The Last Stretch...Well, For Now.

Well the past few weeks have been quite insane for miss Meagan.  All was going well and back to normal - the kids were about to start school and Meagan was on a great streak. Feeling good, happy, and just a doll to be around.  She was scheduled for her Gbutton surgery last Friday and so we had a follow up with Dr. B (GI) that Tuesday before.

We got to the office fairly early in the morning - with all 5 kids in tow.  We got called back and shortly after Dr. B came in to see Meagan.  He is one of the few doctors with whom Meagan doesn't freak out (the other being Dr. R of course).  He went over her last few months with us re: her eating and her tube feeds..etc.  She had finally come out of the depths of the "flatline" where she had been for over a year with her weight and actually had a rise on the chart. It was awesome! She weighed in at just under 20 pounds and Dr. B was very pleased with her progress.  He said to continue her feeding plan as she seemed to tolerate it well and was gaining well and we would re-evaluate in about 3-4 months.  He said her gbutton surgery for Friday was still the plan and he would see us then.

The ride home was fairly uneventful.  The older girls started school the next morning so there was the usual "afternoon slump" as they realized this was the last day home for the summer.  Suddenly I hear from the back "Mom pull over! Mom it's so gross!!"  I knew it was Kaitlin's voice.... and I knew it must mean puke.  (She does not do puke - even talking about it makes her feel sick herself).  I asked her who threw up - she said "Mom Meagan just threw up everywhere!"  Oh great I thought. This is NOT what we need!

As soon as we got home of course I pulled Meagan out of her seat. And ...it...was...everywhere.  The poor thing had gotten sick all over herself, the seat, and managed to completely soak every crevice of her carseat and the straps. Ugh. People tell me all the time "Oh after 5 kids you must not even care about that stuff anymore.." Um, no.  I do not do puke .... it is disgusting!!  Nonetheless, I of course laid Meagan on a towel - cleaned out the car and her seat the best I could quickly and left them to dry while I  took her straight into the bathtub.  I put her in and she just sat there.  "That's weird" I thought.  No matter her mood, Meagan usually always splashes in the bathtub.  I figured she was just tired.  So I took her out. No crying. No screaming.  That was weird too - if anything she always screamed and flailed when I took her out of the bath (because then she would naturally realize it was over and want back in!). Nothing. So I laid her on the bed and got a diaper out to change her... and bam. All. Over. My. Bed.  No joke. Meagan has really never thrown up in almost 2 years of her life - so I knew something was up.

Of course over the next several hours as she continued to projectile vomit, I kept waiting for the fever, or the throwing up to subside... or some sign that it was the usual "tummy bug" but nothing changed and she kept vomiting extremely forcefully.  With the lack of symptoms and lack of ability to keep anything down, we decided to take Meagan in to the ER to get her some fluids.

When we arrived, they of course checked her shunt having forceful vomiting and no other symptoms.  They also ran blood work and assured us they checked every common cause and couldn't find anything.  Luckily her shunt looked fine, but unfortunately that left us with no answers as to why she was so sick.  Finally later that night, the vomiting subsided and she fell asleep.  We gave her some pedialyte through her tube and she held it down ok - so we were sent home.  I thought perhaps we had some little bug and for some reason hadn't had other symptoms.  I got home early that morning and put her to bed.  She slept well all night.  When she awoke in the morning, she immediately cried and fussed - and then got sick all over my bed.  I knew something wasn't right.

I called our Pediatrician who said of course to bring her in - that wasn't characteristic of a stomach bug to go away and then come back so badly.  I was worried about Meagan becoming dehydrated again.  So off to the Pediatrician we went.  Of course it was a little crazy as my older girls started school that same morning (of course) but we made it to the appointment.  The Pediatrician gave Meagan a quick exam and noticed her throat looked horribly gross.  She checked her records from Children's and noticed they hadn't done a strep test.  Of course.  Maura also gets sick with strep.  Within minutes, the Pediatrician came back and said her test was positive quickly.  We decided to give Meagan antibiotic shots instead of liquid medication since she still wasn't holding down anything so the nurse came in and gave her the shots.  I called Dr. B (GI) and informed him of the situation.  He decided to move her gbutton surgery to the following Friday so her stomach had time to recover and heal from being so, so sick.

