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[Jun. 20th, 2009|05:59 pm] |
My son learned how to walk today. It's been coming (see previous post), but today we were in a grassy field walking holding one hand, and I somehow realized he wasn't interested in holding on anymore (I assume he cued me). So I stood in front of him, and he repeatedly got up, walked, fell, giggled (the giggling while falling, Shannon points out, is especially critical), then did it again. This afternoon we spent 10 minutes walking around the park (grainy videos to follow). It's extraordinary.
I assume every parent feels this kind of pride at such accomplishments. I do wonder, though, whether the "work" both we and Nico (and his therapists) put into the process heightens the emotional power of the moment when it comes together. It was Christmas when Nico first stood up unsupported. It was sometime in the preceding spring when he started cruising. It was the December before that when he started scooting on his tummy (I still have the first video Shannon sent me on her phone, documenting the occasion). That's a long process, marked by daily and weekly sessions trying to help him build strength, balance, and courage. And now ... he stands up and walks, falls, hops up again, and grins and giggles.
Videos after the cut.
( Read more... )
A joyful day. |
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| (no subject) |
[Jun. 17th, 2009|10:25 pm] |
New one-hand holding method. It's another step, no pun intended.
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| (no subject) |
[Jun. 9th, 2009|08:19 pm] |
The last 12 days have flown by, but we're almost at the two-week mark in Elisabeth's young life. My parents left today, leaving us without immediate backup, but we're finally ready. We had a very good night last night in which, post-10:30, all feedings were done in bed without full consciousness. Nico is adapting, though still somewhat stressed (and needy of his mother), but is also doing wonderfully in speech, sign, and especially walking.
So life proceeds in its new wonderful form. Ellie (the new preferred shortform) is so far proving to be healthy and sweet, crying only when in need or discomfort. There are natural comparisons to be made for us between Nico and Ellie, and the differences are extraordinary. We heard Ellie cry seconds after she was born and held her and nursed her 15 minutes later. We took her home 36 hours after that. She passed her hearing test easily. There are no tubes, extra dr. visits, extra tests, etc, so far. Normalcy is very odd, but pleasant. |
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| (no subject) |
[Jun. 6th, 2009|01:57 pm] |
Nico wandered out of his room post-bath and discovered the baby, followed by a rousing game of "Who's a moose!"
( Read more... )
More pictures here. |
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| (no subject) |
[Jun. 5th, 2009|08:27 pm] |
We are tired but all is very well. It's been quite a week!
More later ... like perhaps in 18 years when I get a good night's sleep. |
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| Visiting in the hospital and homecomings. |
[May. 31st, 2009|08:12 am] |
Nico, grandma, and grandpa came to visit Lizzie (the current preferred nickname, along with my personal favorite, schmoopy) Friday in the afternoon, then we brought her home yesterday morning around mid-day. Nico is handling it well, though exhibits some signs of stress when too close to the baby. The hospital visit was fine - he snuggled with his mom for a few minutes, looked at the baby, then played with the tissue paper that came with Lizzie's godmother's gifts. Good times.
Coming home seemed more stressful, though partly it was right at mid-day and naptime for the boy. So he slept, long and hard (longer than usual). When he woke, he was a bit reluctant to leave his crib, and spent a full half an hour just laying snuggled on me on the couch, looking at mama and the new baby. I think it was a vital processing period. We're trying to alternate time around the baby and time spent with various parents in isolation.
Our first night home was fine for me, in that I can't feed Lizzie yet, so I rocked her when fussy but had to give her to mama when she was hungry. I'll get up with Nico each morning, though, and hope mama and the babe can snooze.
Pictures follow the cut. More new ones here.
( Read more... ) |
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| Elisabeth Vivianne Perry |
[May. 28th, 2009|07:41 pm] |
Born 5:14
6 lbs, 15 oz.
Fuzzy head.
I promise to post real pictures later. For now ...
She's currently nursing merrily along. |
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| (no subject) |
[May. 28th, 2009|04:29 pm] |
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We are having a baby in the next few hours, or so they tell me. Wheee! |
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| Dirt! |
[May. 3rd, 2009|09:21 pm] |
More 'recent' photos here including Spring Break in Champaign (swimming, riding the scooter, playing piano with his cousin) and painting. |
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| Updates |
[Apr. 15th, 2009|07:25 pm] |
Friends,
By request, we have a baby registry.
The pregnancy is proving very difficult on Shannon and hence, though less acutely, on both Nico and me. I am still very busy until mid-May, although the last week of April grants a brief reprieve with exam week (I'll just do the grading during naptime and at night). I'll let her speak about her own issues if she wants to, but there does not seem to be any imminent danger to either child or mother. It's just very difficult.
Daily, I wish we were back home in Minnesota where we would have had a support system. That's probably the toughest part.
Nico is doing well, although he's showing new behaviors that make certain things more complicated (continued difficulties expanding his diet, lots of shyness/crying around strangers, etc.). But he's very sweet and working hard on figuring this walking and communicating thing out. I had thought we'd surely have him walking by June when the baby comes, but now I am less sure. He's on his own schedule and hasn't seen fit to give us a copy!
