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!

Family Photo Shoot

Here are some beautiful pictures that we had taken of our family back in November.

What is there to say?

I continue to be thankful at how little I have to post about Leah's spina bifida.  The couple appointments that we've had this month have been Early Intervention from the school district and swimming lessons.  EI's assessment continues to be that Leah is right at her age for all of her developmental milestones, with the exception of gross motor skills.  She's talking in 2-3 word sentences, she's picking up new words everyday, and her fine motor skills are above average.  Even though she's not walking, she is mobile in her own way.  She uses her zip-zac all over the house and at the random Barnes'n'Noble or coffee shop outings, and she uses her wheelchair at school and when we let her have mobility out in public.  She's getting so much better in her chair, so we've taken it out much more often.   Since she's still a toddler, sometimes I put her in the shopping cart or stroller to do errands.  

She also is doing swimming twice a week, which is awesome!  Tuesdays are 1/2 hour one-on-one lessons with an instructor.  They work on her core strength and also to get her to learn how to swim.  She's gone from hating the lessons and crying the entire time to reaching for her teacher every week.  Saturday mornings she does aqua baby class with either mom or day.  That is really fun!!  We float around the pool and sing songs and she mostly points to the other babies, the baby mamas and baby daddies.  We do swimming at a place about 20 minutes away that specializes in rehabilitation services for people of all ages.  There are a lot of other kids who use their services for adaptive swimming lessons with a variety of disabilities.  They also have lots of other adaptive sports, including skiing, wheelchair basketball, softball, and other sports she'll be able to play as she gets older.  On Saturday mornings they have wheelchair basketball practice and she likes watching the big kids play.  Soon that will be her!  

We also took her ice skating!  We got her in her mobile stander and put her out on the ice, and she went to town.  The biggest accomplishment was getting her to keep her gloves on her hands!  Now I very much dislike the winter and the cold, but at least this is something that gets us out of the house, and she sleeps really, really well after being outside.  On second thought, this is a great activity for Leah and Daddy to give me a little break.  That's about all there is to say for now.  I have a few pictures to share so check back another time.  I have a little girl who needs a bath!

Spina Bifida Update

Thankfully there's not a ton going on with her that's SB related these days, but since I haven't said much about it lately, and since my blog is about her SB, here we go....

The biggest news is that we picked up her Hip-Knee-Ankle-Foot Orthotics right before Christmas.  Ty took her to the orthotics company for a 3-hour appointment.  Yes, it took about 3 hours!  Even though Leah was casted for them, once she got the HKAFO's on, there were still tweaks to be made.  She'd get them on, the orthotics rep made a few marks, and then took them off to make the changes.  Ty and Leah got lots of breaks, one that was 45 minutes and ended up with the two of them picking out a dozen cupcakes, but that story is for another time!  The HKAFO's are the same plastic material as her AFO's, but they go all the way up her legs to her hips, and then there is a back brace that goes about half-way up her back.  They should grow with her but only for a few more inches.  

The reason we got this is for her to learn how to walk.  She doesn't have any muscle tone below her hips, so she cannot stand without support.  Some kids have muscle tone down to their knees or even lower, but Leah needs that support all the way up her leg.  Even with the braces, she can't stand on her own just yet.  That's a skill that will eventually come but it's not there yet.  In order for her to start walking, she'll first need to learn how to move her legs forward, and she'll need support on a walker to help her.  She will figure out how it works best for her, whether it's shifting weight to one side and using her hip to pull the leg, or using her arms to hold her up on her walker and swinging both legs forward... or doing something that's completely her own way of doing things.  Who knows!  If she wants to walk, she'll find a way.  If she doesn't, that's totally fine with us too.  We are going to give her the opportunity to decide if it's right for her and support her through it and then let her decide how she prefers to get around.  Either way, being in a standing frame will continue to build strong muscles in her arms and her legs, which is always a good thing!

The other thing we're working on from a physical standpoint is figuring out how to get her on and off the couch, in and out of her new little chair and her zip-zac and eventually her wheelchair.  She is incredibly strong in her arms and back and abs... like the girl can almost do a chin-up with no help from us!  But she's also lugging around dead weight in her legs since they offer her no support.  She can get off the couch if there's a pillow for her to climb onto; she falls out of the zip-zac (sometimes on purpose, sometimes not), and out of her foam chair.  But she can't get back in, and her favorite game now is "up" where mommy puts her back up on the couch to watch her climb down.  She might just need a little time to get taller so she can reach the couch but we're also trying to figure out how teach her to do it herself.  

Then there's the business of potty training.  2 of my nephews are in the process of being potty trained, something we watched while we were back home for Christmas.  The constant asking if they have to go potty, reminders not to go potty on the carpet, and rewards for being dry all night... something I would be dreading now as Leah is turning 2 if she were "normal" but she's not and it makes me a little bit sad that we have to be different.  When I started learning about all the things in the SB world, this "bathroom business" stressed me out the most.  It still does.  Shunts are annoying because they sometimes fail and HELLO! it's brain surgery!  Wheelchairs are also annoying and having to carry her all the time is hard... but dammit why can't she just go to the bathroom like everyone else!?!??  We have been so fortunate for the last 2 years that we don't use catheters for peeing, and she's never had a problem with constipation... both things that are very common.  Since it's been so easy, I'm afraid we're in for a real treat when we do start.  

This is also the area that gives me the most pause about sharing.  I will try to balance the fact that we're open with Leah's SB and everything that comes along with that, and the fact that this is a very private thing for her, and she may not want everyone knowing how she does her business because OH MY GOODNESS if my mom shared that with the world, I would have been mortified!!  So, for now, what I'll say is that today she's just like any other 2-year old in diapers.  By the time she gets to kindergarten, she'll be out of diapers.  How we get there, I sure as heck don't know, and I'm not sure how much you'll all know either.  I'll share when I think it's appropriate and won't when it's not.  And I'll ask for a lot of forgiveness from my pre-teen in a few years!