The next few days were up and down with Meagan.  She seemed better, but then we had another day and night of forceful vomiting.  Then she wasn't tolerating her formula as she had been so I started to mix it with pedialyte and give her little bits at a time.  After only 5 days Meagan had lost 2 pounds but at least she was getting better.  She started improving and getting back to her old self. Laughing, playing and being silly.  Her feeds were still hit or miss, but at least "my Meagan" was back on track.

This Friday came quickly and we were excited to finally get her PEG changed to the gbutton.  It would be nice to not have the tube dangling from her belly anymore.  The older 3 girls were in school, but Maura (3) ended up having to come with me that day.  It was a long day of waiting, watching, and sitting at Children's, but after all was said and done, Meagans gbutton surgery was finished and was a success.  She did amazingly well in recovery and we got to go home right away! They sent us out the door with her bag of new supplies (her supply company isn't sending extensions until next week) and that was that!

Already wanting to "help" me give her meds

Out the door..with syringe and new toy in hand. Silly girl.

So far Meagan is tolerating her gbutton well.  The biggest issue has been her learning that when I approach her belly, I'm just hooking up her feed.  With her PEG, it meant cleaning her skin, which she hated...so each day that goes by, she is getting more and more used to me hooking up her extension for feedings and squirming less and less.  We are already back to her usual feeding schedule and she is tolerating them well.  The "funny" thing that has happened since Friday is that she is back on to wanting a bottle at night.  She had given them up a while back, but suddenly on Friday said "Baba" ... I decided to give her a bottle to see if that's what she wanted - and sure enough, she sucked it down.  So we are continuing her tube feeds during the day and letting her have a bottle to fall asleep at night.

Enjoying the ease of her new button!

This was the last stretch of a long line of hospital stays, surgeries, and such....one last thing will be eye surgery in a few weeks.  We found out some good and useful new information about her vision and how her eyes are physically working, which I will detail in a later post...but it helped her eye surgeon realize exactly what he needs to do to try and help her see better and how to help her vision in the long term.  Once her eye surgery is over a few weeks from now, hopefully that is it for a while! It's been a long stretch for Miss Meagan ever since February, so we are looking forward to checking this last surgery off her list and having several months of "nothing" after being so busy! God is so good, and He shows us everyday in my amazing little Megs.

Off She Goes!

It is no mystery the three older girls (and Maura for that matter) have been bitten by the Irish dancing bug.  I can't say I'm surprised nor disappointed.  The bug got me too when I was about 12.  I took a class and immediately loved it. After many years of competition, performance, and "just for fun," I finally hung up my shoes after two broken bones.  It is neat to see my girls enjoying the sport that brought such joy to my upbringing and I have loved seeing how they each evolve in to their own unique styles and strengths.

Since the three girls 'caught on' fairly quickly, we have planned a few feis' (competitions) around family trips this summer to let them dance and have fun while also seeing out of town family and friends.  To get ready for their competitions, and really just to pass time any day in our house, there is Irish music playing and three little girls dancing around, helping each other keep time and learn steps.  Before starting every step, they count off.... "5..6...7..and off you go!" This has been happening day after day, week after week.  They love to practice and they just do it on their own.  I will be cooking dinner and hear "5....6...7...and off you go!" Lock this away in your mind for the end of this story. :)

We took a trip to DC at the end of July.  The girls had a competition at the end of the week so we went up early to spend time with family and friends.  The two older girls were treated to a 4 hour, 6 mile hike in the Shenandoah mountains with their hero Uncle Nick (my brother).  They climbed over rock quarries, up steep trails and made it to the top to enjoy a picnic lunch admiring the Virginia mountains.

