Saturday, November 26, 2011

More amazing feats

So we have been wondering when Hannah might move on to using crutches or canes.  We played around with them once since her surgery but without much success.  Before surgery, she could stand with the crutches but not take steps independently.

We saw Hannah's regular physiatrist last week and we showed him how Hannah has been wanting to, and doing a really good job with, walking holding one of my hands.  She liked to do this in the past (pre-SDR) but would lean way into me and need a lot of support and would not be able to walk straight this way for very long.

Now she does this one-handed walking really well and asks to do it a lot.  So the physiatrist saw her walking and said she is definitely ready to start working on the crutches again.  I shared this with her PT, who then made a plan to work on that with Hannah when she came to our house last Tuesday.

The PT's initial plan was to have Hannah practice standing in the crutches independently. She put some blue duct tape down on the floor as a focal point in case they also did some practice steps.  But as soon as Hannah got helped into the crutches, she just took off walking in them! On.her.own!!!

By the time I got there with the video camera, she'd done 3 rounds of walking along the blue line and was starting to get fatigued and distracted so the clip below isn't her best effort, but it is still so exciting!

We didn't do any crutch walking while we were away for Thanksgiving, but Hannah and her PT talked about practicing a lot so she could show her friends at school, and also show family over Christmas.  Tonight before bed, Hannah did a lot more walking around the house.  She has figured out how to right herself when she starts to lose her balance, get stabilized, and then take a few steps.  She could even make a slight turn when needed.  It's pretty amazing.  She still has a long way to go but I can't believe how it just clicked all of a sudden for her, and she is also very motivated and excited about it right now which helps a lot.

We will definitely plan to bring them with us on our travels over Christmas and in the meantime, hopefully I'll take some more video of her progress as it continues.

But for now, here is the clip from Tuesday:

So much to be thankful for...

Monday, November 21, 2011

One grumpy "supermama"


Some time ago, I copied this piece another mom wrote somewhere in the blogosphere, about this notion that other people look to her like she has some kind of super powers because she is raising a child with a disability.  I can't find it right now, but I wish I could.  I'm feeling a little prickly lately about being held up as this example of great, positive parenting in a difficult situation.

I'm prickly because when people say, "I don't know how you do it," I think to myself, "Really? How could you NOT do it, if this were your child?" Or I think, "Is our situation so dire, so pitiful, that you are amazed anyone could possibly handle it without falling apart at the seams?" I get prickly because I feel like I'm not allowed to be less than super;  that if I were a super mama, I would not get frustrated the way I sometimes do, with how slow Hannah moves or how hard some things are for her or what a challenge it can be to travel because she is less independent in places not specifically set up for her.

I guess I am having some pre-holiday, less daylight hours up north grumpiness.  Despite how great Hannah is doing since her surgery, and how much progress we see on a regular basis, she still has CP and we're just plodding along trying to make the best of it, and it is still is, and always will be, hard.


Tuesday, November 1, 2011

Grateful for this smile

Really, how can you have a bad day when you're around this smile?

Clearly, this is a happy kid.  So I guess we're doing something right.  It's good to keep looking at these when some days are a little tough, like today with me feeling a little beat-up after Halloween.  I do have the requisite cute kid in costume pictures to share, and everyone had a bucket full of candy, a good sugar high and an overall happy experience.

But there were parts of the trick or treating experience that I guess I blocked out from last year or didn't tune into, that were heavy on the trick side of things, at least from my perspective.

I forgot how hard it is to navigate the stairs, porches, and crowds of people.  I realized that trying to keep up with friends is not in the cards for us.  I saw that as Hannah gets older, having to be assisted up the stairs to get her treat is not something she's going to be that psyched about, so what do we do then? Last night she said several times, "I want to do it myself, Mommy," and then, "I wish everyone had ramps so I could do it all by myself."  It was a long night of walking, and lots of times Hannah had to be carried, piggy-backed or put in the stroller with Sam because she couldn't keep up.

If you were to ask Hannah if she had fun, she would give you an unequivocal "yes."  No doubt about it.  But do these little frustrations start to chip away at that tremendous sense of self? I don't know.  I hope not, but it's definitely chipping away at mine.

