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!

Home for the Holidays

We spent the Christmas holiday in my hometown this year, the first time I'd been back for Christmas in 4 years!!  It was long overdue.  Leah and I drove down last Saturday with my mom, who had flown up on a 1-way ticket to ride with us, and Ty flew down on Monday.  Then we drove back to Minnesota on Saturday.  It was an action-packed and exhausting week with the family, exactly as I thought it would be.  The 5 grandkids spent a lot of time together, and Leah had a blast.  On Sunday they decorated gingerbread houses, which was hilarious.  All the boys were pouring sprinkles and gobs of frosting on their houses, while Leah was picking up 1 sprinkle at a time.  She got a tiny bit of frosting on her finger and whined for me to wipe it off, while the boys were eating frosting and sprinkles by the spoonful!  She also helped my mom, sister and I frost Christmas cookies on Monday afternoon.  Again, she was so dainty, just barely dipping her little knife into the frosting bowl and gently putting it on her cookie.  Such a sweet girl!

One of the nights we went with my brother, sister-in-law and their 2 kids to the Festival of Lights, which is  a 3-mile drive in a park that has lots of Christmas lights.  My mom, dad, sister, Leah, and I all piled into the minivan, and met them at a parking lot a few blocks away.  Then they all came in with us so we could enjoy the lights together (and save on the $10/car fee... like a bunch of teenagers sneaking into a drive-in movie theater).  Leah loved looking at all the lights, but mostly she thought it was so fun to sit on mommy's lap in the car!  We also drove around town to see a few houses that were very, very decorated with lights.  Christmas Eve was celebrated with church service and dinner with my mom's side of the family.  Christmas Day was spent with a relaxing morning of opening presents, visiting with my dad's side of the family at my grandma's house, and then having dinner with my brothers, sister and their families.  Whew!  Insert the same crazy schedule for all of the 5 kids and it's enough to ensure a meltdown will occur (and a few did!!), but that's the fun of the holidays.  

The best part was watching Leah play with her cousins.  Bailey is not quite 5, Shane just turned 3, Drew is exactly 6 months older, and Colin is almost exactly 7 months younger.  They were all so happy to have Leah around, hugging her and sitting down with her.  She spent a lot of time in her rolling stander while we were there, which put her right at eye level with all of them.  She was right in the action most of the time too, and even got a little bit rowdy with them!  Shane even told his daycare teacher that "my cousin Leah is so pretty and uses her wheelchair to dance!"  It's just so normal to them that she's in a chair, and didn't matter to them at all.  It's important that she has people in her life who will accept her for who she is and include her (or exclude her because she's a girl, just like my brothers did to me) in their fun.  My brothers were joking that she'll never get picked on when she's around those boys.  The youngest 3 are very big for their age, and will be quite protective of her.  It made me laugh when they said they wanted someone to say something about her just to watch her cousins stand up for her.  Haha!  Yes, watch out.  You do not want to mess with the Cunningham boys!  

My oldest and bestest friend also came to town at the end of my trip.  It's really comforting having a friend who's known my more than half my life (we met almost 20 years ago... eek!!!), and even though we may not see each other or even talk often, we can still talk for hours as if no time has ever passed.  It was a great way to finish out the week.

Then we were back in Minnesota and unpacking a carload of toys and suitcases and Leah's equipment.  We took her zip-zac because it's her primary means of transportation in the house; we took her rolling stander because I knew she'd enjoy being up at eye-level with her cousins, and I was right because she spent over an hour in it several days; and we took her brand new Hip-Knee-Ankle-Foot Orthotics that we had just picked up (another post about that later) so she could get some practice with it and because it hardly took up any room.  We each had a suitcase and backpack, Ty had a workout bag and strapped his bicycle to the back, plus bags of presents, and her new foam chair, and finally a cooler and snacks for the drive.  You'd think we were going on a cross-country road trip for a month!  Ridiculous, yes but everything was necessary.  So different than the 2 of us jumping in the car with a suitcase each and maybe a bottle of water.  I think we spent more time packing and loading the car than we did actually traveling!

Leah did absolutely amazing in the car.  I could not believe it.  Before Leah, I could get there in 6:45 with 1 stop.  We stopped 3 times on the way down, one of them for about 20 minutes to sit down and eat lunch, and clocked in at 7:20.  Coming home we only stopped once to do a bathroom break and get gas, and made it in under 7.  Thanks to this awesome technology called portable DVD player, she kept very occupied.  That and having a back-seat companion to keep her company and lots of snacks made for a smooth ride.  I don't think I could do that drive with her on my own just yet, as she did get whiny at times and she's not very good at eating in the car yet (I still have to hand her things one at a time because she'll either shove everything into her mouth at once or throw it all on the floor), but maybe by the time she's closer to 3, she'll do better in the backseat by herself.  Now that she's no longer free on the airplane, I'll have to eventually make that trip alone.

