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...

Wednesday, July 20, 2011

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...

Friday, July 15, 2011

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.

Thursday, July 14, 2011

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...

Thursday, July 7, 2011


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