She's Walking!

All over the place.  It's so awesome to see.  It's been 3 weeks now that she started and we haven't looked back.  There have been a few falls, some near-misses, and several slips, but none of that has set her back.  I am so incredibly proud of her spirit and determination, I just can't hardly stand it.  It's been so amazing.  To think back when we found out she'd have Spina Bifida, and where the lesion was, I never believed that this was possible.  It was always a dream, always a hope.  To see it happen in person is one of the best feelings. 

She had been asking to walk at school, and she's been talking about it with her teachers.  Finally on Wednesday I decided to bring it in.  I wanted to make sure she was steady enough to have kids running all around her and maneuvering through the classroom.  She was so excited!!  I showed them how to put on her braces, and she had the biggest smile on her face when I stood her up with her walker.  All the teachers were there, and a girl from the office came in to take pictures.  It was a pretty special moment.  The kids leave the classroom at 8:00 to go to the nearby gym to play for a while, so Leah got a head start walking over there.  As we were walking there, I heard a couple of the teachers talking about ways they could slow down the walk to the gym with the rest of the kids so Leah could keep up.  Maybe they could tippee-toe or walk backwards so she can be part of the group.  Not for every time, but this would keep her with her class.  Again, reason #103 that I absolutely love her school.

We have taken a trip to the library in the walker and now to school, but we haven't ventured out other places yet.  Logistically, it's a little more difficult.  Her braces aren't very comfortable to sit in for long, so I can't put them on her at home.  When we did the library, I did and she wore them in the car, but we only live a few blocks away.  Still, she complained that they hurt.  Once the weather warms up, it will be easier to put them on her when we get somewhere and I can let her walk across the parking lot.  It's still quite cold here.

I have added another video to the site.  This one is from the very first day walking. 

Video Proof

Leah is getting better and better with her walking.  It's all she wants to do, she's so motivated!!  It's going so well that I'm taking her braces and walker to her school tomorrow.  I'm a little nervous about having her walking around all the other kids because she's sometimes a little unsteady, but I suppose this is the best way for her to learn.  I can't wait to hear how the day went.

I've been trying to upload some videos here, but I can't load videos more than a couple seconds long.  I'm going to attempt to share a Shutter.fly site where I was able to load videos and a few pictures.  On the site, there are 2 videos: the first is from September 2013 when she first got the walker.  It's a super cute video where I ask her if she's going to walk someday and she nods.  The other is from just the other day.  It's amazing how much better she is even since then.  

Enjoy!

https://leahmoments.shutterfly.com/pictures 

And Just Like That

Well, friends, we have a walker!  Just like that, she went from standing to walking.  And by just like that, I mean it took her less than a week to figure it all out.  I am completely amazed and can't believe it.  With most things, I thought - and usually expected - that she would eventually figure it out.  Sitting, rolling, crawling, even wheeling all happened later than I expected, but she still did them.  Walking was something I honestly never thought I'd see... not because I didn't think she could do it, but because I couldn't imagine how it would happen.  

Leah has absolutely no feeling or movement in her legs, from her hips down to her toes.  She needs a lot of help and bracing to stand up.  When Leah was 1, she got a stander so we could get her upright.  A few months later, we got her into a rolling stander so she could roll while standing up.  We also borrowed a walker from friends, and stood her up in her stationary stander while holding onto the walker.  I have a video of her doing that; when I asked her if she wants to walk someday, she nodded yes.  We kept pushing on, last year getting her braces that went from her hips to her feet.  She mainly used them to stand and fall.  Falling, not walking.

Just about a month ago, we started doing stander time every night after dinner.  For a long time, she's been hit or miss with the rolling stander.  She complained a lot about getting in it, though I'm not really sure why, so she hadn't used it must.  But recently, by bribing her with chocolate, she's been much more interested in it.  She realized that she could reach the drawer with the "Leah bites" and we let her have 1.  Then she realized she could reach the light switches in the dining room.  That was fun!  So finally, after all that... the stander, the walker, the rolling stander, and the falling... she was ready to walk!

It happened so fast.  Last Sunday night, Leah was in her braces holding to her walker and doing her falling.  I asked her if she could move forward.  She kind of hopped.  Then she did it again, and all of the sudden, she was hopping a few feet ahead.  And again into the kitchen, across the dining room and back.  Monday night we did more walking, more on Tuesday.  I took her to the library on Friday and she walked for an hour and a half.  At first I had to move her walker for her, but now she has that figured out too.

The way she does it is by pushing up on the walker and swinging her body forward.  She is a bit of a daredevil and likes leaning really far, so we have to remind her to be careful or she'll fall.  It's a slow process right now, just like it was for her to learn, but she's here.  She's walking!  The other night, she told me she wanted me to chase her around the kitchen.  Chase!  

This has been an incredible week.  Leah has certainly done everything in her own time, and now this opens up the world to her in a whole new way.  Maybe someday she'll be using forearm crutches and walking around as her primary mode of transportation instead of using her wheelchair.  Or maybe this will be fleeting and the walking will only last for a little while.  Either way, it doesn't change what she's done this past week, or how proud I am of our girl.  She continues to amaze me with her spirit and determination.  

