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...

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.

Ba-humbug.

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.

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.

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!

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.

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...

The freedom of water

I wish we had the money to buy a heated walk-in pool that started out shallow and got progressively deeper.  And that was indoors, but you could somehow make it outdoors in the summer.  Because I think we would live in it.  Or at least Hannah would.

To see her in the water is to see a kid who can walk, swim, float, kick...just like everyone else.  The freedom of the water is so liberating for her.  On land, things are a lot harder.  She will get there, I think she will.  But it will take time and a lot of work.


But to have the immediate gratification of being able to do this in the water is such a gift:

and this:

Before surgery, Hannah had a very hard time keeping her head above the water so independent swimming (even with floatation devices) was not easy for her.  We tried a lot of different things but had not really found the perfect option.  Now, because she can keep her head above water so well, can kick her legs independently of one another, and can keep herself upright or back float when she wants, she can swim with almost anything, as you can see! I also love how she is just hanging out, standing there with her water wings on, totally free.  The rec therapist with her today had tears in her eyes and said Hannah made her day; she could not believe how far she has come from the last time they swam together two weeks ago.  She also said she thinks Hannah is definitely a candidate for being able to learn to swim without any floatation devices in the future.  Horray!

So if we could just relocate our house to an underwater castle, all would be well in the world...

Unexpected revelations

Hannah has become a real social butterfly while at rehab.  It's a trip to see her hanging out with her wheelchair posse, laughing and waving at everyone and telling me to "go over there, Mommy, so I can be with my friends." When Isabelle comes to visit, it's interesting to see how they interact and that Isabelle is the odd man out.  In fact, pretty much anyone who is not in a wheelchair or stander, with a trach or a g-tube, prosthetic limbs or braces is an outsider.  This is the land of misfits, and there is power in numbers.  I don't mean to say that Hannah, or any other of the amazing kids here are less than anyone else by calling them "misfits."  But for Hannah at least, it's clear that while she is a well-adjusted and happy kid outside of the hospital, she has also thrived socially by having the opportunity to hang with other kids like her, who have struggles fitting into the able-bodied world we live in. 

This is a revelation for me because I'm a firm believer in inclusion, in finding ways to adapt our community so that Hannah can participate along with her peers.  I don't want her to always be hanging out in "disability world."  But yet, she fits in here in a way that she doesn't at home.  When we have play dates at home, she often hangs out with me and the other mom while Isabelle and friend are racing around the yard, because she can't keep up.  If the activity is more sedentary she's part of the action, but otherwise she is a bystander or will chose to do her own thing.  Here, she can wheel herself around like the best of them, and no one is going anywhere too fast.  She can keep up, she is doing big things, and she can relate to these kids on a level that is beyond her experience with the other kids she knows at home.

I hope that once we get home and she's trying to get around like the other kids again, she is not too frustrated.  It will also be interesting to see how her relationship with Isabelle evolves after this separation.  While they've been apart and Isabelle has been at Grammie and Papa's, she has been growing and changing as well. I think it will take time for all of us to figure out our groove when we get home, all of us different people from the ones that left Vermont a month ago.

The yin/yang of rhizotomy

So I was going through some video clips to show Hannah's current PT the way she moved and walked before surgery.  We purposely took video the day before the procedure, when we were at a playground near my brother's house, because we wanted to be able to look back and see the changes.  I haven't looked at these until today, and honestly, they were hard to watch.

In so many ways, Hannah's body is "new and improved" for lack of a better phrase.  In previous posts I've listed all the benefits we have seen, and they are real and they will help her in many ways.  But the problem with rhizotomy is that before the surgery, there's no way to know how much a kid is relying on high tone to move around, and how much weakness is under that high tone.  Some tone is good; taking away too much, on a kid with a lot of underlying weakness, means they will lose a lot of function and have big hurdles to overcome to try to regain it.

We hoped this was the right thing for Hannah but it was a leap of faith.  We worked to get her as strong as we could before the surgery, we did our research, and we looked at the other factors involved in choosing to do this now.

I still maintain that this was the right thing to do.  We knew that a regression in function was inevitable, and that true benefits of the surgery cannot be accurately measured until 6 months to a year post-op, and they can even continue beyond that, if kids are continuing to build strength and endurance.

But seeing Hannah move around in these clips makes me sad.  I better appreciate her love/hate with her walker, her frustration with how hard this work is, and her emotional ups and downs.  I'm actually amazed, after seeing this, that she is not more frustrated.  She did say to me the other day, when I asked her what was hard for her about using her walker, "I just want it to be the way it was before the operation."  Ouch.