Kaitlin hitched a ride at times

 We got to spend almost everyday with my sweet nephew and every evening with my sister in law whom the girls adore.  We got to talk, laugh, and catch up with my parents, and Brian's parents.  We saw some of the cousins at the competition at week's end and aunts and uncles.

Meagan loves her Aunt Bean

http://www.youtube.com/edit?ns=1&feature=vm&video_id=mBQwrdqcz7c

Grandpa and Megs

Cousins at the Feis!

Park time

Meagan's first train ride!

http://www.youtube.com/watch?v=Td3BKFaSbb0

We spent the days letting the girls explore the area where they had first lived - from venturing in to downtown DC to explore the Smithsonians, to taking a boat out of Old Town Alexandria, to staying near Nanny and Pop Pop's house and going on train rides and carousel rides at the local park.  We were also able to go visit old friends including the children (who are now young adults!) I used to babysit, very close high school friends, and also former coworkers of mine at the pub who treated us to a great lunch at their new eatery.  The busy week wound down and before we knew it, Saturday was already upon us.  

The girls' competition was Sunday, so we decided to stay in the hotel Saturday night to make things easier for leaving the next day.  As it turns out, the Feis offered Mass right there in the hotel, so we decided to attend vigil Mass as a family so that Sunday we could get on the road after the conmpetition.  As soon as we took our seats at Mass, I knew Meagan wasn't going to last.  She had been through an extremely busy week and was very off schedule.  I could tell she was in one of those moods where I would have to hold her and walk around with her, so I scooped her up and stepped outside to let her calm down.

Of course, being that a Feis was the next day, there were dancers everywhere practicing and mosaics of Irish music melting together dancing across our ears as we walked the hallway outside Mass.  When Meagah heard the music, she suddenly stopped fussing. She began listening.  Her eyes became active and I could tell she was excited and interested.  I was fine with that - at least she wasn't fussing...and I continued to walk and rock her as the dancers around us practiced and jumped about.

Suddenly, Meagan looked up and put her hand on her pacifier.  She popped it out, and just as matter of factly looked at me and said very clearly "Fi...... Si.... Off go!"  I jumped back a minute (figuratively speaking) thinking to myself.."Did I just hear what I think I heard?"  While Meagan has a few words like "Mama," "Dada," "Byebye," etc... she has never said them with 'purpose'... she will babble and rattle them off like a pattern, but she has never used them in an appropriate situation as a way of communicating.  I took Meagans hand, placed it on my chest and drummed out the rhythm of the music.. then I leaned in and said "5...6...7.. off you go!" and before I could finish the word "Go" her little legs started going crazy!! Wiggling all over.  Kicking, stretching, pounding on my arm.  She was dancing!

Meagan still "dances" all the time

Over the next 20 minutes, I sat there and watched my little girl dance in my arms.  Every so many minutes she would pop that pacifier out and say "Fi...Si... off go!"  And immediately following her own count off,  her legs would start wiggling. And kicking. And stretching.


It was such a great moment - to see her spontaneously show me that she IS soaking in  everything we do around her. The poor kid is dragged to 5 dance classes a week, surrounded by 4 little girls jumping and kicking and practicing all the time....and she gets it.  Meagan was saying in that moment..."Mom... I get it!"

 I cannot plop Meagan down to sit and play on her own just yet - but despite that she found her own way to dance.  I know this is the first of many things she will "figure out" to do in her own unique way.  But that moment is something I will never forget.  We have put a lot of faith on the line for Meagan - and have done so willingly and knowing God will guide us along the way.  It was such a gift to see Meagan, once again, showing us she has faith in herself too.  Every little moment like this is God's way of showing me Meagan is not going to sit it out.  As the song says..."..and when you get the choice to sit it out, or dance... I hope you dance."  And that she did.

