Wednesday, August 26, 2009
The lingering trauma of the NICU
Today's NY Times has this article about the post-traumatic stress many parents face after having a child in the NICU. A good and validating piece.
Tuesday, August 25, 2009
Waiting for the babe
I'm now 38.5 weeks pregnant and still amazed that I made it this far, over 11 weeks farther than I did with the girls. I'm starting to wonder if I'll EVER go into labor, actually, which is a pretty crazy feeling. I feel like I'm in pregnancy purgatory. I'm very ready and excited to meet this new little one, although I'm definitely anxious about it as well. I'm wondering how I'll manage the girls and a newborn, especially with Hannah's various therapies and appointments to deal with. But maybe it will be a little bit easier when I have my body back. For the past few months or so, I feel like I've been a sub-par mom because I haven't had the energy to keep up with the girls the way I usually do. B has taken over the bulk of the stretching with Hannah but all of the little things I used to do during the day to ensure she was getting enough of her exercises in have fallen to the wayside. At least it's summer, so she's getting outside a ton and is building up some amazing endurance with her walker. And the day-to-day way that we do things around here also help ensure good posture and positioning. But the big stretching/exercise chart I made is a painful reminder of how much more there is to do, and how little I've been able to accomplish.
I realize too that while I'll have more physical capabilities once the baby is here, I'll also be exhausted and probably overwhelmed in different ways. Ah, it's going to be crazy around here for awhile! I guess I'll just have to cut myself some slack, do the best I can do and realize that it won't be this crazy forever. I just don't want Hannah to backslide or regress in the process, because she's really come so far in the past year.
I realize too that while I'll have more physical capabilities once the baby is here, I'll also be exhausted and probably overwhelmed in different ways. Ah, it's going to be crazy around here for awhile! I guess I'll just have to cut myself some slack, do the best I can do and realize that it won't be this crazy forever. I just don't want Hannah to backslide or regress in the process, because she's really come so far in the past year.
Sunday, August 9, 2009
Crawling on all fours
Hannah is doing it, finally! It's so much work for her and you can see in this clip that some of it is "W sit scooting" as opposed to true four legged crawling, but she definitely gets herself up there and around and it's wonderful! You can hear her saying to herself, "One hand, two hands. One hand, two hands" as she reminds herself to get up on her arms AND her legs. Go, Hannah, go!
At the fair
Agricultural fairs/field days are big around here. B took the girls to one yesterday while I lounged around at home. I would have loved to be with them, but the idea of walking around in the hot sun for hours didn't appeal to my late pregnancy self. He got some great pics though. You can see how Isabelle is the total animal whisperer in these pics. She absolutely LOVES animals of all kinds and has a real knack with them, too. Hannah prefers to just check them out from a distance. Both girls had a great time and were hot, dusty and a bit "farmy-smelling" when they got home. It's summer in the country!
Wednesday, August 5, 2009
accessibility recap
We had our meeting Monday at the elementary school with the vice principal and the director of special ed. We had some immediate concerns to be addressed by the start of the school year:
But...(you knew there would be one, right?)
While these solutions will help in the short term, we are also interested in seeing more long range goals being met as well as the fostering of an "accessibility mindset" in any future projects the school undertakes. Changes that will benefit not just Hannah but other kids that come through the school in the future, or parents/grandparents/teachers, etc. that might also have mobility challenges. And although the two administrators nodded and murmured lots of affirmations that indicated they got that, several of the things they said told us otherwise.
For instance, the vice principal asked how long Hannah would be using a walker and if she would some day be using crutches or be walking independently. Read: "She won't need this kind of help long term, right?" B was quick to say that while we hope she will be able to transition to crutches at some point, we don't know anything for sure and also, this is not just about Hannah. These changes need to be made permanent, for everyone's benefit, not just hers.
Then the special ed director, when talking about the mats that were going to be put down around the playground, said, "What's great about these mats is that when Hannah moves to the bigger playground, the mats can move with her." Um, yeah. But again, what about a more permanent solution that can remain in place for all kids.
It also became clear that, either through cluelessness or gross negligence, the school does not have any kind of significant accessibility plan in place or way to address these issues. The playground was recently upgraded, in the past few years or so, and the special ed director admitted, "I'm not really sure why any of these accessibility issues were not taken into consideration when this was done." Good question, especially seeing as it's THE LAW.
Having not had any kind of experience with these types of issues and how they are typically handled in a school, I can't say whether or not this is an anomoly or if most schools try to just skate by on some of this until someone (usually an already overwhelmed parent) starts to raise concerns. But I can say that I'm really disappointed. I'm the kind of person who believes people want to do the right thing and tries to give people the benefit of the doubt. But it's clear to me that the folks we met with, while eager to address our immediate concerns, are not quite as able to see the bigger picture here, the fact that our community is not well-served when it is not accessible, and that this is about so much more than Hannah's specific and somewhat simple needs.
