Unanswered Questions

So it’s October again, which means pumpkin spice and all things fall.  It means cooler temperatures, and anticipation of holidays to come…It means football teams rocking the hot pink again.  These are all good things!  Several medical conditions are actually observed in the month of October, but one hits closer to home for me…

 

October is Spina Bifida Awareness Month.  And if you know my family, you probably know my little girl, Maddie.  She is 6 years old, and was born with Spina Bifida.   There are lots of things I could tell you about Maddie…the things that I think make her special, but those may not be the things you re wondering.   I find that as we get older, it becomes harder to communicate without fear of ignorance or offense.   I get it.  Children are so honest and innocent, and I envy that.  I love how they can easily ask Maddie why she wears braces, and she can just as easily answer…and they move on.  How simple.  It can be more complicated for us…So I thought I might try to simplify it for you. 

 

In honor of October being Spina Bifida Awareness month…Here are the questions you always wanted to ask me, but never did.

 

1.  What is it?

Quite simply, Spina Bifida is an interruption in the development of the spine.  Maddie’s happened in the lower lumbar region near L4.  This means her spine was open in an area that should have been closed…think of a zipper that got off track and left an open area once it closed.  Everything below that opening is affected, and may not function properly.

 

2. Why does she wear braces?

Once you know the answer to #1 you can understand the answer to #2.  Everything below the opening is affected, so, in Maddie’s case, everything below her knees is very weak, and her feet, ankles, and toes have very little movement.  The braces give support where her muscles just can’t. 

 

3. Is it Permanent?

Yes.  There is no cure for Spina Bifida, and she will most likely always need bracing to walk…Having said that, Maddie gets around better than we ever expected, so we are incredibly grateful for those braces.  They make shoe shopping really awful, but my girl can run.  Nuff said.

 

4.  Will it get worse?

No.  The areas that are affected will always be affected…no more, no less.  However, SB comes with a whole gang of issues that are not mobility-related, and these can always get complicated and pose extra health concerns.  Maddie has a shunt that keeps fluid from building around her brain.  Any time this acts up it gets serious real quick.  The other side of SB that nobody likes to talk about involves bowel/ bladder issues.  Basically, the muscles needed to help those function properly are not working, which can cause major issues for bladder, kidneys, and so on.  Catheterization and bowel programs have been helpful, but this area is the biggest challenge for us, and most families living with SB. 

 

5.  Why does she have it?

This may be the hardest question to answer, because I honestly don’t know.   There is no known cause for Spina Bifida.  It affects about 1 in every 1500 pregnancies. Clearly, Mason is healthy, and I did nothing different for either pregnancy.  We do know that taking 400 mcg of folic acid can reduce the risk, and I encourage everyone to do so, but many of us were on prenatal vitamins, so there’s no guarantee.  And it’s such a touchy subject, because if there is anything at all any of us could have done differently to keep our kiddos healthy, we would have.  Trust that.  It’s a random thing, and Maddie is my 1 in 1500. 

 

So that’s it…Those are the questions I get asked the most, and the least.  I hope this helps, and I hope that, in the future, you feel more comfortable asking me questions.  I'm an open book.  If I could leave you with one thing remember this: Spina Bifida is a permanently disabling condition that affects every aspect of our lives, BUT it does not define my family, or Maddie.  We’ve learned to live with it, and factor it into our daily routines.   Beyond the month of October, you won’t hear much about SB from me.  It’s a conscious decision that I’ve made to keep our lives as normal as possible.  I want people to see beyond the braces, and see Maddie for who she is, and all the incredible gifts that she has to offer…and more importantly, I want her to see herself the same way. She is an amazing, smart, funny, completely capable little person…who doesn’t just get by, she thrives. 

 

 

Please consider sponsoring Maddie for the Spina Bifida of Greater New Orleans
bowl a thon...Thanks!
http://www.firstgiving.com/fundraiser/selina-gilliland/9th-annual-ghost-bowl-a-thon

A Rainy Recap...

