He does look at us at times with a shy smile that is so heartbreakingly cute, maybe because it doesn't happen that often) as if we share a little secret. It is usually when he does something he enjoys, like the swing, or I give him something to eat that he really enjoys, or I praise him for something he just did, which shows me it is obvious he is happy to please others (another thing that did not jive with my preconceived notion of Autism). So here we are. We will be signing up for a "Walk for Autism" AS WELL AS a "Walk for Ds" this fall. LOL. In the meanwhile it is the next day, I began writing this yesterday but needed to share the dx with my oversees family before I put it in my blog. My fever is gone now, still feel weak but recovering.
The bottom line is that I love my kids. Marco is still the same Marco, I love him more every day. We will survive. Right now, the emotions are high, but we will get through (it will help when I feel better).

Thursday, August 27, 2009

Aug 28th, 2009: Doing Something For Yourself

This week, for the first time ever in my life, I got a PEDICURE! It was so cool! I never really did stuff like that for myself because, well, I really don't know why. Maybe did not really think I was worth it or something like that. And I thought I was too busy. But it is a good thing to take time out and let yourself be pampered. We are all busy, but we all have the same amount of time in the day. So it is what we do with our time that matters- how we choose to spend the time. And it is important to take a little time to pamper ourselves now and then! Now, I need to go take care of Marco, who is running a fever. (There is always SOMETHING...LOL)

Tuesday, August 25, 2009

August 25, 2009: Growing Up So Fast

Funny how I don't really notice my kids' growth until I take a picture. I kept the camera nearby all weekend and took some pictures of both kids. When I looked at Marco's pictures, I was amazed at how 'un-toddler-like' he looked in them, especially the one where is is wearing the red shirt (which has to be my favorite of his shirts- courtesy of our friends the D'Arcy family). He is just over 2 1/2 now, and becoming more independent. Still not speaking like most kids his age, but he understands everything. Just because he does not speak or answer me back, he can follow directions in both English and Dutch. I learned that I can expect quite a lot from him. He can carry his lunch box to and from the classroom, and his plates and cups to and from the kitchen and dining room, pick up papers and toys that end up on the floor when he is playing (my Mom gave us a rack with colored boxes to store the toys in, he can help pick up and put toys away in that). So that is kind of nice. I give him small tasks, and if it is too much to understand I break the task down (like: 1: pickup item. 2: Carry item down stairs. 3: Put item in laudry hamper.) So I have a little helper who is really proud of himself when I thank him for his help or praise him for listening to me. Very cool. He is also starting to interact more with his sister. She will sit up and smile at him, and he smiles back. It is really cute to watch. This was happening a lot on Sunday. Of course later in the day, she cried for some reason or other, not even hard or anything, but Marco walked right over and whacked her on the head. Where the heck did he learn that??? I reprimanded him sternly for that. She did not even care. He did not whack her hard, really does not have the capacity to yet, but it was kind of a shock to me. I guess it won't be the last time...I mean, they are close in age, there will probably be fights. I do hope that for the most part they will get along. Time will tell...

Thursday, August 20, 2009

Aug 19th: Annelies's First Class

Wednesday the 19th I took Annelies to her first “Wee Play” class. We were the first ones to arrive (I was very eager, even though I know it is only 5 minutes from my home I left myself 15 minutes to spare…). The class is held in a portable building that is occupied by the Placer County Office of Early Infant Education (or something like that). On the floor was a huge mat covered with squishy toys and Boppy pillows, very welcoming stuff for the around 1 year old crowd.
I met a Mom who had her daughter on the same day Annelies was born. (Until now I had only heard from our PT that there was a child out there who was born on the same day, so I was very excited to meet them.) This child is adorable and already sitting completely by herself (Annelies is almost there). It was nice to talk to this Mom, because until now I have shared very little in person with ‘fellow’ mothers of children with Ds. Very nice Mommy, also works full-time, so her mother will be attending with her Daughter. My Mom will also attend with Annelies on some occasions, so she won't be the only grand mom there. The famous Gracie and her Mom were there (I call her “The Famous Gracie” because she is the one I heard about when Annelies was born. She was born at the same hospital, about 2 1/2 months before Annelies. The nurses told me about how they adapted to the Ds Diagnosis (without getting too personal) and they gave me the family’s number but I never called (was not ready). Grace has the same PT as we do, so I received regular updates about her in the past 6 months. It took me this long to actually meet her Mom (I met her at the Convention). Kind of funny how these things go.
About a month ago I felt I was getting to the point where was feeling ready to meet others and share experiences and now I seem to be meeting them without much effort at all. Gracie’s Mom happened to be at the same workshop at the DS Convention (we had, like, 10 to choose from, about 100 people per room, and she sat down in front of me. I looked at hear badge and recognized part of her last name so I asked her if she was who I thought she was after the lecture). I had heard about the little girl born on the same day as my Daughter (odds of which are so small considering on average only about 15-20 children with Ds are born in the US daily) having 2 in one county on the same day is an interesting coincidence. They will be at the same High School, too. I really wanted to meet them and am glad I will now see them on a regular basis. There was also a little boy who just turned 1 yr old (lucky little dude with all the cute girls in his class!), and another little girl who was a little bit younger than Annelies I think.
The class begins with a circle activity that singles out each child for a few moments. Then we learn about an activity we can do with our child (in this case it was baby massage). After that a play activity, where we focused on getting the kiddo’s interested in a toy and having them rotate their trunk while reaching for it. At the end of the class there is another circle activity.
It is amazing and cool to see the different levels of development, and how quickly the kids develop and learn. At some point in the class I realized I did not see a group of kids with Ds or other disabilities, I saw a group of kids learning and having a good time. Annelies fit right in, she was all over the activities. She paid attention when she was addressed in the circle, and did not get overwhelmed once. I came away from this class exhilarated, and happier than I have felt in a long time. Between this class and the Convention a few weeks back, and the experiences I read about on the message board I really feel that there is no limit to what I can expect Annelies to do and learn, and that makes me so, so hopeful and happy!

