Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Saturday, November 29, 2014

Thanks and Giving

Our week started off a bit shaky - as many of you know, we had a little "scare" with Megs early in the week.  At first, I blamed it on storms.  It was very cloudy and rainy and Meagan was very out of sorts and extremely tired.  She is so pressure sensitive, we have learned that when weather changes, or pressure systems come in with warmer or colder weather, Meagan reacts, and typically reacts dramatically. We normally have a "weather day" as we call it, and then she's back to her bubbly self the next day.  I became concerned on Monday however when she seemed to not have recovered from the weather change.  She wouldn't wake up on her own, and when I woke her up for PT, as excited as she was to see Melissa, she was very tired and out of it.  She ended up even falling asleep in the middle of her PT session.  As the day went on, she was either fussy, sleeping, or when in a decent mood, extremely wobbly, off balance, and her speech was slurred. We were also watching a friend's child that day, and when the mother came to pick her up (who also knows Megs very well), and commented how Meagan was definitely not herself, I knew my concern was well founded.

Wouldn't wake up for anything

On Tuesday, we were hoping she would wake up better.  But she didn't.  She continued to be lethargic.  She asked to go to sleep constantly or to go to her crib.  This is unusual because she typically fights going to bed.  After being awake a total of 48 minutes on Monday, I became concerned Tuesday when she seemed to be following the same pattern.  I also noticed the catheter in her neck seemed extremely twisted and kinked.  I was hoping we weren't heading for another disconnection, as had just happened on her birthday in September.  She was acting awfully similarly to that day and it was worrisome.  Every time we tried to wake her, she simply asked to go back to bed.  Her tried and true test - Irish dance class - didn't even prove to work that night.  If she's just grumpy or tired, she will typically perk up for dance class and then crash afterwards.  But she didn't perk up much at all.  She was very tired and wanted to go to sleep or had slurred speech while trying to snuggle with the dance parents.  I was convinced we were heading in to the ER that night.  I went ahead and emailed "Elsa" Blair (Dr. R's PA) and she told us to come in the next day and they would work Meagan in the schedule.

Wednesday morning, I had to wake Meagan up again.  We headed in to Dr. R's office and he did a thorough exam.  He noticed Megs was not herself and was concerned as well.  Luckily, he was confident that her shunt had not disconnected but was concerned with her behavior.  After checking her out, Dr. R concluded that it was not a shunt emergency, but that she was on "high watch" because of past occurrences.  He told me he was on call the rest of the week and weekend so if she did not turn around in two days, to come in and he would expedite her to a CT or MRI and go from there.  As we went home I was hoping it was just a few off days or a kink in the shunt because we really didn't want Meagan to end up with another surgery.  When your normally active and funny child is mostly like the picture below, your radar definitely goes off and you hope for the best.

As Thursday approached, I was hoping for a turnaround.  We asked friends and family for some extra prayers and were hoping the previous 72 hours were just a few "brain days" and we would see our old Megs return. And thankfully, that's exactly what we got.  Meagan woke up in a good mood. Even better, she seemed more happy, more aware, and more like her old funny self. She was still extremely tired, but when the girls were having hot chocolate and she tried to grab their spoons and "feed them"... I knew Megs was on her way back.

Meagan was a lot better Thanksgiving Day - but still extremely tired.  
She slept for about 5 hours in the afternoon!

We had a great Thanksgiving day with my family and some of our dear dance friends, and Meagan continued to improve.  She still slept a bit more than normal, but not nearly as long, and when she was awake she was much more engaged with her surroundings.  As the weekend went on, we were having a wonderful time - spending time with my parents, taking the girls to the dance studio to practice, and starting to get out our Christmas decorations.

Tonight, as we got out the tree to put up, Meagan completely freaked out.  She was not ok with the change in our living room and had the biggest fit.  Not even coaxing her with lights or pretty colors, or even Pop Pop (whom she will usually do anything for) could get her out of her fears.  For some reason (which we will never know), Meagan did not like the tree.  She did not like the lights.  And she certainly didn't want any of it in her house.  Welcome to the life of a family with a child who has sensory issues.  So often we focus on her hydro complications or epilepsy set backs, other challenges slip through the cracks.  But sensory issues with Meagan are very real.  She doesn't handle transitions well, she doesn't like certain sensations or changes in her environment, and for a family of 7, this is very hard to deal with at times because we never know when she will react or become "unglued" from even a subtle change. And tonight was one of those moments.

