Long Overdue Update

Where do I even begin??  I’ll start by saying that I’m so glad June is over!  It was a long and tiring month.  We spent most of the month worrying about Leah’s neck.  After my last post, things didn’t seem to be getting any better, and for a while seemed like she was getting worse.  She wasn’t turning at all to the left and it was obvious that she was in a great deal of pain.  There were several nights when she wasn’t sleeping at all or only slept on me, so I didn’t get much sleep either.  We finally got her back into see Dr. Marker and he was puzzled too.  Not what we wanted to hear!  And scheduled an MRI to see what exactly is going on in there.  One of the concerns was that her chairi malformation, which is at the base of her brain, was putting pressure on her nerves and causing the pain.  Of course we always worry about her shunt, and what if something else was wrong?  AAAAHHHHH!  A regular visit to our cranial-sacral therapist didn’t even seem to help much, so by this time I was pretty worried.

We finally had her MRI scheduled for July 2.  Wouldn’t you know it, the day before she woke up with a fever of 103 and was sick all day, even taking 2 naps.  We just can’t catch a break!  She woke up that morning feeling much better and we were able to go on with the scans.  We’ve done this drill before… 4 other times where I’ve held her while she goes to sleep.  But this was worse than all the others.  Maybe it was that I was just so tired or I was worried because I didn’t know what the outcome would be, but whatever it was, I had a much harder time than in the past.  I have to say, though, that she was a total trooper and charmed the pants off everyone there, even as she was drifting off to sleep.  I went to lay her down on the machine and she started crying, so I sat in the chair and held her while she drifted off.  One of the nurses blew bubbles at her and they loved that she referred to herself by her name “Leah” and got a kick of out of her teeny tiny painted toenails.  An hour and a half later, we got to go back into her room where she was still sleeping.  It was about another 15 minutes before she fully woke up and was in a pretty good mood.  She was very excited to get juice, a rare treat, and have some snuggles with us.

Then off we headed to our neurosurgeon’s office… the dreaded, dreaded meeting to see what awful terrible things are happening inside her neck.  It turned out to be nothing.  Absolutely freaking nothing!  A small part of me was almost a little disappointed that it was nothing, and I felt kind of silly for making such a big deal about it.  Our neuro was so great, though, and he reassured us that we did the right thing by getting her in.  There could be a few things happening.  First, she could have actually pulled a muscle in her neck, and it just needed a few weeks to start feeling better.  Second, sometimes the shunt tubing gets stuck or develops adhesions, which is slightly uncomfortable and not usually anything serious.  He typically sees that in kids who go through a big growth spurt (think about a 13-year old)… like growing several inches in a short period of time.  Either way, our remedy is to do some Tylenol and do massage along her neck to loosen things up.  It seems to be working because she is getting better but not back to full rotation yet.  We’re almost there!

After everything we’d just gone through, all the worrying and all the sleepless nights, I just shut down when we got home.  I was so done.  It’s amazing how quickly it hit me and I can’t remember the last time I felt so tired.  I am so thankful my parents had just got into town and could help take over for a little bit.  We ended up having a beautiful holiday weekend, celebrated the 4th and got an extra day to relax.  I have lots more to share about our fun weekend and everything that's happened in the last couple weeks.  More to come!

When Something Isn't Right

Dr. Marker comes to the rescue!  Last Sunday afternoon Leah woke up from a nap in the car crying that her neck hurt.  When we got home, she didn't turn her head to the right.  For the next couple days she complained about her neck, sometimes she said she couldn't turn her head right and sometimes she couldn't turn left.  I tried a couple times to move her head and I could tell it really bothered her.  Finally, the other morning daycare called me to say that she was really in pain.  We'd been googling her symptoms and the results weren't looking great.  Meningitis, shunt tubing issue, or worse.  Luckily, Dr. Marker's office was able to squeeze us into his busy schedule because she was in pain.  As soon as he walked into the room, he said very definitively it's not a shunt issue.  I was wondering how the heck he could possibly know that when he barely saw her for 5 seconds, but sure enough he felt her neck and said that her lymph nodes were swollen and she has tonsillitis.  Then he laughed and apologized that he probably should have said that on the phone when we talked to him.  

