Leah Ride a Bike

Leah got a new bike!!  Last weekend we went to a bike expo for children with disabilities.  While we were there, we ran into a few other families we knew, and one of them offered us their son's old bike.  We were thrilled because a new bike for Leah would have cost around $1,000.  Yesterday Ty went to pick it up.  They had warned us that the chain was broken, but Ty was confident he could fix it.  Leah was so excited to see it!  She loves being outside (or, out-a-side as she says) and was having so much fun riding on it while we pushed her.  Since it needed a new chain, Ty took it into the bike shop near our house and they were kind enough to put a new chain on it right on the spot. 

This is going to be a game changer for Leah this summer.  It will allow her to be outside on a bike, just like other kids.  It's a hand trike so she pedals it with her arms, and it was amazing to see that she knew exactly what to do.  She loves it!

 

Out and About

We have been pretty busy lately.  Two weekends ago we had the annual Spina Bifida roller skating party.  This was the party where last year Leah got to try out a big-girl wheelchair for the first time.  What a difference a year makes!  This year she was out in full force with her wheels and she also enjoyed the company of her own friends.  She definitely has opinions about who she likes, what she likes and doesn't like.... and she isn't afraid to speak her mind.  Thank goodness/oh my goodness!  I think the girl is going to give us a run for our money.  I also enjoyed this year for what it was.  I'm in a much better place now than I was at the last event because this is her reality, we know it and we know how to manage it.  Last year we were just at the cusp of having her in a chair and I was having a hard time picturing that this will be our life.  I was also very absorbed in watching her move around, almost as if it was for the first time.  She had been in her zip-zac a lot, but that night was really a turning point for her in terms of mobility.  It was like the light bulb went off when she saw all the other kids with their wheels, and she realized that she can do that too.  So this year was a lot more chilled out, Leah was doing her thing, I got to talk to other parents and have some fun of my own.

Speaking of the event, last year was much better attended, almost double what we got this year.  There are lots of other families here in town and these events for us are always a great way to connect with each other.  It has gotten me thinking about how to better market the SB events locally, how to get each other more connected, and how to get people to come in person.  Anyone who has great ideas, please let me know! 

We celebrated Easter last weekend with brunch, church, dinner, and Easter egg hunts.  Leah had a really fun time getting an Easter basket and filling it with all kids of goodies, especially M&M's.  They are her favorite!  This weekend has been rainy and thunderstormy.  I love it!  It means that spring is here and pretty soon I'll be planting flowers and having lots of outside time.  Leah absolutely loves being outside (or out-a-side, as she says), and we have had some nice walks outside.  She's been liking being in my back-carrier lately, which I also enjoy to get some extra exercise.  The challenge we are going to have now is that she wants to be very independent but that doesn't leave her much that she can actually do.  She can roll around on our driveway and we have a few toys for her like a basketball hoop.  Bubbles are a big hit too, and now we need to find enough things that will keep her entertained outside.  I wonder what an obstacle course would look like in our backyard?  Might be a nice thing for us to work on over the next couple weekend.

Family Vacation

We finally had a family vacation!  It was a much needed break from the longest winter ever, and we also just needed some time away.  We left on Sunday afternoon and came back Friday morning, the perfect amount of time away and then we were able to come back to a full weekend here in town.  Our vacation was in Tampa where we rented a house across the street from the ocean, just south of Clearwater.  Fun, fun week.  We got to the house on Sunday afternoon, and Leah was obsessed with getting into the water.  We had been talking about it for a while, so as soon as we unpacked we hit the beach.  Except that we weren't there long.  She did not like the ocean.  Poor little girl, she was so excited and then the waves were too big, water too cold, and the experience was too much.  As it turns out, the condo building next to us was kind enough to let us use their pool, which was much more her style (and mine too... all that sand, yuck!).  We swam almost everyday, had activities in the morning and relaxing afternoons.  

Some of our highlights include a trip to the Clearwater Marine Aquarium to visit Winter (of "Dolphin Tale" fame), the St. Petersburg Children's Museum, and a dolphin-watching boat ride in Tampa Bay.  And we also got to see my best friend Audrey and her husband John for dinner.  Leah was a little disappointed that Audrey's baby is still in Audrey's tummy and she couldn't see the baby in person.  Soon enough!