This is where the true work lies.  The patience and motivation and stick-to-itness that most of us would have a hard time sustaining.  If Hannah can keep having some small successes, I hope that she will stay motivated and see the light at the end of the tunnel.  I worry that being in the hospital for too long will sap some of that, and take some of her fighting spirit.

Thankfully, earlier this week we had a big, big success in the pool:

I almost fell off my chair when I looked up to see Hannah walking around the pool. By herself.  I'ts not that clear in the clip, but her PT does not have her hands on her at all except for a moment toward the end.  Before the surgery, she took about 5 quick steps in the pool once with her therapist from home.  The other day, she did this over and over again-she was so stinking proud of herself-and she had such great control of her body.  It was amazing.

So of course, one wonders if this ability to walk in the water translates into the ability to walk on land some day.  Well, her PT tried to get Hannah to walk independently in more shallow water and she wasn't able to do it.  The bouyancy of the water and the support it provided her was enough for her to be able to do it on her own when the water was chest-high.  Her PT said if we could get her walking in water at about hip level or below, she had great potential for independent walking.  I know that the next time Hannah is back in the pool, this is all she is going to want to do.  Hopefully we can practice doing it in more shallow water and see how she does.  But either way, it was amazing to see her do it in one way or another, and her pride in herself was palpable.  This is definitely not something she could do before the surgery, which I was clear to point out to Hannah (and myself) to remind us both why we did this, for those other times when we need reminding...

Progress

Our girl, she's doing big things and we're seeing big results.  But it takes time and patience and hard, hard work.  She is downright whopped at the end of the day but still her spirits are up (most of the time) and she literally sings her way thru therapy to the delight of all of her therapists.  Yesterday she sang out, "OK, this is really hard noooooowwww, please it's really hard noooowwww...." She's a trip, Miss H.


We got here 3 weeks ago today.  Initially a lot of time was spent on core strength, using therapy balls, prone activities, sitting and reaching with her arms.  When we first got here, Hannah could stand with support for less than a minute before her legs buckled under her.  Little by little, she has progressed to working on side-stepping, lots of sit-to-stand activities to build up her quads, and some walking in the parallel bars.  In OT she continues to do upper body work, trunk control on therapy balls and on the mats, motor skills using a slant board and we're even incorporating some school-based stuff which I'm thrilled about.  I told her OT how Hannah's verbal and comprehension skills are top-notch but she struggles a bit with recreating on paper an image she sees (interlocking circles for example) so the OT is doing "schoolwork" with Hannah while also working on sitting posture, etc.

We've done a little bit of walking in the parallel bars and even tried a "lite-gait walker" which used suspension straps to bear some of the weight for Hannah so she could just practice taking steps.  She had some adjustments made to her orthotics to provide more support since her quads are pretty weak and this has helped with her standing.  Now 3 weeks in, she can stand to wash her hands and brush her teeth, side-step during therapy, and is now today she got in her walker again for the first real attempt since before surgery.

That was tough; she was pretty hesitant about it, nervous I think, frustrated that this thing she did so effortlessly before is now very different because her body is so different, and it's harder.  She did not want to walk and she complained that it tired her out.  I made a deal with her that if we do lots of good walking she can pick out an art kit at her new favorite store, Target.  On her second attempt later that session, this time with her OT and not her PT, she was a little more compliant/interested in trying. That's the clip you see below.  She expressed interest in walking which is great.  But then in the afternoon PT session, she was resistant again.  I guess that's how it will be for awhile, and it's clear it's going to take a lot of work to get her back to pre-surgery ambulation.  But I know once she feels more comfortable, she will be so happy to be getting around that way, so much faster and more independent than in the wheelchair.  So in this clip, you can see the therapist helping to advance Hannah's legs with each step, as it's all about teaching her better/more effective gait patterns than she had before the surgery.  This is also why they don't want to rush into getting her ambulating too soon, before they build up her strength, so that she doesn't fall back into those old patterns.

 

Another clip I have shows Hannah in the pool, with a lifevest on.  I had brought it from home and wanted to try it out, because trying to figure out what Hannah can wear in the pool to be an independent swimmer has always been a challenge, since she has a hard time keeping her head above the water and her feet under her.  In this clip, she has wrist weights on her ankles and her lifevest on and she is able to swim on her own! It's so amazing to see, and what's even more amazing is when you look at how well and how much she is moving her legs in the water.  Reciprocal movements, with wide open legs-just beautiful and something she could definitely not do before the surgery.  In the water, the results of the rhizotomy are somewhat easier to see than when she is on land, but it's my hope that as she gets stronger and stronger, she will be able to move just as easily when she's out of the pool in this new and more loose body of hers.

