Hannah often mixes up "question" with "statement" especially when she's excited to tell me something. Today she emerged from the bathroom and said, "Mommy, I have SUCH a special question to tell you!"
Hannah can go to the bathroom in our house by herself almost totally independently, if she is wearing easy to pull down pants. But she often asks for help especially if she gets hung up on the "pulling down pants" part. Today though, I asked her to go to the bathroom and then told her to tell me when she was all done. She was wearing a leotard because she and Isabelle were pretending they were at gymnastics. I thought for sure she'd need help getting it off but figured she would let me know as she always did, or maybe she would figure it out herself.
That's when she popped out and made the above statement. So I said, "What, Hannah?" And she said:
"Mommy! I went to the bathroom ALL BY MYSELF! Here's what I did. First, I took off my leotard and got on the potty. Then I peed. Then I got the toilet paper and wiped myself. I got some pee on my hand, but then I wiped it with more toilet paper so it was okay. Then I put the paper in the toilet, got up, and pulled my leotard back on. ALL BY MYSELF! Then I washed my hands, dried them off, and now I'm all done! Isn't that FANTASTIC?!"
Yep, kiddo, it is.
Thursday, November 11, 2010
Thursday, November 4, 2010
botax round #??
Today Hannah had her 3rd round of botax under sedation and I'm not sure how many botax rounds total she's had, maybe 6 or 7. The first time we went to the Comfort Zone, she did fine. The second time she was a lot more anxious about the IV insertion even though she had Emla cream to numb the area. Today any time the nurse tried to get near her arms, she cried so they recommended giving her some oral Versed (Valium) first to take the edge off her anxiety and give her a little amnesia about the whole event. That sounded good to me so I agreed and within 10 minutes Hannah was in outer space. The only downside was the post-Versed hangover: Hannah was cranky and whiny the rest of the day. But I think it was worth it and plan to have them give it to her right away next time. It's just not worth it to put her through all of that every 3 months.
This round, Dr. B did 18 injections total, 9 in each leg. I never processed the fact that when kids are under sedation docs tend to do more injections. When she was awake, Hannah only got 6-8. But it makes sense; same amount of botax but spread over a larger area. And I can see the increased benefits. She does not scissor as much (turn her legs in and sometimes cross them) and is overall more flexible.
Anyway, I didn't have much chance to talk to Dr. B today about our recent SDR consult at Children's Hospital of NY so when we see him for our 6 week follow up in Dec., we'll hopefully get to do that. Honestly, up to this point he has not been that helpful to us in our research and exploration of options. My biggest lingering concerns are whether Hannah is strong enough and secondly, where to do the procedure and post-surgery rehab. It would be great if we could get his perspective on this to help us make a decision.
It's unfortunate that Dr. B is not a better resource for us, considering that he is the one most familiar with Hannah's physiology. My feelings about him continue to be ambivalent. I find him to be arrogant, and cavalier. When we showed up today, he looked at Hannah's file and said, "Wow, we haven't seen her since June. So what are we doing today?!" To his credit, I think he is a really smart guy and is probably more on his game than he lets on, but this is my kid here and I'm not usually in the mood for flippancy where major decisions about her health are concerned. He does not inspire confidence.
At the Comfort Zone today, I realized that all of the other patients I saw there were also getting botax treatments. I watched as one mom and dad came out of the procedure room after her daughter had been put to sleep, and they were wiping the tears off their face. I smiled at them, remembering how I felt the first time I saw them put Hannah under. This time it was much easier. It's the new normal. My whole perspective on what's normal has shifted and changed so much since Hannah and Isabelle were born. Each time we have a new experience, it's rattling and intense and then I slowly adjust and recalibrate and move on. I wonder how it will be when she has her first surgery.
I would like to connect at some point with the other parents who bring their kids to the Comfort Zone for botax. Everyone mostly keeps to themselves, respecting one another's privacy, but I think next time I'm going to try to find an opportunity to introduce myself to some of them. I bet we would have a lot to talk about.
This round, Dr. B did 18 injections total, 9 in each leg. I never processed the fact that when kids are under sedation docs tend to do more injections. When she was awake, Hannah only got 6-8. But it makes sense; same amount of botax but spread over a larger area. And I can see the increased benefits. She does not scissor as much (turn her legs in and sometimes cross them) and is overall more flexible.
