July 26, 2009: New House & Kid Updates

Finally...

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 that...so 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.

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 tall...so 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).

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.

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.

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!

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.

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!