Hannah, at dinner yesterday, staring at her napkin, says, "I'm just watching the news so I know what's going on in the world."
Isabelle, while talking to my parents on Skye (the webcam), says, "Grammie, there are a lot of bones in our hands and they're what hold our fingers together and help them to move."
***************************************************
So Hannah had botax on Friday. She did great. She had 6 injections total, without sedation. She cried hard during the procedure but once it was over (it took under 5 minutes) she was fine. I, on the other hand, could have used some mild sedation. I was pretty emotional and stressed.
Now we're 4 days post-botax and there are some small differences that we're seeing. We noticed that over the weekend, she was pretty cranky and tired which may have been a side effect of either the botax itself or the overall change in her tone and her reaction to that. We gave her some Motrin for about a day and she seems to be getting back to herself now. We went to the mall on Sunday and brought her walker, but she wasn't up for walking that much and was also doing quite a bit of in-toeing and dragging of her left foot which was a little disheartening. That's one of the things I had hoped would be improved after botax. But from what I've been reading and hearing from people, in the short term it can be more difficult for kids to move around post-botax because they've learned how to use their tone for mobility and suddenly it's gone or much better. So hopefully once she adjusts to things that will improve.
When we stretch her, Hannah's range of motion seems better and she's definitely easier to stretch. She also seems to be having a little bit of a better time pulling up to stand and for the first time the other day, she tried to get her right foot under her first instead of just using her arm strength to pull up. She is also doing a pretty good job of walking up the stairs while holding onto one of our hands and one of the railings. And the amount of time Hannah can tolerate sitting cross-legged or with legs out straight seems longer.
So there are a lot of little things but not one major breakthrough, which is I think the way it goes with botax. I hope that we can take full advantage of this window to help her along in some of the areas we've been working on. I'll report back on this as we go along.
Tuesday, February 10, 2009
Saturday, January 31, 2009
slacker
I've been a little behind on posting lately but not for lack of things going on over here. The girls and I are looking for new and creative ways to keep busy this winter. The latest trick is to go swimming at a local gym on Friday mornings.
We're signed up for private lessons with a woman who's like a legend in these parts. I think she has taught probably 90% of the kids in our area how to swim. She's pretty low-key and has lots of fun ways to get little ones to feel comfortable in the water. We've been swimming at this pool before (it's actually the warm water "soaking pool" right next to the colder lap pool) with Hannah's OT and it's a great spot because it's only around 2.5' deep and toasty warm. Perfect for keeping muscles loose and relaxed. Both girls love it and it's a great way to keep them physically on the move when we'd otherwise be sitting watching the snow pile up outside. And it leads to great naps!
In other news, Isabelle got fitted for her orthotics last Thursday, which went pretty well. The orthotist actually recommended we start by only bracing her right foot since that one is so much tighter than the left, and is up on tip-toe with more frequency. She said it's possible that once Isabelle's right foot stays flat, her left will also. So we're going to give it a try. It will take about 2 weeks for insurance to clear and another 2 weeks to pick up the brace. So far, Isabelle seems pretty open about the idea of wearing it and was excited to pick out the design for her velcro straps. I guess the proof will be in the pudding when it comes time to actually put it on her foot. Even though I'm not at all excited to have another kid in braces, I really think it's the right thing to be doing. Isabelle has gotten super tight and she almost never walks flat-footed anymore. Hopefully we'll nip it in the bud and she'll regain a more normal gait pattern soon.
Next Friday, Hannah has her first round of botax injections. As the date gets closer, I'm getting anxious but also excited and hopeful. We're engaged in all of these different therapies and activities and I'm curious to see how, if at all, the botax impacts her performance and capabilities. B will be going with me to the appointment and Isabelle will stay home with my mom who is in town for the week. I'm hoping that after dealing with the pain of the injections, B and I can shower Hannah with some individual attention and love to make up for it. A little tylenol won't hurt either! We're opting not to sedate her for this first time, to see how she fares. If it seems like she has a harder time tolerating this than a typical round of immunizations at the ped., we may rethink this strategy in the future.
