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 :) 

The Value of a Dime

Last week started out pretty typical.  End of school stuff for my older girls.  Therapies and happy mornings for Meagan.  And the day to day household chores and "to do" list that never seems to end.  Monday night I noticed Meagan seemed a little fussy, but, she is also getting some teeth so I chalked it up to that lovely stage of infancy...gave her some Motrin...called it a night.  But Meagan had different plans.

She didn't sleep that well that night.  And when I picked her up to hold her, her hands felt burning hot to me. Ugh. I knew what that meant - fever, and usually a high one.  With Meagan, her head is always hot (perhaps a clue of her personality?) ;)  But her hands are always cool.  When her hands get hot, I know she has fever. It's just one of those things I've learned along the way as one of her "tells."  I took, her temperature, and sure enough - pushing 102. I figured considering her mood the night before and the new fever, I should get her checked in the morning.

Something was off in my baby girl

I called the Pediatrician in the morning and they worked her in quickly.  We got to the office and she was increasingly miserable.  My happy girl had awoken screaming and crying...and had. not. stopped. all. morning.  She screamed and cried through our car ride....through our wait at the office....through the whole appointment.  I thought for sure it was ears.  Everytime Meagan has had fever and been miserable, it's been ears.  But nope! Her ears were fine.  Matter of fact, her Pediatrician said they looked better than ever.  Well darn.  Bit by bit, we checked all the "common" illnesses off the list - ears, strep, congestion, sinus, head cold, flu, etc..etc.  We were left with nothing but a screaming baby, a fever that was even stubborn to Motrin and no clue what was wrong.

The Pediatrician decided to go ahead and do a CBC in the office to see if anything showed up in her blood to give more of a clue as to what was going on.  Results came back - her white count was off. the. charts. high.  Dr. B suggested we take her in to Children's since she had fever, an extremely high white count, and to that point had been comletely inconsolable. I agreed because this was not my Meagan.  Not even last year when she had been so sick with a virus had she acted this way.  So off to Children's we went.

Meagan got checked into the ER and triaged by the nurse. We didn't even have to wait.  She immediately put Meagan in a room, and from there we immediately to an ER room and got settled.    And Meagan at this point? Yes. Still screaming. Inconsolable.  The doctors and nurses came in to see her - did the usual stuff to double check Dr. B's findings - and they came up with the same results.  Nothing "common" checking out, extremely high white count (which at this point had risen even further), stubborn fever, and now her CRP (c-reactive protein) was also high.  And... she was still screaming (and now it was about 6 in the evening).

 

Since all typical problems came back ok but the rising fever, blood counts and crp were suggesting definite infection, her CSF had to be tested.  They decided to test it through a lumbar puncture so they could culture it out over several days and see if anything showed up.  The ER doctor commented how surprised he was at my calm demeanor.  He said he has dealt with so many parents freaking out.  I can totally understand that - when it comes to our babies, we all "freak out" in our own way... and maybe I was on the inside - but it's just not me to be that way outwardly.  Meagan would have to be sedated for her lumbar puncture because she was so miserable - I was actually fine with that because I knew it would be better for her, and also would give her a moment's rest in a day full of crying and screaming.  She would have to be taken to another room to have the procedure done because of the sedation. I asked the doctor if I could go with her - he seemed rather taken aback by my question, but  I'm guessing he read my face pretty easily... which obviously said "I'm going with my daughter everywhere so just get used to it."  Ha... I may not be a freak out parent, but, I'm positive my body language and facial expressions are always clear that Meagan and I aren't to be seperated. So off we all went to sedation.


Once all the testing was done, of course, they decided to admit her.  Honestly, I was ok with that.  Typically I would fight admission for what I truly felt was a viral issue - but this time, I just knew it wasn't.  And Meagan was telling me that.  Except for the 20 minutes she was medically sedated, her behavior STILL had not calmed down.  She was still screaming, crying and just miserable. They even tried to give her some Versed to take the edge off.  Now Versed for those who don't know is a drug they often give just before surgery.  It makes you feel immediately loopy, happy and basically really drugged.  Meagan has had it before her surgeries - and even when she has been upset, within seconds, we see a happily sedated Meagan in a much calmer state and doing much better.  Well this time, that did not happen.  She was still screaming and miserable even after the Versed.  I was honestly shocked because historically, this is a medicine that really does calm her quickly.  They decided to try a bit more and push the dosage - and still NO relief.  At this point she was rolling and flailing her head into the sides of the crib, hitting her head, and was just a huge mess.  I had to physically hold her in the middle of the crib until she finally passed out around 2am to prevent her from hurting herself.  It was quite the night.