We did think of a new plan for next year, that will make it maybe a little bit easier.  First, we'll go on our own and see friends as we go, but not worry about keeping up with anyone else.  Second, we'll scope out a good route in advance, one that has a large concentration of houses in a small area, and maybe even some where there are not so many stairs to climb.  Third, I might even put out a plea somehow to ask folks to bring the candy down to the bottom step if possible, at least in the early evening when the little ones are out.  It's hard for a lot of kids to climb up and get their treat, maybe this would make it easier for everyone else?

The last one is a little more challenging, we'll see if I follow through on that.  I realize I can't go around changing every holiday so it's more user-friendly for Hannah.  But as her mama, I do want to try to level the playing field whenever I can. 

Anyway, I always like having "a plan," so that makes me feel a little better.  But that million dollar smile, that helps a whole lot also.

Monday, October 10, 2011

A million little pieces

No, not the semi-autobiographical novel by James Frey, but the million little pieces, things about Hannah that B and I know inside and out because she is our girl, and she's been in our world for six years, and it's second nature to us to see when she's slouching and sneak behind her and scootch her tush back, or put some peanuts next to her while she's coloring if it's been awhile since she last ate, or encourage her to "get a good base of support" when she's washing her hands at the bathroom sink.

How do you teach someone about all of those things so they can take over this role for you for 7 hours a day, 5 days a week?  How do you let go of the control you've had over managing this and trust that the new adults in Hannah's life will catch on quickly, or the learning curve won't be so steep that Hannah will be hurt physically, emotionally, socially or academically until everyone gets it?  How do you try to calmly advocate for her when really you want to charge in like a mama bear, claws out, ready to swipe at anyone who suggests what they are offering is enough, when really it is a pittance of services to begin with, and what you're asking for is an increase to a somewhat acceptable but still not ideal amount?

This is the dance I've been doing since we sent the girls off to kindergarten.  It's a big leap of faith for all parents, to give up the last vestiges of control over the bulk of your kid's day.  Even in the best of situations, kids don't always get what they need at school and some degree of muddling through and figuring out is commonplace.  And learning how to support a bright, motivated, "very aware of her disability and wanting to be like everyone else" kid when her body does not always allow her to participate like everyone else or be as independent as everyone else is a tall order.

Thankfully the teaching staff-Hannah's teacher, teaching assistant and individual assistant are all compassionate and want to do right by Hannah and by us.  Also gratefully, we have an amazing special ed case worker who is on our side too.  But it's a work in progress and while we're honing in on the first few hundred little pieces, there are still a pile more that need to be sorted through.

Wednesday, October 5, 2011

Almost 4 months later...

Sorry to all who diligently followed Hannah's SDR journey only to be left hanging once we got home.  Life got busy, in a good way, but I got buried under it all and am still digging out from laundry I think! But here we are, it's October and next week, the 13th, it will be 4 months since Hannah had her surgery.  Since we've been home, people have asked how it all went, how we made it through that long stretch away from home and in rehab, and for me, it feels like it happened in the blink of an eye and we barely missed a beat out of our regular programming.

Sure, easy to say now that I'm not typing from the parents' lounge while I wait for Hannah to finish therapy so we can go have another hospital meal.  But it really is amazing to me, and I think this is in large part because we went through this experience with small kids, how something that seemed so monumental before we went through it, and was pretty all-consuming while we were in it, is now a fading memory.  I guess it just can't compete with the energy of our day-to-day existence, keeping up with all 3 kids who are growing and thriving and always on the move.

It's clear that the experience shaped all of us in many ways.  Hannah most obviously and most dramatically, but also Isabelle and Sam, and even Brendan and I.  I'll surely wax poetic on some of that another time.  But for those who want to know the skinny on how Hannah is doing now, 4 months out, here are a few highlights:

When we left the hospital, Hannah was in her wheelchair 75-80% of the day.  Now that we're home, it's about 25% of the time.  She is gaining strength and endurance every day.  Some days, she is on fire, like when we went to a friend's farm and she cruised through the bumpy, tractor-rutted roads and high grass with her walker.  Other days, especially after a full day at school, she is more tired out and needs to ride more than walk.  She can do things now that she could not do before, like crawl upstairs, get herself completely dressed on her own, take off her shoes and socks.  She is working on standing independently, and can go about 5-10 very controlled seconds before losing her balance.  We haven't been in the water much lately, but on her bike-she just got a bigger adaptive bike-she is able to do lots of rotations on her own.  She's getting interested in trying her crutches again which is great, as we hadn't been doing much with them before surgery and decided not to push it too much until she was ready, and it seems like she's getting there.