Another clip I have is of Hannah tall-kneeling yesterday.  You can see she's having a blast playing with the PT and her buddy Ayana who is a child-life specialist that Hannah's taken a shine to.  Actually I think H has taken a shine to most everyone here! But anyway, the length of time that she can be in tall-kneel is so impressive here, and a big improvement from before.  More progress, horray!

OK, it's getting late so those are my updates for now.  Big day tomorrow, Hannah's PT from home and one of her students are coming to visit-we're so excited to show her all the good work H is doing and how amazing her body feels without all of that tone.  Plus we love these good buddies of ours and special visitors always make our day!  TGIF:)

Ode to Starbucks Via

Oh my Via
It would be un mal dia
Without you in my life

Four quarters for coffee
Not very easy
To scrounge up day and night

Iced, decaf or high test
No doubt you are the best
Helpin me get thru this right

The day to day

This is Hannah's new room, a huge upgrade from the last, as we don't currently have a roommate and we have the window view (it's the little things!)  There's a daybed by the window where I can sleep, but most nights I just snuggle right in with Miss H which suits us both just fine aside from the fact that the bed regularly inflates/deflates throughout the night-it's a pressure relieving bed and it's kind of annoying.

This is Hannah the first day she got to go in the pool.  The facilities here are amazing and the pool is no exception, plus they keep it a delicious bathtub water temperature.  They also have lots of fun toys, puzzles and "aquatic" versions of games (like laminated Uno cards) to keep kids entertained while they are in there.  Hannah had to wait until her stitches came out to go in, so it was a very special treat.  She only swam for 30 minutes and was totally wiped out after, a real wet noodle so to speak.  Today she swam again, this time for an hour.  She did awesome, but again it left her pretty pooped the rest of the day.

Hannah is kept very busy here every day.  Today's schedule: 1/2 hr of PT at 9am, followed by aqua therapy from 10-11, followed by time with the child life specialist (someone she plays with but who is also checking in on how she's doing emotionally) from 12:30-1, followed by OT from 1:30-2, followed by PT from 2:00-3:00.  Phew! In between, we eat, try to get out for fresh air, hang out in the rec room, read books/do art projects/cruise around the hospital grounds looking for a change of scenery.  In the evenings after dinner they always have some kind of organized rec activity for the kids and then it's shut eye at around 8:30. 

Now that we're in our own room and Hannah can get to bed at a reasonable hour, we've hit upon a routine that seems to work well.  We read books and then she gets a dose of Benadryl for her itchy back and a dose of Melatonin to help her sleep and then we watch a quick show on the iPad before it's lights out.  I've noticed that if Hannah has had an especially busy, taxing day, she complains a lot about her back being itchy but on more chill days or days when she has enough downtime between therapies and gets into the bedtime routine at a reasonable time, she doesn't have problems with her back.  Which makes me think it might be more than just itchy, but maybe also sore or sensitive (in a nerve sensitivity kind of way).  Either way, it motivates me to try to preserve a good routine for her with enough downtime and making sure she's in bed early.   She's working her tush off while she's here and using her body in new and different ways, not to mention she did have a major surgery just two weeks ago, so it makes sense that she gets out of wack easily.

However, I do think it's worth it to mix up the routine now and again with special visits from family and friends and special outings as a family.  It's taking a toll on everyone, being apart from each other for such a long time, and now that we can take Hannah out for the day in the car, we are going to try to get out all together every weekend.

Here are a few pics of some special visitors and our first big outing as a family, last weekend at Brendan's cousin's house.  We all had such a great time being together somewhere other than in the hospital.

And here is my girl, sitting up so well and using a tray I got for her and Isabelle (at Target, in case you're wondering!) which holds all of her art supplies and provides a great place for her to do one of her favorite activities.

Next post, more updates on how Hannah is doing with her PT...

