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!

We're Still Here

Gosh, it has been a really long time since I've posted anything new…. Almost 3 weeks!  I’m so sorry about that.  The day after I posted my last blog, Leah was sent home from school with a fever, and it turned out that she had another UTI.  It was one of those things that I was just kicking myself because she had thrown up twice earlier that week, which is usually a sign that something is not right.  We brushed it off, but I should have known.  We started her on an antibiotic Thursday night but she was still feverish throughout the weekend, and really clingy and we could tell she was not feeling well.  There was a point when we were debating whether or not to take her into the doctor because we were really worried, thinking it was maybe a shunt failure.  Dr. Marker assured us that it’s probably a UTI and to come in if her fever hit 104…. Thankfully it never did and she was starting to feel better after a few days of antibiotics.  It made for a few long nights for us, as she wasn't sleeping well, and there was lots of worrying on our part.  I’m happy to report that she’s made a full recovery and is now doing great. 

Her being sick put us back into an old habit with regards to sleep.  I’m a bit embarrassed to admit this but we haven’t had a really good routine when it comes to getting her to bed.  We were very good about sleep habits until last winter when she had shunt surgery, followed by a cold and then the flu and then teething, and all of the sudden it was summertime and now it’s fall, and I’m still rocking her to sleep every night.  When she wakes up in the middle of the night, I bring her into bed with me.  The night waking didn't bother me, until it started happening almost every other night, and happening earlier and earlier in the evening, at which point I was going to bed at 8:30/9:00 with her.  It finally came to a breaking point with me last week when I decided to put her down awake have her fall asleep on her own, and after several nights of her taking over an hour to fall asleep, I was done.  If you've ever read the book “Go the F to Sleep” you know what I’m talking about.  If you haven’t read it, please find a copy.  It’s hilarious and depressing at the same time.  There is something to be said about sleep deprivation. 

Anyway, I’m not asking for sleep advice, I don’t want sleep advice, this is something that we need to figure out in our house what’s going to work.  I was laying awake the other night thinking about it, stressing, feeling overwhelmed and frustrated and ready to scream or cry or leave on a long vacation when I realized something.  I’m freaking out about sleep.  Not her shunt.  Not tethered cord surgery.  Not how I’m going to pay for piles of medical bills.  Not about sending her into her 10^th surgery.  Not about how I have to think about quitting my job because she has too many appointments.  Not because we can’t find good childcare for her so I can continue working.  NONE OF THAT.  Because my little girl is FINE!!  I’m thinking about something that is fairly trivial, at least in the grand scheme of things when it comes to having a daughter with special needs.  And that, my friends, is when I finally got some sleep.

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!