Hannah is also developing some pretty awesome trunk control.  Her tall kneels are looking great, and we go horseback riding once a week and she is riding by herself, holding the reigns, and staying up nice and tall in the saddle which is a huge improvement from when we rode last year.  She and Isabelle both ride and are getting more of a horseback riding lesson kind of experience as opposed to a therapeutic riding experience which is really nice.  Hannah gets some great benefits therapeutically but it is framed in a "super cool and fun activity" kind of way, and something Isabelle can do also which she loves.  They-and Sam-are becoming barn rats and they idolize the "big girls" who come in to ride after them, some of whom have their own horses.  So glad they like this sport but not psyched about the potential for serious cash expenditures!

So in many ways, Hannah is able to do things with her body that she could not do at all before surgery, nor did I think she ever would be able to do, because of her high tone.  Now that the tone has been removed, she has great potential but the big piece that we have to keep working hard at is building up her strength, and that is taking some time.  Again, she has come so far since we left NJ at the end of July and in many ways, is back to where she was before.  But she does seem to fatigue more easily, and now that she's in full-day kindergarten and then doing therapy 3x/week after school, the times when she is at home seem to be times when she's totally pooped.  More on what's going on at school in another post, but the good news is that she is, after a long and protracted battle, getting her needs met which is a huge relief.

So in a nutshell: no regrets AT ALL about doing SDR for Hannah and for us, the inpatient rehab piece after was a critical part of making this a good experience for our family, because it ensured she would get what she needed in that most intense post-surgery time period, and that when we did get her home, she was in a better place to be able to integrate back into our family routine.  And...while we are seeing some really impressive gains, we are still seeing a lot of fatigue that mutes those gains sometimes, so I look forward to the times when she is having a good burst of energy and can really show us what she's capable of now.  I also look forward to Hannah building up some of that endurance again, bit by bit.  She sure is working hard at it, no doubt about that!

Friday, August 5, 2011

The sweetness of home

Walking into our house last Friday night, my first thought was, "Wow, our place is pretty big!"  Well  yeah, compared to the window spot in room 202B at Children's Specialized, it sure is.  To be able to walk around and breathe the freedom of being in my own space was amazing.  The kids were pretty psyched also.  Sam ran around yelling, "Toys! Toys!"  Isabelle kept saying, "I'm so much bigger than when I left! Look at how my feet touch the ground when I'm in my chair!"  And when Hannah walked up the ramp to our house in her walker, she giggled the whole way.

Ah, the sweetness of home.

Thursday, July 28, 2011

We're outta here!

Well, it's been a whirlwind since I last wrote.  We have been busy getting our girl ready for her discharge which is finally upon us-tomorrow we head back home after being away for 7 weeks, 6 of which have been at the inpatient rehab facility.  I can't believe that we undertook this journey 7 weeks ago.  So much thinking, worrying about and planning for, and now we're on the other side. 

At the end of last week, Hannah had a "walking party" to celebrate her ability to walk in her walker again.  This was inspired by two other patients who had celebrations to acknowledge their hard work-one boy stood in his prosthetic legs for the first time, and another stood with hip/leg braces after a spinal cord injury.  Both events were very emotional and inspiring.  Of course Hannah saw all of this and wanted her own "standing party," but therapist told her it would be a walking party, since her goal for discharge was to be able to walk independently in her walker again.

So over the course of the week Hannah practiced walking in short bursts around the gym with some minimal assistance and spotting.  The goal is to get her knee fully extended with each step on her own without cueing.  She is now wearing her twisty cables again to help this happen without scissoring.  Although the tone that caused her to scissor her legs in the past is now gone, the lack of strength in the opposing muscle group and the muscle memory of that scissor pattern remains, so the twisty cables counteract that.

