Saturday, February 23, 2008
The topic today was communication, like how does your child communicate with you. (Here's Braska's version of the day, complete with video and pictures.We started with our Hello Song, then they explained that there would be toys around the room to play with, most of which the child would need help with. There were containers that needed opened and such things, so they were looking for what ways the kids used to communicate that they wanted a toy, that they needed help with it, or that they did not want it any longer. Mary-Kelsey, our student contact, led the group today, and she obviously knows ASL pretty well. She gave the group a few signs to use like open, help, mommy, daddy, and more, to have the parents use while playing with the kids.
When they turned us loose, Mary-Kelsey had set a little clear tub with a orange tube-shaped thing in it near us. It was totally the perfect thing for Braska, as you probably know if you're familiar with her at all, because she is all about tubes, ropes, cords, strings, anything that shape. I didn't figure she'd even understand the idea that it was visible through the container but she couldn't get it, so I took the top off, and she reached in for it. We've been working on container play with Miss Judy, our developmental therapist, so Braska has become faster with reaching into things to get a toy. The tube thing was a strange texture, like a gummy worm almost, and very stretchy. She liked it, initally just checking it out thoroughly with her eyes, and then grabbing it to pull. She took it with both hands, pulling it by both ends while I held the middle. We called it the Baby Bowflex, good resistance training for her little arms. She even went after it mouth-first at one point, which is not something she usually does. She took little breaks, but stayed with it for quite a while. There are some pics and videos on her site, of course, if you would like a visual example.
She also did plenty of her favorite thing the last few days...squats. She's decided that she needs to be moving all the time, and this is SO NOT been her pattern up til recently. And it's taking some getting used to for me, that's for sure. She will reach around when she's sitting in my lap, grabbing for something to hold onto, but more so that I will pick her up. Then she plants her feet on my legs and straightens up to a stand. I have to steady her right at the hip joints on both side, but otherwise, she's good to go. She holds that for about 10 seconds or so then drops to a squat, but not all the way to sitting. She waits a second or two then goes back up. It's amazing to see her working with all this strength out of nowhere, it seems. She'll do this about 6 or 7 times, then she'll plop down for a break of about a minute or two, and she's reaching around and ready to go again. She spent most of the rest of the playtime doing this, not interested in the toys so much.
When it came time for snack, they told us that they had the snacks in containers that would need opening, so they wanted to see how the children showed that they wanted the food and help getting it. M and I just laughed, thinking how long we would be waiting if we waited for her to show that she actually desired food. But we took her to the little table, gave her some of the colored goldfish, and figured that was it.
Then came our breakthrough of the day.... I feel like a need a drum roll here. I told M to put one of the goldfish on her lip or tongue so she could get a taste, just because this is what we try to do when food is in front of her. Showing her that it has flavor different than a toy, thinking that it might peak her interest at some point. Well, today was that day. She smacked her lips a bit from the salty fish, and then out come the tongue as she leaned forward toward her dad's hand that was holding it. He wasn't paying attention at first, so I poked him and said, "She wants it!" He held it up there and she licked. Again, and again, and again. She would take a little break here and there and push his hand away, but then she'd always come back to it. When she'd lick all the salty goodness off, he'd get a new one. And there she would go again. It was crazy. The students were video taping, as they do each class, so they were getting it. We were cheering, but not too loudly to startle her or distract her too much, and the other kids were totally uninterested, which was totally fine. One of the fish got kind of soggy with the licking, and she was opening her mouth just a tad with her tongue out, so M stuck it in to see what she would do. She didn't spit it out immediately via big messy raspberries that she usually does. She kind of held it in and just looked at us. I was trying to get her to take a little water from the sippy, but that wasn't going to happen, so I took the lid off and kind of poured it in her mouth to moisten things up. She managed it well, only a little came out later, with a slight little gag reaction, but not bad at all. She ended up getting two by the time it was over.
Needless to say, we were pretty excited, as were the students and supervisor. It was fun to watch her do something new. But we are not calling to have the g-tube scheduled to be removed just yet. She's famous for doing something amazing once and not repeating that show. There was the bottle in the hospital last April (took the whole darn thing several times, only to refuse it once we got home, never to take one again), then there was feeding herself with a spoon of baby food, also never to be seen again. So we celebrate our little breakthrough, but we're not unrealistic that this is a new trend. If she continues to explore foods more, we'll be very happy, but if not, it's ok. She'll get there one day.
All in all, a good playgroup day. I didn't do nearly as much watching and interacting with the other kids today since Braska was busy with things the whole time, but everyone was nice and greeted everyone else. It seems to be a really nice group of people. I feel better about the whole thing, and I think it will be good for Braska, most importantly.