Reflections on rehab

So many random thoughts go through my head every day through this experience, and I think, "I want to jot these down." But they don't gel together into this nice narrative, or if I want them to gel nicely, it would take me awhile to sort out the thoughts and organize them somehow first.  And that kind of time and mental energy is in short supply, so I decided to just toss them out into the blogosphere as is, so they're captured for posterity and in the off-chance that I someday do get to collect them.  So here goes:

-I'm turning into one of those people who have to pocket bread and butter from the restaurants they go to.  Anytime I spot salt and pepper, I grab it and put it into one of the drawers in the hospital room, next to the packets of sugar, ketchup and ranch dressing and piles of spare plastic silverware.  I am also hording paper cups, plates and napkins.  Eventually I'll totally recreate my kitchen pantry.  These are the things you do when you are not in control of your environment, I guess.
-Every evening after dinner, they plan some kind of recreational activity or entertainment for the kids.  The second night we were here, they had a Candyland party complete with a recreated game on the floor of this large room and two life-sized gingerbread pieces sitting in wheelchairs to be moved around the board.  Last night they brought a guy in who taught the kids some African drumming.  Each time I go to these events, I vascilate between smiling to myself because I think it's such a great thing they're doing, to choking back the huge lump in my throat because even though it's great, it's also incredibly sad to me to see these kids, kids with trachs and g-tubes, huge scars on their heads with patches of hair growing back, wheelchairs all lined up and everyone trying to create some semblance of "normalcy"-whatever that means-in this otherwise totally sterile environment.
-The lack of fresh air and exercise is getting to me.  We try hard to get out for fresh air as much as we can, but Hannah's schedule is pretty intense and she also doesn't fare well in the humid heat of a NJ summer.  When we do get out, it's often in the evening and there aren't a whole lot of desirable/safe places to walk around in the evening in this neck of the woods.
-This is a place where people come to get fixed up.  The hospital is the place where you are sick, and here is where you come to get well/strong/"better." Because of that, and because it's a kids' rehab center, it's a very lively, active, busy place.  Much better energy than at the hospital in NY.
-We planned for Hannah to be here, which is a very different state of mind for me to be in than the mom of the 17 year old who just got out of a week long coma after being hit by a car/hit-and-run while waiting to get ice cream at the Jersey shore on day 1 of his summer vacation.  For us, we are hoping Hannah will be in a better way when we leave than she was before the surgery.  For many others, this is the first stage in their acceptance of a whole new way of life and a new body.
-I'm getting tired of nursing assistants coming into Hannah's room at 7am to ask if she peed or pooped yet, and to get her up for the day even though we've expressed many times that we will be responsible for making sure she's up, and to please not disturb her in the morning so she can sleep.
-Every meal the staff asks what Hannah ate.  But sometimes a staff member will just take the printed out slip on her tray that shows what we ordered, and not even ask what she actually ate.  Hmm...
-I have a new appreciation for the Orthodox Jewish community.  There is a Hasidic boy on Hannah's floor who has the most amazing support network around him every day.  Last night at the drumming demonstration, two of the men in his community came in wearing funny hats and big red clown noses which all the kids got a kick out of.  They sing and dance and laugh with him and bring him lots of food.  He is very loved.
-It's sad to see the kids here that don't seem to have family visiting them.  I don't know their stories but I'm sure they aren't happy ones.  The nurses here are their surrogate mothers.  Amazing that these kids still smile, laugh and play.
-I miss Vermont.  I am so appreciative of being here for the opportunities it's affording Hannah, but I am also so aware of how important a sense of place is to me and my well-being.  I really do wilt when my surroundings lack easy access to nature.  I also miss my community and the values many of us share for the simple, local, unplugged life.
-I'm writing this in the dark while Hannah sleeps.  Finally she is getting some good solid zzzsss every day, which was lacking before we switched rooms. So while Hannah sleeps, I type...

WE LOVE MAIL!

Finally got some mail! Guess it was in the mail room but not sorted-they do it only ONCE A WEEK-eeh gads. Anyway, here's a thank you for the love from the little lady herself.  Scroll down a few posts if you need Hannah's address.

 

The big 4-0

Saturday was my 40th birthday.  While not quite the way I imagined ringing in my 40s, my amazing family made it a special day by baking a cake, bringing presents, and recreating a "birthday party" in the hospital dining room.  We broke some rules I'm sure when we lit the candle but lately my motto is, "Seek forgiveness and not permission."  And for Hannah, having all of us-my brother and his son Luca, my sister, Brendan, his mom, my mom, and all of our kids-sitting around the table was the best medicine for her.  And the best present for me.  Can you see all of the happy smiles? Here's Sam, Hannah, Luca and Isabelle having fun together no matter where they are.  Love those kids. And a shout-out to my mom for making this an actual birthday and not just another day.  Love you.