After botax, we'll be seeing Hannah's PT with more frequency and focusing even more on stretching and strengthening. In some ways, it's a good kick in the pants for us because we've been slacking on this lately. In our every day caretaking of Hannah, we always implement correct positioning and movements that enhance her strength and function and incorporate stretching of her muscles. But we haven't been great about doing more deliberate and focused work with her. To our credit, some of that is because it's not very easy to get an independent 3 year old to let you stretch her. But it's also just hard to squeeze it into the daily routine.
We're getting better though, especially now that Isabelle is going to be getting orthotics and needs to be regularly stretched as well. So hopefully we can maximize the botax window and be more diligent about working with Hannah.
Other than that, it's nice to see more sun and longer days but it's still freezing here and there's snow everywhere. This winter has felt endless: it started to get cold and snowy in October and hasn't let up since! I for one will be rejoicing the coming of spring...
We're signed up for private lessons with a woman who's like a legend in these parts. I think she has taught probably 90% of the kids in our area how to swim. She's pretty low-key and has lots of fun ways to get little ones to feel comfortable in the water. We've been swimming at this pool before (it's actually the warm water "soaking pool" right next to the colder lap pool) with Hannah's OT and it's a great spot because it's only around 2.5' deep and toasty warm. Perfect for keeping muscles loose and relaxed. Both girls love it and it's a great way to keep them physically on the move when we'd otherwise be sitting watching the snow pile up outside. And it leads to great naps!
In other news, Isabelle got fitted for her orthotics last Thursday, which went pretty well. The orthotist actually recommended we start by only bracing her right foot since that one is so much tighter than the left, and is up on tip-toe with more frequency. She said it's possible that once Isabelle's right foot stays flat, her left will also. So we're going to give it a try. It will take about 2 weeks for insurance to clear and another 2 weeks to pick up the brace. So far, Isabelle seems pretty open about the idea of wearing it and was excited to pick out the design for her velcro straps. I guess the proof will be in the pudding when it comes time to actually put it on her foot. Even though I'm not at all excited to have another kid in braces, I really think it's the right thing to be doing. Isabelle has gotten super tight and she almost never walks flat-footed anymore. Hopefully we'll nip it in the bud and she'll regain a more normal gait pattern soon.
Next Friday, Hannah has her first round of botax injections. As the date gets closer, I'm getting anxious but also excited and hopeful. We're engaged in all of these different therapies and activities and I'm curious to see how, if at all, the botax impacts her performance and capabilities. B will be going with me to the appointment and Isabelle will stay home with my mom who is in town for the week. I'm hoping that after dealing with the pain of the injections, B and I can shower Hannah with some individual attention and love to make up for it. A little tylenol won't hurt either! We're opting not to sedate her for this first time, to see how she fares. If it seems like she has a harder time tolerating this than a typical round of immunizations at the ped., we may rethink this strategy in the future.
After botax, we'll be seeing Hannah's PT with more frequency and focusing even more on stretching and strengthening. In some ways, it's a good kick in the pants for us because we've been slacking on this lately. In our every day caretaking of Hannah, we always implement correct positioning and movements that enhance her strength and function and incorporate stretching of her muscles. But we haven't been great about doing more deliberate and focused work with her. To our credit, some of that is because it's not very easy to get an independent 3 year old to let you stretch her. But it's also just hard to squeeze it into the daily routine.
We're getting better though, especially now that Isabelle is going to be getting orthotics and needs to be regularly stretched as well. So hopefully we can maximize the botax window and be more diligent about working with Hannah.
Other than that, it's nice to see more sun and longer days but it's still freezing here and there's snow everywhere. This winter has felt endless: it started to get cold and snowy in October and hasn't let up since! I for one will be rejoicing the coming of spring...
Sunday, January 18, 2009
Reclaiming winter
Today was a pretty amazing day for our family. We've been doing some research into adaptive ski options for Hannah because we really want to get both girls out on the snow. B set H up for a lesson with a program near our house (we're so lucky to live in the mountains!) and the plan was to also rent skiis for Isabelle.