Monday, February 18, 2008
Today marks one year from when Braska started telling her "stories" through this blog. She was just shy of 3 months old and preparing for open-heart surgery the next week. In an attempt to keep the grandparents happy with plenty of updates on how she felt that day and what fun things she was learning from her baby bouncy seat, she decided to share a story each day, along with a few pictures here and there.
Braska has come a long way...a very long way. She has gone from a quiet, very calm baby whose heart was working hard to keep her awake for longer than a few hours at a time to a little almost-toddler who has decided that she wants to try things (not eating, of course), go places, and interact with us in ways I honestly didn't think we'd experience for much longer than it has been. She has now worked about 11 months with developmental therapy and occupational therapy and about 6 months with speech/feeding therapy. She's mastered rolling, finally conquered sitting, she's working on standing, and if we could only convince her to eat! She spent 8 days in the hospital for heart surgery, 7 days in the hospital for rotavirus/dehydration, one overnight for her PEG procedure, only a few hours for her PEG to button change, and minutes for the granulation removal. (That's not counting the 24 days in the NICU pre-blog.) We've accumulated a long list of doctors, all of whom who have been very helpful and thorough with our various issues. And we've learned the road from Champaign to St. Louis well enough to drive it in our sleep....but we won't.
This venture has become a blog monster that neither of us ever expected. It has served as a comfort to me during the beginning, when I needed adult conversation and support badly. It has served as a virtual diary of sorts to save and look back on when I can't remember the date something happened. And most importantly, it has served as the venue through which we've met and come to know so many people who have offered SO much knowledge, support, encouragement, and acceptance. I can't even imagine my day without blogging, as sad as that seems sometimes. But it's an outlet, and it's something I really enjoy. It has helped to educate and inform many people who didn't know about DS or had never seen a baby with it. It has even played a part in helping at least one mother decide to give her baby the chance to live, and what a beautiful, precious LOVED baby she is. I feel sure it has touched lives we don't know about and maybe never will. That's ok. We're thankful for the opportunity to say hello each time you stop in to check in on the happenings in our day. I really consider it an honor that so many of you are regular readers and care so much about what's going on in the life of my daughter and our family. It is not taken for granted, let me assure you.
In order to reminisce just a bit, here are some favorite posts, some important ones, and a little glimpse at our journey over the last year.
~~To start with, of course, the first post on the blog... A baby blog?
~~Some of our open-heart surgery posts... Sleeping Beauty, the first day of fixed-heart wiggles, the last day in the hospital, and the day to go home!
~~There's been lots of therapy pictures and info...Miss Robin's first visit, Miss Judy's playtimes, and eye tests with Miss Sue. Don't forget all the feeding with Miss Louise, like the day she surprised us all, and the messes we've made.
~~There was Braska's first pool day.
~~She worked hard at rolling.
~~Can't forget the glasses!
~~Just this month she started to think about standing.
~~There was plenty of Bears football watching, including dressing for the part.
~~We shared about lots of doctors and hospitals and procedures and such. Like when she got her new tube (PEG), and how she first reacted, and what she thought about it.
~~We learned alot at her six-month appointments at the DS clinic, from both her perspective and the adult detailed version, and her one-year check-ups as well.
It's been quite a ride, and it's "only just begun", as the Carpenters would say. For the few of you who have been on board from the beginning, thanks for sticking with us. For all of you that have jumped on our little bandwagon along with way, we're SO glad to have you on the journey with us. Here's to another fun-filled year and many more to follow.
Saturday, February 16, 2008
This morning we went to the Stay N Play Playgroup hosted by the University of Illinois Early Childhood Development Lab. Braska was chosen to participate in this group, and I was glad to have the chance for her to interact with other kids and with students who would learn from her too. I thought that there would be some other kids with developmental delays, maybe even DS, but that wasn't the case. She was the lone "non-typical" kid. Initially, I wasn't sure how this would go. The students and supervising faculty are super nice. They obviously love kids and playing with and teaching them. The group we're in is 8 children, ages 7 months to 15 months. We're at the high end of the chronological age and closer to the low end of the developmental age. But I figured at least we wouldn't be the only one to just sit and watch, playing kind of our own. I was wrong, though.
Little Kathryn, 15 months, was crawling up in her own chair, running like a champ, sharing toys, and obeying instructions. She was just adorable, adopted from an Asian country, super petite (only a pound more than Braska), and obviously very smart. Even the youngest one, 8 1/2 month old Madeline, was crawling all over the place like a pro. There was Phoena (fee-na), Reece, and Sheila all running about and happy when they had a toy they liked. Alina was 10 months and cute as a button. She sat next to us at snack and devoured her colored goldfish. Then there was Braxton, the lone boy, 15 months, and wow...I steered Braska out of his radar whenever possible. He was big, dangerous, handsy, and one seriously drooling, coughing, and snotting machine. His mom was very nice, but she had her hands full. Poor guy didn't know what to do with so many cute girls within his reach!
