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.

Thursday, July 23, 2009

quick accessibility update

We wrote a letter to the principal and head of special ed at Hannah and Isabelle's school, outlining all of our concerns about accessibility in the building and on the playground. I got a call yesterday from the assistant principal about setting up a meeting with him, the principal and the director of special ed. He seemed very interested in and eager to work with us so I'm crossing fingers that we'll be able to find some workable solutions to these issues that will benefit not just Hannah, but other kids in the future as well as parents, grandparents, other teachers, etc. that might need things to be more accessible.

So I guess it pays to be a squeaky wheel!

I'll post more as we work through this...

Sunday, July 19, 2009

The Ramp

We had planned to host a "Team Hannah Day": invites went out, people signed up, B was deep in the design and materials stage. Then a friend of mine, doing a little research for me to see if anyone would donate or help out with the cost of materials, learned that a local Lions Club would actually come out and build and install the ramp for free!

Given that time and money is limited around here, we were really thrilled and within two weeks of making contact with them, 3 members of the Club came out and outfitted our back deck with a schnazzy new ramp. Hannah is thrilled (so is Isabelle, and also Maggie, our arthritic old dog!) and life is good.

Thank you, Lions Club!!!

(In these pictures, the ramp was not totally complete which is why the railings aren't all up. Don't worry, the finished product is up to code!)

Wednesday, July 8, 2009

School DAZE

We just finished week two of the girls' summer preschool program and I'm still having a hard time with it. My heart squeezes tight each time I drop them off and I'm always eager to pick them back up again 2.5 hours later. It's definitely compounded by pregnancy hormones (almost 32 weeks now!) and being physically uncomfortable as it takes a lot work to get Hannah into and out of the building. And then added on top of that is the magnitude of this new phase we're entering with Hannah being out and about in the world.

From the first time that I managed to get both girls out by myself when they were infants, to the first time I took Hannah somewhere with her walker, each moment was a transition as I had to figure out how to navigate a world bigger than our house, where things are easy for Hannah to access, where no one stares or makes comments, where we feel comfortable. In our house, Hannah gets around like a champ, practically running around in her walker, pulling up everywhere, singing and talking and yelling and being a "typical" preschooler. When we go out, she is often quiet and tentative and slow. She gets distracted easily by sights and sounds around her and tires out quickly. When we're at home it's easy to think that Hannah is only midly impaired by her CP. But when we're out, I realize the true extent of her limits. She has come so far in her development, but there is still so much she can't do.

So now she's in school, and while the special ed teacher has been a great advocate for Hannah and is truly motivated to make it a comfortable and accessible place for her, there are things that are just not working as they should. Getting into and out of the building is a major struggle. Once in the classroom, it's becoming clear that Hannah needs more one-on-one assistance than the teacher originally thought, so that she is not left behind and is able to get where she wants to go. Hannah is also not eating her snack each day because she's so distracted by everything going on around her, so she is totally pooped by the time they go to the playground, or else she sits inside with the teacher trying to finish a snack and then by the time they get out to the playground, it's time for me to pick the girls up. (Not to mention that the walk from the classroom to the playground is very long and that alone takes a great deal of her effort).

I'm trying to set up a meeting with the teacher after this summer session is done, so we can regroup and talk about what can be done differently this Fall, when preschool officially begins. I also need to set up a meeting with the principal to talk about the problems we're having with access to the building, the inaccessibility of the playground, the modifications that should be done in the bathroom, etc. etc. etc.

All of this is adding a layer to the already emotional aspects of sending your kids off to school for the first time and it's been hard. I want to go into these meetings clear-headed and not defensive, but I feel emotionally charged and overwhelmed by all that I think needs to be done. Sigh...

Thursday, July 2, 2009

Reading lessons

Isabelle is a real animal lover. Hannah, she's interested in them from afar but Isabelle wants to get right up close and love all animals to pieces. So Maggie, our very old mutt, is often the object of her affections which sadly for Isabelle, are not usually returned. Maggie sort of tolerates the girls and if they get too much in her space she'll show them some teeth and give them a growl. But most of the time they just co-exist. Isabelle is not to be deterred, however. Here she is reading a book about dogs to Maggie. Can't you tell how much Maggie loves it?!

School days

This week, Hannah and Isabelle started school. I know, it's summer and most kids are just starting summer vacation. But the early education program that sponsors the preschool they're going to in the Fall has a summer "mini preschool" so we signed the girls up so that come Fall, they are a little more adjusted to the idea of going. It's only two days a week, 2.5 hours a day, for 4 weeks so it's not that intense but it's their first time doing something like this so it's been pretty exciting around here! It's a program that targets kids who have identified special needs or are at-risk in some way, the "at-risk" part being pretty loose. Isabelle qualifies under that definition as well, just because she was born so premature even though she has no identified needs. So there are 12 kids in the class and some have some pretty obvious needs (although none are physical like Hannah's) where others seem like they are developing typically. We thought long and hard about where to send the girls and this seemed like the right place for ensuring Hannah would get what she needs but that both girls would also be stimulated, challenged and have a good experience.

