18 Months!

Little girl turned 18 months old on Friday.  I can't believe how fast time has gone by!  She is half-way between 1 and 2 and starting to show more signs of being a toddler... complete with temper tantrums and all!  If something doesn't go her way, she arches her back and waves her arms really fast.  Little miss drama!  We were watching some videos of her, and she definitely isn't a baby anymore.  Here are 18 things about our favorite big girl. 

1. The way she looks out of the corner of her eyes when she's being mischievious.
2. When she says "Hi!" to everyone she sees.
3. When she sits at the end of the driveway and waves to all the cars, bikers, and people going by.
4. Snuggling up close and tucking her arms under her when she's being held.
5. She says "MA!" Not mama or mommy or mom.  It's MA!
6. "Da" means lots of different things - it could mean Daddy, Jack, Jill, food, toys, or something we don't understand, depending on the tone of her voice.
7.  We live a few blocks away from the train tracks that run through town.  She will literally stop whatever she is doing when she hears the train horn. 
8. She loves looking at pictures and watching videos of herself.  When I tell her to to something on the video, she'll actually do it in person. 
9. She loves babies and little kids.  She points them out wherever we are - church, the library, the grocery store, on TV. 
10.  I love her 6 teeth, and she is more than proud to show them off. 
11.  She can find her ears, teeth, eyes, nose, tummy, knees and feet. 
12.  She smiles on command.
13.  She is miss independent!  She loves her wheels and the freedom of getting around.  Her favorite spot is standing or sitting in front of the door and looking outside.
14.  Outside is her favorite!
15.  She is very picky with her food.  Some days she'll love something and the next day she won't touch it.  I have to feed her 1 thing at a time.  If she is mid-bite and sees something else, she'll spit out whatever is in her mouth to try something different. 
16.  Socks don't stay on her feet long, especially if we're in the car.  It's her favorite thing to pull them off her feet.
17.  The way she shakes her finger and gets a very serious look on her face when we say "no, no Jack"
18.  The way her hair curls and sometimes looks a little reddish.

She is so incredibly sweet and everyone who meets her falls in love.  Here she is as an 18-month old!

Happy Mother's Day!

Happy Mothers Day to all the moms out there!  I had an awesome day.  Leah woke up at her usual 5:45am, then Ty, his mom and Leah went out to breakfast and I went back to bed until 9:30!  After a quick nap and lunch, Ty, Leah and I went to a small farm about 15 minutes west of us.  We saw chickens, sheep, lambs and cows, all of which Leah went crazy for.  She loves playing with her farm puzzle and Little People animals, so she had so much fun seeing them in person.  The farm has a big loop trail and we walked around for a little over an hour.  It was a beautiful day, sunny with not a cloud in the sky.  We ended our day with a homecooked meal of chicken parmesan, one of my favorites.  I couldn't have asked for a better day!

Here we are seeing the animals.  Look how close we got to the cows!

Hi Chickens!

And, as promised, here are some pictures of Leah in her new stander.  As you can see it allows her to be upright and wheel around.  It is a big bigger than her zip-zac, but it's very similar in size to the wheelchair she'll get. 

Fighting

Ty and I had a fight today.  The kind that brought me to tears and left me really sad.  It's a fight that we'll have a lot as parents of a daughter with special needs and one that will never go away.  It's a fight not with each other but with the outside world, and in today's case was with our daycare.  It's a fight for Leah, to give her the same opportunities as other kids, to have others accept her for who she is, and to be comfortable with her disability.  It's not easy.  It sucks.  It's what we have to do.  And so we fight.

We have been pushing our daycare to move Leah out of the infant room and into the toddler room.  She should have moved 2 months ago, but she's still spending her days with the babies.  So today I think we both reached our breaking point and got frustrated.  Their concern, which is totally legitimate, is that they want to make sure she is safe.  She'll be in her wheelchair with a roomful of other toddlers who like to push and who don't have boundaries or social graces.  We see her being a little bored and think she needs to be with her peers who are on the same level with her cognitively, mentally and socially.  If she wasn't in a wheelchair, she'd be moved by now.  And so we fight.

