Thursday, December 17, 2009

quick quotables

I've been meaning to jot these latest ones down. They aren't really quotes, more like mispronunciations that are super cute.

Isabelle pronounces saddle (like what you put on a horse) the "sad-la." She also calls the reigns "rangs."

Hannah was getting ready to race Isabelle around the house and she said "On your market, get set, go!"

Cute cute cute!

Friday, December 11, 2009

Winter blues

I live in the Northeast and have always loved winter. (Well, mostly. By March the snow does get pretty old.) But I'm a snowboarder and cross country skier and snowshoer and I really appreciate the beauty of a crisp "blue bird day."

Having kids makes winter a little more challenging. They get sick often, it's hard to go potty when they have 15 layers of clothing on and can't move, the snow looks really fun to play in but they get cold pretty quickly, etc etc etc. Add to that a kid with CP and the challenges escalate to new levels. Then throw in an infant and, well, I'm pretty much housebound these days.

The girls are already on their second nasty cold in less than a month, thanks to preschool. Even Sam caught this one-3 months old and he's already getting sick, poor guy. I am SO DONE with seeing crumpled, germ-infested tissues all over the house and can't bear to hear one more person ask me to wipe their nose.

I hope someday I can appreciate the beauty of winter again. In the meantime I'm just going to have to grin and bear it, and wait for spring...

SAMMY




Our little guy is now 3 months old-how is it that 3 months have gone by in the blink of an eye?! To think that almost a year ago, I found out that I was pregnant with our unexpected Christmas miracle baby. Although it's definitely been a challenge, adding another wee one to our family, it has also been such a gift.

First of all, experiencing a full-term pregnancy, birth and baby has been a marvel. I'm so relaxed and laid back about so many things related to Sam, and feel like I can just enjoy him. I love when the girls are napping or playing with B and I have some quality baby time to just snuggle with him, gaze at him while he nurses, make him smile or coo or giggle.

It helps also that Sam is such an easygoing baby. He's been sleeping through the night (7:30-5ish) since he was about 10 weeks old; he was going at least 5-6 hours for a few weeks before that. During the day, he is pretty happy to just hang out with all of us and watch the flurry of activity going on around him, only getting cranky when it's time to eat or sleep. He's easy to settle and easy to put down, which is really priceless because with the girls around, there's no way I could spend the kind of time I used to spend trying to get them to sleep. He found his thumb early on and while I'm sure parents of thumbsuckers will say "be careful what you wish for," I'm pretty psyched because I think it makes it so much easier for him to fall asleep on his own, without me having to stand on my head and go through some long, drawn out routine. I remember with the girls, not only did it take forever and they had to be sound asleep before I could put them down, but the littlest noise would then wake them up and we'd have to start all over again. Sam must just be used to all the chaos because it doesn't seem to phase him when the girls are right in the next room whopping it up while he's sleeping.

So many times as I'm taking care of Sam, I think about how different things are this time around, and how grateful I am to have this experience and to be able to really just be in the moment with it. It's going by way too fast though...and knowing this is the last baby we'll be having makes it especially bittersweet. It's definitely not easy in our house most days, trying to balance the needs of all 3 little ones, but on balance I have to say that I'm so so so happy we have Sam in our lives:)

Sunday, December 6, 2009

Progress comes at a cost


Two weeks ago our wondergirl took a hard fall out of her walker and got 9 stitches in her chin; one of them was internal because it was such a deep cut. It happened right before bedtime: I was nursing Sam in my PJs, B was getting the girls into theirs, and BOOM. We were running around like the proverbial chickens without heads when we realized how deep a cut it was and that it definitely needed a trip to the ER. Thank God for great neighbors, who drove B and Hannah while I stayed home with Isabelle and Sam. Thankfully it's healing up well and she didn't seem too traumatized by the ordeal (and she had quite the story to share on Thanksgiving). A week later, one day after getting the stitches out, Hannah fell again and this time, she knocked a front tooth loose. It hasn't fallen out yet but it's pretty loose. And in the days in between, she's had lots of other, more minor spills.

It's hard to know exactly what's going on with her and hard also not to totally freak out. I think some of it is probably related to a growth spurt: as she grows, Hannah's muscles don't necessarily lengthen along with the rest of her, thus she gets more tight. And she has to learn how to maneuver a bigger, heavier, longer body. So growing can be a challenge. I also think some of it is due to all of this great stuff that she's been doing lately. With this increased mobility there are more situations when Hannah is at risk for falling. Sometimes I think she is just a hair's width away from stepping right out of her walker and standing or walking on her own, because she is barely holding on. But then she loses her balance and falls like a tree. Another challenge of having CP: Hannah's protective responses/reflexes are just not as good as the rest of ours so she is less apt to throw out her hands or fall on her tush when she falls.

Whatever the reasons, all of this falling has me worked up. Every time I hear a bang or crash I go running, thinking Hannah's hurt herself again. I keep telling her to slow down and be careful, and to pay attention to what she's doing. I need to try to find the balance between fostering her independence and keeping her safe, and it's really a struggle. Hannah was on the phone with my mom the other day and my mom asked what happened with her tooth and Hannah said, "I guess I didn't have such a firm grip on my walker." It breaks my heart to hear how matter-of-fact she is about the limits on her mobility, and I want to give her every opportunity to learn and explore and grow with the minimum amount of encumbrances. But I also don't want to take another trip to the ER...

