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!

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.