Thursday, August 13, 2009

August 12, 2009: Annelies Goes To Class

Very cool: Placer County offers a weekly class that is called “Wee Play”. It is facilitated by our PT
, Esther. Initially I thought this was not an option for Annelies since I work and Aaron has an irregular schedule. But I began to think about a way around it, and figured it out. The class is from 9:00 to 10:15. I will work from home early in the morning for a couple of hours, get the kids up, and take Marco to daycare. Then Annelies and I will go to the class. My Mom will meet me after the class to take Annelies, and I will go to work.
There are about 6 kids in the class, about Annelies’ age (she will probably be the youngest there). It will be a great way to meet other parents and for Annelies to have some social time around other kids. I am so excited about thi
s, as I was driving yesterday I found myself planning what outfit Annelies will wear to her first class on Wednesday.

Aug 7-9, 2009: A Nice Weekend

A Few highlights:

1) I was off on Friday, this gave me time to be at Annelies’ PT session, hold 3 horses for the farrier, ride PG and Genie, and have a massage while Aaron picked up Marco from daycare.
2) Saturday I cleaned the house, rode PG, Genie and Diabolo, de-wormed the horses, picked up supplements for myself and the horses and had a short visit with Edgar, swam with Marco (he had his arm bands on for the first time and was able to float in the water, a whole new experience for him), played with Annelies, took a nap in the afternoon.
3) Sunday I rode PG and Diabolo, did grocery shopping, cleaned house, started the laundry, had a little time to myself in the evening after Marco went to bed, had a great night sleep (this has been hard lately, so it is worth a mention when I do get it).

Health-wise I feel a lot better now that I have been taking vitamin D and Iron (among other supplements. I have more energy. I am also talking more time to workout (I use the gym at work). I lost 20+ lbs so far, have a long way to go but feel a lot better.

Tuesday, August 11, 2009

August 1, 2009: Down Syndrome Convention in Sacramento

1) We saw a couple who are planning their wedding. This was a very hopeful experience. They had lunch in the deli we ate at on the first day, they were holding hands and having their lunch. It was neat to see a couple in love, that they have Ds was secondary.
2) There were too many workshops to choose from, so we decided to divide and conquer in some cases where I went to one and Aaron went to another. That way we learned about Special Needs Trusts, Cognitive Development and disciplining an child (this was useful for both kids), How to still take time & communicate as a couple (we did that one together), Brain development and different studies that are being held at UC Davis (because it is so close, Annelies will be part of the research).
3) I met a Mom who had her daughter Gracie 2 months before I did at the same hospital. She and I will be taking the girls back to the NICU to visit the nurses who were so helpful during our stay there. It will be nice to get together with her and talk over our experiences, and get the girls together for playdates.
4) Aaron met a nice Dad (I met him & his wife later on) from Rocklin, with a 17 month old son. We will be inviting this family over to our house for dinner and also sharing of experiences. This way we are now starting to build up a network of support.
5) We found that we have it so easy compared to many parents whose kids have multiple surgeries. It is not unheard of for a child with Ds to have upwards of 30 surgeries! We are grateful for Annelies’ health.
6) It was so nice to have a kid-less weekend! Aaron and I enjoyed Dinner and lunch out in Old Sac, at times we did not even know what to say to each other because we are not used to being alone together. He has been working a lot (trying to get as much as possible overtime to help pay off some bills.) We now know the importance of making an effort to spend some more time together sans kids. My Mom, on the other hand, was pretty beat after 2 days of running after Marco.