Leah was a trooper!  She was so cooperative when he looked in her ears, felt around her neck and she even opened wide enough so he could see her tonsils... which, sure enough, were infected.  Again, I still am trying to wrap my head around how he knew that.  We were only there for a few minutes and a huge relief came across us both.  We had packed a bag thinking there was a chance we'd be heading into the hospital that afternoon.  Nope!  Instead we got to go home and take a long nap.  Leah slept for 3 hours!!  

While we were there, Dr. Marker did say something that scared the crap out of us.  In passing conversation he was talking about tonsils and referenced his brother, who, at 70 years old, is a few years younger than Dr. Marker.  Ty and I both looked at each other in horror... Dr. Marker is in his 70's??!!??!!  No, no, no, no, no!  What are we going to do without him?  Oh the horror!  Seriously, I don't know what we are going to do without him.  What other doctor does what he does?  I can't think about him not being around much longer.  It's going to be a very sad day for us when he retires because of how amazing he is.  Not just because he knows a lot about SB or tonsillitis but because he's still "old school" and will return our calls at all hours of the day, squeeze us into his busy schedule, and give us such a peace of mind about Leah.  

Now that we are on day 3 of antibiotics, Leah seems to be doing much better.  She slept all through the night last night for the first time in a long time.  She still won't turn her head all the way, but that's more out of fear that it will hurt than it actually hurts right now.  She was very happy to go back to school yesterday and rolled into the classroom announcing, "I'm all betty now!"  Our little girl is on the mend.

What a Difference a Year Makes

It's now been a year since Leah switched daycare centers.  Her first day at her new school was the first week of June, and with that anniversary here, I am reminded of what a difficult time we had last year.  Can I just burn the memory from my mind and forget about it altogether?  That old saying "when one door closes, another opens" rings true for me in this situation.  I never would have found Leah's new daycare had we not otherwise been turned away.  I suppose we would have been blissfully unaware that we could have something better for Leah.  There are times when I'm dropping her off or picking her up when I just feel overwhelmed with emotions and I can't believe our good fortune that we ended up here.  But then I remember how we got here.   It's been a year but it's still very fresh, and is still hard to talk about it or even think about it without getting emotional or wanting to punch someone in the face (you know who you are, old daycare center director).

Even typing it here, I start tearing up as I think about last year how our last daycare... kicked her out because... of her disability.  Insert major heartbreak.  I suppose in all great stories, there is a plot twist, a conflict that the characters have to overcome, and this is just that for us.  Luckily we got the happy ending.  I just wish it didn't come with heartache to get here.  

As I think about other things going on in our lives at this time last year, it was also when we got her first wheelchair, the one she still has today.  That was a huge step for her, and for us, in a lot of different ways.  Getting a chair has given her a huge gift of mobility.  It has also given me a sort of finality that she is going to be a wheeler.  Yes, she is practicing standing and walking, but then I look at her little legs that are as floppy as overcooked spaghetti noodles and wonder if she'll ever muster the courage and strength to do it.  I guess I'll just have to wait and see.

Leah Ride a Bike

Leah got a new bike!!  Last weekend we went to a bike expo for children with disabilities.  While we were there, we ran into a few other families we knew, and one of them offered us their son's old bike.  We were thrilled because a new bike for Leah would have cost around $1,000.  Yesterday Ty went to pick it up.  They had warned us that the chain was broken, but Ty was confident he could fix it.  Leah was so excited to see it!  She loves being outside (or, out-a-side as she says) and was having so much fun riding on it while we pushed her.  Since it needed a new chain, Ty took it into the bike shop near our house and they were kind enough to put a new chain on it right on the spot. 

This is going to be a game changer for Leah this summer.  It will allow her to be outside on a bike, just like other kids.  It's a hand trike so she pedals it with her arms, and it was amazing to see that she knew exactly what to do.  She loves it!