I loved seeing Winter the dolphin.  Ty and I saw the movie "Dolphin Tale" when I was pregnant with Leah.  The movie centers around Winter, a dolphin who loses part of her tail and becomes an amputee.  She gets a new prosthetic tail and becomes an inspiration for people with physical disabilities - including veterans and parents of little girls with Spina Bifida.  It was a really touching movie and ever since, I have been really touched inspired by her.  So seeing her in person was pretty amazing.  Leah and Ty had watched the movie and she knows that Winter has to wear a brace on her tail.  We got there when it was pretty quiet because there was a sting-ray feeding at another exhibit, so we had some time up by Winter's pool by ourselves.  The volunteers were amazing and came over to talk to us (Leah was in her wheelchair), and even let us hold her prosthetic tail.  Then we got to watch Winter's exercising time.  We saw the trainers put on her tail - that she doesn't wear all the time, only for a little bit of time a day - and Leah talked about how she wears braces too and goes to exercising too.  What a really special moment.  You can see all about Winter at http://www.seewinter.com/. 

We also had a great time going on the dolphin boat ride.  Leah actually really liked it and she pointed out all the dolphins we saw.  She thought it was fun to see them swim in the water and blow air out of their spouts.  She was calling the dolphins, "come here!" and "dolphins, where are you?"  Well, I should say she was yelling at them.  I hope the other passengers thought it was as funny as we did.  The Children's Museum was awesome too.  It had lots of exhibits, like a grocery store, fire truck, vet clinic, doctor's office, and climbing wall.  There were lots of other kids her age there and she had just as much fun seeing them as she did playing.  I think her favorite part of the trip was going to the bird sanctuary up the street from our house.  There were lots of birds and she liked seeing them really close.  She kept pointing at "this guy" and "that guy."  Due to the high bird traffic areas, that was not a wheelchair destination, but most of the others were. 

Leah was pretty much an awesome little traveler.  She did really well on the plane ride down to Tampa, which is about 2 1/2 hours from here.  She played with her toys, ate snacks and had a short nap.  Couldn't have asked for anything better.  We brought her wheelchair for her to use when we were outside and her zippa for in the house.  It's definitely different taking a child on vacation, and especially one who has lots of equipment.  We were able to stuff the zippa into a duffel bag, and then Leah used her wheelchair through the airport.  I don't know what I expect when we're out in public with her, but gosh we get a lot of stares.  Mostly people are really nice and a surprising number of people stop and say hello or comment on her chair.  Kids especially stare, which doesn't really bother me at all... they are curious and most kids haven't seen a kid in a chair before.  What bothers me more than anything is thinking about how we're going to handle these kinds of trips when she gets older.  Right now she's small enough that we can carry her when we can't bring the wheelchair, like on the boat.  But what happens when she's 7 or 8 and she wants to go on a boat ride?  The boat we were on would be really hard for someone in a chair.  Ty and I also like to walk everywhere and we can go 1-2 miles just to get to dinner.  Again, that might not be practical for us to when she's old enough that she doesn't want to be in the stroller.  She's already getting to the point where she wants out of the stroller if we go into a store because she wants to check everything out, see who's there, what's going on.  I want a stroller/wheelchair combo for a little older kid.  Engineers out there, please get going on that!  We also may have to adjust the type of vacations we go on as she gets older.  As she grows up, it becomes more and more apparent that the world is made for 2 feet, not 4 wheels, and that is sometimes a hard reality to face.

Thankfully, we were still able to have an amazing vacation.  All in all, beautiful weather, lazy days and a great trip away.

Here are a few pictures of our family fun!

Leah seeing the picture of Winter

 

And then Winter in person

 

You can see her tail is missing

 

Here we are with one of her braces

 

Winter having exercising time with her teacher, just like Leah does!

 

Fireman Leah, looking like Uncle Dan!

 

Pointing to the birds at the sanctuary

 

Boat ride looking for dolphins

 

Having so much fun!