Sunday, November 29, 2009

I'm thankful for progress


It's time for me to note some of Hannah's progress as of late, something I do periodically to make myself feel better as well as also chart where she has been and where she is headed, information that's useful to all of the people who provide her with care.

This seems to be a good time to do it, as recently we just finished up hippotherapy for the winter and her therapist asked us to outline some of the things Hannah has accomplished in the past year and any other changes. So progress has been on my mind. It's also a good time to do it because we just recently celebrated the girls' 4th anniversary of their homecoming from the NICU, on November 16th. Hard to believe that just 4 years ago, we were bringing them home after 54 endless days in the hospital. Equally amazing to think about all that we have gone through since that time, and how far we have come. Finally, I'm in need of a progress report as we go into the holiday season, a time of year that can make me a little melancholy. All the time we spend with the girls' cousins, while really wonderful and special, also remind me of how different Hannah is. Watching her try to keep up with everyone, fielding all of the questions and comments from the kids about Hannah's walker, orthotics, glasses, etc...it all just magnifies what we can sometimes minimize at home in our safe little bubble. So it's important for me to see just how far this little wonder kid has come, because it reminds me that if she has come THIS far in such a short time, just THINK of how far she will continue to go and how much more she will develop and achieve.

So, here it is. A brag list of Hannah's latest and greatest tricks. I probably forgot a few things, but these are the highlights. Go Hannah go!

  • Hannah is just about totally independent in her walker. She uses it at home and in the community. She can get into and out of it on her own. She has pretty good endurance in it as well.
  • She can get into and out of a sitting position on her own, into both a W sit and a straight-leg sit.
  • She can pull up onto furniture and cruise.
  • She can get off the couch or a chair by herself and she can also lower herself from her walker onto a bench or chair if it’s the right height. She can get out of her bed.
  • She can four-point crawl.
  • She can get up the stairs holding one of our hands and holding the railing with the other. We're working on getting her to walk up sideways, holding the railing with both hands, so she can do it independently.
  • She is getting introduced to forearm crutches. We have a way to go with these, but she just figured out-tonight, actually-that she can stand independently in them so hopefully that is a big motivator for her to get more proficient with them.
  • She is potty trained.
  • Her fine motor skills are also really coming along: she can twist a cap on/off, she is pretty close to doing large buttons on her own, she can string small beads, she can write a few letters, she can feed herself using a fork and a spoon, she is getting more precise with her drawing/coloring.
I am excited to see where she will be at this time next year!!!

Monday, November 9, 2009

Some updates


Things have been wild and wooly around here now that we're a family of 5! There has been a lot going on, so many things I've thought, "Oh, I should post about that on my blog" and then the moment is gone, eaten up by a baby needing to be nursed or four year old twins needing attention or dinner needing to be made...

But I have a quick minute now, everyone is napping at the same time unbelievably, so here are a few choice updates:

The girls have been slowly adjusting to life with a new baby in the house. The adjustment has been harder than I thought it would be. I see the merit to having kids very close in age. Although more physically demanding, the emotional/behavioral toll is probably much less intense. The girls are old enough and smart enough to realize just how badly their world has been rocked by Sam's arrival. Hannah's reaction has been to be extra whiny and cry a lot, whereas Isabelle's has been more of defiant/angry behavior. Neither is a whole lot of fun and both have really taxed our parenting strategies. Not to mention trying to work through these behaviors while I'm sleep deprived! I think things are getting better, but it has not been easy. Some comments the girls have made really shed light on what's going on in their minds as they process things:

  • "Is that ANOTHER package for Sam?" as I pick up the mail and in it is, yes, another baby gift for Sam. The only redeeming thing has been that their birthday was not long after he was born, so they had a pretty steady stream of gifts coming in right around the same time as well. But it didn't seem to matter much. Each gift that came for him was noted with a great deal of scrutiny and I'm sure I paid for it later in some kind of bad behavior or another.
  • "I want to be a baby again." This one needs no explanation.
  • "Mommy, please put Sam down. He doesn't need to eat again."
  • "It's really nice to have special time JUST with Mommy. NOT with Isabelle, and NOT with Sam. JUST Mommy and Hannah."
That last comment refers to the fact that we're trying to set aside special time with each of the girls. I recently started to pump so that B or someone else can give Sam a bottle and I can get out without him. Those times when it's just the girls and I are so special and I think they have made a big difference for all of us. And it seems so EASY! I forget what it was like, before I got pregnant. And I do miss those days. It's definitely MUCH harder to get out and about and do things with all 3 of them. In fact, I really don't do much, just me and the 3 kids by ourselves. I haven't figured out all of the logistics and it's just too much effort. There are a few small outings that we can manage, but otherwise we hang around the house or do things in smaller groups. Thankfully the girls are in school 3 mornings a week so that gets them out of the house!

Having Sam has definitely brought up some more grief around Hannah's CP. I find myself thinking, fairly often, how easy it would be if only she were more independently mobile. It's been awhile since I've spun the "what if" wheel and it's really a useless exercise because it only serves to make me sad. But at certain times, when it's so clear that life is that much harder because Hannah has CP, I find myself going down that path again.