Anyway, I didn't have much chance to talk to Dr. B today about our recent SDR consult at Children's Hospital of NY so when we see him for our 6 week follow up in Dec., we'll hopefully get to do that. Honestly, up to this point he has not been that helpful to us in our research and exploration of options. My biggest lingering concerns are whether Hannah is strong enough and secondly, where to do the procedure and post-surgery rehab. It would be great if we could get his perspective on this to help us make a decision.
It's unfortunate that Dr. B is not a better resource for us, considering that he is the one most familiar with Hannah's physiology. My feelings about him continue to be ambivalent. I find him to be arrogant, and cavalier. When we showed up today, he looked at Hannah's file and said, "Wow, we haven't seen her since June. So what are we doing today?!" To his credit, I think he is a really smart guy and is probably more on his game than he lets on, but this is my kid here and I'm not usually in the mood for flippancy where major decisions about her health are concerned. He does not inspire confidence.
At the Comfort Zone today, I realized that all of the other patients I saw there were also getting botax treatments. I watched as one mom and dad came out of the procedure room after her daughter had been put to sleep, and they were wiping the tears off their face. I smiled at them, remembering how I felt the first time I saw them put Hannah under. This time it was much easier. It's the new normal. My whole perspective on what's normal has shifted and changed so much since Hannah and Isabelle were born. Each time we have a new experience, it's rattling and intense and then I slowly adjust and recalibrate and move on. I wonder how it will be when she has her first surgery.
I would like to connect at some point with the other parents who bring their kids to the Comfort Zone for botax. Everyone mostly keeps to themselves, respecting one another's privacy, but I think next time I'm going to try to find an opportunity to introduce myself to some of them. I bet we would have a lot to talk about.
Wednesday, October 20, 2010
Not one of those mothers
Just passing on a link that was shared with me via a listserv I belong to, which really resonates with me. Please read when you're able.
Not One of Those Mothers
Not One of Those Mothers
Saturday, October 2, 2010
Guerilla mama
Lately I have been on a one-woman mission to whip my town into shape. First the school, then the library. I stole the title of this post from a resource a friend shared with me, which was actually Guerilla Mum since it was written by a woman from Britain. I like the "mum" bit, it's cute. But I digress...
So school started and with it, our high hopes for another great year of progress on all fronts for both of our girls. But on the first day of class when we realized their preschool was down one classroom aide, who also happened to be the aide we assumed would be acting in part as the paraeducator for Hannah as allotted in her IEP services, we got a little alarmed. After looking into this further, we learned that back in June or July, this decision to have one less adult in the class had been made and yet no one thought to share this with our family or any other family.
This concerned us on many levels, especially the lack of communication with families and the fact that with one less person, we could not see how the preschool staff would be able to meet all of the service needs of the kids in their class. The girls are in an integrated special ed class, with over 50% of the kids attending being on IEPs but the rest of the kids qualifying to participate for some other reason that put them "at risk" like their families being at a certain income level or being a preemie, which is why Isabelle qualifies. So there are a lot of needs in their class beyond Hannah's, and the math just didn't add up.
We asked for a meeting with the director of special ed for our district, the co-director of the preschool and the classroom teacher. We outlined our concerns and asked that they get back to us with specific information about how, in their minds, the math DID add up and they could meet the needs of the current group of kids (and their various IEP services) with the staff they had. We also reminded them of the equipment they were supposed to have in place at the start of the year, also on Hannah's IEP but also not yet in place. We told them how concerned we were that this did not bode well for Hannah's transition to kindergarten, where the stakes were raised greatly since this is a full-day program where Hannah would need support in several different environments and throughout the day. If they could not provide what they promised (and were legally obligated to provide), what would happen next year? We let them know we were not happy or satisfied with the way the year had started and thought these were issues that should have been ironed out way before the start of school.
After the meeting, B and I concurred that it wasn't likely we would hear what we wanted to hear when the director of special ed reported back to us, because it seemed like she was lobbying hard for not adding more staff people (something about "diluting the classroom experience with too many adults blah blah blah...") . I started to look into next steps like mediation and due process, rolling up my sleeves and envisioning a long, protracted battle.