Not Me

For a week or so now, I would come to "Meagan's corner," as we call it....( her little area of our living room that has all of her toys, therapy toys and tools we use with her.)...and her blocks would be a total mess.  I know for a fact that Maura sometimes helps herself to Meagan's toys, and when I see this I gently remind her to please use the other toys in the playroom so we can keep all of Meagan's things together in one space.  I would lay Meagan to play for a few minutes while I would fold laundry, or quickly put away dishes....Maura would typically come over to play with her but by the time I would go pick Meagan back up to go upstairs, I would notice blocks everywhere all over the floor.  Again I would ask Maura to please not throw the blocks around so we can keep Meagan's stuff together.  Maura kept saying day after day "It's not me!"

Well tonight, the power of technology has exonerated poor Maura.  I heard a digging sound in Meagan's block bin... next thing I knew the bugger had hurled it over her head and off the rolled anywhere from an ince to several feet from where she was laying.  Ooops! I had no clue Meagan could hurl things this far.  And now I know she is totally using her position in the family to already blame messes on her sisters ;) I'm on to you now Meagan!

Meagan and the Diaper

Who needs toys, right?

Independence Day 2013

We had a fairly busy weekend last week and had just started "recovering" from it when I noticed Meagan had a bump on her head.  It wasn't huge, but it was new.  Figuring it was just part of her dissolvable sutures I sent a picture to her NSG and let it go.  As Sunday went on, though, I noticed an even larger lump appear on the other side of her forehead.  This one was large, tense and puffy.  It appeared to be fliud, but almost felt too tense to truly just be fluid.  I sent another picture to Dr. R and he said to watch it, take daily pictures, and come in Wednesday for a quick check up just to be sure.  He said if her behavior changed at all to take her to the ER.

When I first noticed her forehead bumping out

\

Still bumping out but in a good mood still

Notsomuch anymore. Mad mad Meagan! 

Sure enough, Monday night, about 3 hours after I talked to Dr. R Meagan started screaming. Screaming and crying incessantly. She also stopped taking any bottle which typically she at least does to fall asleep.  She also started to have a few small seizures, something we haven't seen in over a month.  I waited for over an hour and finally after a few hours of non stop crying, we decided because of her new puffy head we should take her in.

This face pretty much describes Meagan's Monday and Monday night

It's always that debate back and forth - to take her or not. It's so hard to tell with these kids sometimes.  I got to the ER around 9pm Monday night.  Of course we didn't have to wait. A screaming kid who is shunted with a puffy head gets you a fast pass to a room.  They did a CT scan and shunt series to check things out.  All in all the shunt looked ok, and her CT scan looked fine as far as her ventricles. But she did show some tissue puffing out beyond the skull line. (ew).  The ER doctors wanted to keep Meagan for observation because of this, and also because she had two seizures while in the ER - but, I decided against that.  There was obviously no clear answer, so I figured if nothing showed absolutely emergent, we would stick with seeing Dr. R on Wednesday and just go home.  I also told them she had a follow up EEG already scheduled for Wednesday as well - so there was no need to keep her for that.  They reluctantly let us go home, and I was glad.

Wednesday came and Meagan's head was even larger.  We got to Dr. R's office around lunch time.  He looked at her head, at her scan, and sat back a bit.  He said he thinks that for now we wait and see.  His guess as to what is going on is that Meagan actually has had new brain tissue growth. Which is a good thing. But because the front of her head is still lacking much skull bone, it has pressed out that way in an odd manner. He said she still has a dissolvable protein band that is right in that same area so it's probably pushing some of the tissue outward since it can go that way. Dr R said hopefully over the next few months, that band continues to dissolve, and her tissue can settle back in and the skull bones will continue to grow and close properly around her brain.  If by chance they don't, she would need a second craniotomy to put in a plate and help close things up so the brain is protected.

Yay for brain, but, weird!!

After that appointment, we went over to Meagan's Neurologist.  She got hooked up for her EEG.  She really did well. Once they stopped messing with her to put on the wires, she calmed and actually took a little nap. She was a rock star considering the day she'd had and how awful she'd been feeling! We should get the results in about 4-5 days. And frankly, there shouldn't be any surprises. We already know she has seizures, and we already know that (mostly) her meds are doing a good job controlling them.