Finally passed out under 4 blankets

They had started treating her empirically for infection when we were still down in the ER.  They knew there was infection but just couldn't find the source.  There was the possibility of shunt, there was possibility of g-tube (which looked pretty bad actually) and there was the possibility she had picked up something in her 4 hospital stays and 2 surgeries she'd gone through in the previous month.  When Meagan awoke the second morning, she was still miserable - but - her fever had broken.  24 hours after IV antibiotics, I saw the first "glimpse" of "normal" Meagan.  At least without the fever, she wasn't as hot anymore.  The doctors still saw nothing growing in the cultures (which frankly, I was glad about because who wants a blood or spinal fluid infection??!!) but it still was annoying we had no "clear" answer.  They decided to recheck her white counts - they were still high so they decided to keep the IV antibiotics going through the day.  By the end of the second day, Meagan seemed calmer.  She was obviously miserable and tired but she was FINALLY not screaming all the time.  I knew the meds had kicked in and luckily had stopped whatever infection was starting.  Upon the next blood check late that night, her whites had started to fall...a great sign attacking with antibiotics was a good course of action.

Awake - not totally better but at least not crying

Day 3 Meagan woke up much happier.  Matter of fact, she woke up, looked around and said "Dada. Dada."  This is how she typically wakes up... so I knew we'd finally turned the corner.  We saw Meagan's NSG, her GI and the general Peds who were on call at that time.  All concluded she had picked up some sort of post surgical staph infection, but, because I was so on top of bringing her in, they feel they kicked the infection before it spread into her blood or csf.  They said because she was doing so much better, and her white count had dropped again, along with her crp finally coming down, she could go home.  But she would be sent home on a 14 day heavy antibiotic to make sure we knocked off whatever was left of the infection.  I was fine with that!

Finally calm and getting discharged

So needless to say, once we got home, I kinda of chuckled.  I had just posted about Meagan doing so well and how she wakes up so happy.  And then bam, we were back in the hospital.  Just goes to show you how things can change on a dime.  One minute I was enjoying my smiling little girl, and the next, she was screaming and hot in my arms.  A dime can't get you much these days.  Not even a stick of gum! But I must say, after experiencing how quickly things can change, I see the value of that dime much better now.  Things can change in an instant with these kids - and sometimes people (especially those not dealing with this stuff) forget that.  As quickly as things can go bad, though, these kids return to good. And so quickly.  They are rockstars. So that's what we are focusing on.  Those happy smiles.  Thanking God we caught infection early.  And having a whole new view on the value of a dime....let's keep it on the good side for a while!

Recovering at home

 

Even on my worst day .....

I am not a morning person.  Anyone who knows me.. knows this.  I am a night owl. I love to stay up late. Read. Write. Clean.Until the wee hours of the morning.  But by default, I "have" to also be an early morning person.  With kids, one doesn't get a choice.  Even if I'm a night owl at heart, I am forced to get up in the mornings.  I don't like it and often I'm half asleep and grumpy.  Then there's Meagan.

http://www.youtube.com/watch?v=6dZpDB_GTBg&list=HL1369057341&feature=mh_lolz

She has been through so much, and yet each morning, the first thing she does is smile. Or laugh. Or look  in wonder at the world around her.

So I was thinking....even on my worst days, I should try to be more like Meagan.  Just wake up. Smile. And take the God given gift of a new day to try again and do better.

Life is Good

I just realized it has been a little while since I posted an update on Meagan.  That's truly how busy we have been!! The household never stops - it's our way of life.  But I'm happy to say that the latest busy times have been all for good reasons. We have had recovery times at home with Meagan, First Holy Communion of our oldest daughter, expected and surprise family visits, the school year winding down, our third daughter graduating preschool, and Irish dancing craziness with competitions and classes.  Meagan is a trooper through it all - she just tags along to whatever we do and so far seems to enjoy it.   I hope this means things are on the upswing for Meagan and for us as a family.

End of soccer!

Irish Dancing winners!

First Holy Communion for Reilly!

Preschool Graduation for Anna!

Meagan hanging out at the graduation party

Enjoying a visit from Nanny

Ever since Meagan's Chiari surgery she has been a new little girl, as I posted before.  But we have seen this again following her g-tube surgery.  I know now her little body was definitely needing some more nutrition - within 5 days of getting her tube placed, Meagan gained a whole pound. A POUND.  That is crazy.  She had barely gained a few ounces in over a year.  What was more amazing than the number on the scale is the immediate strength and "fulfillment" I have seen in Meagan since then.  She just seems better all around.  Happier.  More content. Stronger. Chunkier :)  It's amazing what a little nutrition can do.  I'm so glad we decided to put the tube in -  I have seen the amazing changes in her body and attitude from the added calories and nutrients.... a part of the puzzle I think we often overlook when worrying about our child's development.