 

Leah Walked

As I mentioned in an earlier post, Leah has been walking at physical therapy.  It takes quite a bit of energy and support, as she needs to be in her HKAFO's, then harnessed in, and strapped to the gait trainer.  Then her therapist manually moves her legs in a walking motion.  But she does it and she's been talking about it.  The other day she told me that she wants to walk.  So when we got to PT, she asked her therapist, "Leah walk please."  Our goal is to get to a point where she can try it without her HKAFO's to see if she's able to do any of the movements herself.  We know that she is able to move her hips, and we see a slight movement through her upper right leg.  All she needs is a little bit of strength and then her hips and abs can do a lot of the rest.  Here are a few pictures of her in the gait trainer. 

Kindness

I love reading about random acts of kindness.  Sometimes I even do them myself, though not as often as I should.  I love reading about people going out of their way for someone else, especially if that "someone else" is a little kid... and even more especially if that kid is like my kid.  My kid, the one who has a disability.  It doesn't matter if it's Spina Bifida or Downs Syndrome or autism.  There's a special place in my heart for people for people like this guy on the video here.  I ran across this story from the Special Needs spotlight blog (the same one that featured Leah last summer).  It's a story about a little boy who has autism and loves the garbage man.  Watch, enjoy and just try not to shed a few tears.  Kindness... pass it on!

http://abclocal.go.com/kabc/story?section=news%2Flocal%2Fventura_county&id=9435710

Translate That

Leah is becoming quite the talker lately and it's really fun listening to what she has to say.  I can understand pretty much everything that she says, though there are a few times when I'm not quite sure what she's talking about.  It's ok, she corrects me or points to what she wants or uses a few signs.  Here are a few of the things she's been talking about lately:

"No mama sing ABC.  Leah sing ABC self.  ABCDFG..." - This is pretty clear.  She doesn't want me to sing the ABC song, she wants to do it herself.

"Doh, Leah, doh!!" - This is her way of saying "Go, Leah, Go!" which she yells when she's going full-speed in her zippa. 

"Nonna baby!  Hug baby.  Baby sit.  Baby drink milk bobby." - Leah's old teacher, Donna, who left to help babysit her grandbabies, brought one of the babies to visit Leah's class a few weeks ago (yes, she's still talking about it).  Leah hugged the baby and held the baby in her lap.  The baby drank milk from his bottle.

"Airplane!  Babies, baby momma, baby dada.  See mama-mama, papa." - She loves finding airplanes while we're driving.  I don't know how she does it but she can spot them as teeny-tiny specks in the sky.  There are babies on the airplanes with their moms and dads, and they're going to visit their grandmas and grandpas.

"Leah Gigi-minnah Semeesemenes." - This is Leah's full name.  She can say her first name.  Her middle name is Jillian, and she says it the way she says our cat's name (whose name is Jill, and who she calls Jilly-Minnah (which is her word for cat, or meow) but Gigi is how she pronounces Jill).  Whew, did you catch all that??  And our last name ends up having about 8 syllables.  But it's just about the cutest thing I've ever heard.

"Happy momma home." - Does this need any explanation?

Mobility

There is quite a lot happening in Leah’s world these days from a physical/mobility standpoint.  She is back in Physical Therapy for weekly appointments after taking a break since August.  We decided to switch clinics this time, and I’m really happy that we made the move.  We are now going to Gillette for PT, and I had heard really great things about them from other SB families.  It seems like they are much more familiar with SB than we experienced with Children’s, at least with the therapist we had.  They also have a great facility and in the 2 visits we’ve had, I am very impressed. 

2 weeks ago we had an evaluation with a therapist, who measured Leah’s feet to see how flexible they are.  Her left foot is very loose but her right is tighter and can just barely made a 90-degree angle.  We need to get her feet into AFO’s for longer periods of time now to give her feet and ankles a nice stretch.  We talked about the goals I have for her, which are to be able to sit independently and also to get her to walk, and how we are going to use the PT to achieve those goals.  Her therapist was really knowledgeable about SB (and actually sees a little boy with SB!), and that makes me feel confident that she’s going to help Leah.  We agreed on weekly appointments for the next 10 weeks, and I’m really excited to see how things progress.