So anyway...we've been talking about school for awhile, they got new backpacks, and we even visited the classroom last week with Hannah's PT to check out the space and also give the girls a chance to see what it was like before going "for real." Hannah seemed excited by the idea but every time I mentioned it to Isabelle, she said she didn't want to go and wanted to stay home with me. We talked a lot about what she could do if she got sad or scared, and that it's okay to feel sad or scared to start new things but that we were pretty confident she would really like it. Blah blah parent psychobabble blah blah...on and on we went and she was SO not convinced. Although she did really enjoy herself when we went there last week (and so did Hannah).

So Tuesday morning the big day came and both girls were pretty excited about it as we got ready, I packed their backpacks, and we headed out. You can see all the smiles in the pictures before we left: looks like two happy kids, right? Once we got to the classroom it was bedlam: there was one boy who was hysterical after his mom left, lots of other kids and parents milling around trying to get settled, and generally chaos was reigning. The big spacious classroom felt really small all of a sudden. I helped the girls get their snacks into a cubby and wash their hands and then I told them I was going to leave.

Isabelle grabbed hold of me and started crying pretty hard, which made me well up with tears. I was trying VERY ADMIRABLY not to lose it in front of her (why didn't it occur to me before that moment that this would be an emotional thing for me as well?!) and finally managed to peel her off of me, hand her to a teacher, and race out the room. I barely said goodbye to Hannah.

I was hysterical the whole drive home and sat in my driveway for awhile, sobbing while I called B at work and told him, "They're not ready for school yet! It's too soon!" I then left an equally pathetic message on my parents' phone. Finally after composing myself, I decided I would give it ten minutes and then call to see if Isabelle was still crying. Thankfully, when I called the teacher I spoke with said that she stopped quickly, probably before I even left the building. So I guess she handled it a LOT better than me!

The time flew by while they were gone: I sort of stood around trying to figure out what to do with myself and then it was time to pick them up. They were on the playground when I got there so I got to observe them before they saw me, which was kind of cool but a little hard because Hannah was just kind of standing in her walker, watching everyone, and Isabelle was roaming around on her own.

I spoke with the teacher and it turned out that my girls took so long to eat their snack, as they were too busy chatting with themselves and the teachers, that they didn't get to the playground until it was almost time to leave. Then it took Hannah a long time to navigate the long hallway out to the door, and then make her way across the grass to the play structure. By the time she did all of that, I was there.

Both girls were totally exhausted and cranky when I got them home although neither of them napped well that day and they both fell asleep late that night. I think they must have been overtired/overstimulated. The next day was a little easier; Isabelle still cried but stopped before I even left the classroom, I didn't cry at all, and when I picked them up later that morning they were both on the playground and engaged in different activities. They also seemed in better spirits when we got home although they were still pretty pooped, and they both took mega-naps and slept well that night.

Phew! We made it through our first week of school and I think overall it's going to be a good experience for the girls as well as give me a much-needed break during the hardest part of my pregnancy. It's still really hard, though: I worry mostly about Hannah and how she's making her way around the classroom, if she's getting enough one-on-one assistance to get from point A to point B so that she can participate along with everyone else, if she is comfortable speaking up for what she needs, and how the classroom set up is working out for her. Her main teacher is a woman that has been coming to our house once a week for a year now and knows Hannah and us quite well; I think she's great and has spent a lot of time thinking about ways to make the classroom as user-friendly for Hannah as possible. But still; I'm not there to see it all and be on top of it like I am at home and giving up that control is definitely tough. Although it's a lot easier now than I think it would have been last year, since Hannah has gotten so mobile and independent. And I also think being pregnant has made me obsess a little less than I might, as my mind is in other places as well.

One thing we have realized is that there is quite a bit of work to do to make the school and playground facilities more accessible for Hannah and kids like her. Getting into the building is a real challenge, and the playground itself is not accessible at all. Our next goal is to get more versed on ADA rules/regulations and set up a meeting with the principal to talk about long-range plans/goals and see what can be done. The preschool the girls are going to is housed in a classroom in the elementary school so this is a place where they will be for many years, and I want it to be a welcoming place for all kids and parents with disabilities so we're looking for a big picture plan, not just a few small modifications here and there. I'm anxious about taking on this charge but hopeful that we can accomplish good things without much conflict, even in this time of super-tight budgets and purse strings.

It always adds an extra layer of thinking and planning when you have a child with special needs. You can't just show up at school and assume everything will meet your child's needs. Sigh...

But the good news is that as far as the girls are concerned, their first two days were great and they even asked today if they could go back again soon!