Rock star girl through it all!

I was really glad how things turned out because we had family coming in town for the 4th.  Brian's aunt and uncle had some work in the area and so they decided to stay with us for the week. They also ended up bringing Brian's youngest brother with them who is near them for school so it was nice to get to spend time with him too.  It worked out to be really helpful for me because they stayed with the older girls while Meagan had her appointments all day Wednesday.

The 4th turned out to be a great day.  We got to cook together, hang out, dance, sing, and just have a really good time.  Brian and his uncle cooked ribs and Brian got to use his fathers day gift (dutch oven) for the first time to make his famous southern green beans.  There was also twice baked potato and apple pie.  It was rainy out but that didn't matter.  There was country music blasting in the kitchen, the girls outside splashing around in puddles with umbrellas, and Brian enjoying what he loves doing best - cooking - alongside his uncle and brother while his aunt and I played with the girls and helped prep.

Reilly and Kaitlin helping with the twice baked potatoes

Brian's southern green beans - YUM! 

Brian and Uncle R prepping the beans and ribs 

Anna enjoying a dance with Aunt JA 

A little rain doesn't stop Maura and Kaitlin from going outside! 

Brian and his youngest brother, T, prepping potatoes 

The girls designed their own "show" for the 4th of July.  Since it was rainy and we wouldn't be going to any fireworks, they decided to put on their own show for us.  They hand made fireworks pictures they hung up on the wall.  They put together a little choreography to a song (of all things Justin Bieber - gag) but it ended being really super cute. I was impressed how they worked together and came up with their own dance.  They also did a few patriotic songs and our National Anthem (with some impromptu key changes..haha .. but hey, at least my 8 year old knows the words.  A lot of adults can't even say that!)  The girls also made some paper flags for props and got the 4th of July spirit going.   Gotta love the creativity of kids!

Good job on the words Reilly (warning: random key changes) :)

The girls special choreography they designed (sorry about the song) :)

So all in all our 4th of July week turned out wonderfully! We had a little rough start to the week with Meagan, but I was really glad it ended up being mostly good news.  I mean, leave it to my kid to grow brain out of the front of her head. Sigh. Meagan just always has to do things her own way... show off :)  But, the positive is definitely the fact that we have new growth at all...now we just need it to settle back where it needs to be. So until then of course I'm going to be a little bit of a crazy woman protecting the front of that head.   I guess just another way Meagan is certainly independent in her own way (as is Maura who if you notice in the picture, obviously dressed herself for Independence Day... oh well, at least she took the theme to the fullest extent).  We hope everyone had a Happy 4th of July! We certainly enjoyed ours and are ever thankful for God's blessings to our family and this great country.

Meagan sporting her 4th of July outfit from Uncle R and Aunt JA

My 4th of July gaggle 

Finally got smiles out of my girl last night! 

Joy

Anyone who has a house full of kids (especially girls, I might add) always gets a good dose of "drama" throughout the day.  My favorites are really the "non" problems that get made in to 'something' because someone gets 'annoyed.'  I constantly hear "Mom she's looking at me.......Mom she's making an annoying sound .... Mom she's copying me!  Mom, she's STILL copying me!!"  I try to remind the girls that little siblings copy the big ones because they look up to them...they are trying to be like them and that's a huge compliment.  Sometimes that explanation works...sometimes it doesn't. But that's a house full of girls for you.  It's always entertaining around here.   

Is there any doubt these faces could be anything but entertaining?!

Reilly playing peek a boo with Megs between competitions

Anna getting some Meagan snuggles

What the girls may not know is while their sisters copying them is really annoying (I get it... I had a little brother and this was one of our favorite "games" with each other... who could outlast the "copycat" best...), they are actually helping Meagan at the same time.  Everything they do is teaching her something. Even if it doesn't seem like it at the time.

