The Girl Can Move

Let's talk about how Leah gets around.  She has a few different sets of wheels, and they all have a different purpose for her.  

Her first wheels were the zip-zac.  She got this when she was 9 months old, so it's been here for over a year now.  It has been the most beneficial thing for her movement, and will probably end up being one of the most important things she's ever had.  Because she was so young when she got it, she was able to learn how to use it at the same age that she would have been if she was learning how to walk.  The zip-zac is what we use inside and what we take over to others' houses.  It is low to the ground and lets her pick up toys off the floor and reach books on shelves.  We don't take it outside much because it doesn't hold her in very well, and I prefer to have a chair inside that stays clean.

She also has a big wheelchair, though some people may look at it and say that it's so small.  This is the chair that goes outside and to school and to the grocery store.  It's bigger and heavier, and she has to be strapped in with a seatbelt and shoulder strap.  She cannot reach something from the floor and it's harder to get something from a shelf, so this chair is really tough for her to use in the house.  Admittedly, I haven't been as good about putting her in the chair when we're out in public.  It is easier to put her in the shopping cart or wear her in a carrier, but recently I have been better about using the chair.  We've done a couple short trips to the grocery store and to the mall.  I was really surprised at how well she did!  She still needs a little help and doesn't always go in the direction I want her to go... oh, wait, that sounds like a typical toddler!

In addition to her 2 wheelchairs, she has a dynamic stander.  This is the stander on wheels, which she really loves to use outside.  She stands on a platform and has 2 big wheels that seem to be pretty easy for her to push.  She should be spending about 30 minutes or so each day standing up, and she likes being in it to roll up and down the street.  It's pretty big and she can't really reach anything so it is better for outside.  It's great that she likes it so much because standing is really good for her.  She tires in it after a while so it's perfect to take outside or to the playground.

Just recently I borrowed a walker from another SB mom.  Leah will hopefully walk someday, though it might be sooner than we thought.  The first time I brought the walker in, she was very interested in it.  I put on her AFO's and stood her up in it so she could kind of get the feeling of how it's supposed to be used.  Her legs are so weak that I couldn't really do anything, so I put her in her regular stander and put the walker around her.  She was so happy!  She was rocking back and forth and putting her hands on the walker saying, "la-la's," meaning it's hers.  We thought about getting her into full leg braces next spring and starting the process of learning to walk, but we may try to do that a little sooner.  I'm sure I'm probably getting my hopes up but it was really neat to see how excited she was.  

Wedding Weekend

HUGE CONGRATULATIONS to my brother Matt and his new bride Katie.  They got married last weekend in a beautiful ceremony on a gorgeous day and had a super fun party.  Ty, Leah and I flew down on Thursday night and came back home Monday morning, and we had an action-packed 3 days.  Everything was wonderful and we are so excited that Katie is now officially part of the family.  My sister also brought her boyfriend Ethan home for the wedding, which was the first time I had met him.  He is great and we had a lot of fun getting to know him this weekend.

Friday morning was actually pretty low-key, and then in the afternoon Leah surprised me by taking a 2-hour nap.  I had to check on her a couple times to make sure she was still breathing.  I suppose I shouldn’t have been surprised at the long nap since she didn’t fall asleep until 10pm the night before and then was up at 6:30.  But 2 hours!  She woke up just in time for the chaos to start.  The whole Cunningham clan came over to my parents’ house to attempt a family picture and then we headed to the rehearsal.  We had been talking about how to best get Leah down the aisle in her wheelchair and decided that we’d have her big cousin, Bailey, who was the Ring Boy (because he is not a bear), push her chair.  They practiced it a few times, and it seemed to go very well.  This gave him a very important job and ensured that Leah would make it.  It worked great the rehearsal, but would they do it on the big day in front of 350 people?

The wedding day was absolutely gorgeous, 75 and sunny, not a cloud in the sky.  Leah was cooperative with an early nap, and we were able to get several family pictures in our fancy outfits before heading to the church.  I brought her clothes to the church and got her dressed with all the girls.  The dress was a huge hit!  Katie’s wedding color was navy blue, and Leah’s little dress was navy with silver glittery sparkles, which I soon found out went everywhere.  (She still has silver glitter in her hair, 2 baths later).  She was so happy rolling around in her chair outside as everyone was getting to the church.  This was the same church where Ty and I got married almost 11 years ago and where my parents also got married 34 years ago, so it’s a special place for our family. 