I also watch Sam like a hawk, to see if he is developing typically. I see him moving his little arms and legs around, flexing his feet, wiggling his toes, and I think, "Is that all normal? Is there any high tone there?" Earlier on, I was worried he wasn't really making eye contact and had concerns about his vision. But even though I am more worried than I might be if we didn't have the experience we did with the girls, I also feel more relaxed in general about Sam's caretaking. I'm not sure which came first: his mellow attitude or mine. He is definitely a pretty easy baby in temperament but I am also most certainly more relaxed than I ever was with the girls. I don't feel like I need to spend every spare minute stimulating him, positioning him properly, worrying about how much he ate, trying to get him to sleep, etc. It's really nice to be freed from those obsessions.

So things in our family are different, in new and challenging ways. They're also fun. It's really nice to have a mellow baby to snuggle up with and I cherish those quiet times with Sam, when I can really be in baby mode. It's also fun to see how the girls are interacting with him. Despite all of their acting out toward me, they still remain interested in playing with and helping to take care of Sam. And I think as we all continue to adjust to this new life, we'll feel like it was always this way.

Wednesday, October 14, 2009

Sam is here!


I have been very negligent with my blog ever since our little one arrived. I have an entry that I started weeks ago, in an attempt to write his birth story and share it with everyone. But I never seem to find a minute to finish it. So while that's still in the works, here is the short, short version:

Exactly on his due date (at 12:30am, in fact), our newest member to our family arrived: His name is Sam, he was a whopping 10lbs, 2 oz and 22 inches at birth, and this coming Saturday he will be six weeks old! He was born via c-section after I labored for about 8 hours. More on those details when I finally finish that birth story!

We are all adjusting to life as a family of 5, but one thing is for sure: we've all fallen head over heels in love with this little guy. His birth and everything since then have been such a healing process for us, and one we continue to appreciate with amazement: a full term, big, strapping boy. What a different extreme from the one we experienced with our girls. I have so much that I'm processing about all of that, and hope to share it once I can find a minute to write it down. As you can imagine, spare minutes are hard to come by these days!

But in the meantime, all is well and happy and crazy in our family!

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.

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:
  • easy parking and access to the building
  • accessibility to the playground and a bucket swing
It seems like our immediate concerns will definitely be met, which is great news. Plans are already in place to install a pathway of mats to the playground structure so Hannah can wheel her walker up to it, a bucket swing has been purchased, and they're going to order a sand table that she can stand at as opposed to sitting in the sandbox which is more difficult. All good stuff. We also figured out a drop-off time in the morning that should give me unimpeded access to the handicapped parking spot in front of the building and a key for the elevator so we don't have to count on someone being there to unlock and operate it for us. Also good.

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.

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!

Sunday, June 28, 2009

40 weeks

A full term pregnancy should be around 40 weeks. That's a long time. Really long. During that time you go through 3 full seasons and 9 full months. You're pregnant more of the year than you're not. Much more.

Having only made it to 27 weeks last time around, I didn't realize how long 40 weeks can really be. I am so incredibly grateful to be at 30 weeks now and in no way do I want this baby to come any earlier than full term, but I do also feel weary at the thought of being pregnant for another 10 weeks.

Maybe it's just me, but I don't seem to do the pregnancy thing very well. First time around, I figured it was carrying twins that made me so uncomfortable and cranky. This time, I realize it's just that me and being pregnant are a tough combination. The first 17 weeks were riddled with morning sickness, and by the start of the second trimester I was already big as a house so feeling every ache and pain that's supposed to wait until the third trimester to rear its ugly head. Now at 30 weeks I have this mystery pain across my abdomen which is making it next to impossible to be on my feet for any length of time.

I'm cranky about this. I'm okay (relatively speaking) with the hip and back aches, the trouble sleeping, the heartburn. I can push through it and deal with it. But this pain that I'm having now, that's forcing me to sit on my larger than usual backside for long stretches of time, really has me in a funk. It's summer and I want to be out and enjoying it with the girls, especially as this will be our last summer as a family of 4. I also have tons of things I'd like to do around the house to get ready for the baby. And in general, I just don't fare well having to sit around all day.

Today B took the girls strawberry picking and to a strawberry festival afterward. They came home with berry juice smeared across their faces and in their hair and with stories of their day. It made me sad. I missed them all day (you would have thought I would have enjoyed the peacefulness of the quiet house) and wished I was there with them, but there's no way I could have managed it. It stinks!

OK, I'll stop complaining now and just be grateful that as far as the baby goes, everything is going great. I just needed to be cranky today.

Monday, June 8, 2009

Treetop house


Has anyone read the kid's book The Gruffalo? The girls love it. They set up this fort under their easel and kept asking B and I to "join us in our treetop house," a quote directly from the book. Looks like an inviting spot, doesn't it?

Anniversaries and adaptations

Today I'm 27 weeks, 3 days, exactly how far along I was when Hannah and Isabelle were born. To celebrate, I made an unplanned visit to the OB because I'm feeling some pelvic pressure and have been kind of "off" all weekend. I was reassured to learn that things look fine for the most part; my cervix is starting to soften but not dilate or shorten so they're not concerned. I'll go back in next week for another check up but so far, all seems to be well.