Thankfully we'll have a pretty slow work week here with New Year's Day falling right in the middle of the week.  That's good because January is going to start off with a bang for us.  Ty will be traveling a little more in his job that he's been doing recently.  Then with Leah getting her new HKAFO's I want to get her back into PT in addition to the swim therapy she'll continue doing.  I think she has the will and the mind to be able to walk, and I'd love to see her get there.  I'm trying not to get my hopes up too high because it will be a long and slow road to get there.  She needs some pushing.  She's tough and stubborn and surprises us everyday!

I hope everyone out there had a very happy holiday, no matter what you celebrate!

Leah and Santa

We are 0/2 when it comes to Leah and Santa.  Last weekend our friends had their annual Santa breakfast, same as they did last year.  And same as last year, Leah wanted nothing to do with him.  She steered very clear of him and was very unhappy about sitting on his lap.  Sorry, Leah!  One day you'll look at these pictures and think they're pretty funny.  Until then, I'll look at these pictures and think they're pretty funny.

Happy Holidays!!
 

 2013

 

2012

 

Thanksgiving hangover

Happy Thanksgiving everyone!  I hope our friends and family had a great holiday - we sure did.  We actually had a great 5-day weekend, very relaxing time off.  On Wednesday we made the trek over to St. Paul to the Children's Museum.  We thought it would be fairly quiet, as it was the day before the holiday but apparently lots of other parents had the same idea, and it was a pretty full house.  Still, Leah had a great time exploring a few different areas.  She loved the play grocery store and restaurant, had fun in the light room, and loved all the water tables.  Surprisingly, a lot of it was wheelchair-accessible and she was able to do pretty much everything that other kids were doing.  It was fun watching her explore and interact with other kids.  We could have stayed there all day!  

The one downer to our holiday was that Leah had an ear infection and pink eye... though the pink eye might have just been a symptom of the ear infection because her eyes never got really gunky.  Either way, we headed right into the pediatrician's walk-in clinic first thing Friday morning and got her on an antibiotic and eye drops.  She had been really cranky and fussy all week, which I thought was teeth.  Insert mommy guilt.  Now that she's been on medicine for a few days, all is well.

Today we transitioned her room into a big girl room.  We got some new window coverings, replacing the navy blue fleece blanket that had been hanging on the window for 2 years.  Yep, we stay classy in our house.  Then we changed out her crib into a toddler bed, which she had fun playing in until bedtime.  It will be a little adjustment for her, but it means that our baby is growing up.

In other news, 2 weeks ago we got Leah fitted for her Hip-Knee-Ankle-Foot orthotics (HKAFO's).  It was actually a pretty lengthy process where she had to be casted all the way up her leg and her lower back.  The orthotics will have a brace around her lower back and hips, and then braces down her legs.  It will have a hinge at the hip and at the knee.  The entire process took about an hour, and they should be ready in a month or so.  I am very excited to see how she takes to being upright and learning to walk.  

That's all for now.  We're looking forward to Christmas!  This year is going to be so much more fun at her age.  So far her favorite thing is the nativity set and baby Jesus.  She loves babies and likes holding the baby and putting the baby in with the baby's momma and the baby's dadda.  This will be a fun holiday!

Clinic Update

Last week we had our 6-month Spina Bifida check-in appointment.  We started out in Radiology, as usual, for a renal ultrasound (which checks her kidneys and bladder), and then she had a few x-rays of her shunt and tubing.  We then went right over to SB clinic, which was unusual because we normally see our neurosurgeon team.  This was the first time we did not need to see them because she now goes every year.  At our last appointment in June, our neuro team told us that she was doing very well and he didn't need to see us for a year.  It was pretty weird not going there, and it is a little bit scary not having the security of having a special look at her shunt.  We got so used to going there a lot last year that it was also nice knowing that things inside her little head are going pretty well (**knock on wood**).  

At SB clinic, we learned that her renal ultrasound showed 2 very healthy kidneys and a healthy bladder.  The #1 goal for the last 2 years was keeping everything healthy and we have achieved that goal!  We are now starting to talk about what's next.  She can't stay in diapers forever, but since she does not have any muscle tone in her bladder, she won't be able to potty train normally.  Over the next 2 years we'll start to work on a bathroom management program for her to achieve our next goal, which is for her to be dry and clean by the time she gets to kindergarten.  

We also talked to Dr. Marker about starting to get Leah in Hip-Knee-Ankle-Foot orthotics (HKAFO's) and eventually help her learn to walk.  We have an appointment tomorrow with the orthotics company to get her fitted.  Similar to how her AFO's went, it took about 6 weeks for them to be made.  We will also look at getting her back into physical therapy early next year once her new braces come in so she can get some time in them.  Very exciting things to come with Leah's mobility!