At 2:00, the guests were seated, the bridal party started to line up, and I sat in the back with Leah in her chair.  Would she go through with it??  She was so cute, waving to everyone as they walked down the aisle.  The grandmothers, then the moms, the attendants, and then it was Leah and Bailey.  I got her chair to the center of the aisle, Bailey had his hands on the back, and then off they went.  Bailey’s mom and I ran up the side to meet them at the front, and I totally started tearing up as the whole church did a collective “AWWWW.”  I could hear the photographers frantically taking picture after picture, and then I heard it.  “WAHHHHHHHHHHH”  Yep, about half-way down the aisle, she screamed.  I got around to the front just in time for Bailey to park her chair and I got her out and quieted her down while Katie made her big entrance.  There were tears but they made it!  I watched the video later that night and had to laugh because it was hilarious!  Bailey was all business, totally straight-faced, he was on a mission.  Leah, even though she was freaked out, held onto the ring pillow until she chucked it at the very end.  They did much better than I expected, and I was so proud of them both.  I wish she was a little older so she could remember this.

After the ceremony we did a few pictures at the church and then headed to the reception hall.  We were early so I checked into our room (we planned to stay there overnight) and had about an hour to hang out there and have some quiet time.  I thought Leah might fall asleep but again, she was a trooper and powered through the reception.  Bailey and Leah were the only little ones at the wedding and then the other 3 cousins came to the reception for a little bit.  After dinner, all 5 of them got out on the dance floor, Leah in her wheelchair, and they went a little crazy!  It was so much fun watching them together, dancing around, Leah spinning in her chair.  I couldn’t believe her move, where did they come from??  Again, I wish she was older and could remember having so much fun with her cousins.  After about an hour on the dance floor, she was done.  Busy day, tired baby.  She actually pointed to the door and wanted to go home.  We took her back up to the room and she crashed.

On Sunday morning we went back to my parents’ house for brunch and to veg out.  We were all tired, it was rainy and chilly outside, and it was the perfect day to eat cinnamon rolls and take a long nap.  Here are a few pictures of the big day.  Enjoy!  And another big congratulations to Matt and Katie!

 

She's Really Smart

The other night I went back and read through some of my posts.  Unlike my mom, who keeps meticulous records of us (why didn't I get that gene?!), I haven't been very good at keeping Leah's baby book updated.  I was looking through the last year of posts to fill in some of the gaps in my records when I noticed that I do a lot of writing about what Leah does and doesn't do physically, but I haven't talked much about what's going on inside that little head of hers.   Maybe I just assumed everyone already knows, but I suppose there could be people out there wondering how Spina Bifida affects her mental or cognitive abilities.  Let me tell you, it doesn't at all...  She is really smart!!  

I am amazed at the things she picks up on, or remembers, or how quickly she learns something new.  It's pretty incredible, actually.  The other day we were driving home and we started to pass a truck that was pulling a horse trailer.  I slowed down so we could drive along side it for a minute, and told her to look out her window to see the horse.  She pointed outside (I'm not sure if she actually saw it or not), and said "nay-nay".  A couple days later we were driving down the highway and she pointed out the window and said "nay-nay".  How did she remember that?  We hadn't talked about it since we were in the car that day.  Her vocabulary is growing everyday and she's starting to string 2 or 3 words together, like "bye-bye, mama" and "hi, dada".  Just this week she has been putting sounds to her sign, and instead of just signing for milk, she signs and says mi-mi. 

Aside from the language and memory, what amazes me the most is how sensitive and empathetic she is.  It's pretty incredible.  She holds and hugs her little baby dolls and gives them kisses.  She has a book of baby faces, and she gets so sad when she looks at the baby who is crying.  She holds it up to her face and gives the baby a hug.  When she hears another baby crying, she points and gets a very concerned look on her face, as if it really bothers her.  I hope she stays this sweet and caring little person that everyone wants to be around.  

So there.  Yes shes uses a wheelchair.. blah, blah, blah.  What really matters is that she is a kind and gentle little girl, she's got a great sense of humor and gets how to joke around, and is just as smart as any other kid I know.  I suppose I am slightly biased since she is my kid, but I'll say it anyway.  She is really smart!

Hope

I was looking at the list of all my posts the other night and realized that I have done 100 of them.  That's a pretty big milestone!  When I started this blog 2 years ago, the intent was to share our story with our family and friends, many of whom live far away from us.  We wanted everyone to read about Leah and get to know her because Ty and I aren't the best at keeping up on other forms of social media.  I've mentioned before that reading the blogs of other families was (and still is!) a huge comfort for me when we first got our diagnosis.  The doctors weren't very optimistic about her quality of life, and we thought that our lives would totally be turned upside down in trying to parent a child with special needs.  Reading about how other families lived normal lives and realizing that SB is very manageable gave us hope that our little girl would not be a burden to us... in fact, it's been the exact opposite!  She is an absolute joy, and anyone who meets her instantly falls in love with her.  We have had strangers go out of their way to tell us how beautiful or cute or funny she is and how she made their day a little brighter.  Just in our little community, she is touching lives from the lady at the farmers market who gives her blueberries, to the retired airline pilot at the coffee shop who saves the funny papers for her on the weekend, to the butcher at the grocery store that she waves to, and the list goes on and on. 