The OB was funny. She said she thinks that whenever people have a history of preterm labor, they should automatically be scheduled to come in every week for the few weeks surrounding the gestational age of their last birth. I think this is a great idea! Every time I experience a twinge or ache or cramp, I immediately get anxious. I didn't think it would affect me this much, but it does. It's making it a little hard to enjoy this pregnancy, coupled with the fact that at just shy of 28 weeks, I'm definitely experiencing some of the discomforts of pregnancy: acid reflux, backaches, hard time sleeping, etc. Poor B has pretty much taken over care of the girls when he's around, and while I don't feel like I have the physical energy to be a big contributor around the house, my mind is still intact enough (for the most part!) to make me feel like a total sloth because of it.

And then there's the girls. They are both getting over a lingering cold that escalated into croup and wheezing, and Hannah is just a week out from her second round of botax. So they have both been super whiny, needy and contrary. I think some of it must also be a reaction to my dwindling involvement in their care, so already that lovely parental guilt is kicking in. I can only imagine how it will be when the babe finally does arrive. I guess at least when that happens, I'll have more energy to deal with it. Wait, no I won't. I will be sleep deprived. Right....

But on the positive side, Hannah is forcing our hand on the "how much do we adapt our house to her needs and limitations?" question. We've sort of been coasting along with this, doing some things to make it easier for her to get around but also helping her with other tasks that are challenging for her. Now in her newfound mobility and independence, Hannah is not as interested in all of that assistance. This is such a gift, but it has us hand-wringing as we look around at our 1900s two story home. So we're trying to figure out which are the most important adaptations to make and the ones that we can afford. Today Hannah's OT said something that helped me put it into perspective a little more. She said that even if Hannah can't do the entire potty routine on her own, for instance, if she can get on and off the potty herself, that might give her the sense of competence she's looking for, at least right now. And then we can keep readjusting as she grows and develops and gains more skills.

This all sounds good, I'm just not quite sure how we'll find the time or money to accomplish some of these things, especially as we're also trying to get ready for the baby. I did have a fun idea the other night before falling asleep, that maybe we could plan a "Team Hannah" day at our house and invite a bunch of folks over to help out with a few projects that would otherwise take B a long time to get to, but that with a few extra sets of hands, could be completed in half a day's work. Maybe we'll do that, or something like it. Either way, it's clear that our girl is ready to have more control of her environment, and for that I am so grateful.

Wednesday, May 27, 2009

Botax and hips

Today Hannah had her second round of botax injections, just about 4 months from the first one we did in February. She had 6 injections again in pretty much the same places, with a little more focus on her left calf as she has been doing a lot of intoeing with that left foot. B took her this time which was a mixed blessing. On the one hand, I really hated to send her off without being there with her. On the other hand, it was so hard last time to watch them give her the shots and see her have to deal with that pain so I was glad to be removed from that. B's report was that she did great, just like last time: cried hard while she was being injected, but then was totally fine. Thankfully the whole procedure takes less than 5 minutes.

The physiatrist told B that he reviewed the hip xrays Hannah had done a few weeks ago and said that her left hip is starting to slide out of the socket. This is probably a result of her tight hamstrings and he seemed to indicate that while it wasn't extreme, he wanted to keep an eye on it and hopefully could manage it with more focused botax in that area. I'm bummed because I feel like she's doing so phenomenally in her developmental gains and yet despite that, there are these structural issues that are still unavoidable. Kind of like her left foot dragging. These things don't seem to hold her back from making amazing progress but they are there and need to be dealt with.

Lately I have not been as vigilant about this stuff because she is doing so well, and because I'm starting to become more inwardly focused as I get ready for the baby. Then I feel guilty that I'm slacking off on Hannah's treatment and need to be more on top of what we're doing for her. Sometimes I just want to not worry about it and let her be a kid. And then I hear news like this today and think, "we weren't stretching enough, getting her out of the W-sit more often, working those hamstrings enough..."

Argh.

Monday, May 25, 2009

Fireside chats

The girls really like to tell stories while I videotape them, and then watch themselves after. Here's a chat Isabelle and I had recently.

Dress up queen


I came down to breakfast this morning (it was my turn to sleep in!) and this is what Isabelle was wearing. I love it!

Wednesday, May 20, 2009

the things kids say

Today Isabelle asked at dinner why we decided to have another baby. B gave a really nice answer, along the lines of how wonderful she and Hannah are and that they would make great big sisters so we thought it would be fun to have another. Then Isabelle turned to me and asked, "Why did you decide to have another baby with Daddy? Why didn't you go outside and find someone else to have one with?" I guess she thinks I need to get me a new baby Daddy!

Sunday, May 17, 2009

Independent mobility, take II

About a month ago, I posted a gripe about the fact that Hannah was still so limited in her mobility, even though she was getting around great in her walker. The transitions to/from her walker and from her walker to other places were not happening so she still needed a lot of assistance.

I guess I should post gripes more often because maybe the message goes out to the CP mobility gods and they snap into action, since now I can say that Ms Hannah's mobility has just taken off in the past few weeks. I'm thrilled!

First of all, she is pulling up to and at everything which is huge. She pulls up in her toddler bed (a safety concern but exciting nonetheless), she crawls to and pulls up into her walker, she crawls around the playroom and pulls up to the play table, and so on. It's so great! If she's doing something on the floor I can put her walker near here and leave the room and if she decides she wants to go somewhere else, she can. Her steering and control of the walker have taken off as well. She can get just about anywhere she wants on the first floor of our house, so her need to ask for help to access her toys is greatly reduced.

