Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Monday, June 30, 2014

Weekend of Adventure

With Meagan not even two weeks post op and Reilly recovering from Pneumonia the last week or so has been pretty quiet - keeping things simple, staying close to home, and not doing much activity so everyone could get to feeling better.  By Friday Reilly seemed to really turn a corner and had her first fever free day, and Meagan was still doing great so we were excited to enjoy a busy weekend as a family.

Saturday, the girls attended the Burke Connolly Academy send off for their dear friend Emmy as she goes off to the Irish Dancing Nationals next week.  The party was at a local Irish pub and it was a ton of fun for the kids and adults alike.  There was good food, good drinks, good company, and of course some Irish dancing put on by the kids.  Meagan found her own way to be involved and wanted to be right in the middle of everything (of course).  She is very spoiled by our Irish dance family, but we are grateful for that.  We wish we were also going, but we decided months ago it wouldn't be affordable for us this year....and as it turns out, with the timing of Reilly's pneumonia it was a good thing we had pulled her out of competing this year.  We wish lots of luck to Reilly's dance bud Emmy and safe travels for her family! We can't wait to hear results and get back to classes again!

Daddy and Megs relaxing watching some World Cup at the pub

Meagan finding her way into the middle of course. These girls are so good to her! 

After the dance party, we headed north to Johns Creek - our symphony was putting on an outdoor concert so we decided to go as a family.  Brian and the girls got settled in the audience and I went up to play.  The kids really enjoyed the music.  During the first few pieces, I could hear Meagan out in the audience going "yay!" and clapping.  By the fourth piece, I could see her completely passed out asleep in her wheelchair.  The other kids liked all the music and listening to the different instruments, and it helped it was outside so they had a lot to look at without being confined to a small indoor seat.  After the concert, we said goodbye to some of my fellow musicians and then headed home.

Sunday started out like any other day - we decided because of the late night to let the kids sleep in and we would just go to Mass whenever they woke up.  Everyone was awake in time for mid morning Mass, so off we went.  After Mass, we were heading home when Brian decided to cut through the Old Town square.  He always likes to drive through there and see what's going on.  I'm glad he did! As it turns out, it was the 150th anniversary of the Civil War and so the whole square was filled with real life exhibits and displays about the civil war.  They had several tents set up showing the type of food soldiers ate, the weapons they used, the medical care they received, and many many other things. We spent the entire afternoon exploring, watching and learning and eventually headed home in the evening.I'm a huge lover of history, and think it is very important, so seeing the girls really enjoy all the hands on activities was great! 

Live demonstration

Kaitlin getting to do a mock bullet removal in the medical tent

Checking out all the old foods and medicines from the Civil War

Watching the mock demonstration of lifesaving battlefield surgeries - 
of course this session it was brain surgery...  go figure.

Today Megs had her next PT session.  I was excited because I knew Mrs. M was bringing a gait trainer she has for Meagan to try.  We have been working a lot on standing and cruising, as I said in the last post, but we really want Meagan to get the feel for moving her legs separately so we can show her how walking feels..etc.  Her back is still weak so she spends a lot of time in her Benik support vest to help her control her trunk better and her knees still buckle a lot so the option of a plain simple walker was out of the question.  Luckily Mrs. M had this gait trainer available starting this week from another patient so she brought it for Meagan to try out.  Mrs. M sat with Meagan first explaining the whole thing and what the different gadgets meant and how it would help her.  I love that she does that - she has always done that since she started working with Meagan, even when Meagan was in more of a "fog."   She has always talked Meagan through things or explained things to her and treated her the same as my other typical kids.  I find so much value in that because no matter the level of understanding we can see on the outside, one never knows what may be going on inside these kids' heads, so I love how Mrs. M realizes that and always talks to them like fellow equals.  Having that in our PT is invaluable.  

 Mrs. M explaining what this new thing is to Megs

To help ease Meagan in to it, Mrs. M had Maura try out the gait trainer first.  Maura walked around in it while Mrs. M showed Meagan that it was "no owies" and would be lots of fun.  Of course Megs didn't like it because of being strapped in, etc.. she screamed and flailed for about the first 5 minutes... but then after that, she gave a silent "whine" through the whole session.  This is a good sign because it's the same way she acted when we had worked hard on head control, the same way we had worked hard on independent sitting... so I know she will adapt and get used to it. To clarify there is a sort of "saucer" seating element under the main straps that supports Meagan's bottom and upper legs.  Also as you can easily see there is a large padded strap that goes around her torso to hold her up, essentially.  So she is still 100% supported in this - but it lets us try to help her have time upright without us constantly bending over and holding her under her arms to help her stand.  It also lets her realize what she can do on her "own."  As she gets stronger and adapts to this device, we can slowly strip away elements of it until it is literally down to just the frame which she would hold on to for support.  There is really no timeline - it took her a good 16 months to learn to sit independently so we are in no rush.  The goal is to at least just get her comfortable so we can start instilling that feeling of standing and walking to build her confidence level which will hopefully in turn build her physical strength.  I'm excited to start putting her in it a little bit throughout each day so we can desensitize her to it and help her realize all the independence it will give her! 

Maura demonstrating for Megs

Not liking it too much, but we will get there.

It was quite a busy weekend, but also a good one.  Lots of fun times and learning opportunities for the girls, and I was glad to see my family back together again enjoying this weekend of adventure.  We try to do things like this with the older girls when Meagan is in hospital to distract them, but, it's so much more fun when Meagan can enjoy these things with us too.  I'm excited to work with Megs this week and see if we can get her a little more tolerant of her gait trainer.  If she can become more comfortable with it, I can see a lot more weekends of adventure in our future - but hopefully with Meagan moving on her own two feet!

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