Saturday was the 1-year anniversary of Leah's shunt.  I can't believe it's already been a year that we got a call from daycare that all was not well with Leah, and then we found ourselves having her first shunt revision the following day.  I remember how worried we were last year about her shunt, and when it finally failed, neither of us were surprised.  We were very scared and upset, but not surprised.  This year has been a different story.  Thankfully, things seem to be working quite nicely with this shunt, and we've been at the same setting since getting it replaced.  Getting past the 2 year mark is a very good thing.  Our doctor told us that a shunt failure in the first year is almost a guarantee, and we beat the odds simply by getting to 1 year.  We also feel very fortunate to have now made it to 2 with very few issues, and I'm hoping and praying that this shunt will stick around for a long time.

Fall

Where do I even begin?  I feel like since September we've been going-going-going, which is why I haven't spent much time updating the blog.  Leah's bedtime has crept later and later, and even with the time change last week she's still going to bed around 8:30, which is quite late for her (and me!).  It's hard to get much done in the evenings.  By the time I shower, make lunches, pick up the house and wipe down the kitchen, it's time for me to go to bed, and I haven't had much of an interest in keeping up with the blog.  We've been busy but not doing anything really significant.  Life is just.... well, life. 

October was Spina Bifida Awareness Month, and I didn't really get a chance to blog at all about it.  I just realized that I only did 1 post in all of October.  Other than her physical mobility challenges, we don't have a lot going on that is SB-related right now.  I know that's something that families deal with a lot of times in spurts, and we're fortunate that we're kind of in a lull right now with her.  We were done with Physical Therapy back in August and started up with swimming a few weeks ago.  She's going twice a week, once with us in a baby and me class, and once with a personal 1:1 instructor.  Her core strength needs to get better because eventually I'd like for her to be able to sit unsupported, or at least be a little more stable than she is right now.  It's hard for her to be on the floor unless she's laying on her tummy or sitting in someone's lap.  Sitting up will help with her independence and allow her to be more interactive with toys and other kids.  Otherwise, everything else indicates that she is exactly where any 2-year old should be in terms of fine motor skills, language, cognitive ability, and socialization.  She is a happy little girl who loves interacting with kids, and she is very interested in the world around her. 

At end of October, I spent a few nights working on her Halloween costume.  We had come up with the great idea of dressing her up as a train.  She loves trains.  We live close to the tracks that run through town and she gets excited every time she hears the whistle blow.  It's really cute, she makes the train sign with her hands (which is tapping your index fingers together to make an X).  What started as an elaborate idea turned into a project... one that we actually had to finish.  I sometimes don't always follow through with my great ideas, but this was really important and something really special for Leah.  Ty picked out a box, cut it to fit her chair, and made sure it was the right size.  I painted and decorated it, which took up a few of my evenings.  We had to have it done the Saturday before Halloween because we were doing a trick-or-treat event here in town.  I think it turned out pretty great.  She was the hit of the event.  Then we went out on Halloween night with some of our neighbors who have 2 little boys and hit a few houses on our block.  Leah got such a kick out of getting to pick out a piece of candy.  She wanted to be holding candy at all times.  Too cute.  Here she is all dressed up:

 

 

 

We also had her 2nd birthday party yesterday.  It was a lot of fun, and she got some great new toys (which she quietly played with for a half an hour!!!).  She likes playing pretend, so we got her a kitchen and grandparents filled in with food and dishes.  That's a big hit right now.  Literally, she was making tea for me earlier tonight.  It's so fun to watch her be more independent and play well by herself.  It's little things like that that remind me she's not a baby anymore.  As I was looking at pictures of her over this past year, I can see that she's lost the baby look, and she looks more like a kid.  I just can't believe 2 whole years have passed since we first met her.  What a journey it's been!

Here are a few fun pictures of the celebrations with our 2-year old:

 

 

Last year I started a tradition of taking a picture of Leah and us holding a picture from the year before.  Here are this year's and last year's pictures:

1 year old

 

 

2 years old

 

 

 

Well Leah might look a year older but Ty and I look the exact same age!!  Funny how that works ;)

Happy Birthday, Leah!

Leah is 2!  Happy birthday to our sweet baby girl, who isn't really a baby anymore.  We had a very fun day.  We went to church in the morning where she pointed to all the babies, then came home and had lunch and a nap, followed by a party with her grandparents.  She was spoiled with gifts, as I totally figured she would be, and loved every bite of her chocolate pudding birthday pie.  Yummy!

I know I haven't been very good about updating our blog lately, as I've been reminded lately by several people.  I will try to do better, as I have lots of updates.  Her 2nd birthday party, Halloween, school, and all the learning she's doing lately.  I just got the birthday girl to bed a few minutes ago, so check back later for more.  Cheers!