This is so wonderful to see and also very good timing because the girls will be enrolled in a pre-preschool program in July and then regular preschool in September, so knowing that Hannah is that much more able to get around her environment is very comforting to us.

It's hard to know how much of this is a developmental leap that would have happened anyway and how much is attributed to the botax, which we're going to do another round of in a few weeks. Some of the tightening is coming back in Hannah's hamstrings and adductors but overall she is still doing really well. Her doc feels like we should just keep going with the botax treatments while she's making these developmental strides so that she has every advantage she can to learn these new skills while her tone is reduced. The only place where her tone seems to be having a more dramatic affect which the botax didn't seem to relieve much is the turning in and dragging of her left leg, so this go-around she'll get 2 additional shots around her calf muscles to try to help with that. But I guess this is a muscle group we need to keep an eye on to see if she might require some kind of orthopedic surgery down the line.

We also got a hold of some teeny tiny forearm crutches for Hannah to try, which just happened to come in hot pink so that pretty much sealed the deal for her in terms of her willingness to give them a whirl. This will probably be pretty slow going, though: she's super motivated but I think is still a way from feeling comfortable bearing her weight on them. In addition, with my added bulk I don't feel like I can do all of the bending over that would be required to really practice diligently with her. Hopefully Daddy can do some of it and we'll just take it slowly right now. But it's exciting to think that maybe in the next year or so, hopefully before kindergarten, she will be using them instead of her big bulky walker.

So as always, our girl is on the move and keeping us on her toes!

MUCHAS GRACIAS!


A few weeks late, but I'm checking in to report on the great success of our walk for the March of Dimes: we raised close to $1300 and are so grateful for those who contributed in some way even given the tenuous state of the economy. It's such an important cause, one very close to our heart, and we were buoyed by all of your support and love.

The weather was much better this year than in years past: a little chilly at the start but it warmed up quickly and helped keep us cool throughout the 4 miles. We had the baby jogger with us but both girls were eager to get out and walk so with Hannah in her walker, Isabelle in her meandering preschool stroll and me in my 24-week waddle, we were not breaking any land speed records. In fact, we finished dead last! But we had a great time and I think the girls were more tuned in this year to the meaning behind the walk, which was pretty cool. At one point, Isabelle said something about giving money to the doctors so they could help babies like her and Hannah. So true, so true.

I want to continue this family tradition in years to come as it has become a mainstay on our spring calendar and an important opportunity to stop and reflect on where we've been and where we are now, something I really value and which helps my own healing around the trauma of the girls' birth. And next year, we'll have a new little friend to join us!!!

Thursday, April 30, 2009

Sponsor Me at March for Babies!


The March

In just two more days, our family will be walking for the 4th year in a row to raise money and awareness for the March of Dimes, as well as take time to honor and celebrate our own journey through prematurity with our amazing Hannah and Isabelle.

Have you donated yet? We are still a bit shy of our fundraising goal and every dollar counts. If not, please consider doing so by clicking here. Thank you, and we'll be sure to post pics after the weekend!

22 week s and counting

Hannah and Isabelle were born at 27 weeks, just 5 weeks from where I am now in this pregnancy. As the time gets closer, I find myself getting more anxious about every little cramp and twinge, wondering if it's going to happen again.

My OB assures me that carrying a singleton is an entirely different kettle of fish than being pregnant with twins, and she reminds me that this pregnancy has been, thus far, totally complication-free unlike my pregnancy with the girls (I had a subchorionic hematoma that led to a bad bleed at 8 weeks and continued bleeding and spotting through around 16 weeks or so). She says that while there are no guarantees, she feels pretty confident that I will go to full or near term.

It's hard for me to imagine what that would be like. To wake up one day and say, "I think this is it: I'm going into labor!" and have it be a moment of excitement instead of dread. To have a birth that is joyous and welcome as opposed to traumatic and fraught with fear. To go home a few days later with a warm bundle of baby in my arms instead of an empty and aching heart.

I'm crossing my fingers and toes that things will just keep chugging along and suddenly I'll be 40 weeks and more than ready to meet this new little one. In the meantime, keep cooking little bean! It's not time to come out just yet.

Thursday, April 23, 2009

Belle




It's been awhile since I've done a post about our girl Isabelle. I want to be sure not to neglect her as she is definitely Miss Personality and doing all kinds of growing/learning/changing right along with her sister Hannah.

Isabelle is a funny, quirky kid. One of her quirkier routines is this hording and stuffing/piling kind of thing that she does. She will put a doll in the toy shopping cart and then proceed to pile every piece of play food, all of the items from her toy dinnerware set, other stuffed animals, blankets and baby clothes in, around and on top of the doll. Along those same lines, one day after her nap I found that she'd emptied out all of the bins that hold her toys and stacked them at the end of her bed in 3 rows (see photos below). Another night when the girls were trying to go to sleep, I went up to check on them and Isabelle had piled 5 or 6 blankets on top of Hannah. It's the most curious thing. I don't know where she gets it from and what it means. It's like she's a holdover from the Depression-era mentality of stockpiling all of your goods and food items.

Isabelle seems to have hit a big growth spurt recently and is now a good deal taller than Hannah at least 3 or 4 inches, I'd say. I wonder if I might actually have birthed a child that will be of average height (I'm 5'0" on a good day).