It's raining here...a lot.  And its the kind of stir-crazy, can't-leave-the-house rain that causes one to do unexplainable things....like scrub the shower tile, and update the blog for the first time in over a year.  Crazy.  I know.
I blame facebook...for all of it really.  Except the rain.  See the facebook memory button sent me a post I had written 4 years ago today, about a sweet little chunk, enjoying a picnic in her shiny, new walker.  I had to read it.  The picture of those pigtails sucked me in...it had been so long.  Seems like a lifetime ago really. Seeing my girl working so hard for every step, and remembering a time when so much was uncertain...I could hear it in my own words.  Such pride at how far she had come, and an ever-so-cautious hope that the next year would be better.  And it was.  Every year that we go back is a reminder of how far she has come.  Last year I watched her climb the hill all by herself, and run down it, as fast as those little legs would take her...I probably didn't post it here, and I should have.  Not just for those people out there looking for answers and hoping the best for their little ones, but for me too.  I need to be reminded where we started sometimes, so I won't take it for granted where we are now.  We'll go to that picnic again this month, and I'll post it this time...swear.
As I said before, it's been over a year since I've blogged, and taking a quick look at all the links of my friends, I see I'm not alone in this.  Its both good and bad, I guess.  It means we've moved on.  Blogging is such a strange thing... It's a journal, really.   In it's most honest moments, it's a journal...of raw, rambling thoughts and pictures, that are made public for the world to see.  And they open their journals for you to see as well, and you feel like you know each other.  And in many ways you do.  I've had the pleasure of meeting so many incredible people, that I now call friends, through this thing called blogging.  And it used to be everything, but now there's facebook, twitter, and everything in between.  And everyone's there, posting updates, pictures, and all the things you used to only read in the blogs.  And it's great that everyone is so accessible now, but part of me misses this.  Does that mean I'll be back updating on a regular basis...no, not likely...if I'm being honest.  But kudos to those of you who are...I admire you for keeping up that journal, and I wish I hadn't left so many gaps in mine.  And speaking of gaps....I'm going to attempt to recap the last year...here goes.

Maddie turned 5 in June.  It was a Princess Sofia party and my girl loved it!

 

 

A few days later we were in California for the National Spina Bifida conference at Disneyland. This was so much fun!!  We had lots of friends there with us, and we were fortunate to attend many sessions within the conference, and meet with specialists from all over the country. 

We all had a blast!

 

 

 

 

 

We got a dog!  Meet Sugar.

 

 

 

 

The kids went back to school in August...Mason started second grade and Maddie went to kindergarten!  Both of them have done amazingly well this year!

 

 

 

 

Mason turned 8 in October, and had a Ghostbusters party! 

I swear ya'll...he's into ghostbusters, star wars, and Atari...I love it.

 

 

Next came Halloween...We had so much fun with all our friends and family!!

 

 

 

 

Thanksgiving 2014

This year was really special because my sister-in-law came in from Kuwait, with my nieces and nephews, for an extra long visit.  My kiddos were so happy to spend the holidays with their cousins!

 

 

 

Christmas festivities

 

 

 

 

Teddy Bear Tea 2014

 

 

 

 

these two make me smile...

 

 

 

more holiday fun....

 

 

So really that was only six months worth, but I tried!  You get the idea...It was a great year!  We have so much to be thankful for, and I need that reminder from time to time.  So I'm going to make a conscious effort to post more often...to take more pictures...and to remember the moments because they go entirely too fast.   Till next time...

A Little Perspective

So, I've been taking a much-needed break from blogging...and I have not regretted it, because I truly believe at some point you need to stop documenting your life, and just start living it...Right there.  In the moment.  As it's happening.   Sometimes we get so used to looking at things through a lens, that we forget how amazing it can be to just take a step back and see it through our own eyes.   So, that's what I've been doing...enjoying the moments as they come, planning less and doing more, and savoring every second of age 7 and age 4, because I know how quickly it goes.    But, someone recently reminded me how important blogging was at another time in my life.  How I read page after page of blogs by others who were on the brighter side of the tunnel I had just entered.  I clung to their words for answers, for encouragement, for hope, and for permission to be angry, afraid,  guilty, and completely heartbroken all at once.  Their words were exactly what I needed at that time.  If they had walked away from blogging when things got easier, I may have never known that things would get easier.  And they have.  Our life is not about Spina Bifida...and it hasn't been for awhile now.  And maybe that's what needs to be said.  Maybe to that person who can't see past the next day, week, or month...they need to know that life does go on.   You will laugh again, promise.  It gets better...so much better.

Most people at some point in their lives, will get that phone call that changed everything.  They can recall the moment with absolute clarity, because from that point on, things were different.  What you do from that moment on is what will define you...not the diagnoses, not the loss, not the actual moment...but all the moments that follow it, is what will shape you into the person you were meant to be.   