our girl working hard

OK, my fears about Hannah not being put to work and maximizing her time in rehab are being shot down left and right.  Today they had her riding an adaptive bike and in the stander out on the playground.  Below are two clips-a shout out to Kim, her PT at home-wanted to be sure you can see how awesome she is doing and get that new bike ordered for her asap for when she gets home:) (video quality not great as B filmed from his phone)

I guess B said today was a little more of a sad day for H, missing me big time and probably also wiped out from the late nights (her roommate stays up late unfortunately) and all the work she's been doing during the day.  To be expected; she won't be perky all the time.  But tomorrow I'll be headed back with Sam and Isabelle.  It's hard to be away but it's been a very good respite for me, to be back in the "land of the living" a little bit.  Anyone who's spent any kind of time in a hospital knows how tough it can be on the soul...

And without further ado, here's our wonder girl:

The changes we can see in Hannah post SDR

I know there are some other parents reading this blog who are contemplating or about to have their child undertake this surgery, so I wanted to document some of the changes we are seeing in Hannah and some thoughts on the procedure, where we had it done, etc.

We struggled with whether or not to have SDR done at the place/with the surgeon that pioneered the minimally invasive procedure and has had such great results.  This is at Children's in St. Louis, where kids typically stay for 5 days and then go home to intensive PT.  We decided that if we could find a surgeon with a lot of experience and success with SDR, who chose candidates judicially and cut a good percentage of nerve rootlets but not so much that kids were rendered incapacitated for a very long time, we would look at other places.  We also decided some amount of inpatient PT made the most sense for us if we could swing it logistically, as we know that the surgery itself is meaningless if you don't put in the time in rehab after, and that with 3 small kids at home and living in rural VT, our intensive rehab options are a bit more limited.

Lucky for us, Dr. Richard Anderson at Children's Hospital of NY fit that bill.  He is a very well-known pediatric neurosurgeon who directs their Spasticity Center and has a great SDR track record.  We have family and friends in the NY metro area and near to the inpatient rehab place so it worked for us logistically about as well as it can work, to move your family of 5 for this kind of thing.

So we are very happy and feel like the amount of nerves he cut (around 60%) was just perfect for our girl, because here is what we are seeing now:

-Two days post op, the PT/OT team at Dr. Anderson's Spasticity Clinic measured Hannah's tone using the Ashworth scale and on all measures, her tone was normal.  NORMAL.  To move her legs around is like moving Isabelle's legs around.  They feel loose and like butter.  It's amazing.
-Now that Hannah's up and about, we also notice her arms are much looser, something many people report even though the surgery is only to the nerves affecting the lower limbs.
-Her voice is stronger and louder.  Before surgery, she was often hard to hear and spoke with a very soft voice.  Now she speaks loud and clear almost all the time in a big strong voice.
-Her bladder and bowel control is totally fine.  I was worried she would have a hard time with that initially but this has not been an issue at all.
-She is a social butterfly.  Before surgery, she was a little more reserved and quiet, and prone to getting very distracted.  I'm not sure what this is about, but I wonder if she was putting so much energy into getting her body do what she wanted it to do, that now that she doesn't have to struggle as much, she can focus more on what's going on around her and engage with her environment more.  This is such a great and unexpected gift, especially as she is getting ready for kindergarten.

So, we'll watch as Hannah's strength continues to come back and see where she goes with it now that excessive the tone has been removed.  But just one week out, I am already totally sure this was the right thing to do for our girl.

The skinny on rehab

Haven't had a chance to really post or process the transition to rehab until now since it's been really busy getting used to the new routine, having visitors, going back and forth to my parents' to be with Isabelle and Sam...

The transition here was really hard on many levels.  First, while being at Columbia wasn't a walk in the park, I had come to know the routine of the hospital, the best place to get cheap lunch, and where the closest coffee fix was.  My brother came by all the time and his house was our safe zone and only a  quick trip across the bridge.  The focus at Columbia was helping Hannah recover from surgery and be ready for discharge.  It was a little more "hands-off" as far as the intensity of help she was getting and we were on our own a lot.  We left Columbia just as Hannah was finally coming out of the anesthesia and pain med haze she'd been in, and she was getting pretty tired of not being able to do anything and being stuck in bed.  We billed the move to rehab as "the busy, fun place where you will have a lot going on and the place where you'll get strong."  We likened it to the Rehab Gym where she goes once a week for outpatient PT, a super fun, kid-friendly place with toys, games, and cool equipment.  So although the idea of not going home when we left Columbia was very hard (lots and lots of crying), she seemed okay with it and by the time to ambulance drove up to Children's Specialized, she was in good spirits, very talkative and positive and excited, back to being the Hannah I've missed seeing since before the surgery.