Sunday, July 26, 2009

July 26, 2009: New House & Kid Updates


I haven't written here since the beginning of June and here is it July already! The biggest change for our family is that we moved into our new house about a month ago. This went without a hitch partially thanks to the help of some of our friends! The new house is almost twice the size of the old house, so all our stuff fit in perfectly with room to spare. There are still boxes in the garage, but I am not thinking about them now. (If I can't see it, it doesn't exist, right?). The funny thing about moving (and I have moved OFTEN), is that when I move in about 2/3 rds of my stuff, I feel pretty much that I have everything I need and I wonder what I need the other 1/3rd for. (That is the stuff still sitting in the garage). At the same time, here we have this fabulous newish house, and I must say, our couch looks quite dated. But we are going to wait until both kids are out of the climbing phase until we get a new couch.

The other night, we hung pictures. That made me feel more at home.
Talking about the kids, they are doing well. Annelies is sitting, she has to hold on to something when she does, though, but she really wants to sit and stand. When I am on the floor with her, and help her sit up, she pops right up onto her feet. Our PT is OK with her doing that, she is actually quite impressed. I am no longer comparing Annelies's progress to what Marco did. I actually kind of forgot what Marco did at her age, and that is better because I will drive myself nuts.
Marco has a weekly speech therapy session, because he has a speech delay. This sounds incredibly serious, but if Marco was never in day care I would not have really been too bothered by it. The daycare urged us to get him some early intervention, and since we already deal with them for Annelies, it was easy to have Marco evaluated. The speech therapist is fabulous. This guy is obviously in his right calling. Have you ever noticed how delightful it is to see someone practice his or her profession when they are obviously in the right one? Well, this guy certainly is, and he has a wonderful report with Marco. I enjoy going there, because Marco makes such progress.
About a month ago, Aaron and I were asked to come to his daycare to talk with the 'powers that be' there and his current teacher. They were concerned because of Marco's speech delay, and the fact that when they asked him to stop doing something (like opening the door) he would hit. Now, he does not hit hard, he would just bring both arms up and then down out of frustration. So, we went to talk to them, and they urged us to get him a psych evaluation. They want to make sure 'nothing else is wrong with him' or something like that, and they seem to think that maybe Marco will get some kind of assitant who can come to the classroom and help them interact with Marco, give pointers and such. (In order to get that, though, you have to have a diagnosis on the Autism spectum, I was told). To satisfy them we called our EI person and she scheduled a psych eval for Marco. Personally, I am more of the school of letting kids develop at their own speed, as long as there is not something seriously wrong. But whatever, it seems like here (in the US), if your kid is not within certain lines of development, we need to do all kinds of things to 'help' them. His speech therapist felt that this is a bit over the top, because he is making good progress (he does not think Marco has Autism). But he said that doing the test would put my mind at ease (I have shared my concerns with him several times, and he has pointed out several times when Marco shows empathy and awareness of others and others' actions and how his actions affect others around him). Since we already have the appointment, and it is hard to get these types of appointments, we will go ahead with it so as not to irritate anyone.
So the other day I came to the school and pointed out that I had not received any additional notices about Marco being aggressive, and asked if it was less. The teacher said: "Yes, it is less, but he still does repetitive behaviors". Whatever that means. So I relayed that to Eric (speech guy) and he rolled his eyes and told me that Marco is 2 1/2, and it is absolutely NORMAL for him to do repetitive behaviors, because that is the way he learns (it is not like he bangs his head on the floor or the wall or anything, or sits in a corner for an hour straight and plays with the same thing over and over). Eric is going to talk to the school one of these days, he told me. (He is switching his schedule around so he will have Friday's free for education and meetings and stuff like he will be able to talk to them on a Friday.)
Next week is the Annual Down Syndrome Convention, happening in Sacramento. We are going on Saturday and Sunday, and it will be interesting. Aside from my Daughter, I have not met anyone with Ds yet, so I may get overwhelmed (I am afraid of getting overwhelmed). But maybe it will be OK.

Monday, June 8, 2009

June 2, 2009: Annelies is 6 months old!