Ty and I both had a conversation with the daycare director today about Leah, and we both understood his point and appreciate that he's doing his best to keep our child safe.  I think we're just losing a little patience in how long it's taking for her to get there.  She'll be in her wheelchair soon (more on that in a minute), and I have a feeling she will absolutely love it.  It will put her up higher than she sits in the zip-zac and more at eye-level with other toddlers.  We see all the benefits of her being with her peers.  They see a wheelchair and a child who need extra care, and they will be faced with something different than they've seen before.  I can understand their concern.  I can also see that my daughter needs more.  And so we fight.

Usually when I'm at work, I can focus on my job and think about Leah only intermittently throughout the day.  I wonder how she's eating and if she's napping, but I generally don't worry about her.  Today I thought about her a lot and missed her more than normal, and I couldn't wait to pick her up and squeeze her tight.  How can I protect her and prevent her from ever feeling discouraged?  How can I teach her to keep fighting?  I suppose I have to keep fighting and hope she learns that she's worth it... and hope someday she doesn't have to fight as hard.

Now on to more fun and exciting news.  Leah already has a zip-zac.  Her full-size wheelchair  has been delivered to the medical supply company here in town for modifications and should be in our home by early June.  Yesterday we got another really cool piece of equipment, called a dynamic stander.  We saw a little girl at the roller skating party using this and of course Ty was drooling all over it!  It's a stander, kind of like what we have, but it is on wheels so she can stand and roll!  We put her in it yesterday and she went crazy.  She was rolling all over the house and we could tell how excited she was to try it out.  Last night after dinner we brought it outside and she rolled to the end of the driveway to wave to all the cars driving by.  It's a much different sensation to be fully upright and tall instead of sitting down.  However it is a big bulkier than her zip-zac and barely fits through our doorways.  Ty thinks we should save $20 every month so we can fix the baseboards and walls that are going to be destroyed over the next couple years with her wheels.  Oh well, a small price to pay for a little girl's independence.

Just in the last couple weeks I've seen an incredible transformation in her mobility.  She can successfully wheel around the entire house, from the kitchen to the bedrooms and back.  (Have I mentioned how much I love our 1-story house??!!)  She turns on a dime, which is pretty impressive to watch.  Neither Ty nor I can figure out how she learned to pull with her right and push with her left at the same time.  We also are amazed at the coordination it takes to maneuver a wheelchair, especially the turns.  You use your right hand to turn left, and vice versa.  She can make it down a fairly long, narrow hallway to our bedrooms and goes pretty straight, something that just a few weeks ago ended in tears halfway down because she got stuck and then got frustrated.  After PT this week, her therapist told me I probably didn't need to bring the zip-zac anymore, since she's pretty well mastered it.  I will bring the wheelchair once we get it so she can teach Leah how to get in and out of it.  The therapist is also still working with her on getting up and down from high places, like the couch.  Today, Leah tries to go down face first, but we're trying to teach her to get off backwards, something that is a little difficult because she can't feel anything until her butt touches the ground.  It takes some spacial awareness and also her trusting herself that she can do it.  

All in all, PT will probably wrap up sometime mid-summer, at least for a while, as all of her goals will be met by then.  We will still come back from time to time when Leah needs help to figure something out.  I think about her being totally independent, and that means she'll need to get herself into bed, into a car, onto the toilet by herself.  The things that we do everyday are the same things she needs to figure out how to do too, just in her own way.  Luckily she's a pretty smart little girl.  It took 2, maybe 3, PT sessions for her to figure out how to do turns.  Our therapist told me that Leah will not be a forever patient, but will see her when, like I said, we need help on a few very specific activities.  The therapist did say that she would benefit a lot from hippotherapy, which is horseback riding, because it works to strengthen the core.   I would love to get Leah on a horse, and I think she would go crazy for it.  I love that it could be another thing we would be able to do for her.