And now ... grading. |
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| (no subject) |
[Apr. 1st, 2009|07:02 pm] |
The eating therapist/nutritionist says -
- He is getting enough calories/calcium/vitamins.
- She does not think there is any physiological/medical problem. It's typical 2-year-old stuff.
- "Food chaining" is the way to introduce more food. You take foods he likes and match them with new foods that are similar. I.e. Penne (which he eats) with other kinds of noodles. Or "veggie booty" with non-toxic other puffed foods (not cheetoes). Etc. In the meantime, we can just keep feeding him whatever it is he's eating (breakfast stuff, yoghurt, some cottage cheese, some fruits, some snacks, plain penne noodles) so long as we "chain."
- Food strategies based on denial/discipline are ill-conceived and likely to have backlashes even if they work. You cannot control eating, sleeping, bowl movements. Don't try. You can, though, influence the decisions they make. This is true for all children.
- Most of all - eat with him at least 2 meals a day. Take whatever we are eating and put some of it on his plate/tray. Make food social as he's ready for social; in fact, social is more interesting than just about anything else.
- In the end, there are children with Down's who decide on what they will eat, and then they eat only that, potentially forever. If that happens, we'll have to cope most likely. No reason to think that's happening now, though. He's just "food jagging" and exercising power/control in the limited arenas in which he can.
- This is all reassuring and calming. We've actually been calm since we gave up and just started feeding him from his current menu. It was just the what happened next that was stressful. Also, in non-food-play, we are to be more assertive in how we deal with his stubbornness. Don't let the fussing, whining, even mild resisting end the play (and lead to "quiet" time) until he really gets obstreperous.
P.S. 4 days in a row successful use of potty post-dinner. It's very encouraging as you can see the comprehension in his eyes. |
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| On the brighter side! |
[Mar. 24th, 2009|05:23 pm] |
And just when I was feeling really burned out and exhausted, I decided to take Nico out on his scooter and we'd go-go-go for awhile. We went a half a mile (according to google maps), from my house down to the train tracks, with Nico going-going-going all the way. He's a sprinter and suddenly runs out of gas, and then I carry him for awhile, possibly all the way. But for whatever reason, I decided to see if he'd walk with me holding his hands and pushing the toy ahead of us.
Step-step-step PUSH. Step-step-step PUSH. Good times.
But THEN I got him to hold onto the back of the scooter and walk without me touching him! We've been trying to get him interested in push toys since August, with no success. But today ... we took a few steps. Then I carried him for awhile, before spending quite a few minutes walking around pushing his scooter, laughing all the way (ho ho ho).
I have 6 second of crappy video as he wasn't really stable and it worked better when I stablized the scooter so he didn't push too fast and forget his feet.
When we got back and I sat him down and faced him with green beans and pasta, he started to cry. I added a small segment of graham cracker and a little "veggie booty" (puffed corn/spinach). He hate those then put the noodle and beans in a little bowl to "clean up." And that's dinner. I am resisting giving him yoghurt or fruit, although he's going to be pretty cranky as a result.
So no solutions, but closer to walking. This three months of deteriorating food norms could easily be a "touch point" in which other things break down as he works on walking. Which would be an explanation but not a system for dealing with it. |
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| (no subject) |
[Mar. 24th, 2009|02:18 pm] |
The food issues with Nico have hit a crisis point. It's very upsetting and we're seeking professional help.
This is the first time I've felt completely helpless in regards to Nico in a long time. |
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| (no subject) |
[Mar. 17th, 2009|07:49 pm] |
Fun and merriment
( Read more... )
The latter is the new "scoot-about" we just got and assembled today. |
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| Walking and talking |
[Mar. 13th, 2009|03:30 pm] |
I posted this list of the signs that Nico knows and uses reasonably regularly. He's certainly aware of more signs and has a receptive vocabulary of hundreds more words, as one would expect. We really have pretty good communication now, all things considered.
What I really like is that the communication is getting more complex. "Pick that up and put it in the bath-tub," for example. "Come over here and have a drink." "Give mommy a kiss." All of these types of phrases have two components, and Nico consistently does the two of them right. We're beginning to see doubling up of signs, too. For example (20 minutes ago), "more potty" and then "all-done potty" (and then "dirty").
Since the first steps, he's been very stubborn about being on his feet, but the weather is pretty good today, so once he's done with his snack, we'll be out riding on the scooter. He fell off the other day (throwing a bit of a fit about changing directions) and skinned his chin, which was scary. We need a crash helmet and a scooter for a bigger boy, so have placed an order for the Radio Flyer scootabout, which looks good. |
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| (no subject) |
[Mar. 10th, 2009|05:45 pm] |
My son just took 4 steps sideways to get from the kiddy-potty to the toilet. He then took 5 steps forward from the toilet to the bath-tub.
Unaided.
I got a little teary as I hugged him and told him to do it again. Which he did. |
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