She continues to be the consummate caretaker/nurturer which Hannah plays to the hilt, constantly asking Isabelle to do things for her. I have to remind both of them that it's important to try to do things on your own first and then ask for help after you've given it a good effort. I'm a little worried about the mothering that will go on once the new baby arrives-poor kid!

Isabelle is definitely a rules-oriented, conscientious kid, often making sure I put on my seat belt and pointing out when other kids are doing something that we've told her is not safe. She's big into drawing these days and can pretty well draw inside the lines as well as draw a few letters (B, D, E, I, H). She is a great storyteller and has a really vivid imagination as well as a scarily good memory-today she was recalling a picnic we went to last summer where some other kids were playing croquet. It was the first time she'd met these kids, she hasn't seen them since, and she remembered all of their names. Her memory is better than mine!

I'm so excited to see Isabelle does with preschool next year as she's definitely ready for it and excited about it, albeit a little bit nervous as well. It's been so fun watching Belle change and develop into this little person. Sometimes I get so focused on what Hannah is doing and her motor accomplishments that I don't stop to take the time to acknowledge all of Isabelle's progress as well. But she is rocking and rolling along with the best of them!
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Friday, April 17, 2009

New specs



Hannah finally got her glasses. I have to say, she looks pretty damn cute in them. Now we just have to get her to keep them on!

Thursday, April 16, 2009

Independent mobility

I want this so badly for Hannah. All day long, I watch her struggle to get what she wants and to where she wants. She always needs to rely on someone else to help her. Part of me is eager for her to have this independence for selfish reasons: it's hard for Hannah to play on her own for long periods of time because if she decides she wants a different toy, or would like to move to a different spot, she can't.

We've tried to structure the playroom so that it's easy to cruise from one piece of furniture to another and it's somewhat easy for Hannah to navigate her walker through the space, but it's a lot easier for her to ask for help, which she does regularly.

I don't think Hannah is overly frustrated that this is her situation; it's her reality and she deals with it. But when I see Isabelle zooming around from one activity to the next, my heart squeezes and I feel a wave of sadness and frustration of my own. If only Hannah could do that as well.

It's compounded by the fact that in general, Hannah needs more direction and is less able to play for long periods on her own. She's always been like that; even as an infant she was more needy and fussy, whereas Isabelle was like the buddha baby and would just chill out in her bouncy chair or on a rug on the floor, content to check everything out on her own. I'm sure some of this is just a difference in personality and temperament, although I wonder if it would be made easier if Hannah could control her own environment more. I also wonder how much Hannah's brain injury and resulting CP contributes to this.

Miss H has come so far on the mobility front and yet some days it feels like she has so much farther to go...

Friday, April 3, 2009

Fun in the sun!

As you can see from the pics, we had a great time in Florida last week! Also, check out the super cool playground in the first few pics; it included a ramp-accessible castle in which Hannah wheeled herself all around. It's so nice to encounter such accessible spaces!







Wednesday, April 1, 2009

A Floridian hiatus

The girls and I have been on the road for the past two weeks, hence the reason why I haven't posted in awhile. I'll add pictures of our adventures soon, but for now here's a quick update:

We just got back from spending some time at my parents' and also joining them for one week in Florida. It was amazing to be in the warm sun, swim every day, walk around barefoot and see the ocean. We also got to see a lot of the family on my mom's side, who we don't see enough of. Daddy joined us for the last 4 days of our trip which was really great, especially since we haven't had a family get-away for a long time.

The girls did great on the airplane; they'd been on one before, but they were only 9 months old at the time so this was like a brand new experience for them. Hannah was a little nervous about take-off and landing (so was I!) but Isabelle loved evey single minute of it. The air travel schlep was a little rough: we opted for taking their carseats on the plane so we had a walker, a stroller, two car seats and a variety of carry-ons to manage. But everything worked out well and it was worth the schlep to be in the summery weather after the long winter we've had!

It was really amazing to see how far both girls have come in their swimming abilities. They were like little fish in the pool and the ocean, not afraid at all and trying hard to paddle and float. It was especially gratifying to see the effects of botax combined with the warmth and all of the physical activity Hannah got. She walked a ton, stood independently for 5 whole seconds, did a lot of transitioning into/out of her walker, off the couch, etc. She was all about being on the move and I think it just felt good to her to be able to get around with such ease. I hope we can keep the momentum going as we get back to the cooler weather here at home.

Overall, it was a great trip and I feel recharged and ready for the arrival of spring.

Friday, March 13, 2009

Girl band

Our girls love to rock. The green guitar B brought back from a recent trip to San Diego and his old keyboard are the most popular instruments in our house, but the girls will also play drums, maracas, harmonicas, you name it.

Brighter days ahead

Things are looking up in the Galli-ringo household. First of all, daylight savings has done wonders for my evening mindset. It's so nice to see the sun still shining while I'm getting dinner ready. Now if only it would warm up enough to let the girls stay outside and play while I cook! We did have one afternoon in the 50s when we got outside for awhile before dinner, and it was amazing. I thought, "Oh, yeah, THIS is how it can be!" We were all energized by the change of scenery and fresh air. Being able to play in the yard opens up a whole other room to explore.