We have lots of pictures and videos that I'll be posting soon.  

Happy New Year!

Happy New Year!!  Welcome to 2015.

2014 was a pretty darn good year for us.  At least up until the last 2 weeks of it.  In mid-December Leah was sent home from school because she threw up.  We spent the rest of the weekend with her having a bit of a fever, and then a little over a week later we finally figured out that she had a UTI.  This was after a couple more days of throwing up, staying home from daycare, and getting a call during my Christmas party to come home.  Ugh!  We had had a pretty good run with no UTI's, and I'm not quite sure why it happened again, or why it had to be during a busy time for both of us at work and in between a record number of Christmas parties, but we got it figured out.  

We also had some big changes last month.  I changed my day off at work from Tuesday to Friday, which will actually be really nice.  We decided to take her out of daycare on Friday and instead of putting her in on Tuesday, we got a nanny.  The first couple weeks were a little rough when she came and I had to leave for work, but now Leah loves her!  She is wonderful and they have so much fun together.  It's nice to have a little variety to Leah's week.  Leah officially stopped going to daycare the first Friday in January; I adjusted my schedule in mid-December, so I had 2 Fridays off.  It was amazing!  And totally worth it to take 2 days, one right before and one right after Christmas.  I was able to finish buying presents, grocery shopping, and doing other errands to get ready for, and then cleaning up after Christmas.  It was so nice, I'll have to remember to do that more often... taking a day for myself to get things done.  Just a few hours makes a big difference!

Speaking of Christmas, it was awesome.  Last year Leah wasn't very into it and she didn't really know what was going on.  This year was so much fun!  She totally got Christmas, or started to get it.  We did our annual Santa breakfast again this year, but I couldn't convince her to sit on his lap, and I didn't want to traumatize her for the rest of her life, so we just sat next to him and talked for a while.  She told me afterwards that Santa's not scary!  But she did get a little confused about Santa coming to her house - she thought he would come during the day and hand presents to her.  She didn't realize he comes at night when everyone is asleep.  On Christmas Eve she helped me put out Christmas cookies and milk for him and we checked under the tree to see if there were any presents.  The next morning I asked if she thought Santa had come yet, and she said no, he was coming later.  I loved the surprised face she made when she saw that his cookies were eaten, and then she was even more excited when she saw all the presents!  It was so cute!!  After she opened each present, she wanted to play with the new toys, but she had more to open.  It a lot of fun.

We celebrated New Year's Eve at our neighbors' who have 2 little boys.  The kids had fun with their hats and noisemakers and we were all home and in bed by 9:30.  Thank goodness!

In all, 2014 was a great year for us.  Leah's mobility grew this year, as did her vocabulary.  We had 2 really fun vacations - to Tampa in April and Newport Beach, CA in October, and several trips back home to visit my family.  I started out the year with an awesome long weekend to Disney World with my 2 girlfriends.  We are looking forward to all the things to come in 2015!

Battling UTI's

I mentioned in a previous blog that shunts and bathroom stuff are the 2 topics most discussed with SB parents.  Now it's time to talk about the bathroom stuff... well a little bit anyway.  Leah has a spinal cord injury, and with all people who have spinal cord injuries, she doesn't have full feeling or control or function of her bladder.  This is because the bladder and bowels are controlled by your very lowest vertebrae.  When there is an injury to the spine, everything below that injury spot is damaged, so a higher injury means more parts of your body will be affected. 

The bladder is a muscle.  Like all muscles, it has to be trained and taught how to work.  In a normally functioning person, you drink water, the bladder flexes to hold that liquid in, and you then contract the muscle to push the liquid out.  In a person with a spinal injury, the bladder will act in 1 of 2 ways:  either it will always flex to hold liquid in, or it will be limp and always allow liquid to seep out.  When it's the former, the liquid can back up into the kidneys, causing reflux and damage.  When it's the latter, the kidneys will stay healthy but the person will always be leaking.  Both situations are a no-win for someone over the age of 4 who wants to be socially dry.  Luckily, there are options available for people in both situations to control the bladder.

Both situations also mean that UTI's happen frequently because either way, the bladder doesn't empty itself fully.  When urine stays in the bladder for too long, bacteria grows and infects the bladder and urinary tract... hence, Urinary Tract Infection.  Even the tiniest, tracest amounts of urine can cause a UTI.  UTI's cause a host of symptoms, like fevers, vomiting, lethargy, and can be painful, even in kids who can't fully feel the sensation of having to pee.

Leah's first UTI was last March.  She spiked a fever, she was puking, and overall felt really awful.  I could tell that she wasn't herself.  I had remembered Dr. Marker telling me how common UTI's were and his nurse had given me a kit to take a urine sample, and a prescription antibiotic to start her on if she showed symptoms.  That started an 8-month cycle of UTI's that went something like this:  get a fever, puke, and be sick... send in a sample... take antibiotics for 10 days... be healthy for a few weeks... get another fever, puke and be sick.  This happened almost like clockwork every 4-6 weeks.  6 UTI's in 8 months.  I wanted to puke!  