Kaitlin "reading" with Meagan

Meagan is in a huge mimicking phase right now.  Ever since she has recovered from her last illness, she is doing great.  She is happy, healthy, and just absolutely loves to be around her sisters.  (Dare I say it...she is doing really well and is finally on a good streak for the first time in months! :) )  She always "played" or smiled around them, but now she wants to copy them.  It's been another "jump" in Meagan's development we have noticed in just the last 3-4 weeks. 

Meagan loves to watch the girls' face, mouth, hands.. and just stare. And stare. And almost study their every move.  Then within a few days, we see her trying to do some of the things she's been watching. At first it's almost robotic - like those newborn baby movements where it still looks like they are underwater. But then within a few weeks, we will just notice one day she 'does it.'  Like it's something she's been doing forever.  

Meagan trying to "jump" like her sisters

I  have to give credit where credit is due.  As much as I can joke around about the times my girls annoy each other (they would get an A+ in Drama), I also have to be fair.  They really are just such good girls.  As with any siblings, there are times where they need space but can't get it... so we get the "mom she's _____ (fill in blank with whatever annoying behavior they are doing at the time)" ... but overall they are so good.  They are sweet to each other and help each other out constantly.  This transcends down to Meagan as well.

Meagan trying "so big" on her own

 

I always look at my girls in awe each day.  Even the times they are having their "drama moments" I think what a boring life I would have without them.  They are all such blessings, and now with Meagan, I realize their greater purpose.  Meagan has a team of doctors, therapists and specialists.  She has me and she has Brian who try to give her everything each day.  But truly I'm realizing her sisters are her greatest teachers.  Her greatest advocates. And will be her greatest guardians as life goes on. (So don't mess with her or her team will corral around her in a second!)

Kaitlin helping Meagan with a little practice

Maura attempting to dress Meagan (this one is funny..but then again it's Maura)

So now when one of my girls complains someone is "copying them" ... I just turn it around tell them to go show Meagan.  They usually smile and then run off to show her.  And when Meagan starts copying them, they don't mind one bit.

Meagan copying Anna (before whacking her in her loose tooth) haha

God of course is the absolute center of our family's spiritual life.  Meagan, though, certainly grabs the "center of attention" position in this family. But that makes sense to me.  Because she is the most innocent.  She sees things as they are and she has no prejudice about anything or anyone.  She loves with all her heart and sees joy in every situation.  So the fact that she steals the show doesn't surprise me.  If God is at the center of our hearts, it only makes sense Meagan comes in second... she, afterall, is so close to God's heart.  And that joy is the gift she can give my girls in return. 

"Joy is a net of love by which we catch souls..."

--- Blessed Mother Teresa

God's pure joy

 Sometimes being the little sister is exhausting

Postcards

There is a "famous" blog post called "Holland."  It talks about the life changing experience of having a child with special needs by comparing a trip planned to Italy being diverted to Holland.  It is inspiring and comforting for parents new to this journey.  Recently, however,  I came across another blog post (which you can access here), that was more true to point. While "Holland" is certainly uplifting, this new post I read was the true nitty gritty of being a special needs parent.  It instead describes planning a trip to Paris and then unexpectedly being dumped in the middle of a desert. As I was reading through the funny and bluntly honest emotion the author wrote, one line in particular stood out to me.  The author states, "At times, you're lonely for all the friends you had who went to Paris..."   Wow I thought.  That is so true.  And something I really hadn't thought about until I read it.

In the midst of this new adventure, we change. That is to be expected, as with any new experience we go through in life.  Even on the new path Meagan led us down, we felt prepared for the changes our family would undergo.  What we didn't prepare for is how when we finally came up for air, life around us would have also moved on.  Friends who had been on our same trip to Paris would have not only been there by now, but settled in and seen the sights.  I think sometimes it is hard on both parties.  We yearn for the friendships of the past, while at the same time, our old friends yearn for a way to relate to our new life, or somehow understand what we are going through.  It's only natural that this occurs - none of it is good or bad.  It just is what it is.  But even more importantly, what I realized after reading the blog, is that while sometimes we may have those fleeting moments of wishing to be close to our Paris friends, the desert, while unexpected, is certainly not lonely.  Others have been dropped here too.  And new friendships are formed and flourish.  Because only the other desert residents truly know what it is like.

