Friday, August 2, 2013

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 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...

Tuesday, April 9, 2013

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'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 piƱata, 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.


Thursday, March 7, 2013

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.

Tuesday, February 19, 2013

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 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.

Thursday, February 14, 2013

Happy Valentines Day

From Our Lemonade Stand to yours....

Happy Valentine's Day!!

Tuesday, February 12, 2013

93 days

93 days...That's how long it's been since my last post.  I was looking at the log and it shows 47 posts in 2010, 29 posts in 2011, and 15 posts in 2012...I'm sensing a trend here.  And although the numbers speak volumes as to how much busier each year gets, it also says a lot about how great things are going.  In the first year of this little blog I wrote 47 posts...47 posts about my fears, my worries, my inadequacies, and my challenging transition into becoming a special needs mom.  It was all so raw, and this blog gave me an outlet to vent, to share, and to work through a grieving process I didn't realize I was in.  It was therapeutic, and it connected me to so many amazing parents all over the world, going down the same road. The next year brought with it more challenges and milestones, but also more joy and hope for whatever lies ahead.  And 2012 was a happy, healthy,  really-crazy-busy-but-normal-family kind of year.  So for this blogger, no news really is good news.  There hasn't been any drama, any surgeries, or any major concerns lately....and sadly, as a result, I've needed this blog a lot less.  It's become another item on my to-do list...not the much-needed outlet it was before.  It's been replaced with date nights, wine, Zumba, pinterest, wine, GNO with all my fav girls, wine, and so many other things that make this girl happy.  :)  And I think that's a good says we're good.  I've still got a lot on my plate, but I feel like I've finally gotten to a place where SB isn't running the's just along for the ride.  And so far, the ride's been good...

SO, if there's anybody out there still reading after 93 days of nada...Here's what you've missed  :)


So many things to be thankful for this year, but mainly, I'm thankful for these two...

Pictures with Santa

This was the first year Maddie actually went through with it...Should've bribed her with the pretzel last year.

Celebration in the Oaks

Look who sat in front of us on the train!!!


Complete with Lalaloopsy dolls and Star Wars galore...

Sprinkling reindeer food on Christmas Eve is one of my absolute favorites...


Sometime after Christmas there was a New Year's Eve party at our house...but thankfully, there are no pictures, so nothing can be proven.  ;)

Mardi Gras 2013

The highlight of Mason's carnival: Catching Star Wars beads from the Star Wars float, while wearing his Star Wars shirt...The force was definitely with him.

And being that today is the official last day of Carnival, and Valentine's day is 2 short days away,  we are already feeling the love around here...

The kids' valentines went out last week. My crafty little bugs had fun with these...and it didn't end there. My house is covered in glitter and paper heart cut-outs.

It makes me smile...

I hope everyone here had a safe, fun Mardi Gras, and I wish a Happy Valentine's Day to all.
Much Love.
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