Dream Shard Blog: The Scintillating Adventures of Our Household

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Sat
28
Aug '10

Wesley

Wesley is nearly three. This means that he’ll be exiting the therapy service program he’s been part of since birth (which covers ages 0-3) and entering the programs available through the school district. This also means he starts preschool (!!) in about two weeks. He’ll attend a class with a mix of special needs and “normal” kids. This school is close to our home, and Wes will get to ride a bus that picks up the special needs kids. I’ve heard from other parents and the therapists that kids LOVE riding the bus because they sing songs and keep the kids entertained during the ride. Nonetheless, I still can’t picture sending Wes off on a school bus.

Because Wes is leaving his current therapy program they’ve been doing exit testing (which is really his annual testing). The other day his speech therapist came and did this. Last year she graded him as a “less than 2 year old” because he was 23 months, and he scored in the 18th percentile. This time she graded him as a 3-year-old and he scored in the 1st percentile. I agree with her when she said the test score isn’t a good indicator of how Wes is doing. The test was largely comprised of the therapist asking Wes to point to specific pictures on a page (“Where’s the dog?” “Where’s the dog’s nose?”). Pointing and identifying things is not his forte. There were several pictures on the page, and Wes would point at each one in turn and either make the sign or say the word for each thing, but when he was asked to specifically point to something, he wouldn’t/couldn’t. The therapist said that she just did the same test with another little boy with Down syndrome and he had the same problem. She said that she hadn’t thought about it before, but maybe this skill is one of those things that’s just hard for kids with DS.

I am constantly amazed at how much Wes knows and how smart he is. His pronunciation of words and sounds is continually improving. When he says “more” his “r” sound is becoming more pronounced. He’s started to say the “k” sound. He will try to repeat words that we say.

He is also an obedient little boy. One of his favorite pastimes is pushing toys from his bedroom down the stairs. Sometimes we’ll hear him dragging toys down the hall towards the stairs and we’ll call up and tell him to stop and take the toy back to his room. And he turns right around and drags the toy back into his room. No problem. He wants to be a good boy and is so willing to listen and obey (most of the time).

One area that he’s doing great at is gross motor skills. Wes is a mover and a shaker. A few weeks ago his physical therapist asked me to see if Wes could jump forward, from point A to point B, and if he could to measure how many inches he jumped. She said 12 inches or more was very good. I didn’t know if he could even jump forward. But it turns out that he can easily clear 12 inches. Which really shouldn’t have surprised me, considering Wes loves jumping off our sofas, beds, and down the stairs (I keep telling him “no jumping on the stairs”).

Here he is dancing.

And helping Grandpa Holt in the kitchen.

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Carissa

Today Carissa is thirteen days old. If she were Wesley, yesterday would have been the day we were allowed to bring her home from the hospital.

Our birth experience this time was vastly different from Wesley’s. Both labors were about the same length (eight hours), and I delivered both babies without pain medication like I planned.

My labor with Wesley wasn’t too bad, but I had a hard recovery. This was because I had high blood pressure during labor, and to prevent seizures I was given an IV with magnesium sulfate. “Mag” (as the nurses call it) is rough stuff. It’s a smooth muscle relaxer that has lousy side effects. I was bleeding too heavily, my uterus wasn’t contracting, my speech slurred, I couldn’t sit up in bed without passing out… I was basically totally out of it. When they handed Wes to me after he was born I was too exhausted to hold him or even care much. A few hours later, John and I were dealing with the surprise news that Wes has Down syndrome. It’s not a big deal now, three years later, but at the time we were devastated. With all this together, I remember lying flat on my back in bed and wondering if I was going to get through it. You’re supposed to be on the mag for 24 hours following delivery, but because I was handling it so poorly my OB took me off it after just 12. And once I was off it, what a change! Things got better from there. I could start to enjoy being a new mom.

With Carissa, it was a little bit the opposite. The labor was the hardest physical work I’ve even done (and hope to ever do), but once she was out things were OK. I didn’t have high blood pressure with her, which was a relief. With both babies my back hurt during labor; the difference was that with Wesley, it was manageable, but the back labor with Carissa was indescribably painful. It overwhelmed everything. I had prepared for labor and delivery with breathing techniques that helped me through Wesley’s birth. Breathing and relaxing takes a giant bite out of the discomfort of uterine contractions. But it does nothing for back pain.

I often wondered during those eight hours how I was going to get through it. I was so tired, and tired of the pain. The nurses reminded me to stay in the moment, focus on each contraction, and then relax, and don’t worry about what’s coming next. (Which is good advice.) I often thought how much easier it would be with some pain medication. But I knew what I wanted deep down, so I pressed through it. I was so grateful John was there. And I quickly saw that switching from an OB to the midwives (which I had done around 33 weeks) was a brilliant decision. My midwife stayed with me for nearly all my labor. AND she helped with pain management by pressing on my hips and legs during contractions to help quell the back pain. She showed John how to do this, but (and though I love him) John didn’t have the same knack for it as she did. But John was indispensable; he kept telling me what a good job I was doing, and even though I didn’t believe him, it kept me going.