I hope that our little corner of the internet has touched someone's life.  I frequent an online SB parents' support group, and have met and become friends with some of the moms there (it's how I met Westin's mom!).  I also have started following a lot of their blogs, and I hope that some of them are reading ours as well.  It's probably once a week that another new mom gets her SB diagnosis and we all jump to her rescue to tell her about the amazing things our kids can do.  Hopefully some of those new moms have read our story about Leah and realized that they can do this.  I relive our Diagnosis Day each time I read about one of their stories, and I also realize how far we've come. 

The other weekend we attended a Spina Bifida event.  It's always so great to see our friends and meet new friends.  As Leah gets older, it will be very important for her to be around other kids with SB.  I want her to have mainstream, "regular" friends but I also want to her feel a connection to the SB community.  These are her people.  I want her to look up to the older kids, watch them get around in thier equipment, learn how to handle different challenges and setbacks.  I want her to be a role model to the younger kids, and encourage and cheer them on.  The same goes for Ty and I - we learn from the parents who have been there and done that, and we want to support those families just starting out in this journey. 

Those events are bittersweet for us.  There's the one side where we see kids who are walking, who don't have shunts, who have the same lesion that Leah has but who function much differently.  In a way we feel a little bit sad about what she can't do.  We also leave there feeling very blessed.  There are kids who have had multiple shunt revisions, have club feet and have to be casted or have had multiple surgeries, some kids need trachs or oxygen.  Most importantly, we walk away from those events talking about how to challenge her more, what more could we do with her, how else can we push her.  It was at this event last year that we saw someone with a zip-zac, and it's been the biggest blessing to her in her mobility.  Just a few months ago we were at a different event and saw the rolling stander (the same thing we took to the playground the other day), which ended up in our house a short time later.  This time we did not come away wanting any new equipment, but we did walk away thinking about what other kind of therapy we can be doing with her.

Speaking of therapy, we are done with Physical Therapy, at least for a while.  I talked about this a little while back that we'd be wrapping up around the end of the summer, and now we're done.  Our therapist just could not keep her engaged and wasn't teaching her many new things lately.  Over the past 8 months, we were very successful in getting her to master the zip-zac, and then the wheelchair, and working on crawling.  Just recently we focused on climbing and getting down, which we will continue working on at home.  We did get on the waiting list for aqua-therapy and will be checking out some other places to get her into a pool.  She absolutely loves the water and it would be great to get her swimming this fall.  We will probably head back to PT in the spring when there are new things for her to learn.  Dr. Marker encouraged us to start getting her into a walker around 2, and that would be a great thing to do next spring.  She loves being mobile and seeing how much she loves her stander makes me think that she'll do very well.  Right now we're going to keep focusing on increasing her mobility and making sure she's staying on track with all those other developmental milestones that an almost-2-year old should be hitting. 

So after now finishing my 100th post, I want to thank all of our loyal friends and family who have followed us from the beginning.  We really appreciate your love and support.  To all fellow SB moms, thanks for reading our story... I hope you can relate to a few things here.  I sure love reading about your kids.  Thank you for being a shining beacon of light when things looked really bleak at first.  Thank you for continuing to share you story and reminding me that our kids are wonderful and awesome and for being a great role model for me.

If you're a newly diagnosed parent, please know that there is hope.  There is lots of hope, and lots of love, and lots of laughs.  Your baby will surprise you in more ways than you can count.  Your baby will prove lots of doctors wrong, and you'll prove to yourself that you can do this.  It's hard, it sucks sometimes, there are lots of things to worry about, but nothing worth anything ever came easy.  Remember that you're not alone and that someday you'll be on the other side and wonder why you ever questioned this in the first place.  Until you get there, just hang on.

Play Time

One of the biggest challenges about having a child with special needs is finding places for her to play.  Most playgrounds have mulch or sand around all the equipment, which makes it difficult for her to get around.  I suppose she could crawl around in it, but she's still at the age where she's putting everything in her mouth, and honestly I don't like how dirty she gets when she's on the ground (yes, that makes me a bit of a lazy parent).  I'm always excited when I find a place that's wheelchair-friendly, which is where we went today.

This playground is not totally wheelchair-accessible, meaning she could not get up onto all of the equipment.  She was able to roll around on almost everything because the surface was rubbery and it was surrounded by concrete.  And it was almost totally flat, so she was able to get around very easily.  I opted for her dynamic stander this time.  She's been more excited about using it lately, and I think it's a little bit easier for her to use right now than her wheelchair.  It's also very good for her to be standing up... both for bone growth and development in her legs and feet but also for internal circulation and digestion.  Double win!  I thought she'd only want to be there for a little bit, but I had to be the one to pack up and drag her out of there after over an hour.  She kept saying "more, more" when I told her it was time to go.  We will definitely have to go back. 

Here are a few pictures of our outing this afternoon.  You can see how easily she was able to get around.  She liked going under the playground and hiding from mom.    She also loved the swing!  It's one of her favorite things to do at any playground.