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!