I've talked about a bunch of really cool pieces of equipment for her, so I must get pictures up of them.  Check back in a few days and hopefully I'll have my act together and show off her awesome new wheels!

Etiquette

I was talking with a friend the other day who suggested the theme for this post.  She was asking me about how to teach her daughter about people with disabilities.  It's something that's always in the back of my mind, but I hadn't ever really thought about the proper way to approach the subject.  Ty and I have always said that we're going to be really open about our experiences and our journey with everyone, but there are still some people out there who may be uncomfortable with how to approach the subject with us.  So, I'd like to share my thoughts, my opinions and my feelings about it.  If there are other parents of SB kids, or other disabilities, you may have other opinions, and I'd love to hear them.  

The first thing that I think of is that our situation is not to be pitied.  There was a commercial here in the Cities for Children's Hospital that shows an elementary-aged girl walking with braces and a walker through her school, and the caption says: Pity - 100% Curable.  How true!!  Leah is one of the happiest, brightest and sweetest babies I have ever met.  She is exactly on track with everything an 18-month old should be doing... except standing and walking.  And who said that was the most important thing anyway?  Yes, she's been through 3 major surgeries, and we have lots more to worry about.  Yes, Ty and I went through a heartbreaking experience when we found out about her condition and we do probably have more to worry about than most parents.  But that doesn't mean anyone should pity our situation.  To be honest, the thing that has me more concerned lately is the fact that she wakes up at 5:30am and I'm freaking tired!  How many other moms (and dads, but mostly moms) out there can relate to that??!! 

The second thing that others should be aware of is that the child's wheels (or walker, or crutches, or any other kind of apparatus) is an extension of the child and should be treated as such.  Her wheelchair is not a toy.  We have let other kids "play" in Leah's zip-zac and try it out, but I question whether that was the right thing to do.  As she gets older, her chair is literally going to be a part of her, and others should be respectful of that.  Touching her wheels or trying to push her in her chair is kind of like pulling another child's hair.  For now, her wheels are off limits to others, and as she gets older we can let her decide whether she wants to share them or not.

My third point is that it's ok to ask questions.  I was at story time at the library the other day with Leah (as opposed to going there by myself, which would be a little bit creepy) and one of the other moms noticed Leah was crawling and dragging her legs behind.  I could tell that she could tell something was off, and I really liked her approach.  She made light of it and said, "That's an interesting way to crawl, why does she do it that way?"  That opened the door to my sharing that Leah has SB and she asked lots more questions about it.  I could tell that she was looking at Leah and I would have felt more uncomfortable if she didn't say anything at all and left wondering what was wrong with my child.  I think it's very normal for others to stare at people who are different.  Trust me, those who are different notice the stares.  I could feel the stares at church after Leah had her shunt surgeries, so I'm very aware of it.  As Leah gets older, she will be too.  I guess what I'm trying to say is not to pretend the difference isn't there. 

And finally, I personally don't hate the words disability or special needs.  I know some people get really upset with those words but I try not to get too worked up with what's politically correct and what's not.  Besides, they're true... she has a disability and she does have special needs.  The word I hate is the "R" word (and you all know what I'm talking about), as well as anything that indicates she's less of a person because she can't walk.  And that simply is not the case.  Treat Leah - or any other kid out there who has a disability - the same way you'd treat anyone else!

So there you go, and again, this is the sentiment that is expressed by ME.  I'm not speaking on behalf of any other parent out there (not even my husband, who may have his own opinion, though I try to keep that in check... haha, just kidding).  I welcome other's thoughts and perspectives as well!