My life is pretty great.  It's full of love, laughter, and all the highs and lows that come with having kids and watching them grow.  I've been asked before if I wished SB wasn't part of our lives...the short answer is simple...yes.   I'd take it from her in a heartbeat if I could.  But, I know that none of us would be who we are today, had it never happened.  I see Mason becoming such a caring, compassionate little guy, and Maddie finding her limits- surpassing them, and then pushing for more.  And what I once feared could take a toll on my marriage, has only made it stronger.   We've all learned to rely on, and support each other every step of the way.  So yes, while I sometimes wish it never come into our lives, I am completely content with the life that has been shaped by it.  It may not have been the story I would have written, but it's real, and it's beautiful, and I wouldn't change a thing.

Bursting of the Bubble

Where to start?

Summer's just about over now, and by this time next week, Mason will be in the first grade. I am so behind on posts, which really is an indicator of how our summer's been...pretty awesome, really.  Super busy, but honestly, as Maddie would put it, "It's been the Best EVER!"

But now it's ending...and along with that comes some pretty big changes for us, and reality is hitting me, in a big way.  I promise to post about all the fun things that happened this summer...Mason's graduation, our Disney trip, and Maddie's birthday each deserves it's own happy place.  But I'm not there today.  Today I'm in what can only be described as a funk.  I'm feeling overwhelmed and inadequate, and it sucks.

So what brought this on?  Probably the fact that we've spent 2 of the last 3 days at Children's hospital for appointments, or maybe that yesterday's appointment involved Maddie screaming and sobbing her way through a urodynamics study, that left me completely drained and frazzled, or it could just be that last night we started cathing on our own...and what came fairly easy to me in the doctors' office, resulted in pee all over the floor last night, and no access at all today.  I lied and told Maddie we did great, just because I can see how uneasy she is about the whole process.  She doesn't want any part of it, and she's incredibly nervous, so the last thing I want is for her to see how nervous I am too.  My brave face morphed into an ugly cry in the shower.  And what's worse is I feel guilty about it.  Whenever I spend any substantial amount of time at Children's, I come away feeling so grateful and blessed that my kids are healthy.  Sure, we have extra on our plates, but it pales in comparison to what other parents are dealing with.  Even among our SB family, Maddie is doing extraordinarily well, and I feel guilty for any moments of weakness, because I know it could be so much worse. 

I spent last week with some amazing parents, while our kiddos went to SB camp.  I saw how they handled multiple kids, wheelchairs, siblings, cathing, and so. much. more...and made it look easy.  I can't even come close to that, and yet here I am with my little violin, right?   It's just that I've happily resided in my little bubble for probably too long.   She walks independently, she's smart as a whip, and her shunt has been on its best behavior.  For all intense purposes, Maddie's life has been pretty normal.  Potty training was always going to be the biggest challenge, and I knew some things were inevitable, but I've done my best not to think too much about them until the time came.  Well, now it's time and  my little bubble's bursting.  I feel like I'm having a major reality check, and life is about to get a lot more complicated.

If cathing were the only change, I might feel better...but we're  starting a bowel program as well.  ( I know, I know...glutton for punishment) And between the two, the cathing seemed easier...so this probably won't be my last meltdown.  :)   I knew these were both going to happen this year, and I'd rather tackle them before she's back in school, and we have a couple more weeks.  I am sure I'll get the hang of it, and like everything else, I'll adapt...Maddie will adapt..and we'll all be ok.  But right now I'm overwhelmed...I'm frustrated...and I'm missing my bubble.  Ok...I'm done.
Putting violins away now...

The Good, The Bad, and The Bunny Hop

The Good


A couple of major milestones have come recently...and although I've long given up on blogging events on the day they occur, it still has to be said....

First, a long overdue, Happy 3rd Anniversaries to Sophie the Shunt, and Our Lemonade Stand!  I'm happy to say both are still in perfect working order...here's to another 3 years!


Second, my little people got some major press with this story that ran on the front page of the Times Picayune!  We actually first learned about CeCe, our swim coach, when I read a similar story in the paper about aquatherapy and the progress a little boy from this area, was making as a result of it.  So it was incredibly special to have my kids featured in the same way...Hopefully someone else, searching for solutions like I was, found the story and found the same hope and encouragement that it brought me.

And last, it's been 4 years now since our diagnoses day.  It feels like a lifetime ago... So much good has come from something that seemed so very bad.  I look back and remember that first year, and the blog post that came with it, and it takes my breath away.  The wounds were still painfully raw, and although I had hopes for the life my little girl would live, I couldn't have imagined the beauty, laughter, and joy that I've now come to know and love as my Maddie.  She is vibrant.  She is fearless.  She is unstoppable.  She is everything I want to be.  My little girl is my daily reminder that courage and strength can come in tiny packages.  Four years ago, SB rocked my world...Today Maddie rocks the worlds of so many out there...and I feel humbled, inspired, and truly lucky to be her Mama.









