Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Monday, October 20, 2014


It really seems like every time Meagan has a problem, we see a burst of new accomplishments or new progress shortly after.  As you know, about 3 1/2 weeks ago Meagan had her 8th or 9th brain surgery - her 3rd technical revision, and her 1st emergent one.  Since then, she has been doing extremely well.  Last time I updated the PT news, we were working on getting her more comfortable on her feet.  Everyone always comments how cute and tiny Meagan's feet are - and that's true (she's 3 years old but only wears an infant size 3 or 4 shoe!) But a big reason for that is because she doesn't weight bear on them.  So without the stimulation of standing, cruising, or walking, her feet do not grow at the rate they should compared to her body. This poses a problem when trying to help her learn to stand because for a while, she will feel unsteady and even unsupported with her little feet.  For the longest time we have battled sensory issues, surgical setbacks and also literal physical problems with her holding herself up due to her tiny lower body.  That all changed this last week.

As I was sitting there last week during dance waiting for my older girls, Meagan was doing her usual routine.  (At dance class Meagan loves to scoot around greeting everyone and of course going up to each parent and saying hello).  I was distracted by my conversation with a fellow parent when I happen to look down and see Meagan holding on to my legs - except she wasn't sitting on the floor like usual - she was standing between my legs! I couldn't believe it.  Meagan had just pulled up to stand for the first time! The other champ parents who were there and know us so well were so excited as well! They clapped for Meagan and as I sat her back down on the floor, encouraged her to do it again. And she did.

Another thing that has seemed to catch on is her counting and her letters.  She has always loved numbers and letters, but it seems we have had another jump in both.  Meagan always counted to ten in the last few months but would then start again at 1.  One day in the car while waiting for a doctor appointment, she asked me to count.  Of course I obliged, and we started to count.  When we got to 10, she continued on.. I was shocked! As I ended with an excited "twenty!" I heard from the back a small voice say "twenty one...."..... um, excuse me? When did she learn this?! I was surprised as was one of her sisters who was with us at the time and so we continued on.  Meagan made it to 28 before she finally stalled and went back to 1.  What a surprise that was! As for her letters, we have been working with her to start recognizing some of the letters by sight.  Nothing hardcore, but, at least wanting to familiarize her with some of them since she loves for me to sing the ABC's to her so much.  At Kaitlin's doctor appointment last week, I had about an hour of one on one time with Meagan so I decided to get out her favorite ABC book and start to teach her a few easy ones.  Within a few hours, she had O, P, and M memorized.  We worked a bit more on A and B this week but those are still fuzzy.

We often complain about and stand in awe of the change in seasons all at one time.  We complain about the cold in winter, but then complain about heat in summer.  At the same time, we enjoy the cozy nights with our families, or the fun sunny days by the pool.  There is good and bad in every season.  That's how I really feel we view Meagan's life - seasons.  There are some that are great, and some not so great, but every 'season' of Meagan's growing up has offered something beautiful on some level.
As we enter Fall,  the crispness of the air, the fresh winds and the colors that abound this time of year bring a fresh look on life and a new excitement.  Likewise, we are excited for the changes Meagan is experiencing right now.  I try to enjoy these as much as possible because seasons sometimes change suddenly, and I don't want to miss a moment of being thankful for all she has become.

Monday, October 13, 2014

You Are Who You Should Be - Happy 3rd Birthday Meagan!

In a family of 7, preparing a special post for Meagan's 3rd birthday just doesn't matter.  Prepared as I was, life once again threw us a curveball and prepared as I was, we were completely unprepared for what manifested on her actual birthday. Murphy's Law states that if I had in fact waited until the last minute to save a blank post for her special day, the day would have been regular, normal, smooth and boring.  But that's not life, that's not Meagan, and that's not life with Meagan.... so without further adieu, let's get to our little girl's birthday post!

Meagan's day started out like any other day - at least in the life of a teenager.  She slept. And slept And slept.  Now, what's the problem you might say? Well, in a child who has a fairly "set" routine and a child who has been known to have brain issues in the past, sleeping for inordinate amounts of time isn't necessarily a great thing.  Or a calming thing.  Of course I may have to rethink this when she's a teenager - I know teens love to sleep in.

In hindsight, it really should have been my first clue - but, I wasn't thinking that way on that day.  My in laws were visiting at the time, and so I thought it would be the opportunity to run down the road and get Meagan's "Frozen" themed cupcake mix, cups, and plates.  I had timed it perfectly so I could go from running my errands to picking up Maura from preschool and then get home to plan for the rest of the evening.  Making cupcakes.  Bringing said cupcakes to the older girls' dance class where Meagan loves to be so much.  Having a small dinner and celebration.  Letting her open presents when we got home.  Just small, simple, and appropriate enough considering the fact it was a dance night and a school night.   Meagan apparently wanted something much more exciting.