And then they wheeled her up to her room, and she caught sight of her bed which looked suspiciously like the hospital bed at Columbia, and then a barrage of nurses, PTs, OTs, doctors, etc. starting come in to evaluate her, meet us, fit her for a wheelchair, orient us, and on and on and after about a half hour, she and I were both hysterical.  Can you say "totally overwhelmed"?!  Hannah was totally crushed when she saw that same bed that she'd been stuck in for 4 days, and that took over.  She completely shut down, stopped talking, cried and cried and cried.  And I lost it.  I thought, "Oh my God what have we done? We can't stay here.  This is horrible and we're taking her home."  I felt like I landed on Mars.  I was disoriented, exhausted, stressed, and completed fried.  Brendan pulled me aside and said to me, "Look, we just got here, this is really intense, but if in a few days, it isn't working out, we're out of here."  I just needed to hear him say that, to know that we were not stuck somewhere, that ultimately we did have some control over our destiny.

I also think the stress of the past few days caught up to me.  Having Hannah in surgery for 6 hours, watching her struggle with pain, nausea, and a medication haze, seeing her not be able to move at all for a few days, and then seeing her start to perk back up again after being so quiet for so long, only to clam right back up when we got to rehab-it was just too much.

We were left to our own devices a little over the weekend which was hard, because Hannah didn't get there until Thursday afternoon and we only had Friday with the primary therapists/decision makers before the more low-key weekend staff took over.  We had a lot of questions and concerns about the direction they were going to take with her therapy.  Over the weekend, the therapy was minimal and didn't involve much more than some trunk/core work.  Meanwhile, Hannah is chomping at the bit to do more, more more: be outside, explore, move around, stand and bear weight, try taking steps, etc.  She wants no part of lying down in bed even when her back is sore and she clearly needs a break, and she's quickly tiring of her room and the lack of fresh air and limits on where she can go and what she can do.  We did manage to get a pass so we can take her off the hospital grounds so I took her outside for a lot of walks over the weekend-the poor kid is wilting from a lack of Vitamin D! It's amazing to me to see how many people come visit the kids on Hannah's floor and just sit around and watch TV with them or stay within the confines of the floor.  First thing I asked about, "when can we get outside and how much of Hannah's therapy can be done outside?"  Maybe it's a Vermont country mouse thing, who knows-we do like to be out and about as much as we can and are not a big TV family.

Anyway, so here's Hannah just itching to move and groove and it seemed like the pace of therapy was so slow we'll be here til Christmas.  So B and I had a chance to pow wow yesterday, write down our concerns to be raised with the primary PT, and hopefully help steer her therapy in a more active, aggressive direction.  Otherwise we may as well do all of this at home.

Well, today (Monday) Bren reports that the staff is definitely ramping things up, and that to their credit they probably just wanted to ease Hannah into the routine, wanted to give her more time to recover from surgery, and wanted to get to know her a little more first.  Also, it was the weekend so the primary staff not being around, the per diem folks weren't going to make any big changes to her schedule or activities.

So today, I saw some video of Hannah using a stander-will post pics when I can-which has wheels she can use to get herself around, but which keeps her in a standing position so she is bearing weight.  This is great for several reasons: first, she is bearing weight on her legs which will get them stronger.  But also, it allows her independent mobility but in a position different than the wheelchair which after being in it for a long time, by the end of the day makes her back pretty sore.  Also, the therapists had her doing a lot of sit-to-stand activities which activate those quad muscles and get those sleepy tired legs to do more work.  They said we can put her in the stander 3x a day, so she can use it even when she's not in therapy which is great, although we have to limit it to about 45 minutes a time until she gets a little stronger.  We are also eager to know what other things we can do with Hannah when she's not in therapy, but that are useful to her.  Practicing her sitting balance, doing more with her core, and continuing to do some weight bearing seem to be the name of the game right now.

It is so amazing to me and such a relief that Hannah is where she is already, just one week post-op.  We were told to expect a range of abilities in the first few weeks, and that it was all within the norm.  But to see Hannah tolerating what she is tolerating, with such little discomfort from the surgery and with such strong motivation to work hard, is a gift.  It was so scary to undertake this and worry that it might be too much for her, she was not strong enough under her tone to recover quickly, it would be a very big setback.  It is a setback in that she can't yet do what she was doing before and she is not happy about it, but the speed at which she's gaining back that ground is staggering and gives me such high hopes for where we can go from here.