 

Out and About

We have been pretty busy lately.  Two weekends ago we had the annual Spina Bifida roller skating party.  This was the party where last year Leah got to try out a big-girl wheelchair for the first time.  What a difference a year makes!  This year she was out in full force with her wheels and she also enjoyed the company of her own friends.  She definitely has opinions about who she likes, what she likes and doesn't like.... and she isn't afraid to speak her mind.  Thank goodness/oh my goodness!  I think the girl is going to give us a run for our money.  I also enjoyed this year for what it was.  I'm in a much better place now than I was at the last event because this is her reality, we know it and we know how to manage it.  Last year we were just at the cusp of having her in a chair and I was having a hard time picturing that this will be our life.  I was also very absorbed in watching her move around, almost as if it was for the first time.  She had been in her zip-zac a lot, but that night was really a turning point for her in terms of mobility.  It was like the light bulb went off when she saw all the other kids with their wheels, and she realized that she can do that too.  So this year was a lot more chilled out, Leah was doing her thing, I got to talk to other parents and have some fun of my own.

Speaking of the event, last year was much better attended, almost double what we got this year.  There are lots of other families here in town and these events for us are always a great way to connect with each other.  It has gotten me thinking about how to better market the SB events locally, how to get each other more connected, and how to get people to come in person.  Anyone who has great ideas, please let me know! 

We celebrated Easter last weekend with brunch, church, dinner, and Easter egg hunts.  Leah had a really fun time getting an Easter basket and filling it with all kids of goodies, especially M&M's.  They are her favorite!  This weekend has been rainy and thunderstormy.  I love it!  It means that spring is here and pretty soon I'll be planting flowers and having lots of outside time.  Leah absolutely loves being outside (or out-a-side, as she says), and we have had some nice walks outside.  She's been liking being in my back-carrier lately, which I also enjoy to get some extra exercise.  The challenge we are going to have now is that she wants to be very independent but that doesn't leave her much that she can actually do.  She can roll around on our driveway and we have a few toys for her like a basketball hoop.  Bubbles are a big hit too, and now we need to find enough things that will keep her entertained outside.  I wonder what an obstacle course would look like in our backyard?  Might be a nice thing for us to work on over the next couple weekend.

Family Vacation

We finally had a family vacation!  It was a much needed break from the longest winter ever, and we also just needed some time away.  We left on Sunday afternoon and came back Friday morning, the perfect amount of time away and then we were able to come back to a full weekend here in town.  Our vacation was in Tampa where we rented a house across the street from the ocean, just south of Clearwater.  Fun, fun week.  We got to the house on Sunday afternoon, and Leah was obsessed with getting into the water.  We had been talking about it for a while, so as soon as we unpacked we hit the beach.  Except that we weren't there long.  She did not like the ocean.  Poor little girl, she was so excited and then the waves were too big, water too cold, and the experience was too much.  As it turns out, the condo building next to us was kind enough to let us use their pool, which was much more her style (and mine too... all that sand, yuck!).  We swam almost everyday, had activities in the morning and relaxing afternoons.  

Some of our highlights include a trip to the Clearwater Marine Aquarium to visit Winter (of "Dolphin Tale" fame), the St. Petersburg Children's Museum, and a dolphin-watching boat ride in Tampa Bay.  And we also got to see my best friend Audrey and her husband John for dinner.  Leah was a little disappointed that Audrey's baby is still in Audrey's tummy and she couldn't see the baby in person.  Soon enough!

I loved seeing Winter the dolphin.  Ty and I saw the movie "Dolphin Tale" when I was pregnant with Leah.  The movie centers around Winter, a dolphin who loses part of her tail and becomes an amputee.  She gets a new prosthetic tail and becomes an inspiration for people with physical disabilities - including veterans and parents of little girls with Spina Bifida.  It was a really touching movie and ever since, I have been really touched inspired by her.  So seeing her in person was pretty amazing.  Leah and Ty had watched the movie and she knows that Winter has to wear a brace on her tail.  We got there when it was pretty quiet because there was a sting-ray feeding at another exhibit, so we had some time up by Winter's pool by ourselves.  The volunteers were amazing and came over to talk to us (Leah was in her wheelchair), and even let us hold her prosthetic tail.  Then we got to watch Winter's exercising time.  We saw the trainers put on her tail - that she doesn't wear all the time, only for a little bit of time a day - and Leah talked about how she wears braces too and goes to exercising too.  What a really special moment.  You can see all about Winter at http://www.seewinter.com/. 

