Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Tuesday, August 27, 2013

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.

Saturday, August 10, 2013

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

Grandpa and Megs

Cousins at the Feis!

Park time

Meagan's first train ride!

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.

Thursday, August 1, 2013

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!