Let’s talk about our goals… On the sitting, she cannot sit up by herself.  This is something that has been a bit disappointing for me.  I thought it would come easier for her and that she’d be able to do it better than she can today.  She does sit nicely but she needs her hands on her legs or to be sitting up against something for support.  It makes it challenging for her at school or at home when she’s trying to play on the floor.  At school her primary transportation is her big wheelchair, and it’s not easy for her to get toys off the floor or sit with the other kids at group time.  She has a corner chair that she can sit in, which is flat on the floor and 2 little walls behind her.  It gives her the support she needs to be on the ground, but it buckles her in so she’s confined to it.  There aren’t always enough teachers for her to sit on someone’s lap, so it is really important that she can sit up on her own, if at least for just a couple minutes at a time.  Our other goal is to get her walking.  Now I recognize that this is something that will take lots of time, practice, energy, and most of all, willingness from Leah to be able to do this.  It’s going to be hard!  She will need a lot of support from her braces and great upper body strength to do it.  I think she can!  I think she wants to.  I want to give her the opportunity to try it, and if she chooses that it’s not for her, then at least we gave her that chance.  At least it will be her that decides that.  There will probably be a time when she chooses her wheels over her legs, and that’s ok.  There are times, though, when wheels are going to be difficult, so I want her to be able to do things like getting on and off an airplane, transferring to the couch, or not being confined to a chair when she’s visiting someone who’s house isn’t accessible. 

At our first “real” appointment this week, we worked on both sitting and walking.  For sitting, we had Leah reach for puzzle pieces and throw frogs into a bucket.  She had fun and got her to reach with both hands.  Some of it for her is having the confidence that she can do it, and then gradually building up the strength.  Again, I think a couple minutes is realistic at this point.  Then she walked.  Now, this was a pretty big production!  But she did it.  She got into her HKAFO’s, then strapped into a harness, then we buckled her into an overhead contraption so she was standing up all by herself.  We put her on a treadmill and the therapist turned it on really slowly, and she took Leah’s legs and walked them on the treadmill.  She seemed to really enjoy it, but mostly because I was blowing bubbles at her.  I can’t figure out if she really knew what was going on, but afterwards she said “Leah walked.  Mama watched.” Next week we’re going to try doing the same thing just without her HKAFO’s on to see if she’ll do any of the movements on her own.  She’s still doing swimming lessons, and I asked her instructor to get her to start kicking her legs in the water.  It’s all about building muscle strength and control in her legs. 

Then, finally, we saw her cranial-sacral therapist.  This was the first time we’d gone 3 months in between visits, but we’re going to go back to every 8 weeks because that was just a little bit too long.  When we were in the car on the way there, Leah kept saying “owwie back” so I told her that her therapist might help make it feel better.  She started out on Leah's back and could tell why she was in pain… her right and left sides were totally out of alignment.  Her lower back and pelvic muscles are very weak, and she’s gone through a pretty big growth spurt over the last couple weeks, and her body hasn’t been able to keep up with it.  She gave us a few suggestions of different exercises to do with Leah to strengthen that part of her body.  First, we need to get her up into a crawling position on her hands and knees.  For “typical” kids, getting up on all 4’s gives the spine a nice curve.  Leah’s spine is really curved through her lumbar but then starts straightens out towards her neck.  When we got her up in that position, she was really unstable and I could see how weak her lower back actually is.  She overcompensates by having incredible strength in her upper body and arms.  Now we need to balance that out.  Since she never learned to crawl, she also missed out on the cross-brain activity that comes with crawling.  The motion of left arm/right leg engages both sides of the brain, which we now need to simulate for her.  By moving her body for her, she will still get that benefit, and then maybe she’ll be able learn to do some of that on her own.  Wow, I never knew any of that.  It’s just one of the many reasons I love her therapist and feel beyond blessed that we have her. 

We still have a lot of work to do with her.  We want to be able to give her every opportunity to help her figure out how to use her body and simulate some of those things for her.  Eventually maybe she’ll be able to make those connections for herself.  We hope!