When we got to the mountain we were able to park right up in front of the lodge (a nice perk of the handicapped parking pass on a holiday weekend!) and the adaptive program office was on the main floor. It was filled with friendly, smiling people who immediately came up and introduced themselves to Hannah and commented on how cute both girls were and how great it was that they were there at such a young age.
Neither B or I knew what to expect and we kind of envisioned just tooling up and down the slight slope at the base of the mountain with the girls, just letting them get the hang of being out there. But the folks in the adaptive program had bigger plans for Hannah: they strapped her into a mono ski with the intention of taking her up on the lift and down one of the runs! I decided to rent skiis so I could go down with her and the guides (all volunteers, by the way). Hannah was pretty quiet the whole time we were getting everything set up but not at all scared or anxious. She did great on the lift and seemed to be doing okay as we made our steady progress down the mountain, but about halfway down we stopped to check on her and she said to me, "I want to get out and ski by myself now."
My heart squeezed. I had been wondering, when they initially strapped her in, how she'd feel about it all. She knows what skiing looks like and she's a really smart kid. I wasn't sure she'd be content to just sit and ride but it didn't seem like they had any other options for her. I'd also noticed that when she was making her way down the mountain, she kept flinging her arms out as they picked up speed, like maybe it was a little too fast. So I told Hannah that once we got to the bottom of the mountain, she could get out but that we had to get down first. But she wasn't having it. As they started down the mountain again, she started to cry pretty hard. The primary guide (the one behind her mono ski) said he could take her out and ski down with her in his arms. His main goal was to ensure that she was having fun and neither one of us wanted her to have a bad experience.
So with Hannah is his arms and someone else manning the ski, we all continued down the mountain at a pretty slow pace, Hannah telling the guide often to "slow down, please." This guide was amazing; we stopped often so she could watch me ski and just to check in on her. When we got to the bottom of the mountain, we saw Isabelle and B and Hannah immediately said, "I want to try skiing by myself, like Isabelle." Again, the heart squeeze.
The guide and I had a little pow-wow. I explained that Hannah's a really smart, motivated kid who's not psyched to just sit back and watch, which was sort of what she was doing in the mono ski. I told him that she was really pretty steady with her walker and that maybe we could try renting some skiis and boots for her, just like Isabelle, and Brendan could just hold her between his legs and let her get the experience of it. The guide was awesome: he was willing to give it a try and game for doing whatever we wanted to do.
Once we got Hannah set up, she had a smile from ear to ear. Brendan walked up and down the little slope with her, as he'd done with Isabelle, and then held her so she could ski down. Standing upright. On her own two legs. She LOVED it.
Seeing both of my girls coming down the mountain on skiis was such an amazing sight. I've been so bummed out this winter, wanting badly to get back into some of the snow fun that we used to do but wondering how to make it happen. And then we saw a glimpse to the future today and I couldn't be happier. The girls had so much fun, they kept talking about how they were "terrific skiers" and wondering when they could come again. I think our plan now will be to keep renting skiis for both girls and letting them ski between our legs and get the feel for being out there, with the hopes that as Hannah gets stronger and eventually transitions to forearm crutches, she can do it on her own. If attitude is any indication, I know our girl can do anything!
Sadly, I don't have any pictures of Hannah once she finally got on skiis but I do have some pics of the mono ski and also of Isabelle who, by the way, was a total natural. I have some video of both girls which I'll try to upload soon.
I'm starting to like this snowy cold weather again:)
When we got to the mountain we were able to park right up in front of the lodge (a nice perk of the handicapped parking pass on a holiday weekend!) and the adaptive program office was on the main floor. It was filled with friendly, smiling people who immediately came up and introduced themselves to Hannah and commented on how cute both girls were and how great it was that they were there at such a young age.
Neither B or I knew what to expect and we kind of envisioned just tooling up and down the slight slope at the base of the mountain with the girls, just letting them get the hang of being out there. But the folks in the adaptive program had bigger plans for Hannah: they strapped her into a mono ski with the intention of taking her up on the lift and down one of the runs! I decided to rent skiis so I could go down with her and the guides (all volunteers, by the way). Hannah was pretty quiet the whole time we were getting everything set up but not at all scared or anxious. She did great on the lift and seemed to be doing okay as we made our steady progress down the mountain, but about halfway down we stopped to check on her and she said to me, "I want to get out and ski by myself now."