The little girl had her 1/2 Birthday a week ago! She went to the Pediatrician for the 6 month well-baby check-up, who is very happy with how things are going. Annelies is at this time very tall, in the 90 percentile on 'typical' charts. I hope she keeps growing as much as possible. (Hidden behind this comment is the hope that Annelies will be as tall as she can possibly be...people with Down Syndrome tend not to get too maybe I sound vain here. Not sure how to express it, but I think every parent wants their kid to be 'normal' and even though she has DS, I still want 'as normal as possible'. I have no doubt that over time I will come to accept everything for what it is, that 'normal' for us will be not normal for others. It is what it is. I obviously love Annelies in her own right, so no one needs to worry about that...) . And despite all the rolls she has (cuddly), she is in the 50% for weight. Love me them rolls though, they are so freaking cute!
Anyway, Annelies is really strong which helps her with her PT (weekly appointment, and then we work with her, too). She really wants to sit up, especially when there are people around her having conversations. She wants to be part of things. So at her latest PT appointment, we worked on sitting in a box (it is kind of cool that just plain things you find around the house double not only as toys but also as therapy aides.) Some pictures below. Our cat Rusty is not so happy that we stole his box, though...
She is rolling over from back to stomach and lays on her side too (this is good because it brings her arms together in front of her body...). She makes all kinds of sounds, and laughs frequently. She is very charming, has a very outgoing personality and warms up to people and situations quickly. But she is also sceptical, when something new happens, you can kind of see her think it over. Like when a new excercise is introduced. The way she looks at you kind of quisically like: You sure about this? That makes me happy; I want her to question and test things and situations, not just go along with them 'cause someone says so.
Personally, I am doing OK. I went to a naturalist Doctor, because now that my child bearing time is over, I have to lose weight. A lot of it. This Doctor is very nice, and tested my blood for things I might be short of. I am iron and vitamin D deficient. So I am taking those along with other vitamins, and have radically changed my eating to a basically Vegan way of eating for the time being (I say for the time being here but I know that there is no way you can ever sustain weight loss by going back to an old way of eating. It is just that, after a certain amount of time I will be able to add back some other foods but the way I now eat will remain the baseline of how I will eat in the future.)
It works out for me as long as I plan ahead of time. I find myself bringing LOTS of food to work (due to all the layoffs on my floor, the refrigerator is practically empty, so I can store a couple of day's worth of food there) and eating often but light types of food (lots of spinach, whole grain stuff, fruit and beans). The Doc also sent me to the gym, which I started a little too zestfully because right now my right arm hurts like hell (I pulled a muscle). I did not sleep at all last night, and it was so paindful that I called in to work this am to stay home. I am taking 800 mg of Ibuprifin (presription) and that helps a little. Good god, I did not know a muscle could hurt this much. Childbirth was less painful (and it took a lot less time). Well, I will go back to work tomorrow because I don't want to miss too much (busy time right now, new system that will be implemented this fall. Finally; we have been working on it for > 4 years!). The drugs should help (Not that new sytem, but my arm pain. LOL.)
I will have to take it easier in the gym, will just do the cardio for a couple of days (probably not tomorrow, if my arm is still really sore it is so painful to get dressed!) OK, enough about my pesonal stuff :) This is a long post! Thanks for hanging in there with me. I am adding some pics of Annelies I just love, some in her chair and some in her box (Rusty's box).

Sunday, May 31, 2009

5/31/09 Just Pictures

Annelies 5 1/2 months old (May 2009)

Marco about 5 1/2 months old (July 2007- picture taken by Liselot)

I am a cheapskate; therefore my childern will be sharing outfits (not to mention toys and such) at times. This outfit is so cute, it was given to Marco 2 years ago by our friends Bryan and Shannan, they bought it at the Margaritaville store (yeah, I am sure it wasn't cheap). I loved it, and saved it for Annelies, and she fits it now too.
It is so cool to have 2 kids and experience several things twice. These pictures were taken right around the 6 month mark for each child, and at this time, Annelies is still keeping up with her big Brother where it comes to skills (we notice some delay, that is to be expected and not freaked out about).
Funny enough, on pictures you 'see' the DS more than when you look at Annelies in person. Even though I notice it less, and my Daughter more (does that make sense?). This is a good thing because as she grows it will become more obvious. I dread the time that will come where Annelies will be recognized for her DS and not for herself. I know it will bother me more than it will bother her. I also know that there will be the important people in our lives (and the occasional stranger) to whom it won't matter, who will see and treat her as a whole person.
I think the one thing my kids have in common are the fact that they have infectious smiles that light up their whole faces.