The Bad

This one's for my Mason.  My sweet boy was sick the entire spring break....and not just sniffles and coughs.  No, we're talking double ear infection and walking pneumonia.  I had plans for the zoo, the playground, and the children's museum...Instead we had fever, chills, and breathing treatments.   It was heartbreaking to see him so miserable, and in so much pain.  It wasn't anything like I had planned, but there's something to be said for hours of cuddles and movies with my sick little guy.    Thankfully, he was better in time for Easter, but what a sad picture our spring break was.








The Bunny Hop

Here comes our Easter recap!  We had a great Easter, that started with egg hunts at the school and ended with Easter dinner at my Grandparents'' house.  Here are some pics of all the fun!





Is there anything better than Kindergarten egg hunts??







Loved making Easter crafts and goodies with my favorite "peeps!"







Decorating our eggs




This year we made it to an Easter Party at a friends house. It was so much fun! We boiled crawfish, and watched the kiddos decorate and hunt for eggs. That was followed by an Easter Egg piñata, some football and horseshoes, more crawfish, and "Peeps" smores around the campfire that night...We had a blast, and look forward to next year!










See my bunny hop!!!



Easter Sunday was a wonderful day with family. My kids enjoyed yet another egg hunt...but not nearly as much as they liked watching the rest of us tackle each other during the adult egg hunt. It was ridiculously funny, and the highlight of the day.









They loved getting new fishing poles!





It was another great Easter, and I loved watching my two take in every moment of it.


 

Keep Calm and Carry On...

I see this phrase everywhere these days, and for the past couple of weeks it's become somewhat of a mantra for me.  I've been on this roller coaster of events and emotions, that's left me drained, and incredibly aware of how quickly things can change.  And although things looked pretty bad a few weeks ago, thankfully, they have changed..and we are doing so much better.  Especially this one...

 A far cry from this miserable little girl...

Let's count the loveys shall we?  I see six....

Maddie is finally back at school, and back to her happy little self.  Soon after her shunt tap came back negative, we were discharged from the hospital, with strict orders to watch her carefully for any signs that the infection was returning.  If she had any fever, or any redness reappear, we were to go straight back to Children's.  So we held our breath for the first few days.  Maddie was given an enormous amount of antibiotics to take for the next week, and each dose was a struggle.  Poor girl was taking 4 different doses, per day of the stuff.  Big meds for a little girl, equals tummy troubles...which further complicated things, and delayed her return to school and therapies.  I felt so bad for her.  She was feeling better, and after all the bed-rest in the hospital, she wanted so badly to get moving, and go back to school and her routine, and it was just too soon.   So I kept her here, and we were stir-crazy together.  On top of everything, Chris has been out of town for the last 2 weeks, so I've been feeling beyond scattered.  But I can see the light at the end of this tunnel... Chris comes home tomorrow, and I'm finally starting to breathe normal again.

I won't lie to you...I'm still watching her like a hawk.  I'm still frustrated that the doctors never figured out how she got this, and why it presented like a little red map down her shunt tract.  I'm nervous, because the areas that were swollen and hard, are still swollen and hard.  They're not red and angry like they were, but they're still visible...more like a bruised area now, and still painful to touch.  I take tremendous comfort in seeing how happy she is to be feeling better, and that really helps me not focus so much energy on the nagging questions and concerns that remain.

I'd rather focus my energy on happier things anyways...

Like my little guy who took his kindergarten graduation pictures this week. (this one actually made me cry... not sure how it ended up on the "happy list"...  sigh.)

Like seeing her make silly faces again...

Like Easter crafts with these two...







It's scary how quickly things can change.  When things are going so well...when you've finally found your rhythm...when you start focusing entirely on the future, life has a way of reminding you that we are not promised even today.  We can take it as it comes, or we can curl up in a ball and beg for it to stop... maybe a little of both.   Either way, somehow, we keep calm and carry on.  We live through it, we learn from it, and we hug our babies tighter when it's all over.

My 100th post

So apparently, this is my 100th post...and it's a doozie.




If you've been following me on facebook, you probably already know the drama that's unfolded over the past few days. Maddie is in the hospital. She's being treated for a bacterial infection called cellulitis, which may be involving her shunt. At this point there are more questions than answers, and we are all anxiously awaiting results from her shunt tap culture. Yesterday I watched them stick a needle in my baby girl's head to figure out if the shunt is making her sick...and the irony is, yesterday was the 3 year anniversary of her shunt placement surgery. Three years of a perfectly working shunt, and that's how we celebrated. I watched the same Doctor who placed her shunt, 3 years ago, now tapping it for answers. Crazy.