My heart squeezed. I had been wondering, when they initially strapped her in, how she'd feel about it all. She knows what skiing looks like and she's a really smart kid. I wasn't sure she'd be content to just sit and ride but it didn't seem like they had any other options for her. I'd also noticed that when she was making her way down the mountain, she kept flinging her arms out as they picked up speed, like maybe it was a little too fast. So I told Hannah that once we got to the bottom of the mountain, she could get out but that we had to get down first. But she wasn't having it. As they started down the mountain again, she started to cry pretty hard. The primary guide (the one behind her mono ski) said he could take her out and ski down with her in his arms. His main goal was to ensure that she was having fun and neither one of us wanted her to have a bad experience.
So with Hannah is his arms and someone else manning the ski, we all continued down the mountain at a pretty slow pace, Hannah telling the guide often to "slow down, please." This guide was amazing; we stopped often so she could watch me ski and just to check in on her. When we got to the bottom of the mountain, we saw Isabelle and B and Hannah immediately said, "I want to try skiing by myself, like Isabelle." Again, the heart squeeze.
The guide and I had a little pow-wow. I explained that Hannah's a really smart, motivated kid who's not psyched to just sit back and watch, which was sort of what she was doing in the mono ski. I told him that she was really pretty steady with her walker and that maybe we could try renting some skiis and boots for her, just like Isabelle, and Brendan could just hold her between his legs and let her get the experience of it. The guide was awesome: he was willing to give it a try and game for doing whatever we wanted to do.
Once we got Hannah set up, she had a smile from ear to ear. Brendan walked up and down the little slope with her, as he'd done with Isabelle, and then held her so she could ski down. Standing upright. On her own two legs. She LOVED it.
Seeing both of my girls coming down the mountain on skiis was such an amazing sight. I've been so bummed out this winter, wanting badly to get back into some of the snow fun that we used to do but wondering how to make it happen. And then we saw a glimpse to the future today and I couldn't be happier. The girls had so much fun, they kept talking about how they were "terrific skiers" and wondering when they could come again. I think our plan now will be to keep renting skiis for both girls and letting them ski between our legs and get the feel for being out there, with the hopes that as Hannah gets stronger and eventually transitions to forearm crutches, she can do it on her own. If attitude is any indication, I know our girl can do anything!
Sadly, I don't have any pictures of Hannah once she finally got on skiis but I do have some pics of the mono ski and also of Isabelle who, by the way, was a total natural. I have some video of both girls which I'll try to upload soon.
I'm starting to like this snowy cold weather again:)
Tuesday, January 13, 2009
quotable/notable
Isabelle: "Mommy, why do we have to be careful when we eat carrots?"
Me: "Because carrots are a serious food. They're no joke."
Sometimes I can't believe these things come out of my mouth!
*****************************************************************************
Isabelle: "Mommy, do we have our tree anymore?" (in reference to our long-gone Christmas tree)
Me: "No, we don't."
Hannah: "It went to Mother Nature."
Isabelle: "It go-ed to the dump."
And there you have it.
Me: "Because carrots are a serious food. They're no joke."
Sometimes I can't believe these things come out of my mouth!
*****************************************************************************
Isabelle: "Mommy, do we have our tree anymore?" (in reference to our long-gone Christmas tree)
Me: "No, we don't."
Hannah: "It went to Mother Nature."
Isabelle: "It go-ed to the dump."
And there you have it.
Sunday, January 4, 2009
Holiday Recap
We spent the week of Christmas down at my parents' house along with my brother and his family, and my sister. It was so nice to get away for awhile and the girls totally lap up all the extra attention. My dad got himself a Santa suit for the occasion which was a trip-the girls were pretty uncertain but my 2 year old nephew couldn't get enough of it. We ate great food, took lots of naps and had some good quality time with the fam.
Tomorrow, it's back to reality. Blech.