Sunday, May 17, 2009

May 9th: First Emergency Room Visit

Well, after being a Mom for over 2 years, I think I am lucky to have been spared ER visits so far, expecially because Marco is so boisterous. This streak ended last weekend. First off: Can anyone tell me why in the world fevers get the highest on Saturday or Sunday night, when even the Med 7 centers are not open, neccesitating a visit to the ER?
Annelies had a fever that began on Saturday and rapidly became worse. Somewhere in the late afternoon she stopped showing an interest in food, and by the evening the fever felt so high to me that I thought we really needed to go. Mothers intuition. Aaron even said that it would take another 24 hours for her to become dehydrated, but why wait? Once someone is dehydrated it is harder to hydrate, and they need an IV for sure. Besides, I did not know what amounts of OTC drugs would be OK for her and really wanted her to be looked at by a Doctor. She was also crying constantly, which shows me that she REALLY needed help since she rarely cries. So Mom and Leif came to stay with Marco (we popped "Slumdog Millionaire" in the DVD player for them) and off we went to the ER.
Luckily, we got there in time for the Saturday Night Rush. We were seen almost immediately. In the waiting room we saw a couple with a 4 day old (!!), they were really worried, and the Mom was still so post-partum- emotional, I felt horrible for them and hope their baby is OK!!
Annelies got her chest X rayed, and they gave us a diagnosis of beginning Pneumonia. She got an injection of Antibiotics and a prescription of the Antibiotic Du Jour, Zithromyecin (forgive the spelling if wrong). We were also insructed to keep her fever down by switching between Tylenol and Motrin, (one every 4 hours) which worked beautifully (I am glad to know this for the next time for either one of the kiddo's).
It is a week later now, and Annelies is doing a lot better. Her cough is getting better. She is such a little trooper.

Saturday, May 2, 2009

May 2, 2009: Solids and Snow

It has been a while since I added an entry to this blog. Not even sure if anyone reads it, but hey, maybe the kids will enjoy it when they are a little bit bigger.

Annelies was introduced to solid food a week ago. Esther, the EI lady who comes once a week to work with us, told us it is time. So, out came the rice cereal and teh tiniest spoon we have in the house. I mixed a tablespoon with some formula and sat down with Annelies in her 'eating chair', and it went really well! She made smacking sounds with her mouth and sucked on the spoon, it was an interesting new sensation for her and she obviously enjoyed it! I was relieved that she took to it so well. She smiled at me a couple of times during the meal.

Now that she has been eating rice cereal 2 times a day for a week, I added a tiny bnit of banana to it today, she seemed to like that also. I did decide to give her her solid mealk separately from a bottle though, that allows her to digest the solid for a bit before adding a bunch of formula and possibly making her throw up (like she did this morning).

Last weekend, we took Marco to see his first snow. It was a Sunday, we had nothing else to do, and we decided to take a drive up to Lake Tahoe before all the snow leaves for the summer. There was still some on the ground in patches. Marco enjoyed going from the dirt to the snow, the snow was crunchy under his feet and the dirt was like what he was used to. He fell in the snow a few times and realized it is very cold on his hands (it was a relatively warm day, so we did not have gloves for him because we did not spend a particularly long time in the snow.)

I am glad we went up there to introduce Marco to the snow, next year we will take a sleigh and let him ride it, he will enjoy that for sure!

Sunday, April 5, 2009

April 4th: Room #4

If I had to describe the moments and days following Marco's birth in one word, it would be "Idyllic". I fondly remember the first moments holding him, knowing he was 'OK' (during his pregnancy I was particularly worried about birth defects, or anything being wrong), feeling the pride of having given birth, and the elation of having done so 'successfully', and the gratefulness of the beautiful little guy we were given. I spent the first 31 hours of Marco's life in room #4 (my lucky number), where friends and family visited us to admire Marco for the first time. I am sure all of you who had a 'typical' birth experience felt exactly the same way.
So when I had Annelies, it was a little different. That first 24 hours, I would not want to re-live, yet I would not want to erase it from my memory and experiences because it is such an important part of what and who we have become. I was kept in the hospital for 48 hours, because Annelies was in the NICU. Maybe it is standard to keep a Mom who gives birth to a 'non-typical' child, especially when it is a 'surprise', a little longer if possible (I have fantastic insurance) because they might have wanted to keep an eye on me. I am not sure, I do know that given the easy birth (I described it before so won't go into detail) I could have walked out of the hospital that day, and probably would have if Annelies was OK. Once I was discharged from the hospital and Annelies was still in the NICU, I went there about 4 times a day to spend time with her. To get to her room, I had to walk past room number 4. The first time I realized where I was, and I saw that room, I went inside. It was empty. I cried and cried for the grief and sense of loss and scaredness I felt. I don't think I ever cried that hard. The floor was pretty empty, so on one saw me thank god. I think I felt I lost my innocence in a way. It was so hard to believe that the woman I was that day was the same one who had recovered in that room after having had Marco just shy of 2 years ago. It is hard to describe. That first 2 days, I had to choke back tears every time I passed that room. (Of course I was also extra emotional because of a lack of sleep.) I kept thinking, feeling, that I had lost something. But then, this dawned on me: My memories of room #4 with Marco are still mine. They are happy memories that I am grateful to have, and be able to have forever. No one, and no event can take them away from me as long as I am mentally fit and able to remember them. I have all the right to feel them, and to enjoy them, and will do so for the rest of my life. I began to get back that happy feeling walking past room #4, and by the end of Annelies' first week of life, I was even more grateful for the Marco memory because I had that wonderful experience.
Now, 4 months later, I am grateful for the experience with Annelies also. Her existence in our lives is nothing short of a miracle, I would never change that. Yes, I still have some difficulties sometimes. Any big life event like that takes away your innocence/naivete in a way. I sometimes go back to moments or events that happened before I had Annelies, and think "Wow, that happened Before I Knew. Especially at work, now that I am back, there are some things I have to work on that I was working on Before. But it does not have to take away from memories that came before it. I am so glad I realized that.