Well, I guess it was premature to put on my boxing gloves because the SPED director spent the next two days after our meeting both taking a hard look at the IEPs of the kids in the class, and also sitting in and observing as well as having an outside consultant observe, coding response time for meeting kids' needs throughout the day. And she came to the same conclusion we had: there was no way, with the staff they had in place, that all of the kids' IEPs could be met with the current configuration of staff. No kidding! It's sad that this was something she had to discover after we demanded it of her, and that she clearly doesn't have a good sense of what's happening in the early ed preschool. But the good news is that she is going to make sure another special ed teacher (not just a paraeducator) is in place for most of the day to ensure those kids that require additional one-on-one assistance are able to get it. We are also going to make sure that Hannah's physical therapist (who acts as a consultant for the school as well) gets in the classroom to provide training to the 1 or 2 people who are most likely to serve in this capacity, again something that should have been done before school started. And finally, we have a specific deadline by which the equipment they promised will be installed or we will follow up on their non-compliance.
So...
Needless to say, it's been kind of intense around here as we've had to rally our energies around fighting the good fight for our girl. But we feel like we're forcing this program to look more closely at its services and raise the bar not just for Hannah but for all of the kids going there. And we're so relieved that we did not have a big battle on our hands.
Now...it's on to the library issue, where the handicapped accessible lift has been malfunctioning on and off since we moved to our town 4 years ago. Grrr....
So school started and with it, our high hopes for another great year of progress on all fronts for both of our girls. But on the first day of class when we realized their preschool was down one classroom aide, who also happened to be the aide we assumed would be acting in part as the paraeducator for Hannah as allotted in her IEP services, we got a little alarmed. After looking into this further, we learned that back in June or July, this decision to have one less adult in the class had been made and yet no one thought to share this with our family or any other family.
This concerned us on many levels, especially the lack of communication with families and the fact that with one less person, we could not see how the preschool staff would be able to meet all of the service needs of the kids in their class. The girls are in an integrated special ed class, with over 50% of the kids attending being on IEPs but the rest of the kids qualifying to participate for some other reason that put them "at risk" like their families being at a certain income level or being a preemie, which is why Isabelle qualifies. So there are a lot of needs in their class beyond Hannah's, and the math just didn't add up.
We asked for a meeting with the director of special ed for our district, the co-director of the preschool and the classroom teacher. We outlined our concerns and asked that they get back to us with specific information about how, in their minds, the math DID add up and they could meet the needs of the current group of kids (and their various IEP services) with the staff they had. We also reminded them of the equipment they were supposed to have in place at the start of the year, also on Hannah's IEP but also not yet in place. We told them how concerned we were that this did not bode well for Hannah's transition to kindergarten, where the stakes were raised greatly since this is a full-day program where Hannah would need support in several different environments and throughout the day. If they could not provide what they promised (and were legally obligated to provide), what would happen next year? We let them know we were not happy or satisfied with the way the year had started and thought these were issues that should have been ironed out way before the start of school.
After the meeting, B and I concurred that it wasn't likely we would hear what we wanted to hear when the director of special ed reported back to us, because it seemed like she was lobbying hard for not adding more staff people (something about "diluting the classroom experience with too many adults blah blah blah...") . I started to look into next steps like mediation and due process, rolling up my sleeves and envisioning a long, protracted battle.
Well, I guess it was premature to put on my boxing gloves because the SPED director spent the next two days after our meeting both taking a hard look at the IEPs of the kids in the class, and also sitting in and observing as well as having an outside consultant observe, coding response time for meeting kids' needs throughout the day. And she came to the same conclusion we had: there was no way, with the staff they had in place, that all of the kids' IEPs could be met with the current configuration of staff. No kidding! It's sad that this was something she had to discover after we demanded it of her, and that she clearly doesn't have a good sense of what's happening in the early ed preschool. But the good news is that she is going to make sure another special ed teacher (not just a paraeducator) is in place for most of the day to ensure those kids that require additional one-on-one assistance are able to get it. We are also going to make sure that Hannah's physical therapist (who acts as a consultant for the school as well) gets in the classroom to provide training to the 1 or 2 people who are most likely to serve in this capacity, again something that should have been done before school started. And finally, we have a specific deadline by which the equipment they promised will be installed or we will follow up on their non-compliance.