Roller Girl

Last night we attended the Spina Bifida Roller Skating party.  It was at an indoor rink that was reserved just for our group.  We brought along Leah's zip-zac with the hope that she would get out on the rink and wheel herself around.  When we first got there, she was a little apprehensive and wanted to be held.  She wasn't too interested in getting out there with the other kids, so she sat and watched for a while.  One of my mom friends has brought her daughter's little wheelchair that she had recently outgrown (and is the same one Leah will be getting soon).  We tried Leah out in that chair and she went totally nuts!  With the help of 2 big girls she spent an hour and a half rolling around with all the other kids.  I've never seen her laugh as much and have as much fun as she did last night.  It was truly a joy to watch.  She was the youngest kid out there, though there were other little ones who were 2-3-4 years old.  Once she saw everyone else out there in their wheels, she got it.  She had never really seen anyone else in a chair before, so it finally clicked with her that the wheels will get her where she wants to go. 

 

It was also a great night for Ty and I to see some of our friends and to meet new parents and families.  At first it was kind of hard for me to see everyone in their chairs because it was another reminder that Leah will be different.  But once I saw how much fun she was having, I realized that walking isn't the only way to be happy.  And I felt such a deep sense of pride in her that at not even a year and a half she's figured out how to wheel herself around.  Ty was talking to another family whose daughter didn't get into a chair until she was around 3, which made us thankful that Leah's been in her wheels since 9 months when we got her zip-zac.  Here is a quick video of Leah out on the rink.  It was pretty loud and the lights were turned down, so the quality isn't that great, but hopefully you can see her big smile!  She was very proud of herself too!!

 

 

 

 

Working Hard

We are officially heading into our 6th month of winter here in Minnesota.  Yes, you heard me right… 6 months of winter!!  I heard on the radio this afternoon that we got our first measurable snowfall here on November 8 and we are expected to get a few inches tomorrow night into Wednesday.  I am so sick of winter!  They say that Minnesota has 2 seasons – winter and road construction.  Considering we’re having snow this week and the main street in our little town is closed for the next 3 weeks to install new sewer lines, I’d say that’s about right! 

Other than the winter that never ends, things are going pretty well around here.  I haven’t posted much because there hasn’t been much to report.  We had a very nice Easter, and Leah had a fun time collecting Easter eggs around the house.  I filled a few plastic eggs with Cheerios and puff snacks, and those kept her quite busy at church.  She has been having a lot of fun opening and closing the eggs, so I’ve kept those out.  And she looked so ridiculously cute in her little dress.  Having a girl is fun just because of the adorable clothes!

In the world of physical therapy, we are concentrating our efforts on getting her to learn how to turn her wheelchair.  We work on that in PT and also at home, and she’s starting to get it.  Just this morning she turned around with one hand and got herself unstuck from the kitchen cupboards.  We’ve also been using her stander, though not as much as we probably would should… but I think we’ll start using it more now that she really likes being in it.  The stander holds her upright with straps around her feet and knees, and then it has a vest that velcro’s around her tummy.  She really doesn’t like it, so don’t do the straps over her shoulders, but she still pulls at the ones across her chest.  So I figured I’d try standing her up without them altogether, and she did awesome.  She liked it so much more!  I have to wedge her between 2 ottomans so she doesn’t tip too far forward, and she still needs some of that support, but her upper body is really strong.  We’ve been playing catch with her new ball and she also loves playing with her toys while having a little more freedom with her arms and being upright.

Leah’s big girl wheelchair has been ordered, and the process will take 2-3 months for us to actually get it in our home.  We customized it for what we wanted and now it has to go to our PT doctor, then to insurance to process the claim, then back to the wheelchair company to actually make the chair for her.  We tested a chair for about a week and then the wheelchair company rep came out to ask what things we wanted on Leah’s chair.  As far as customization goes, we decided we probably didn’t need shoulder straps, so we got a belt to go around the waist and side bumpers to help with her balance.  All of these can be changed out if she needs more support or less, depending on her needs down the road.  Once she gets a little older, she may not need the side bumpers, so they can easily take those off.  Of course we had to pick out a fun color for the rails, and it will be a sparkly silver… subtle but still girly.  While I am very excited for this, it makes it very real that this will be her mode of transportation.  Back when we found out about Leah’s SB, I kept saying I could handle a physical disability… now that it’s here, it’s a little hard to see it in real life. 