Wednesday, April 1, 2009

March 30, 2009: Marco and Rusty and the Water

Marco really likes water. He would probably eat his dinner in bath if we let him. He can hang over the sink for an hour and play with the water coming out of the faucet if we let him. When I do let him play, Rusty the cat is there immediately because, even though he gets fresh water, there seems to be nothing quite like being able to drink it from the faucet when it is running. It must be a cat thing...

Last weekend I took some pictures of them in our hallway bathroom in the mirror. I think they came out cute!

Sunday, March 29, 2009

March 25th, 2008: Milestones

Annelies had her 4 month well-baby checkup today. I always anticipate these checkups because I am excited to find out her weight and height, to see how she is growing. I did this with Marco also. Since Annelies has been a lot more interactive (smiling, making faces back at us, following us around the room with her eyes and head- especially Marco-), I felt pretty good about her progress. Our Doctor is always glad to see us, she has a warm spot for Annelies. That is a good feeling also. Annelies was not so thrilled about being undressed to get on the scale. Just like most women, I guess. Who wants to get on the scale? She had just eaten, so her weight was a bit inflated but the scale kept flipping between 13 lbs and 12. 15 1/5, so we settled on the 12 lb, 15.5 oz (since she had just finished drinking about 4 oz). Her length is 24 1/2 inches. That puts her at 50% for her weight and 75% for her lenght on the regular charts! This is great news, we are thrilled she is growing so well. She is getting ready for some solid foods soon (some applesauce and sweet potato like we did for Marco).

Annelies is developing really well. The PT comes every week, and is thrilled with her progress. She has almost complete neck control, and wants to roll over but is not there yet. So physically she is starting to show some delays, but is still within normal range. I am beginning to learn what's normal for her, and will be comparing her to herself rather than to other children, or god forbid, milestones in books. I did that with Marco and drove myself insane. I am learning that it is so important to enjoy the moments with her (and with Marco, who is taking his sweet time learning to speak, and that is OK). I guess sometimes in this society we want to compare and we want to come out ahead or even, not 'behind'. Well, it is all about perception, isn't it? Annelies will not be behind where it comes to being loved and nurtured, and trying her best to be who she can be. I think that is what counts.

The PT gives us gets excercices to do with Annelies, which tires her out quite a bit (Aaron is really good about doing them with her, so is my Mom. I do them mostly while we are playing, especially during the week since I am not around as much). She lifts her legs up all the time when she lays on her back (see enclosed pic). She is also starting to hold onto her bottle herself. The PT loves this. Most of it sounds like regular baby stuff, and it is, which is SO COOL. She has incredible try in her, she loves to lay on my stomach and lift up her head and smile (she has been smiling a lot, too). She makes all kinds of sounds now. The other really cool thing is that the Doctor is sure that Annelies will (be able to) speak normally. Her palate is shaped normally, and her tongue also. I am sure we will get speech tharapy, but I am very positive about her future.