After a while it became clear that the baby’s head was presenting at a weird angle. It was drawing out the labor and probably also causing that ridiculous back pain. Again, I was grateful for the midwife and supportive nurses who instead of offering intervention like forceps or a vacuum suggested different positions to help with things. They did suggest breaking my water but left it completely up to me whether I chose to or not. We discussed the pros and cons and in the end I decided to do it, and I don’t regret it.

At what felt like long, long last I was ready for pushing. I have heard (and seen videos) of women giving birth where the baby just kind of falls out without them having to push or bear down, and maybe someday that will be my privilege, but so far that hasn’t been the case. I think that pushing is about the hardest part of baby delivery. You are so ready to be done. It is such hard effort to push and make your pushes effective.

But at the same time, it is the best part. This time, perhaps because I wasn’t doped out on magnesium sulfate, I could fully appreciate my baby being born. John would tell me what a good job I was doing, and that I was almost there, almost done, that he could see the top of the head, and just a little bit more.

The very best part of the whole day was the moment the baby slipped all the way out and the midwife placed her on my tummy. All the pain, all the struggle, was gone. In their place was total relief. And awe. To finally see the little person that had been growing inside my belly for the last 40 weeks… Sometimes I didn’t think there really was a baby in there, yet here she was. I was amazed by how calm she was, lying on my tummy. Her eyes were open and she was alert but relaxed, as if being born and taking her first breaths of air was no big deal. She was the most beautiful thing I’d ever seen.

The hardest part was over. The better part was beginning. Without the mag or any other drugs in my system I was alert and able to watch the nurses bathe and measure her. I got to pick out the little bow for her hair. Sometime during my labor dinner had been brought in, and now I got to eat. Talk about a welcome meal. Two hours after she was born I was able to stand and walk.

My mom and dad happened to arrive in town an hour or two before Carissa was born, and my mom came by to visit. We moved to my recovery room, and 24 hours later, we checked out of the hospital.

Wes was born with a long list of medical risks, and he came home from the hospital with an oxygen tank and sleep apnea monitor. The only thing we had to watch with Carissa was her bilyrubin numbers (for jaundice). I took her to the hospital three times to be tested, but eventually the numbers came down on their own without needing light therapy.

Carissa is doing well, and so are we.

Tue
15
Jun '10

Who Wants M&Ms?

Just come to our kitchen. Floor. And help yourself. Wesley did.

Sun
13
Jun '10

Our Home in Ruins and Other Things

Welcome to our home.


Wes likes Chapstick. Namely, to eat it. He gets that it has something to do with the lips, but whenever I get Chapstick back from him it’s usually half empty with teeth marks.

Wes and I have been touring homes in the county Parade of Homes. There was this one house with a nifty built-in playroom decorated like a French cafe with a real working lantern. Wes liked the door that was just his size and, even better, the light switch that he didn’t have to stretch to reach.

Fri
11
Jun '10

Generic Updates

PICNIC

A couple weeks ago Wes and I spent the morning at my sister’s house and we had a gourmet picnic lunch in the backyard.

My sister made us PB&J (and a special microwave toasted cheese sandwich for Wes) with diced peaches and string cheese. The wet marks on Wesley’s shorts are from the peaches he was eating.

Wes likes to get a reaction from animals by waving things in front of them. He does this a lot with our cats at home. It makes him giggle. Here he is trying to get a rise out of Casper the Horse, but I think Casper assumes Wes is giving him a snack.

We had a fun picnic, and afterward Wes fell asleep in the car about two minutes after he was buckled in.

CARPET and TILE SHOPPING

We’ve been shopping around for carpet and tile for our basement. Wes is a big help (NOT), so sometimes the majority of my time browsing is actually spent keeping Wes out of trouble. At one store they had a room full of sample books that kept him happy.

And a toy car he was semi-interested in.

We haven’t decided on carpet yet, but we picked out some great Italian porcelain tile that’s on closeout and a terrific deal. We also think we’ve found some slate for the kitchen and fireplace. On Monday the tiling starts!

CANDY CANDY CANDY

Wes doesn’t like a lot of candy, but he likes M&M’s. It’s the only candy he’ll ask for. The other day he saw the bag of M&M’s out and asked for some by making a sound and trying to sign something. I realized I didn’t know the sign for “candy,” so I looked it up and taught it to him. Here he is showing off his new skill. And yes, now he asks for candy ALL the time–breakfast, lunch, and dinner, and in between.

Sun
30
May '10

Wes

Here are a couple videos of Wes. In this one he is trying to tell me he wants something, but I have no idea what it is. He uses signs and sounds to communicate–some are really clear and understandable (“No!”), but others I have to guess at. In this video he says the words “more” and “no” pretty clearly. He also makes signs for “more,” “open,” and “on.” (The plastic on the floor is due to our basement remodeling.)

Here we’re singing a song. I mean, I’m singing and Wes is listening but doing the finger actions along with me. He loves loves loves music and singing. In this video he makes the sign for “song” (or “music”) and does the finger actions of “turtle,” “swim,” “eat,” and “bubble.”