Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Thursday, May 1, 2014

Plastic Cups and Basketball

Ten years ago today brings back so many memories.  It was a day I will always remember - a day that changed my life - it was my wedding day.  It's quite interesting to think back on all the things that brought that day together... all the little things like the location, the church, the music, the people, the dress (which I did NOT like on the hanger... lo and behold, it became my dress as soon as I slipped it on..)... and all the things that fell into place to make the Mass and the vows sacred and meaningful, and the things that fell into place to shape our reception into the most fun party I have had in years.  

One of my earliest memories of Brian, besides the fact that he was extremely nice and made me laugh, was seeing him at Mass each week. I had a lot of male and female friends in college - and Brian was one of the few male friends I started to notice would attend every week like clockwork.  It seemed like just an interesting observation, but, it turns out in hindsight, it was probably the single most important thing in our relationship.  At the time, it was attractive because we were of the same faith - and who doesn't like a boy that actually takes himself to Mass... in college!? But I realized over the years it was so much more - it represented commitment, even when other people weren't into it.  It represented humility, even when others were all about "me, me me."  It represented love - no matter what life threw at him, how tough the huge term paper was he had worked on, or hey, how bad the party was the night before,  he was at Mass.  It was just a group of values I started to notice, that grew into admiration, and ultimately culminated in me saying "hey, I want to be with that guy for the rest of my life."

Best day ever!

When Brian and I got married, we of course didn't know what to expect, really. I mean, does anyone?  We had ideals, plans, and priorities for our life together, and one of those priorities was children.  We both knew and had agreed in our promises to each other to honor the dream of children and we were eager to start our family sooner than later. Did we know every challenge our child/ren would bring? Of course not.  But we were ready to jump in.  And go figure - because Meagan always keeps us on our toes in more ways than we bargained for.   Let me catch you up on what has been going on with the little peanut.

As you know, she started sitting well over Christmastime, and shortly thereafter, figured out how to scooch herself forward on her bottom.  Around 5 weeks ago, something "clicked" with her in crawling.  She would go to all fours by herself, and just rock for a few times before doing a head dive on the floor - but hey, it was progress.  Before we knew it later that week she was taking crawling steps (well, moving her hands and dragging her legs) on her own a few at a time.  Both the PT and I felt within a few months,  we would have a pretty good crawler in the house.  Each day she progressed... until about 5 or 6 weeks ago when she literally just stopped.

I wasn't immediately alarmed.  Anyone who knows Hydro knows it's 2 steps forward, 6 steps back at time.. and it's just the name of the game.  I had pretty much forgotten about her even trying to crawl because she was still scooching on her bottom.  That following week, Meagan had an eye follow up.  The conclusion from that appointment was that her right eye was losing vision.  We then had Meagan's appointments with Dr. F (Neurologist) who did an 8 hour EEG on her which was basically "ok."  She did have abnormalities especially when sleeping, but, clinically, her body wasn't doing anything like a seizure at that time, and so he didn't change any meds.

Eyes getting wonky again

About four weeks ago, I noticed Meagan's hand (namely the right) would turn in when she was sitting.  This was not really alarming at first.. I figured it was just a phase.  But then I started to notice it turning in at an extreme angle.  And following that we have had weakness in her arms which has resulted into completely over extended elbows.  One might say so what? Before I answer that, yes, she is still basically happy, which is great, but I noticed a severe decline in where she had been gross-motor wise.  That week, Meagan's PT came for her next session and without me even saying a word, her PT came to the same conclusion.  She gave us exercises to do and strengthen her arms - but nothing was working.  This increased over the last few weeks to whole arm, and now the other side of her body as well.  Even worse, her elbow joints are literally starting to pop out or twist backwards when she sits or tries to scooch because she is relying solely on the joint to "prop" her up, a regression from months before when she was truly engaging her whole arm for support.  We also noticed that for her to chew on a snack here and there, it was almost impossible to swallow.  Some solid foods she was holding in her cheeks until one of us would go clean out her mouth.  Vision loss, muscle deterioration, and balance issues when she was sitting immediately had us thinking something neurological was going on.  Since we had ruled out common things at the Pediatrician, and already ran the gammut of the EEG and blood work/genetic testing with the Neurologist, our next stop of course was Dr. R.