Sunday, March 22, 2009

March 22: Playing Together...Sort Of ;)

Today was the first time Marco and Annelies really kind of interracted. It was cute and surprising to see. Annelies was in her gym thingy (where she has things above her head that she can grab), and Marco was sitting near her head with his piano toy (a somewhat irritating toy that has 5 buttons that play popular tunes, and piano keys -Do to Do, 8 keys- he could actually play a song on if I tought it to him. I am teaching myself so I can teach him). Anyway, Marco hits the popular tunes and then the other keys randomly (we put tape over the speaker so it is not nearly as loud as it used to be). The thing was right near Annelies' head, and she was looking up to Marco (she tracks him always, which is really cool). So she started making noises, just regular baby noises, trying out her vocal cords. Then Marco would imitate her and laugh his little but off. It was so cute. It is neat to see Marco starting to kind of 'play' with her, for as much as that is possible at her age anyway. I took the attached pic on my cell phone to send to Aaron.

Saturday, March 21, 2009

March 17th, Back to Work

Back to Work

This week, I went back to work after 4 ½ months of Maternity Leave. This return back was conflicted: I was not thrilled to lose my freedom and go back to the daily grind. What makes it worse is that 60% (!) of my Department has been laid-off or will be by April 17. So, I feel guilty for not really feeling like going back because I should be happy I have a job. Which I am, for as long as it lasts. But I have worked hard and long to establish myself in this job (many of the positions leaving to India are operations type positions) and I am in a project-oriented position, so I am a little safer although no one is safe at this moment. Anyway, this in combination of facing people who now may or may not know about Annelies and who may or may not know how to approach me, or might feel awkward- a feeling I can pick up on immediately- made me a little leary. So far, things have been fine. It has been so nice to see people whom I have not seen for a while. I am still not used to the empty cubicles, especially of those I had a connection with.
An interesting thing happened: I went to the cafeteria and saw a girl who works there who had her daughter right around the time I had Marco (2 years ago). When she and I chatted about our babies when we both came back from maternity leave back then, she had shared that there were some medical concerns for her daughter, including a heart issue for which she needed surgery. So, I ran into her one morning this week and she asked how I was doing and how the new baby is. I told her Annelies was well, healthy, and then told her that she has Down syndrome. This was interesting; I made a split second decision to share this with her, based on a gut feeling that told me it was OK to do so. (Funny how I can pretty quickly seize up a person and just know what/how much to tell them to diminish the impact somehow. )
She told me her daughter has Trisomy8. This means her daughter has 3 of the 8th chromosome replicated to a number (not all) of the cells in her body. So we chatted a little bit until she had to go make a coffee for someone else. [Anyone living with T8 has a mosaic situation (the 3 8th chromosomes are in a group of cells on the body, not all cells. This allows for a large difference in issues someone with this condition has from not visible or not even diagnosed to very serious issues similar to serious health issues found in some who have Ds health and mental-wise.) It is nice to talk to someone who instantly understands, and I could tell the feeling was mutual for her. I want to talk to her more. I also had a nice talk with a colleague who has an older Brother with Ds. Support is everywhere, even in the workplace!
It is also interesting to find things in common with those who have become parents thru adoption. I know 2 women who have done so, and 2 men who are about to. A lot of the feelings they have described to me (not knowing fully what to expect for their child as they do not know the parents, that history. Or the difference because their child does not look like them.) It is funny how our kids, no matter where they come from or how they are created, bring us together in ways we never dreamed but would never change.

Wednesday, March 11, 2009

March 11: Panera

Aaron and I went to lunch today, while it is still possible for me to be out on a weekday during the day. I go back to work next week. We went to Panera because Aaron has not been there before. I was introduced to Panera during one of my trips to STP, Florida. The hotel I usually stay in has a Panera right in the parking lot. While the hotel offers a decent breakfast buffet every morning, the coffee leaves a lot to be desired, so I trek across the parking lot to Panera for 'real' coffee. I realized at some point that Panera offers a nice menu so decided to take Aaron there. We ordered and found a table. It was lunch time, so the place was packed. The table next to us had 3 women at it, 2 with babies and one about to have a baby. The first thought that ran through my head was: Good for them, they have 'normal' babies. This was not a malicious thought, it was just an involuntary thought. Immediatly I looked at the car seat at my feet from which my Daughter was grinning up at me. As if she was saying: It's Okay. It is all good....It will all be all right. I felt like a bad mom. Guilty. I shared my feelings with Aaron. He listens to me, that is a comfort. He somewhat understands, but does not get himself hung up on thoughts the way I do.
Part of my overreaction at that particular point was due to yet another whole group being eliminated from my department at work. All their jobs are going to India. It is irritating to me, I do not see how this helps our economy. I have no doubt that this was the plan all along anyway, but now with the economy as an excuse, there is reason to do it quicker. I feel bad for those to whom this is a blindside, and for whom that job was the only one in the household. I wish all these people well. I will miss many of them (after almost 9 years of seeing these faces, interacting and working with these people, it is really hard to see most of them go). So I am in a bit of a cynical mood these days anyway.
I understand now that I am still in a bit of a mourning/grieving stage that I have mostly suppressed by keeping busy. Solving problems, getting things arranged and done. I was told at one point that it is good to be practical, but it is important to give myself time for grief when I need it. And not to get too impatient with myself. I guess today, I had a moment like that. Life is interesting. There is much to learn about it and ourselves, and we do this via others. At 3 months old, Annelies is a pretty good teacher. I think she understands more than most will ever realize.