As far as language skills goes, she still doesn’t have any real words, though she is getting better at doing a few signs.  She can say “more” and “all done” very well.  She knows please, thank you, milk and eat, but she’ll only do it when prompted.  She says mama, dada, na-na, baba and is starting to make lots of other sounds, but nothing is directed to anyone or anything in particular.  She does have lots of different expressions and makes all sorts of noises that I think mean, “oh my gosh what is that noise??!!” when she hears and airplane or train.  Then there’s the “kitty kitty kitty kitty come here right now so I can pet you” sound, and the ear-piercing screech when she doesn’t like something.  She is definitely communicating with us, just not with words, though I know that it will come soon.  It has to, they’re all right there on the tip of her tongue!

She is learning and changing so much.  It’s really fun to try and teach her new tricks because for now, she’ll actually do what we tell her.  I also love watching her work really hard, and she constantly amazes us with what she CAN do.  I’m so proud of her!

10,000 Visitors

Wow, I just noticed that we have had 10,000 visitors the blog! I can’t believe that so many people have read our story… though I’m pretty sure my mom counts as several hundred views herself. It feels like a big milestone to have reached so far and wide. I hope that we’ve been able to educate others about Spina Bifida and provide awareness to what this condition is. I also hope to show how much Leah CAN do and what happiness and joy she brings to our lives.

 

We have had a few interesting things happen lately. Last week Ty and I had a meeting with Leah’s daycare. Typically they move kids out of the infant room and into the toddler room around 16 months. With Leah they don’t see her having the mobility to move up yet. While we agree, it was a difficult thing to hear. My biggest concern is that she’ll get more proficient with her wheels and they will still hold her back because of their concern about her being in a chair. This week one of her teachers in the infant room asked what else they can do with her to keep her busy and engaged, so clearly she needs more stimulation. She also needs to be with her peers and keeping her with the infants doesn’t help with language or social skill. We agreed to reevaluate her in 2 months, at which point I hope she will be totally proficient with her wheels and can easily move to the toddler room. If not, then I think we need to look into another place that is more accommodating to children in wheelchairs. I hope it doesn’t come to that.

 

Earlier this week we got her test wheelchair. This is a standard chair, unlike her zip-zac, and we’ll have it for a few days to test it and see how we like it. She sits up much higher in this chair and it’s a lot bulkier than the zip-zac. It has the ability to expand and grow with her so she’ll have this chair until she’s about 5 years old. The other nice feature is that it has a handle so we can help steer her. The first thing I noticed when it came in the house was how dirty it got. The delivery guy rolled it through the garage and brought in lots of dirt and snow into the house. As soon as she touched the wheels her hands got dirty and she was pointing at me to clean them off. This will be interesting! It’s also going to be harder for her to get in and out of this on her own, as she’s buckled in with shoulder straps and a seatbelt around her waist.

 

Seeing this chair made everything very real to us. Both Ty and I have said that confirms that she will be a wheeler… not that we ever really thought she would walk, but it’s hard to kind of ignore that thought when there isn’t a huge wheelchair sitting in the middle of the kitchen. It means that pretty soon she’ll be wheeling around independently at the grocery store and at church, and opens up a whole new world to us that we don’t have to deal with today. Things like people asking us why she’s in a chair, or worse, just staring at us…. Dealing with rude or ignorant people… Having others see the wheelchair and the disability before seeing Leah…. Or just pretending she doesn’t even exist. I told Ty that I allow myself 5 minutes of feeling sorry for her and myself each day, so there’s my allotment for the day!