So we're trying to figure out where to go from here. Right now, we'll see how they do with following up on the items they said they were going to address before school starts. We also discussed getting together again about 6 weeks into the school year, to see how things are going. At that point, if we can shake ourselves out of the newborn phase we'll no doubt be immersed in with #3, we will try to start moving the ball in the direction of a more permanent, long range accessibility plan.
I feel overwhelmed by the thought of taking this on but can't imagine just accepting what is offered to Hannah and leaving it at that. Our community, our kids deserve so much more.
- easy parking and access to the building
- accessibility to the playground and a bucket swing
But...(you knew there would be one, right?)
While these solutions will help in the short term, we are also interested in seeing more long range goals being met as well as the fostering of an "accessibility mindset" in any future projects the school undertakes. Changes that will benefit not just Hannah but other kids that come through the school in the future, or parents/grandparents/teachers, etc. that might also have mobility challenges. And although the two administrators nodded and murmured lots of affirmations that indicated they got that, several of the things they said told us otherwise.
For instance, the vice principal asked how long Hannah would be using a walker and if she would some day be using crutches or be walking independently. Read: "She won't need this kind of help long term, right?" B was quick to say that while we hope she will be able to transition to crutches at some point, we don't know anything for sure and also, this is not just about Hannah. These changes need to be made permanent, for everyone's benefit, not just hers.
Then the special ed director, when talking about the mats that were going to be put down around the playground, said, "What's great about these mats is that when Hannah moves to the bigger playground, the mats can move with her." Um, yeah. But again, what about a more permanent solution that can remain in place for all kids.
It also became clear that, either through cluelessness or gross negligence, the school does not have any kind of significant accessibility plan in place or way to address these issues. The playground was recently upgraded, in the past few years or so, and the special ed director admitted, "I'm not really sure why any of these accessibility issues were not taken into consideration when this was done." Good question, especially seeing as it's THE LAW.
Having not had any kind of experience with these types of issues and how they are typically handled in a school, I can't say whether or not this is an anomoly or if most schools try to just skate by on some of this until someone (usually an already overwhelmed parent) starts to raise concerns. But I can say that I'm really disappointed. I'm the kind of person who believes people want to do the right thing and tries to give people the benefit of the doubt. But it's clear to me that the folks we met with, while eager to address our immediate concerns, are not quite as able to see the bigger picture here, the fact that our community is not well-served when it is not accessible, and that this is about so much more than Hannah's specific and somewhat simple needs.
So we're trying to figure out where to go from here. Right now, we'll see how they do with following up on the items they said they were going to address before school starts. We also discussed getting together again about 6 weeks into the school year, to see how things are going. At that point, if we can shake ourselves out of the newborn phase we'll no doubt be immersed in with #3, we will try to start moving the ball in the direction of a more permanent, long range accessibility plan.
I feel overwhelmed by the thought of taking this on but can't imagine just accepting what is offered to Hannah and leaving it at that. Our community, our kids deserve so much more.
Sunday, August 2, 2009
Summer fun
The girls and I had so much fun last week hanging with some Mommy friends and their little boys. We've known them since the girls and the first born of the boys were just a few months old, and it's such a comfortable and comforting relationship. I'm especially grateful for it because I think it's a really nice thing for them to have known Hannah since they were all so small, and know her as Hannah and not "the girl with CP." Her walker, her orthotics, her inability to do some of the things they do...I don't think the other kids even realize it, they just know she's Hannah of "Hannah and Isabelle." And that's a wonderful thing.
Wednesday, July 29, 2009
the latest
On Friday I'll be 35 weeks...I'm beginning to wonder if I will actually carry to 40 weeks and maybe even beyond! I hope not, as I want to have a VBAC and I don't go into labor on my own by 40 weeks, they'll schedule a C. But either way, it's pretty amazing to be at this point, 8 weeks farther along than when I had the girls. I start with going 2x week to the OB next Friday at 36 weeks (2x a week is a privelage reserved for those "advanced maternal age" mamas out there, joy joy!) and from then on, it will be a waiting game to see what this baby and mother nature has in mind for me/us.
On the Hannah and Isabelle front, we have a meeting scheduled for next Monday with the principal, vice principal and director of special ed to talk about the letter we sent them a few weeks back. Hoping that we can all come up with a reasonable plan for making the girls' school more accessible. Wish us luck!
We had an appointment with the girls' physiatrist last week and things are pretty much status quo: Isabelle needs to keep wearing her orthotics as often as possible and hopefully, eventually she'll stop walking on her toes and not need them. Lately she'll announce, out of the blue, that she wants to show me something with her feet and then she'll walk around on flat feet which is great. But she really has to concentrate and as soon as she gets excited or starts moving fast, back up on her toes she goes. At least she is trying, though!