Enjoying a "spa" treatment from her big sisters

Meagan got back to her therapies just a few weeks ago.  We waited a bit because of all the surgeries and hospital stays - and because of her PEG tube.  While doing well with it, it was extremely tender for a few weeks after, so it made most of her work at PT basically useless since all of it seemed to hurt her belly.  I was in no rush to push her back into therapies because my first goal was for her to feel well and get better.  Once I started seeing her personality coming back and all the good changes, I knew it was ok to get back to her PT and OT.

Her first few sessions back, she was of course miserable.  She wasn't used to working for an hour anymore, and also was just tired from being out of her routine.  We figured it was going to be a gradual road getting back to where she was pre-surgery and we were fine with that.  We work on "Meagan time" not on any other schedule when it comes to her therapies and development, so we just sat back and let her take her own path.  Well apparently, Meagan had other ideas about her "timeline."  Literally in the last few days, she has started to try and sit up.  Yep. It's been that sudden.

 Typically, Brian and I try to have some down time when the kids are asleep and watch tv or something similar while finishing up some laundry or other chores.  Meagan will lay in her nap nanny and start her bedtime routine and I will hook up her feed and get it going.  She will generally play with her tube line or even chew on it (silly girl) and then tries to flip every which way in her nap nanny, but will finally drift off to sleep.

Typical Meagan when falling asleep.......

Out of nowhere the other night, I turned to look at her and she was sitting forward in her nap nanny playing with her toes.  I had to rub my eyes to check again and yep! There she was. Just pulling herself upwards like it was 'old hat' or something.  I could not believe it! Since that time a few days ago, if propped up in a sitting position on her blanket, Meagan can hold a one-minute sit on her own before she topples over! I think for sure this summer, we are going to have an independent sitter on our hands which is really exciting. But first we have to get her using her arms and hands.  She still REFUSES to put much weight through her arms for the most part.  So while it is exciting seeing her try and sit, we have a lot of work to do with her arms.  We have to also be careful to balance out her desire to pull up with more tummy time or back exercise.  Her little tummy is getting very strong, but, her back is weak which is making her lower back start to curve.  So we will definitely have to find a balance of strength there while continuing to encourage her to do the things she wants to do.  I think as soon as she realizes she can use her arms to help her sit up, or to stay sitting once in a seated position, she will be do it without hesitation.

Ummmm.. ok!

Cognitively, she is a complete ham.  Meagan has always had a "funny" side to her, but it has exploded especially in the last week.  She is copying everything her sisters or I do.  She always loved observing people, but, now she literally tries to mimic everything she sees. It's hilarious to watch because sometimes the signals into the brain don't always match what comes out in her action.  At times you can almost see herself looking at her hands or arms like "Why did you do that? I didn't tell you to do that!"  It's something I am always amazed by.  Watching the process.  Something I missed with my older kids.  Not because I didn't pay attention, but, simply because they just "do" the next thing they are supposed to do.  With Meagan it has been quite interesting to actually see the process unfold for each of her movements or gestures.  You can literally see the messaging going into her head - her thinking about it - and then an action resulting from that thought.  It is amazing.

Meagan's newest "tricks":

"ahhhhh"

"No no no!"

"oh my" (and she also fell asleep like this)

"Where's your ear Meagan?"

"Shhhhh"

She did have a little bit of leakage coming from her tube site this last week.  The typical "ooze" was ok - but we actually started having blood...and then more blood.  Luckily she had her GI follow up yesterday.  Dr. B said that he would just go ahead and cauterize the skin right there in the office to take care of the bleeding so it didn't lead to any worsening problems or infection.  It took about 2 seconds to do and the skin is all better now. No more oozing or bleeding and her site looks great.  He was very happy with her weight gain and her recent developments, so now we just keep on what we are doing and she will get her MicKey button put in around the second week in August.

 This is Meagan with her sweet cousin who is always looking out for her. They are so funny to watch together!

Overall we have had a calm and happy few weeks with Meagan and all our girls.  We are so thankful for a few great weeks in a row (what's that??) considering how awful the last few months has been.  Of course we will always have hits coming.  Medical bills are starting to trickle in from the last few months ....and our lovely air conditioner that has now decided to quit before summer (I mean, really!?) ... but who ever really gets out of the fight? That's life.   With all the good happening right now, it is my choice to ignore all the stress and focus on the fun things that are going on.  Life is a process...just like Meagan's learning is a process.  It's an amazing thing to watch and the moment we forget that is the moment we forget to live.  Can't wait to see what's in store these next few months for our whole family.  One thing is for sure - we will certainly be doing a lot of living...and loving every second of it!

 Totally wiped!

Best Mother's Day with my girls!