Along with the longer days and promise of warmer weather, Miss Hannah has been making some really solid strides lately. It's like she knows that it's time to try out some new tricks because Mama is getting down in the dumps. It always happens like this: I get in a funk that progress is so slow and seems like it will never happen. And then my girl turns up the volume and gets rolling. I'm wondering if, now that we're just over a month past her botax injections, she is experiencing some sort of "peak" in the treatment. Like maybe it's taken her this long to adjust to the new feeling of less tone and rebuild some strength/relearn some skills. Whatever it is, Hannah is doing great!

Specifically, she is pulling up in her crib again. She did this for a short stretch in the summer and then stopped doing it. She still naps in a crib in the guest bedroom (big girl beds with Isabelle for night time) and the other day I went in to check on her and found her standing up, banging on the window. The next day, same thing. She was quite proud of herself! In addition to pulling up, B opened up her walker wheels so they are in full swivel mode; we'd had them limited somewhat so she could have more control. Now that they are in full swivel, Hannah can pretty much get herself all the way around the house without getting stuck, which is such a great thing for her and for those of us that have to "unstick" her regularly. Also, the day that the girls and I went out in the yard to play, Hannah just took off across the grass in her walker, pulling it through the mud and still frozen snowy sections without hesitation. She was so excited to be outside and was moving around much more than she did this time last year. Finally, Hannah's transition skills are coming along really well. She can cruise all along the coffee table and even get from her walker to the table and around to the couch. She can get down off of a chair or a bench almost entirely on her own, she can pull up into her walker and she can walk up the stairs holding onto the railing with one hand and one of our hands with her other. Some of these skills are ones that she had been able to do for a short time but, like pulling up, stopped doing after a time and is now able to do again. Others are new skills.

In the pool (we go swimming in a warm water pool once a week), Hannah took a few steps to me today on her own and she is also putting her face in the water, blowing bubbles and jumping off a step into my arms.

All in all, Hannah is doing some amazing things and it comes at just the right time for my state of mind. I'm always impressed by her motivation and determination. I'm hoping these gains last past when the botax wears off because it is also doing great things for her self-confidence. I'm looking forward to more sunshiney days ahead!

Monday, March 9, 2009

Life is different

I came across this post by another mom of a kiddo with CP whose blog I read somewhat regularly. She asks herself how her life would be different if her daughter didn't have CP. I think of this all the time as well, especially when I'm out with Hannah in a place where there are lots of other kids/parents. Our life is so different than the average family with typically developing kids, in ways that so many people don't realize. In lots of respects, we're like everyone else, trying to figure out what to make for dinner, paying the bills, thinking of fun things to do as a family. But layered over this are the doctor's appointments, therapies to do at home, therapies to do in the community, research into new treatments, equipment to look into buying, adaptations to make around the house...as well as the constant attention out in public, the physical effort to get around in the community, and the mental/emotional effort it takes to stay positive and hopeful and focused on manageable, achievable goals for our kids.

I would give almost anything to wake up one day and for Hannah's CP to be cured. I can see some of the silver linings that have come out of this experience of raising a child with a disability, but I would much rather have learned these lessons an easier way. Despite this, we (and she) have managed to have a pretty good life.

But it IS a different life. And it is hard work.

Monday, March 2, 2009

It's always something

Last week I noticed Hannah's left eye was turning in, independent of her right. I know that between ages 3-4 is when you often see this sign of far-sightedness crop up and I was hoping we'd escape unscathed. Ah, well.

I put in a call to the opthomologist and we're scheduled for an appointment on Wednesday morning. Talking with my brother, who is an optometrist and opthomologist-in-training, glasses are the likely remedy. Not really a big deal in the grand scheme of things, but it's just one more piece of evidence that our girls were born prematurely and Hannah suffered the brunt of the experience.

Sometimes I wish we could just go along on our merry way without these things cropping up. Makes you kind of feel like you're always on the super-vigilant lookout for something else to appear.

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Sunday, March 1, 2009

Big girl beds and other news

There are some exciting things happening in our house. The girls have successfully graduated to toddler beds! The transition was as smooth as can be and so far, we have had no issues either with people falling out of their beds or getting out and coming into our room. I wonder if this is one of the few things that might actually be easier with twins: the girls have each other for company, so maybe they have less of a need to wander around looking for one of us in the night? Whatever the reason, I'm thrilled that it was so seamless! Here are a few pics of them snuggling down for the first night in their new beds.


We've been talking about moving them into their big girl beds for awhile, but they were so content in their cribs that we figured we'd give it more time. That was until we discovered this:

Yep, I'm pregnant! I'm 13 weeks along with this little surprise, due around September 5th. You could have blown me over with a feather when, after my period was late and I decided on a whim to take a test, it came up positive. We conceived the girls using IVF and didn't think it was possible for us to get pregnant on our own. After all, 5 years of unprotected sex and it never happened. We were open to the idea of having another one so we weren't being very careful, but it seemed like such a far flung possibility that we could actually make a baby on our own. Who knew?!

Now that the morning sickness has abated somewhat (it's been MUCH worse this time around than when I was pregnant with the girls, even though we're SURE there's only one in there!) and I'm starting to feel a little better, I'm getting pretty excited. We told the girls a few days ago and now every morning when she wakes up, Isabelle asks me if the baby is still growing inside my belly. I love it.