Tuesday, March 3, 2009

March 2: Annelies is 3 Months Old!

Annelies is 3 months old today. 1/4 of a year. It feels like yesterday- the day she was born. It also feels like I have lived a lifetime. So many emotions and changes, so many adjustments and so many things that turned out so much better, so much more hopeful, than I dared hope on the day she was born. Yes, I still have difficult moments. But I have so much hope and also -recently- confidence for her future. I remember thinking that first day (among so many other morbid, sarcastic thoughts that raced through my head) "Well, we won't have to save for College for this one..." Yet, on our last visit to the Pediatrician she told me about one of her patients, 20 years old who has ds, who goes to College. Guess it is time to open that 529! (For once, procrastination paid off for Marco, since I still have not yet opened his 529. With the Dow below 7K, it is a good time to get into the market!)

Sunday, March 1, 2009

Feb 15th: Airport

I like going to the airport. The best occasion for an airport visit is when I go on vacation somewhere, the second best is when I get to go pick up someone. Since we started having kids, the only times I have been to the airport has been to either go on business trips to St Pete, Florida or to pick up family members arriving from NL. (Since this thought went through my head the other day I realized it is time for Aaron and I to go on a trip together, we are planning to do so this fall. More on that in another post).
What I love is that at the airport you see people who were possibly on the other side of the world just 12 hours ago. You see airplanes at the hangar next to one another, one bound for Asia and the one next to it for Europe. People are generally going or coming back from an exciting vacation, or they are visiting California for the first time. There are also those who are in the US for the very first time, to live here. I kind of know how they feel...
Feb 15th finds me at SFO waiting for my Dad and Kathleen. My Dad has been in the US 3 times in the past 2 years. A lot for him! He was here in September with Rogier, and now to meet Annelies, his second grandchild. We take the same flight to 'commute' between Amsterdam to SFO. KL 605/KL 606. Too excited to sleep the night before, I checked to make sure the flight had taken off and was expected to arrive on time. I leave the house at 11, to be at SFO and have the car parked around 1:15. The International Terminal was remodeled a few years back. As I walk from the garage to the terminal I think back over the past 20 years, and how many times I have been to that airport. Too many to count. That is part of being an immigrant, I guess (well, not all people who move here go back as often as I do, probably, or have friends/family come out so often.)
Standing at Gate A (there is A and G, not fully sure what the logic is behind those letter choices, but I am sure there is one...) I look up to see the monitor. Cool new addition- they have monitors that allow you to see the passengers before they even get to the gate. The flight status monitor indicats that the passengers are in customs. Having just had a child, my emotions are a little bit out of whack, and standing next to people reuniting with friends and family members they have not seen for a while, or never seen in cases where grandparents get to meet their small grandchildren for the first time, makes me tear up a little. From happiness of course. The first sign that the reunion is getting closer is the KLM crew. They wear such recognizable outfits. I almost want to thank the pilot for bringing me my family safely (hey, this sounds corny but there have been 2 airplane crashes and that one landing in the Hudson in the past few weeks...). Then come the yellow bags. When you buy something at Schiphol, you get a yellow bag for your purchases. That bag says on it "See, Buy, Fly". It has been that way from the beginning (the 80's). When I start seeing passengers with those bags, I know it is any moment before they are here. My nervousness kind of peaks a little. Will we be OK right away, will there be awkwardnesses? Especially now, with Annelies in our picture. This does not last very long because when they arrive, it is like we just saw each other. It seems to me that when any of my family arrive, we are able to pick up the thread where we left off during our last conversation. I think that is a skill we all learned from living on opposite sides of the world (OK, NL is about 1/3rd across if you want to get technical). The 2 weeks they spend with us go by so fast, as usual. But they give us an opportunity to talk, understand each other even a little better, catch up, and create more lasting memories until the next time one or a couple of us travel across the pond (If you want to get technical again, when you fly to NL you travel across Canada, Greenland, the Greenland Sea,Iceland, the UK and the North Sea.) :)

Saturday, February 7, 2009

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.

Wednesday, January 28, 2009

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 :)

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.