Dr. R had us come in a few weeks ago so we could chat about what was going on.  He also had ordered Meagan to have a new MRI so he could check her brain structure..etc.  He saw a few things that could very well be our culprit for her regression.  One was crowding of her brain structures, and the other was her Chiari - which could be acting up again and impacting her progress.  He wanted to bring her in for ICP monitoring (intracranial pressure monitoring... you can read about it here) to see if he could get any more information about why she was having these motor regressions and muscle weakness.  Her arms are so bad now when she tries to use them that our PT actually said until this issue is solved, she is on hold - she doesn't want Meagan to damage her arm joints any more than she already may have and made sure we ordered splints for her arms in the meantime.

Elbows getting so bad

Yesterday I was running errands getting ready to come in today for the testing and one of my stops was at the bank. I was sitting there talking with the banker when Meagan's leg shook.  She was sleeping so I thought nothing of it.  But then it happened again. And again. And then her arms started taking part as well.  The girl looked like someone had squeezed her belly each time so her legs and arms came straight up and out, froze for a split second, and then relaxed totally involuntarily.  These movements continued on and on for almost 2 1/2 minutes and were extremely purposeful and rhythmic.  Seizure. Ugh.  I called Dr. Flamini and Dr. Reisner just to inform them, since it was a longer one and the day before surgery.  They both said they think it's related to whatever is going on and so surgery to do the ICP would still be a go.  I was glad because I really wanted answers.

Today we checked in, got Meagan all prepped for surgery and she went in around mid-morning.  She was out by after lunch time and since then has been monitored so they can watch her ICPs and get a clue as to what is going on hopefully.  She is not too happy since she has her arms splinted (so she cannot pull the bolt out of her head) so today has been pretty rough for her.  She is very uncomfortable, and, I don't blame her.

So far, the numbers look "ok" on her monitor from the little information that I have... so I fear tomorrow will be another "well this is ruled out.. BUT...."  I'm confident Dr. R will come up with a plan for Megs to help her get back on track.  All that said, she is still very happy most of the time.  More fussiness, yes, but overall still her happy self. And for that I am grateful! We are so blessed with her and her progress lately, but no matter how you slice it, regression of any sort is hard.  These kids work harder than anyone I know to do all the things we take for granted everyday - and so when something is wrong, especialy when it is not an absolute clear answer, it makes it very tough.  There is family stress, personal stress, internal worry about Meagan and if her arms will recover, etc..etc.. The list could go on and on...

When these things happen, it's so important to be a team.  And this is where my youthful observation of Brian attending Mass isn't so unimportant anymore. His drive to do what was needed to be done all the way back when we were 19 years old on a college campus shines through in times like this.  Would we like to be somewhere else for our 10 year anniversary? Of course! But we aren't.  We could be all glum about it or disappointed that a "special getaway" didn't pan out - or we can just be glad that we have the access to such great doctors to help figure out why Meagan is having the issues she has been struggling with lately.  I will take the latter.

So many times I think back on that first year of marriage... all the "honeymoon" love, expecting our first child, being in our first home... and I think of all the grand plans I had designed in my mind as we would move forward in our lives together.  Then I look around where I am now and suddenly the really special destination we wanted to plan just seems so trivial.

As for now, we will await the results of Meagan's testing and go from there as far as formulating a plan to help her regain some of the strength she has lost or if there is further testing that needs to be done.  We will be sure to go over all information with Dr. R and also get to the orthotics office to pick up Meagan's arm braces so we can salvage her joints until we get instructions on what the next step is.  I'm confident Dr. R has a pretty good idea as to what is going on - but as we have learned he likes to be extremely thorough and as he said today.."Meagan is a tough nut to crack!" I appreciate him taking the time to really investigate and find the root cause of things instead of just sending us on our way.

When I went to meet Brian in the lobby hallway tonight, I saw him walking towards me with a brown bag of dinner from a restaurant and a large bouquet of red roses. There's a quote that says "You will never be happy if you continue to search for what happiness consists of."   I don't need to search for what happiness is.  It's right here. God always has happiness with me - I just have to choose it.  In a hotel or a fancy restaurant or in a hospital room.....that's not what matters.  Ten years of commitment, humility and love matters. Ten years of laughter matters. Ten years of hardships matter. Actually,  I'm pretty sure sitting on a blue hospital chair with plastic cups of water, watching basketball together through Meagan's monitor alarms is exactly where we were supposed to be tonight....and that makes me happy.

We will let everyone know what Dr. R says tomorrow.

To succeed in life, you need three things: a wishbone, a backbone and a funnybone. ~Reba McEntire


  1. I've been reading your blog for a while now. You & Brian have a faith that inspires not only me but others too. You & your whole family continue to be in my prayers. Love in Jesus the Christ, Jackie Battle (Aimee's mom)

  2. Happy Anniversary! I keep sweet Meagan and your whole family in my prayers.