Early on, I had many moments of feeling overwhelmed and scared about having another baby, mainly how I would juggle taking care of the girls and Hannah's particular needs while also going back to the mind-numbing early days of sleepless nights. And I still have those moments but more and more, I feel confident that it will work itself out. I never could have imagined, when I was home alone with the girls for the first time after we brought them home from the hospital, all of the things I do on my own with them. I take them all over the place and manage just fine, even with Hannah's mobility challenges. And when this little one arrives the girls will be just about to start preschool so that will give me a little time with just the baby to care for. Plus they will be about to turn 4 and are getting more and more independent every day, especially Isabelle but Hannah as well.

I think this will be a great thing for our family. Right now, Isabelle does a lot of nurturing/caretaking of Hannah which is really sweet but also a little worrisome as we want to encourage Hannah's independence as much as possible. And Hannah likes to be taken care of. Once the baby comes, they'll both have someone else to fawn over and I think it will be good for everyone.

All in all, we're excited about the prospect of welcoming a new life into our house. Now we just need to go out and buy a minivan!

Sunday, February 22, 2009

The things people say

Yesterday we were out with the girls and Hannah was doing such a great job with her walker, despite not having napped and being pretty tired. The last of our errands was at this kids' store near us and the girls were having so much fun playing with all of the toys, checking everything out, etc.

As Hannah was making her way around the store, this girl who was probably around 5 saw Hannah and called out to her mom, "Look at that poor girl, Mommy."

I was already tired from all the running around we had done and kind of under the weather. I felt my eyes well up and I just looked at the girl and said, "She's NOT a poor girl." Then I saw the girl's mom looking at me and I added, "She's actually really strong and smart and brave.
Right, Hannah?"

The mom smiled and said something affirmative like, "That's right, she is," sort of both to me and her daughter.

And that was the end of the interaction.

It wasn't that big of a deal but it totally tore me up. I felt really bad for being short with the girl and know that she's just a kid and doesn't know not to say things like that. But at the same time, I wonder how she got the message that pity was the right reaction to someone with a disability? I have to believe it came from her parents, and although I appreciated the mom's smile/nice words, I kind of wanted to say, "Sure, you agree with me now but maybe you should be
the one to nip those comments in the bud and explain to your kid why it's not okay.

Argh, I was just so upset and know it had to do with lots of different things going on with me as well, but it killed me that Hannah might hear someone refer to her as "that poor girl," when she would never think of herself as that way otherwise.

Some days are just hard.

Friday, February 20, 2009

Mix it up

I work at a college with incredible athletic facilities, and lately the girls and I have been taking advantage of them by going to the fieldhouse and using the indoor track. It's often empty or nearly so on weekday mornings, so we bring Hannah's walker and we've also brought the girls' tricycles there, as well as some balls and other toys and we use it as a place to let them get their ya-yas out as well as get some good walking practice for Hannah.

Here are some pics and videos of the girls jumping on the mats, playing soccer with Daddy and running around the track.




Is it enough?

I'm having another one of those phases of wondering if what we do for Hannah is enough. It's probably brought on by the pressure of maximizing the botax window, making sure we don't waste this precious time and do everything we can to strengthen and stretch and build new skills. It might be compounded by the winter blahs-we're stuck inside so often and it's really hard to find creative ways to keep Hannah physically active.

I'm hooked up with a great listserv for parents of kids with CP and the many and varied treatments people are exploring to help their children is really impressive. I know that in our day-to-day activities with Hannah, we are already doing so much in terms of how we handle and position her, encourage her to move in certain ways, foster skills and incorporate stretching and strengthening. But is it enough? We're pretty busy, always running from one activity to the next, most of which involves therapies for Hannah (PT, OT, swimming, hippotherapy). But there's not much time outside of those limited activities to incorporate some of the many other things I feel like we should be doing for her. I have this great book, a resource I turn to often: Teaching Motor Skills to Children with Cerebral Palsy. I love it and yet, it makes me crazy because the pages and pages of stretches and activities you can do to foster different skill building are limitless, and my time is very much limited. I read it and get great ideas as well as a huge pang of guilt that we just won't get around to incorporating very many of those ideas on a regular basis.

There are places where we could take Hannah, intensive "camps" for kids with cerebral palsy where they focus exclusively on these very activites, for hours and weeks at a time. Living in a rural state, nothing like that exists close by. To take advantage of it, we'd have to relocate temporarily and pay and arm and a leg for the tuition. I'm wondering though if it's something to consider, if not right now than maybe next summer? I don't think I want Hannah to spend all of her time working on her motor skills because I also want her to be able to be a kid, and to spend time with her sister and the rest of her family. But for a short time, maybe it would get her past some hurdles and push her into a new developmental area.

On the other hand, maybe she just needs more time. Thinking back to this time last year, Hannah has made great strides. The progress of kids with CP is slow. There are peaks and valleys. Maybe, just doing what we're doing, keeping Hannah engaged in some different therapies, being mindful of maximizing her potential through stretches/strengthening/etc, and also just living an active life, she will develop and progress at just the right rate she is supposed to. But what if she could do much, much more if only we took it to the next level?

For now we've decided to do some preliminary looking around at other intensive options, maybe for this summer, as well as be sure we stay on top of our regular routine. Hopefully for now, that's enough.