While Hannah was busy practicing her walking and continuing to strengthen other parts of her body as well, she was making up invitations, baking muffins and painting a big sign to put in the gym on the day of her party.  My mom, sister, Sam and Isabelle all came, and Brendan and I were both there.  She handed out invitations to all of her friends in the hospital and requested music to walk to.  We started to worry that the pressure would be too much so we reassured her that whatever she did, it would be great and that Laura (her PT) would be right there to help her.  When the big moment came, and everyone was cheering and clapping and the music was blasting, Hannah did awesome! She walked down a straight away in the gym-a runway with balloons from Grammie set up at the finish line-with very little assistance and then she turned around and came back the other way.  It was at the end of a busy day (including pool therapy) and she was distracted by all of the attention, but she still did wonderfully and was pretty proud of herself (as we all were!)  She still has quite a long way to go before she is cruising around like she was before, but I know she'll get there. 

So now that Miss H is beginning to walk around in her walker again, it's all about getting her strength and endurance up for longer distances while maintaining that beautiful gait pattern.  Like I said, she still has a long way to go.  We saw her neurosurgeon today for the first time since the surgery and he asked where I thought she was compared to her previous function.  I said maybe 50%.  He reminded me to keep the long view, and that when we came back in 6 months, she would be a different kid.  So, since we have been doing the inpatient rehab thing for so long, and it is really time for our family to be together at home again, we are leaving this place that took such good care of our girl and excited to live life again.

Many of the kids that came right around the time Hannah came have already left or are also leaving in the next day or so.  There are many kids here now that we don't know; a whole new wave of "newbies" is coming in, and we're the veterans who are on our way out the door.  You can see the kids who've been here awhile, that they have progressed as Hannah has, one step at a time, and are ready to move on to the next phase.  They are using walkers or walking on their own more and more, wearing their prosthetic limbs all the time, sitting in regular chairs instead of in wheelchairs.  Like caterpillars shedding their cocoons, little by little they're emerging from the protective rehab shell and donning their "street selves." For some of them, they're going home completely different from the way they were before they left.  Others are healed and back to the same ole same ole.  I feel for the kids that have to get used to life on the "outside" in a whole new way.  This place is safe and nurturing.  They are known for who they are, not the fact that they have a steel halo screwed into their skull or are missing limbs or need a trach to breathe.  But at home, it will be different for them and for their families.  This will be a transition for us as well, but it's one we're used to so I'm hoping it will be a little easier to bear.

Everyone has been asking Hannah what she will do first when she gets home.  "Play with my toys, of course," she says.  And then she says, "The county fair will be happening when I get home and I can't wait to go!"  I'm so glad we still have some summer left when we get back-we'll have to cram in all the typical Vermont summer things to do before the cold returns.

So here are some things that I am looking forward to when we get home:

-Having all the windows open and being in the fresh, non air conditioned air
-Eating at my table with food cooked with an ample amount of seasoning and that is not mooched off Hannah's hospital tray
-Sleeping in my own bed next to my husband, on my mattress which is not perfect, but is a huge step up from the hospital daybed for parents and the bed that Hannah sleeps in, which is like 2" thick, super mushy and inflates and deflates all night long (to alleviate pressure sores, I guess)
-Not having to tell anyone when Hannah last went to the bathroom, whether it was #1 or #2, and what she ate
-Not having to ask someone for a pass to go somewhere with my kid
-Having all of my kids and my husband with me under one roof

All in all, this whole experience has been hard for sure, but not insurmountable.  We could not have done it without all of the support we received from people near and far, most especially my parents who took care of Sam and Isabelle this entire time, giving up their relatively quiet and calm existence for 7 weeks, running around after Sam while he tormented Aunt Gina's dog and answering Isabelle's millions of questions.  We all did a lot of learning and growing this summer, and it will be interesting to see how we come together again as a family.  Thank you to everyone who sent cards, gifts, e-mails, calls of support...I do have a thank you list going and hope to chip away at it little by little, but please know that your thoughtfulness was so appreciated and helped make the time go by much more quickly.

And now it's back to the business of living life...