Year of the Ox
"Those born under the influence of the Ox are fortunate to be stable and persevering. The typical Ox is a tolerant person with strong character. Not many people could equal the resolution and fearlessness the Ox exhibits when deciding to accomplish a task or an objective. "
I like this. I think I will aspire to be this person, even though according to the Chinese horoscope, I'm actually a pig. (Here's where I resist the urge to make a wisecrack-please try to refrain as well!) Actually, it's safe to say that my experience raising Hannah and Isabelle has forced me to become more oxen-like in ways I didn't think I had in me before. Maybe it's because I see the two of them exhibiting exactly these traits themselves, starting with their traumatic birth and with every hurdle they have overcome since then.
Looking back, 2008 was a perfectly fine year with lots of fun and adventure and growing and changing. I'm excited to see what 2009 has in store for us and with the OX leading the way, I know we'll meet it with fortitude and strength.
Happy New Year!
I like this. I think I will aspire to be this person, even though according to the Chinese horoscope, I'm actually a pig. (Here's where I resist the urge to make a wisecrack-please try to refrain as well!) Actually, it's safe to say that my experience raising Hannah and Isabelle has forced me to become more oxen-like in ways I didn't think I had in me before. Maybe it's because I see the two of them exhibiting exactly these traits themselves, starting with their traumatic birth and with every hurdle they have overcome since then.
Looking back, 2008 was a perfectly fine year with lots of fun and adventure and growing and changing. I'm excited to see what 2009 has in store for us and with the OX leading the way, I know we'll meet it with fortitude and strength.
Happy New Year!
Monday, December 22, 2008
Solstice thoughts
We trudged through the deep snow up the hill to a Hanukkah party yesterday, pulling the girls in their sled. We were invited by some new friends of ours so a lot of the folks there were unfamiliar to us. It turned out to be a very welcoming and warm group and the girls were way into the dreidels, the chocolate gelt and the challah bread. These were familiar items to them since we'd done some boning up on Hanukkah with a few books from the library. They were excited to see the manorah being lit and listening to how Hanukkah came to be. As we left the party one of the other guests light some sparklers that her kid had stuck in his pocket on their way out the door. We watched them flash and sparkle and then die out, and then we walked home through the dark of the early evening, pulling the girls in the sled right in the middle of the road because it had not yet been plowed, feeling the fat flakes fall on our cheeks and lips and hearing the quiet of a snowy night.
It was in many ways the perfect way to acknowledge the solstice. I have been kind of grumpy lately about the snow we've been having as I spend most of the time trying to find ways to navigate through it with two preschoolers and Hannah's walker. In my pre-kid days, I would be buckling into my snowboard and floating down the mountain on the fresh powder, whooping with delight. Now I wonder how we'll ever incorporate snow sports into our family routin, which can feel pretty isolating as just about everyone we know does something to commune with the powdery white stuff: snowshoe, ski, backcountry ski, snowboard...
But last night I realized we can still find ways to be out in the beauty of a fresh crisp snow. It might be different than it used to be, but there is magic to be found on a quiet snowy walk. The girls felt it, too. They were giddy and giggly and pink-cheeked and happy the whole way home.
So with the passing of this solstice I'm going to try to welcome the new ways we appreciate winter in our family (even if I still curse it occasionally!:)
It was in many ways the perfect way to acknowledge the solstice. I have been kind of grumpy lately about the snow we've been having as I spend most of the time trying to find ways to navigate through it with two preschoolers and Hannah's walker. In my pre-kid days, I would be buckling into my snowboard and floating down the mountain on the fresh powder, whooping with delight. Now I wonder how we'll ever incorporate snow sports into our family routin, which can feel pretty isolating as just about everyone we know does something to commune with the powdery white stuff: snowshoe, ski, backcountry ski, snowboard...
But last night I realized we can still find ways to be out in the beauty of a fresh crisp snow. It might be different than it used to be, but there is magic to be found on a quiet snowy walk. The girls felt it, too. They were giddy and giggly and pink-cheeked and happy the whole way home.
So with the passing of this solstice I'm going to try to welcome the new ways we appreciate winter in our family (even if I still curse it occasionally!:)
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