As my husband continued to unpack the tree and put it up, Meagan was not having it! She was very upset and did not like it at all! It is times like these when although sad, you really do have to keep your sense of humor.  If we relished in every moment that Meagan did not enjoy, we would never enjoy anything as a family.  Sometimes, you just have a smile, or even giggle, and find the humor in the situation.  And that we did.  As sad as it was she didn't enjoy the tree going up, it was also funny to watch her come up with any excuse to get the tree out of the house.  The video below was Meagan's initial reaction to the tree being put up....

After seeing her reaction, we tried every avenue of distraction.  Focusing on the lights, the fun, Santa coming, my parents being here, etc... I sent the video to my brother with the humorous line of "well decorating should go great this year..." because last year she was already afraid of our Christmas figurines.  I know I have spoken highly of my brother before, but I just have to do it again.  Instead of just responding that it was cute, sad, or funny, he took time out of his night to record a sweet video for Meagan.  For some reason when he calls, Meagan responds - she races to the phone or to the sound of his voice and intently listens.  As I have noted before - these two are kindred spirits. :)  Nick encouraged Meagan to help with the tree and talked to her about how awesome it is in his video.  He spoke excitedly and lovingly, and helped to make it "no big deal"....he told Meagan to help her daddy and how fun having a Christmas tree would be.  I showed Meagan the video and she watched it intently.  She listened and hung on every word and really enjoyed seeing her uncle.  Then, after watching it, without the bat of an eyelash, Meagan scooted over to our tree all on her own! She approached it without fear.  She seemed to enjoy the lights, and even tried to touch the tree.  I turned on my camera and recorded her new attitude towards the tree to show my brother.  As you can see, when I even mentioned my brother's name, she scooted as fast as she could towards the phone - she probably thought he was on Facetime! For whatever reason, she connects with him - and in times like these, that is an even bigger blessing.  I forwarded the video on to my brother with a simple "Thank you."  Sometimes, all that can get her through a major sensory issue is a little encouragement from the guy who "gets her."

There is so much we have to be thankful for this year.  We have a wonderful family, special unique children, and unwavering faith that allows us to both endure and enjoy all of it.  We are so thankful that Meagan avoided another hospital stay and thankful for a trustworthy and knowledgeable doctor. We are thankful for understanding and for humor.  And we are thankful for the special occurrences that get Meagan through her random rough patches we don't know how to navigate.  What I have realized this year, is that Meagan truly helps us to be thankful everyday.  Even holding her on Monday as she whimpered and slept, I couldn't help but thank God for her presence.  I was so happy that even though it was a bad day, she was resting in my arms.  And today, I am even more thankful that she is back to her happy and spunky self.

We always know each day can bring the unexpected.  But with a child like Meagan, we are reminded of that a bit more.  Things can change in an instant and it's a constant battle to focus on the positive and what is versus what "could be."  But we are getting better at that, and feel blessed to have all been home together as a family this holiday week. We sincerely wish each and every one a blessed Thanksgiving week, and hope this Christmas season is starting off as it should - with remembering thanks for even the trying moments, and then giving thanks to God for others that get us through those times with love ..... and even a little humor.

Happy Thanksgiving everyone!


  1. Happy Holidays to you and your family! your little girl is so cute and im glad she is doing better.

  2. Glad Meagan made it through her rough patch without intervention! You are so right about the sensory issues. When Ellie was 3, we could hardly take her out of the house (with the exception of school). We couldn't even go to dinner at the grandparents' house because her sensory issues with sound and change were out of control. She would just cry and cry and beg to go home. School was really critical in helping her learn to deal with that and now things are much better. We can go places now but still have to be very sensitive about it. Its funny because even when I'm alone, I "see" things through Ellie's eyes and flinch or react to noises that I know would bother her. I'm glad you can laugh through it. I have to admit that, that year was one of the hardest I've had as a parent.