 I guess this is no different than other life changes.  All of life's new paths bring both excitement and nostalgia, happiness and sadness at the exact same time.  That's what change is.  But what we have to do is just realize that it's ok.  Our new friends in the desert are ever so special, and the bonds formed become unbreakable. At the same time, we wish our Paris friends well and enjoy reading about all their new adventures.  We are happy for them but no longer yearn to go to Paris because we can't imagine our life not being in the desert.  Would life without Meagan be worth it to have made it to Paris? No.

It seems a good opportunity to say to  my Paris friends I miss you, but I always think of you.  I wish you all the joy in the world and am ever so happy you made it to the planned destination.  We may not talk as much as we used to, and we may have different lives now, but that's just the transformation that happens.   I also understand it may be hard for you to figure out how to relate us now...our experience as special needs parents is foreign to you, and it may make you unsure if we can relate anymore. And that's completely ok... But I assure you, we can.  We can still learn from each other.  I know you learn from Meagan everyday and how our life has changed because it is outside the norm you are used to. But we like to hear about Paris too.  Let us know how things are.  Send us a postcard and let us know what Paris is like. And we'll try to explain the desert the best we can.

You can access the blog that inspired my post here :http://not-hothead-yet.livejournal.com/703116.html

I scream...you scream....we all scream.....

.... for putting a ball into the toy! Yep, you read that correctly.  Not ice cream!

The girls were helping Meagan try out her new toy when I heard screaming from the other room. Like blood curdling loud girly screaming.  I ran in to see what had happened.... and Reilly told me "She did it mom! She got the ball in the toy!"  Whew! These girls....

Just something as simple as helping Meagan put a ball into a toy.  These are the little moments of joy that happen in the Gareau household.  And I love it!

The Infamous Shoe

The hospital stay last week was unexpected, and therefore, so was our weekly "schedule."  I missed all my girls' end of the year parties, Kaitlin's field trip, Reilly's violin lesson, and the list goes on.  Not to mention the household chores (namely laundry) that completely fell behind from me not being there to balance out the family.  These interruptions, especially the unexpected ones, always take a toll on the family in one way or another.  We have come to learn that this kind of up and down will never change - it's out of our control.  We could have another hospital stay next week - or avoid one for a whole 5 or 10 or 15 years.  But, the fact is, we never know.  We can control, however, how we live with this.  Something I've been asked by some family and friends is how do you live day to day when you are just waiting for that infamous shoe to drop?

Meagan doesn't do shoes

Meagan came home Thursday night from the hospital.  Friday she was still pretty miserable - back to "herself" a lot more, but, I could tell she was still "down." Saturday morning she really woke up "herself" for the first time since her infection.  She was smiling, babbling, and just seemed like the meds had "kicked in" and helped her turn the corner... I could tell she had really started to feel better.  I was so glad about this, but of course the rest of our house was in chaos.  I had lost a week of laundry, house chores, and organizing the kids end of school year stuff...but most of all we lost that week of time as a family.  I knew my older girls were especially feeling this because they really count on our routine day to day and when Mommy isn't there, it is really tough on them.  We  had no grand plans for the holiday weekend, but, after talking to Brian we decided to randomly shoot up to Chattanooga, TN.  It's only about an hour from where we live and makes for a nice little getaway without being too far from home.  I figured we could all use the break, and time away to just regroup as a family.  We packed a small bag, loaded up Meagans feeding pump and meds, and hopped in the car. The girls were beyond excited!

Finally strong enough to go in Mommy's Ergo carrier!