I got home from picking up Maura and did my usual "Hey everyone!" as I walked into the door.....except I didn't get my usual greeting back from my in laws.  And I didn't get my usual excited Meagan scooting as fast as possible over to me saying "Hi mommy!!" Inside I instantly knew something was wrong.  I closed the door to look into the living room.  There I saw my mother in law trying to frantically explain to me what was going on and say she was about 2 seconds from calling me.  I saw my father in law with an extremely worried expressions telling me that Meagan couldn't sit up.  I looked down and Meagan was trying to sit up... over and over again... but could not.  She was also trying to talk to me.  Typically, her speech is her strongest suit.... but although sound was coming out, all her words were completely slurred.  Being a brain kid's mom, the first thing that popped into my mind was  stroke.... I knew she had to go in. Something was terribly wrong.

I grabbed her up and put her in our car.  I started to drive to Children's. The whole way there Meagan was in between screaming/slurred speech and completely passing out.  She would go from one to the other within a half second.  It was very scary.  I had one hand behind me holding Meagan's foot so when she would pass out, I could squeeze it and pull on it yelling her name, and it would rouse her for another few minutes when we just repeated the whole thing all over again.  When we arrived at Children's, we were immediately taken back to a room.  Meagan was still between comletely inconsolable and passed out.  I noticed a small reddish rash spreading on her chest and her skin looked puffy.  She would need to be sedated for her CT scan so they decided to do her shunt series X-ray first to check that.  It's a good thing how it worked out.  There, clear as day on her X-ray, were her two valves, and her long catheter.  Problem was - they weren't connected.  Meagan had snapped her shunt catheter in half somehow just below her neck valve, causing it to heap into her belly and the fluid began to drain into her skin.

They started to page the on call Neurosurgeon...but being that it was just at the end of office hours, I asked if they would at least call Dr. Reisner to let him know.  Of course he was just leaving the office, but he came over anyway.  As he entered the ER room where they were prepping her for surgery, Meagan slurred out an "Sorrrrrrry....sorrrrrry..."  I think that did it.  Dr. R had other obligations but made a few phone calls to see if he could stay and do the surgery for us. With a kid as complex as Meagan, this gesture meant the world to us.  Typically we see Meagan decline over several days and can make a plan, but this was the first time there was an emergent situation. Dr. R's main concern was the catheter.  He wasn't sure he could grab it from her peritoneal area and may have to put a new catheter in, leaving the old one to just sit. He said because of her multiple belly surgeries, this was the safest way or they would have to call a general surgeon to monitor her belly region since it had been opened up so many times.  Before I knew it, Meagan was being whisked off to the OR and I waited outside with Brian who had just arrived from work.  About an hour and a half later, Dr. R came out and told us the good news.  Not only did he fix Meagan's system, but, he was able to  (with some very careful and precise maneuvering) grab the original catheter out of her abdominal area and reuse it.  We were very happy to hear this because not only did it save her having a new catheter, it also saved her from having a dormant catheter just swimming in her belly potentially causing other issues down the road.  Dr. R said as long as Meagan woke up ok and got her IV doses of antibiotics in, he was aiming to send her home the next day.

Not a happy camper

Of course throughout that night, Meagan got many visits from her nurse friends who know her so well - they could not believe she had emergency brain surgery ON her birthday.  I said several times "yep.. I guess Frozen cupcakes weren't exciting enough for Miss 'center of attention'...."  Meagan did well through the night and was able to go to over the counter pain meds by morning.  She woke up and besides being a little sore, was right back to her old personality.  We had a few more days of her speaking from one side of her mouth - but otherwise she was back to her old silly self.

Of course over the next few nights, we had our "make up" birthday celebration.  Meagan got to nibble on her blue birthday Frozen cupcakes.  She got to see her Anna and Elsa balloon, and she got to open her gifts from family, friends, and siblings.  She laughed, played, and did all the things a little girl should do on her birthday, and it was good.

After the news got out about what had happened, we had many people of course sending well wishes and prayers. We also got a lot of comments about the disbelief this had to happen on her birthday, of all days.  While this is true, and probably statistically uncommon, it's not surprising to us.  It's just Meagan, and hydro doesn't know any day, hour, or minute... any holiday or special occasion... any inconvenient time or birthday.  I see a lot of posts about hydro not defining one's person - while I understand the sentiment, I guess after this year's birthday, I finally came to my peace at disagreeing with that statement.  While we of course don't let hydro itself define all of who Meagan is, it is in fact a large part of her definition.  It is why she has the silly quirks she does... it is why she has the strength she does, and it is at the end of the day, a large part of who she is. There is a saying by St. Catherine of Siena that I love.... "If you are who you should be, you will set the world ablaze..."

.... 3 years later, and Meagan is still doing just that.  Being who she is. Sometimes cupcakes aren't the plan... and that's ok. We wouldn't want anything more or anything less.  Happy 3rd Birthday to our little fighter! We are so happy you are here and we cannot wait for the years to come.  We love you Megs!