So...
Needless to say, it's been kind of intense around here as we've had to rally our energies around fighting the good fight for our girl. But we feel like we're forcing this program to look more closely at its services and raise the bar not just for Hannah but for all of the kids going there. And we're so relieved that we did not have a big battle on our hands.
Now...it's on to the library issue, where the handicapped accessible lift has been malfunctioning on and off since we moved to our town 4 years ago. Grrr....
Tuesday, September 21, 2010
Cure for the blues
When Hannah was really small and we did not yet have a CP diagnosis, but knew about the brain injury and saw her motor delays getting more and more significant, I would often lie in bed at night and cry, wondering what was in store for her and for us, feeling so sad and angry and filled with grief. Then the next day would come and I would be too busy living life with Hannah (and Isabelle) to feel sad.
This is what I always come back to, when I get down and out about raising a child with a disability. The best way to feel better, when I get sad about Hannah's CP, is to spend time with Hannah. Because she is not a sad child. She is full of life, and busy living life. She is motivated, happy, secure, fun, and kooky. She is having a grand old time and if you're right there with her in that place, there isn't a whole lot of room to feel sad.
This is what I always come back to, when I get down and out about raising a child with a disability. The best way to feel better, when I get sad about Hannah's CP, is to spend time with Hannah. Because she is not a sad child. She is full of life, and busy living life. She is motivated, happy, secure, fun, and kooky. She is having a grand old time and if you're right there with her in that place, there isn't a whole lot of room to feel sad.
Friday, September 3, 2010
Botax benies
Hannah had her latest round of botax at the end of July. It seems to take about 2-3 weeks to hit its full potential with her and then she often gets weak and unmotivated for a little bit while she adjusts to the new way her body feels with the reduced spasticity. And then she's starts the steady climb up to the sweet spot where she's feeling loose and strong and energized to do things she would not be as inclined to try otherwise.
We had a rough go this round when Hannah hit her "low" and we think she might also have hit a growth spurt right around the same time. She did not want to move her body much at all and when she gets like that, it's so hard not to feel defeated by her limitations. So when she started to get her energy back, it was like the sun finally came out after a long stretch of rain. She's been on fire! And suddenly I feel like the world is her oyster again, and there's no limit to what she will do. (well, there are limits, but still...)
It continues to fascinate and amaze me, how these site-specific botax injections into the muscles in her legs can totally change the way Hannah's whole body moves and feels. I'm projecting on the feeling part because obviously I have NO IDEA how it feels for her, but from what I can see in how she moves, what she can do with her body, and her behavior, I'm guessing it's a pretty significant improvement. There are so many little things she can do post-botax, like shifting her feet into a better position when tailor-sitting, or sustaining a long-sit for a longer period of time, or opening her legs wide to make "snow angels" when we do our stretches at night.
I'm assuming that if we do SDR, she will see similar gains and the best part is, they will be sustained and will not wear off after a few months. The other benefit I think she'll see, which has me pretty excited about SDR, is the improved energy efficiency she will gain so she'll have better endurance to move her body around. Currently, Hannah weighs only about 25 lbs and she'll be 5 in a few weeks and this is because she uses so much energy to do the things that other people do with little to no effort. Even if she's super motivated to walk, she sometimes peters out before she's really ready to stop, and this is frustrating for her and for us. It would be incredible if she could keep increasing her endurance and not get defeated by her lack of it.
However, one thing I've noticed more with this latest round is trunk weakness: Hannah has been complaining more about getting tired when sitting than I recall her saying in the past. I'm not sure if this is because of the botax or if something else is going on but it does worry me a bit when we think about SDR.
We will be having another SDR consult with a different surgeon/hospital in October so this will definitely be on my list of things to ask about. In the meantime, we're going to ride this post-botax wave for all its worth!
We had a rough go this round when Hannah hit her "low" and we think she might also have hit a growth spurt right around the same time. She did not want to move her body much at all and when she gets like that, it's so hard not to feel defeated by her limitations. So when she started to get her energy back, it was like the sun finally came out after a long stretch of rain. She's been on fire! And suddenly I feel like the world is her oyster again, and there's no limit to what she will do. (well, there are limits, but still...)