Ms. Hannah will have another round of botax in the next month. She's doing great and continuing to increase her endurance and proficiency in her walker, pull up on anything and everything that she can, and climb in and out of her bed. She's able to help out with some of the steps to getting dressed and going potty, and she wants to do as much as she can on her own. When we take the girls into town with their stroller, Hannah always tells us she wants us to bring her walker and asks to get out and walk as soon as possible. She just doesn't seem to want to be stationery and if we have a more quiet day without as much physical activity, she'll ask, "Can I run around for a bit?" and then off she and Isabelle go, tearing around the house chasing each other. It's incredible to watch and makes me so proud of her hard work and hopeful about what she will do in the future. I don't have any illusions that she will be able to walk well without some kind of assistance, but I hope that soon (within the next year) we can get her using forearm crutches and that eventually, she'll be able to get around with those well enough to keep up with her peers. She'll always have mobility challenges but she is so motivated and has made such big gains in the past year with her walker that I can only imagine and hope that she'll continue to do so as she grows and gets stronger.
There are still questions looming about different surgical options (selective dorsal rhizotomy, PERCS, etc) but right now, Hannah seems to be maintaining her range of motion and progressing developmentally so it doesn't seem appropriate to do anything at this point. The big area of concern is her left leg, which turns in and drags a bit when she walks. Even with botax, her leg still wants to turn in so this is probably the thing that will trigger surgery at some point. But according to the physiatrist, we're not there yet.
Regarding the selective dorsal rhizotomy, the physiatrist also thinks Hannah still needs to gain more strength before this would be a viable option. It seems like it could be a miracle procedure for some kiddos, if done at the right time, but it's a huge undertaking with tons of rehab time and inital loss of skills. Even if she were strong enough, I don't think it's something we could tackle right now, with another baby on the way. But in another year or so, it might be worth revisiting. We're going to have another consult at Dartmouth in October to just hear their thoughts on all of this but think that for now, we'll just keep doing what we're doing and watch Miss Hannah do her thing.
On the Hannah and Isabelle front, we have a meeting scheduled for next Monday with the principal, vice principal and director of special ed to talk about the letter we sent them a few weeks back. Hoping that we can all come up with a reasonable plan for making the girls' school more accessible. Wish us luck!
We had an appointment with the girls' physiatrist last week and things are pretty much status quo: Isabelle needs to keep wearing her orthotics as often as possible and hopefully, eventually she'll stop walking on her toes and not need them. Lately she'll announce, out of the blue, that she wants to show me something with her feet and then she'll walk around on flat feet which is great. But she really has to concentrate and as soon as she gets excited or starts moving fast, back up on her toes she goes. At least she is trying, though!
Ms. Hannah will have another round of botax in the next month. She's doing great and continuing to increase her endurance and proficiency in her walker, pull up on anything and everything that she can, and climb in and out of her bed. She's able to help out with some of the steps to getting dressed and going potty, and she wants to do as much as she can on her own. When we take the girls into town with their stroller, Hannah always tells us she wants us to bring her walker and asks to get out and walk as soon as possible. She just doesn't seem to want to be stationery and if we have a more quiet day without as much physical activity, she'll ask, "Can I run around for a bit?" and then off she and Isabelle go, tearing around the house chasing each other. It's incredible to watch and makes me so proud of her hard work and hopeful about what she will do in the future. I don't have any illusions that she will be able to walk well without some kind of assistance, but I hope that soon (within the next year) we can get her using forearm crutches and that eventually, she'll be able to get around with those well enough to keep up with her peers. She'll always have mobility challenges but she is so motivated and has made such big gains in the past year with her walker that I can only imagine and hope that she'll continue to do so as she grows and gets stronger.
There are still questions looming about different surgical options (selective dorsal rhizotomy, PERCS, etc) but right now, Hannah seems to be maintaining her range of motion and progressing developmentally so it doesn't seem appropriate to do anything at this point. The big area of concern is her left leg, which turns in and drags a bit when she walks. Even with botax, her leg still wants to turn in so this is probably the thing that will trigger surgery at some point. But according to the physiatrist, we're not there yet.
Regarding the selective dorsal rhizotomy, the physiatrist also thinks Hannah still needs to gain more strength before this would be a viable option. It seems like it could be a miracle procedure for some kiddos, if done at the right time, but it's a huge undertaking with tons of rehab time and inital loss of skills. Even if she were strong enough, I don't think it's something we could tackle right now, with another baby on the way. But in another year or so, it might be worth revisiting. We're going to have another consult at Dartmouth in October to just hear their thoughts on all of this but think that for now, we'll just keep doing what we're doing and watch Miss Hannah do her thing.
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