We also had a great time going on the dolphin boat ride.  Leah actually really liked it and she pointed out all the dolphins we saw.  She thought it was fun to see them swim in the water and blow air out of their spouts.  She was calling the dolphins, "come here!" and "dolphins, where are you?"  Well, I should say she was yelling at them.  I hope the other passengers thought it was as funny as we did.  The Children's Museum was awesome too.  It had lots of exhibits, like a grocery store, fire truck, vet clinic, doctor's office, and climbing wall.  There were lots of other kids her age there and she had just as much fun seeing them as she did playing.  I think her favorite part of the trip was going to the bird sanctuary up the street from our house.  There were lots of birds and she liked seeing them really close.  She kept pointing at "this guy" and "that guy."  Due to the high bird traffic areas, that was not a wheelchair destination, but most of the others were. 

Leah was pretty much an awesome little traveler.  She did really well on the plane ride down to Tampa, which is about 2 1/2 hours from here.  She played with her toys, ate snacks and had a short nap.  Couldn't have asked for anything better.  We brought her wheelchair for her to use when we were outside and her zippa for in the house.  It's definitely different taking a child on vacation, and especially one who has lots of equipment.  We were able to stuff the zippa into a duffel bag, and then Leah used her wheelchair through the airport.  I don't know what I expect when we're out in public with her, but gosh we get a lot of stares.  Mostly people are really nice and a surprising number of people stop and say hello or comment on her chair.  Kids especially stare, which doesn't really bother me at all... they are curious and most kids haven't seen a kid in a chair before.  What bothers me more than anything is thinking about how we're going to handle these kinds of trips when she gets older.  Right now she's small enough that we can carry her when we can't bring the wheelchair, like on the boat.  But what happens when she's 7 or 8 and she wants to go on a boat ride?  The boat we were on would be really hard for someone in a chair.  Ty and I also like to walk everywhere and we can go 1-2 miles just to get to dinner.  Again, that might not be practical for us to when she's old enough that she doesn't want to be in the stroller.  She's already getting to the point where she wants out of the stroller if we go into a store because she wants to check everything out, see who's there, what's going on.  I want a stroller/wheelchair combo for a little older kid.  Engineers out there, please get going on that!  We also may have to adjust the type of vacations we go on as she gets older.  As she grows up, it becomes more and more apparent that the world is made for 2 feet, not 4 wheels, and that is sometimes a hard reality to face.

Thankfully, we were still able to have an amazing vacation.  All in all, beautiful weather, lazy days and a great trip away.

Here are a few pictures of our family fun!

Leah seeing the picture of Winter

 

And then Winter in person

 

You can see her tail is missing

 

Here we are with one of her braces

 

Winter having exercising time with her teacher, just like Leah does!

 

Fireman Leah, looking like Uncle Dan!

 

Pointing to the birds at the sanctuary

 

Boat ride looking for dolphins

 

Having so much fun!

 

Leah Walked

As I mentioned in an earlier post, Leah has been walking at physical therapy.  It takes quite a bit of energy and support, as she needs to be in her HKAFO's, then harnessed in, and strapped to the gait trainer.  Then her therapist manually moves her legs in a walking motion.  But she does it and she's been talking about it.  The other day she told me that she wants to walk.  So when we got to PT, she asked her therapist, "Leah walk please."  Our goal is to get to a point where she can try it without her HKAFO's to see if she's able to do any of the movements herself.  We know that she is able to move her hips, and we see a slight movement through her upper right leg.  All she needs is a little bit of strength and then her hips and abs can do a lot of the rest.  Here are a few pictures of her in the gait trainer.