It continues to fascinate and amaze me, how these site-specific botax injections into the muscles in her legs can totally change the way Hannah's whole body moves and feels. I'm projecting on the feeling part because obviously I have NO IDEA how it feels for her, but from what I can see in how she moves, what she can do with her body, and her behavior, I'm guessing it's a pretty significant improvement. There are so many little things she can do post-botax, like shifting her feet into a better position when tailor-sitting, or sustaining a long-sit for a longer period of time, or opening her legs wide to make "snow angels" when we do our stretches at night.
I'm assuming that if we do SDR, she will see similar gains and the best part is, they will be sustained and will not wear off after a few months. The other benefit I think she'll see, which has me pretty excited about SDR, is the improved energy efficiency she will gain so she'll have better endurance to move her body around. Currently, Hannah weighs only about 25 lbs and she'll be 5 in a few weeks and this is because she uses so much energy to do the things that other people do with little to no effort. Even if she's super motivated to walk, she sometimes peters out before she's really ready to stop, and this is frustrating for her and for us. It would be incredible if she could keep increasing her endurance and not get defeated by her lack of it.
However, one thing I've noticed more with this latest round is trunk weakness: Hannah has been complaining more about getting tired when sitting than I recall her saying in the past. I'm not sure if this is because of the botax or if something else is going on but it does worry me a bit when we think about SDR.
We will be having another SDR consult with a different surgeon/hospital in October so this will definitely be on my list of things to ask about. In the meantime, we're going to ride this post-botax wave for all its worth!
Thursday, September 2, 2010
My Belle
It's not fair and she handles it gracefully for the most part, but lately she's been giving a few indications that she realizes what's going on and isn't always psyched about it.
It's true that this scenario probably plays out in all families with more than one kid, with kids feeling short-shrifted and parents feeling guilt-laden. But when you have a kid with special needs it seems accentuated that much more (then again, everything is accentuated when you have a kid with special needs!) The impact this has on your family reverberates through every member.
As of late, Isabelle's become pretty sassy with us. She's talking back a lot, being kind of fresh, not listening, occasionally getting physical with Hannah when she gets frustrated with her. None of it is horrible and most of it is typical but I don't want to dismiss it because I do think she's overdue for a little TLC.
I've been trying to find ways to spend more time with Isabelle but also realize that even if I can't schedule this well-thought-out, elaborate "Mommy and Isabelle" adventure, just giving her a bit more attention during a regular day, taking advantage of times when it's just her and I (fleeting though they might be), giving her a chance to try a new skill can all go a long way, I hope, toward repairing some of her feeling of neglect. OK, neglect is probably too harsh a word but you get my drift...
And yet no matter how hard I try, things will always happen to undermine my best efforts. In the past few weeks there have been a number of occasions when I'm out with all 3 kids, or just Isabelle and Hannah, and someone makes a comment about how cute Hannah is, or how they love her glasses or her hair or give her props for how well she's walking in her walker, etc etc. Isabelle is always standing right there and she's a smart kid whose ears work pretty well so I cringe when these moments happen and I want to kick the people who make those comments in the shin. "Thanks dude! There will be payback for that comment later!" I'm sure it's no coincidence that lately Isabelle is very into making sure everything that gets doled out around here (drinks, snacks, special treats) is exactly the same between her and Hannah, and she often accuses me of shorting her.
And the whole "people making comments about Hannah" thing raises so many mixed emotions for me for so many reasons. First, I'm annoyed that people are silly enough to say something to one kid and ignore the other that's standing right there. Look at her face-would you ignore this lovely smile?! Also, while I appreciate that people think Hannah's cute (she is!) I often wish no one said anything at all. Are they overcompensating for their discomfort with her disability by commenting on her appearance? Trying to show how "disability-PC" they are? If she wasn't in a walker and wearing braces, would they fall all over themselves to praise her? I should give people a break and not get riled up about it but we've had a few experiences of people giving Hannah extra attention which have been downright strange (not in a creepy-strange way but in a "that's kind of bizarre that you'd do that" way).
Anyway...all of this is added to my feeling that Miss Belle deserves a little something of her own. As the girls get older and more comfortable being away from us and each other, I think it will be more and more important that they each have something that's their own. It will be hard to see them leave one another behind for other pursuits but I know they'll always have each other. And they each need their moment to shine.
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