Go Baby Go

There has been a lot of research showing the link between mobility and a child's development in other areas.  Young children who have mobility impairments are at risk for developmental delays in other areas, like language, social, cognitive and fine motor skills.  This is why it is very important for kids who have motor limitations to find ways to become mobile.  If you've ever watched toddlers, you see that they move constantly... everything is something new to explore... and all that exploration is how young kids learn.  Given Leah's  physical limitations, we have always tried to help her be mobile in her own way.  All of her wheels have given her this mobility.  However, there is one place she has a hard time... outside.

Earlier this summer our neighbor brought us a magazine from the University of Delaware, her alma mater.  In it featured a story of how the U of D is collaborating with engineers to provide mobility for kids with physical disabilities.  The story was about a little boy who had cables and wires all over his house so he could move freely throughout.  There were hanging cables from the ceiling going into every room and he swung from room to room.  Awesome!  We started looking more into this, and found out that it was the work of U of D's Go Baby Go department.

In 2006 a pediatric researcher launched the Go Baby Go program, and they are helping to give the gift of mobility to kids by modifying off-the-shelf power cars.  On a whim, I posted to their site that we are based in Minneapolis and would love to get in touch with someone to help modify a car for Leah.  As fate would have it, there was someone here in Minneapolis checking the Go Baby Go site at the same time and contacted us to help make this car.

Bridget works for an organization here called PACER.  PACER is a non-profit whose mission is to help parents of children with special needs to be an advocate for them.  Bridget had just recently attended a conference at U of D and was interested and excited to make a Go Baby Go car for a child... she just needed to fine one!  

Over the past several months we have met with PACER, picked out a car, and had several fittings in the car.  We chose a John Deere tractor, which she will be able to grow into for several years, and an engineer donated his time to rewire the pedal from the foot up to the steering wheel.  They also added a seat belt and straps to keep her feet secure.  Finally the other day it was ready for us to pick it up.  She did awesome!  And loves it so, so much.  It has been great for her to be outside in the yard and driving up and down the street. 
 None of it would be possible without the kindness and generosity of PACER, and we are so grateful that they chose to work with us.  Here are some pictures of her enjoying her new Go Baby Go.

 

Shake It Off

Enjoy this great little video of kids with Spina Bifida.  You won't see Leah in it but we recognized lots of her friends!

https://www.youtube.com/watch?v=LLUTCix-gog

October Is...

Spina Bifida Awareness Month

While breast cancer and domestic violence and bullying tend to get a lot of attention this time of year, it's also SB Awareness Month!!  

I have been totally behind in posting during this most important month!  October just kind of snuck up on me and then all of the sudden it was here and we were on our way out of town for a family vacation.  We had the most awesome time in Newport Beach, CA, where we rented a house for a week (more about our trip later).  In the meantime, all my SB friends have been sharing their stories and posts, and while I have thought about it, I haven't shared much.  Even so, it is an important time to spread awareness and the hope for inclusion.  While I don't have much to share at this moment, I will use the rest of the month to share my side of the SB story.  

Keep Calm, Wheel On

Huge, Amazing, Unbelievable News!

Summer is over!  That is big news here in Minnesota.  Leah is doing great!  That is even better news.  And that is pretty much the extent to what's new around here.  Seriously, we have been really busy doing nothing, and our huge, unbelievable news is absolutely nothing.  June was kind of a disaster with Leah's neck issues, which continued well into July.  In mid-July she had another appointment with her cranial-sacral therapist, who worked on her for 35 minutes (normal appointment is 20).  It turns out that Leah had started to get torticollis, which is a condition that happens when the neck is out of alignment.  It's really common in babies but Leah had favored one side over the other for so long that her entire neck and spine got out of alignment.  Angel to the rescue!  After a long appointment and another follow-up 2 weeks later, and Leah is back to normal.  

Then all of the sudden it was August.  We walked down to the lake a lot, had a lot of ice cream and icy-pops, and played in the water table.  My brother and sister-in-law came to visit with their 2 boys, who Leah loves!  We went on a trolley ride, to the zoo, and shot off fireworks in our backyard.  The other weekend was the Spina Bifida Walk-Run-Roll.  This year we opted not to walk/run and instead just played on the playground.  It felt a lot less rushed and we were able to spend more time visiting with other families, which is my favorite part of the event.  The other great thing is comparing equipment.  Leah tried out a bigger wheelchair, which was much better than what we currently has.  Hers is smaller and very heavy, and this one is much lighter, so much so that she was able to roll up a slight incline... something she can barely do with her chair.  This one also sits her up higher and the seat is tipped back slightly so she wouldn't need a chest strap.  Yes, her current chair is fine, but we want her to be in something amazing.  We'll be trying to get her into something new in the next couple months.  

In other mobility news, we are also in the process of working on getting her a Go-Baby-Go car.  Go-Baby-Go is an organization at the University of Delaware.  The program is based on the need for kids to be mobile, and helps adapt devices to help children who have mobility challenges.  

http://www.udel.edu/gobabygo/ 

There is a lot of research showing the link between mobility and brain development.  Kids who aren't mobile aren't able to explore and socialize the way normal kids can.  That's why mobility is so, so important, and why we push and push for Leah to have mobility.  A few months ago we posted on the GBG page asking if anyone in Minnesota would be willing to make a car for Leah, and surprise! we got someone willing to help.  Just this morning we saw the car, which is a John Deere tractor (a pint-size version of what Daddy has), and it needs to be modified for her.  She needs a seat belt and the pedal will be moved up to the steering wheel.  Hopefully we'll have it soon, before the snow falls, which could be any day now.  

While we have been having a great summer, there was sad news for friends of ours.  They lost their little boy a couple weeks ago.  Lincoln passed away from complications of his epilepsy and cerebral palsy.  We actually ran into them a few months ago at the bike expo and what a sweetheart he was.  Big smile, bigger heart.   Please say extra prayers for them, and hugs your kids extra tight.  Life is precious.

Yes, yes, I know I've been a little negligent with the blog lately.  I have been reminded by more than a few people.  I can't promise anything but I will try to post more updates.  I have a number of pictures from our summer adventures that I want to add.  

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.