During this time I was trying all sorts of home remedies, giving cranberry juice and slathering coconut oil all over her bottom.  Every month she still got one.  And every month she had to be on antibiotics.  I don't like having to give medicine as it is, so going on her 6th round of meds in as many months was really upsetting.  That's when our cranial-sacral therapist told me about an unusual remedy for UTI's... that actually worked!!

Now I use Shak.lee's Bas.ic H cleaning solution in her bath water.  It's a regular, home cleaning product that I found on amazon dot com.   The way it works is that it makes the water lighter than water, or in other words, more slippery than water.  It cleans out the bladder and urinary tract and empties the bladder of any leftover urine that's been sitting in there before it can get infected.  It has absolutely done wonders for Leah.  I put it in her bath at least twice a week, and in the mornings after I use it, her diaper is really full and stinky, so I can tell that it's working.  Her last UTI was over a year ago.  

I'm sharing this in case there are other parents out there who are battling with this like we were, and can at least give it a try.  Around the time of her last UTI, I started to think that we can't go on like this anymore.  She couldn't be on a path like this, where she's constantly sick and on antibiotics.  It just isn't good for her, or us.  I was thinking that we'd have to start the process to catheterize her, and I just wasn't ready for that.  Now, we still don't, and her scans show that her kidneys continue to be in good health, so what we are doing is working.  Now that she's 3, it is time to start thinking about getting her out of diapers, but now we can do that on our time, when we feel that it's right, research all our options and fully understand what that means.... and not because her health was on the line.  

2nd Shuntiversary

It was 2 years ago today that Leah got her current shunt.  You can read all about our first shunt experience, which seems so far away now.  Even though it's a distant memory, the topic of her shunt is one that I think about on a fairly regular basis.  It's brought up in casual settings, like when I'm combing her hair and I can see and feel it.  I think about it anytime she seems a little off, whether she's a bit distracted or tired, or overly cranky.  Anytime she pukes, it's the first thing that comes to mind (which thankfully, hasn't been an issue lately - but she does have an overactive gag reflex, so it's more common that you may think.  ((PS, someday I'll have to share the story about my birthday dinner)). ) 

Her shunt is an important part of her life, it's a necessary evil, if you will.  It keeps her alive and functioning like a normal 3-year old, but it also has no mercy and can stop working at any time.  The most talked about topics among any SB parents are shunts and bathroom programs... and ironically enough they are both shitty topics.  

How do we monitor her shunt?  In the beginning, she was getting regular head exams to see if her ventricles were still the same size.  For the first 18 months before her soft spot filled in, we could do that with a simple ultrasound.  It was a bit gooey, but very simple.  After that, we had to spend 5-10 horrific minutes strapping her into a machine to take X-rays or  CT scan or a rapid MRI.  OH.MY.GOD.  If you ever think 5 minutes goes by fast, you haven't sang Twinkle Twinkle or the ABC's over the deafening screams of a toddler plus the whirling and whooshing sounds of an MRI machine.  Those scans are then read by Pete and Dr. Nagib and Dr. Marker to make sure they look how they should.  Pete is able to bring them up on the computer, and he can clearly show us how they look compared to last time.  At first I was totally pretending that I knew what I was looking at when it just looked like a big blob.  Now, though, I can actually make out the ventricles and see pockets of fluid.  Her ventricles will always be a little bigger than normal, but what's important is that she is able to handle that little bit of extra pressure, and it has just become normal to her.

What is the shunt doing?  Well, the shunt is draining out the excess spinal fluid out of her head.  Everyone produces spinal fluid that surrounds the brain and carries messages throughout the body.  In a normally functioning person, that fluid is able to go down the spinal cord and into the body.  Leah's spinal cord is broken, so creates a dam and the fluid backs up into her brain.  Think thawing rivers when downstream is still frozen.  There's nowhere for all that fluid to go, so it causes severe brain damage.  The shunt can detect when the fluid is getting too high, and signals the valve to open and diverts the fluid down the tubing into her abdomen.  

When do shunts fail?  Whenever they damn well want to!  Seriously, I have no idea.  They do because they do.  And they work because they work.  Luck?  Prayers?  Skilled surgeons?  Yes?  no?  ... or maybe something else altogether.  We just don't know.  We are fortunate that in almost all cases a shunt failure isn't an emergency.  In fact, most shunt failures happen over a long period of time when signs are very faint, and over time become more apparent... and then you look back and think, oh so that's what was going on!  

When I think about 2 years ago, it seems far away, but it will never escape me that we could be right back there at a moment's notice.  I wouldn't say I think about it all the time, but whenever I see a call from daycare, or notice that she's acting weird, or just think that we've had a little bit of good luck lately, I get that feeling like it's going to happen again.  This shunt, it causes me a lot of headaches, but it prevents them in Leah.  I suppose that's a fair trade-off.

Birthday Pictures

Here are some fun pictures from the birthday girl's party.