Girls were so excited

We planned a few outdoor activities while in Chattanooga, one of which was taking the girls to a minor league game (which is great because the seats are cheap and close so they can actually see the baseball game).  We happened to sit next to a couple who we chatted with off and on throughout the game.  Come to find out, he was a Perinatologist.  Go figure.  They were very nice and even bought our girls popcorn because they were behaving so well.  I thought that was really sweet and the girls were just so excited to get an unexpected treat. They also got to see some fun fireworks after the game celebrating Memorial Day weekend.  Maura was not too fond of the noise...but Meagan liked them just fine!

Meagan loved the fireworks.....

....but we learned she does not like hats on her head!

We also planned a few hikes through the famous Rock City and also underground to see Ruby Falls.  It was such gorgeous weather, we figured a lot of outside activity would be great for the girls - and the fresh air would be great for Meagan after being in the stuffy hospital the week before. The girls enjoyed the hikes, exploring the natural rock formations, and expending a lot of energy walking, running, climbing and overall enjoying the outside activities.  From rock climbing to watching live mountain music to swimming at the hotel - we had such a great time and a much needed break away from it all as a family - "just" the 7 of us.

Pool time!

Seeing Rock City

Heading down into the caves

When we got back, one of the first things I was asked was how Meagan was feeling.  I replied that she was doing much better and had been such a happy baby over the weekend.  And that's when the question was posed - how could we just pack up and go away for the weekend when Meagan had just been at Children's? Weren't we worried?  And that is where I realized that from the outside, a lot of things we do probably do look a little "crazy."  From the outside, it may seem silly to run out of town on the tail of a hospital stay.  Or to plan a family vacation after a surgery.  And the list can go on and on.... but from the inside, it is completely normal to do these things.  If we try to wait for months and months of uninterrupted time to feel "ok" to plan family activities, we would never do anything.  We would always be waiting around.

I guess that's what I learned over our weekend away.  Thinking back on my friend's initial question the week prior about "waiting for the infamous shoe to drop" .... I guess we just don't.  We don't wait around. We don't constantly worry. We just "do."  We just "go."  We just live.

Meagan taking in the waterfall

We will always be vigilant in Meagan's care - we just know her and her tendencies so well at this point, we keep a very watchful eye.  We carry her records and her CT scans with us.  We take her meds and her feeds along.  We always know the best place to go in case of an emergency.  But from day one, our main goal for her was happiness and love - that she always felt those two things around her.  The best way to do that (besides insanely spoiling her with attention and hugs and kisses) is to live and let her live with us.  If we were to always sit around waiting for that shoe to drop again, we wouldn't be giving Meagan a life.  Sure, things may happen that are unexpected.  But that's when you pull up, deal with it, and then hop right back on the horse.  We don't want to give her a life of waiting.  We want to give her a life of "get up and go."  So that's what we did last weekend.  It was random and it was on a whim.  But that's the joy of life. Unexpected things can pop up at any time, and that same spontaneity is how we should deal with life when things are going well.  So, while there may always be that "what if" or that "what else can happen" at the back of our minds, we certainly don't let waiting for those things to manifest occupy our focus.

No waiting in this house...on to the next adventure!

It is important to me that, above all, I keep our family unit strong.  We do that through everyday things like helping around the house, playtime and trips to the store.... and also through impromptu things,  like our trip last weekend.  While my girls will grow up more sensitive to people with needs and challenges by having a sister like Meagan, I also want them to grow up knowing that life shouldn't stop because of it, and exposure to many different experiences shouldn't halt at the feet of those like Meagan either.  In order for me to teach them how truly precious life is, we have to live it even if on the heels of another setback.

Life is too short to wait around.  If we did, something great could pass us by.  I don't want Meagan to be a bystander.  I want her to be the driver of her experiences.  The infamous shoe is there. We know it.  But until it shows its ugly self again, we press on. There's no waiting in this house.  We cherish the happy.... we share the love....we grasp onto faith.  By doing this, we live. And I think Meagan likes that. :)

 Taking it all in

No one said life isn't exhausting at times :)