Times like these, which haven't been all that frequent, usually surprise me by invoking a reaction that I don't expect. I sat there for the first several minutes, watching the others run around and play and share, thinking that this was just not going to work. God bless M for going with me. I didn't even ask him to go. I didn't even hint at it in the least. I just assumed he'd stay home and Braska and I would check it out. But he went, and I was glad to see some other dads there too.
It's not that I don't know the reality of our situation. It's not that I am not aware of Braska's delays and limitations. It's not that I'm embarrassed of her delays. It's not even that I'm resentful of the "normal" kids or their parents. I think it's more that I feel the need to explain things. I want to defend her, show that she's not without merit or value. I tend to rely on her good looks, silly as that sounds. Everyone gushes over how adorable she is, everywhere we go. I've never had a negative comment about her at all in public, which I know happens to alot of parents in my shoes. The glasses are a big draw, everyone cooing and asking about them. She gets compliments on her hair and her snazzy outfits, and I am proud that she gets positive reactions. I'm admittedly big on appearances, so I'm pleased that people find my kid cute and not repulsive. That's natural and acceptable, right? I know it's an issue for me to work on, my shallow nature regarding the outside. But in these situations, that's my comfortable place. That's where I know we can move the conversation to and relax.
Today we participated, she played, we sang along with "The Hello Song" and it's close relative, "The Goodbye Song." I think it's good for Braska to have this kind of exposure, since she spends 96% percent of her time with just us, and the remainder is spent with a very small circle of friends who we don't see that often. The students and supervisor were great, especially Mary-Kelsey, our assigned student for the semester. They asked about what things they could incorporate for Braska, what types of toys or items that she would best respond to or that would assist in meeting her developmental goals in EI. It's very nice of them to take these things into consideration. I have to think they thought that she would be an interesting subject for the class and this part of the semester requirements for the students, or we wouldn't have been chosen for the group. They had all her background and info from the beginning. Mary-Kelsey is a speech pathology student, and I say it never hurts to have more exposure to speech/language and feeding help.
Introductions were done of the kids, but not with ages or any other info. So we gleaned ages just from hearing people ask and answer while the kids were playing. This is where I felt a bit lost. I didn't get to explain why she didn't crawl to get toys. I didn't get to explain why she was the only one at the table who shuffled her snack but didn't put it anywhere near her mouth, why her sippy cup was the only one not touched. I didn't even get to use the words Down syndrome. Is that good? Should I be glad it wasn't an issue? Or did they all just know and ignore it? Did they just think "something's different about that kid" and leave it at that? I don't know. I wonder if they were trying to be all about the inclusion thing and didn't want to make us feel different or like a stand-out.
I don't know. I guess I'm still processing. As I sit here, I'm not upset at all. I'm not hurt or disappointed or anything. Please don't think that or read that into the picture. I'm just thinking through the morning. I wonder why I reacted like I did. I mean, I know why I kept her from Braxton's reach.
Above all, I'm proud of her for not flipping out in a situation that was very overwhelming. The noise and the people and the unfamiliar place. These are things that often are too much for her individually, but together, I was sure it would bring a withdrawal, at least. But she didn't seem to mind. She watched at first, kind of let it all sink in and process, then she played. Mostly she played with the things we gave her, she's easy like that. But there were a couple things that she's used with her therapists, so she particularly liked those. She babbled a little, and she didn't mind at all sitting in a little kid chair at the table for about 10 minutes playing with colored goldfish and banging on the table. I'm anxious to see how it goes as we move forward. This lasts til the end of March or early April, I think. Every Saturday morning, we'll go and play. I bet by the end things will be very different, so that will be fun to see. And most of all, I'll probably learn alot and work through my own internal things. It's about time, I'd say.
Way to go, Braska Bear. Thanks for going, M.
Friday, February 1, 2008
Tonight I was packing the bag for them, and I'm trying to make it very clear what my intentions are for Braska's stuff without packing notes with each item. But when it comes to dressing for church, there's no taking chances. So I made a little bundle of things, including her onesie, tights, shoes, hair bow, and the three-piece outfit.
Too much?? I think not. M would admit to not having a clue about how to dress her when it comes to needing to match. I'm just trying to be helpful. For the "casualwear," I didn't go to such lengths, leaving off the ribbon-tied element. I just put BabyLegs and socks inside the matching folded long-sleeved onesie...times 3. (She tends to ooze after feedings sometimes, and I can't stand to leave her in wet, icky clothes.)
Here's hoping for a productive couple of days, and that Braska will behave for her Pop. She's awfully darn attached to me. This will be the longest she's been away from Mommy. I think I'm due for a break, even if it is a work-36-hours-straight break!