It all started Friday. Maddie had an upset stomach right before her swim therapy. I didn't think much of it, because the kids had chowed down on the V-day cookie cakes we made for Chris the night before. The cramping continued during her lesson, so we cut it short. (Sadly, the Times Picayune chose that particular day to shoot for a story on aquatherapy, and Maddie was miserable...so who knows what those pics will look like) Anyway, by Saturday afternoon she was running a low fever. I gave her some Motrin, and she seemed fine for the rest of the day. That night, things went downhill fast. She got really irritable, spiked 103 fever, and wanted to be held. Then she started complaining about pain in her neck. She didn't want to move it...wouldn't let me touch it...started sobbing when I shifted her on the sofa. She was in serious pain. Now I know just enough about meningitis, to know that fever and neck pain can be no joke. I made a few quick calls, and everyone agreed we should go to the ER. This was the first ER trip we've ever made for either of our kids.



We got to Slidell Memorial around 10:30 that night. The last dose of Motrin was kicking in and she was coming down from the fever. She was smiling and chatty again, so the doc quickly ruled out meningitis and shunt failure. They tested for flu, strep, and uti...all negative. As we were preparing to leave, I noticed a red mark peeking out of the top of Maddie's jammies. I asked about it, and we decided she must have scratched herself when thrashing about during the tests. We were sent home with Rx for antibiotics, and told she had pharyngitis. Relief.



Sunday we started the antibiotics, and continued to treat fever. I took Mason to a couple of birthday parties, while Chris stayed home and Maddie slept. When I came home Maddie was on the sofa, pale and miserable. She wanted to lay on me, but wouldn't let me touch her neck or chest area. The Motrin wasn't bringing the fever down, so I decided to give her a cool bath. That's when I saw the red mark again. It was longer, red and inflamed. I brushed my hand over it lightly as I washed her, and she screamed. It was a quick pass, but just long enough for me to feel the tubing of her shunt underneath. My heart dropped. I snapped a few pictures, and quickly called the ER back. I sent the pics to our doctor's phone, and he called back quickly. He suspected cellulitis, possible shunt infection, and asked how quickly could we get to Children's Hospital? Panic.



We raced here, and they began tests immediately in the ER. To say I was a nervous wreck is a huge understatement. I was nauseous, weak, and finding it really difficult to breathe. A full blown panic attack, that seemed to last the entire night. The redness was spreading. The ER doc had drawn a circle around the perimeter of it, and now it was creeping past those inky lines.



Monday morning, new spots of red had appeared, like a little trail down her tummy, right along the shunt track. The neurosurgery team came early, and tapped the shunt. This was alot worse for me than for her. Unlike the IV experience, Maddie did not seem to feel the needle being inserted into her scalp. She held still and talked to the nurse about her favorite princesses. I held my breath the entire time. They were able to extract the tiniest amount of fluid...and those precious drops have been the topic of much discussion since then. It takes a full 48 hours to determine bacterial growth, and so far nothing has happened. White cells were detected, but no new growth, so it's still possible this thing hasn't gotten to her shunt. Obviously, everyone is baffled as to how and why it would present as a red streak right down the shunt track...but the consensus is, if she looks well clinically speaking, and the test comes back clear, we won't question it. If it comes back positive for bacterial growth, we have lots more to talk about. The shunt would need to be externalized, she would need to be cleared of infection, and a new shunt placement would occur. We'll cross that bridge if or when we get there. For now, no news is good news...and we've heard nothing from the lab.



Today was a good day. Maddie was in great spirits most of day, and had no fever. We were able to take a couple of walks today, and she was so happy to be out of bed. Her appetite was back, and the best news is the red marks down her chest and tummy are diminishing! It's getting better, and I am praying tomorrow will be great news from the lab. If all goes well, we should be talking about going home soon...and I really hope we will.



This has been hard. I just posted about how great things have been, and how normal our routines have gotten, when out of nowhere comes this...and I couldn't feel less normal than I do right now. My heart breaks for all my friends out there who have been through this, and so much worse, many times over. There is nothing worse than seeing your child in pain, and suffering, and feeling helpless to do anything about it. It's excruciating to see Maddie poked, and prodded, tested, and stuck, and hear her beg me to make them stop. I want this to be over soon. I'm tired, and I want my girl back. Please continue to keep her in your thoughts and prayers...Your love, support, and encouragement have been overwhelming, and have truly lifted our spirits throughout this ordeal. I am amazed and humbled by the number of people lifting us up in prayer...we feel it, and we are grateful beyond words.