Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Tuesday, January 20, 2015

Oh The Places She'll Go....

"Being optimistic isn't always being happy.. it's taking what the world throws at you and saying "I'm not going to let this get me down."

We have had quite a week.  The van, as you know, had to be taken in to be fixed.  After a complete cluster of problems, we finally got it towed and to the collision center.  After a mess of other issues, it seemed to be on the way to being fixed.  However, the mechanic called us (who we have worked with several times in previous years for other things) and said that Honda had actually sent him all the wrong parts so he would have to wait until they sent him the correct parts which meant he would now be delayed until later this week. When I called today to check, Honda had sent only a few of the parts and one that had to be painted, was not.  So now we will have to wait for that part to be painted before it is installed... more delays.  Meanwhile we were on day 8 of a rental minivan and I had to call Avis to make sure we could extend.  Luckily the employee was extremely nice and worked really hard to find us whatever deals he could so we could get the lowest rate possible for the extra days.  It's a good thing I didn't think we were out of the woods yet because we woke up to a flooded downstairs bathroom and basement/garage.  The main floor bathroom and the basement apparently were the victim of a backed up pipe that was laid improperly under the driveway and is now starting to act up. It is going to be a big project to fix (digging up driveway, other drains, a tree and our basketball hoop) so for now we are just having a plumber come out to clean everything out through the line, and we will have to tackle the long term solution at a later date.  It's been stressful with the car and now water issues - a few doctor appointments had to be missed, I have had to call out of some of my teaching days, etc..etc..  I actually did end up laughing at all of this because the more I contemplated everything that has hit our family over the last few months, I thought about how unbelievable it all sounds.  But trust me - you can't make this stuff up. :)

Meagan thinks it's been pretty crazy around here!

Despite all the setbacks, we still have had to tackle some appointments and obligations and we have a lot to report!

School: The older girls got their first report cards from their new school.  Happy news all around.  Mostly straight A's, improvements in a few subjects where they had been lacking instruction previously, and even better, wonderful personal comments from each of the girls' teachers on each report card.  
Meagan is also thriving back at school.  She is bringing home art projects and notes about her daily "jobs" at school. Last week she made a snowflake picture.  The teacher said the other little girl in the class (who is a bit older than Meagan) loves to pair up with her and help Megs with her projects.  I love hearing how Meagan is not only making friends, but learning how to work well with others (that aren't her sisters).  It was also special because another hydro mom (Parker's mom) always has referred to the hydro kids as 'snowflakes' in the past - each unique and different, but each so beautiful.  I loved that Meagan came home with a snowflake picture.  

Neurosurgery Update: Meagan had her follow up appointment to get her staples removed and to go over everything with Dr. R since he had been away during her Christmas/New Years issues.  Meagan was a little nervous at first, but she is getting a lot better about going to certain doctor offices.  When we walked in, she said hi to the front desk staff.  Then, the waiting room TV started to play Frozen... well that was it.  She was in heaven! She scooted over to the little kids' table they have and said "Mama com'ere!!" I went over and placed her in the little chair and that's where she sat while we waited.  Perfectly content.  Perfectly happy.  Frozen was on, she had a Frozen dress on, and had listened to Frozen music in the car.  Her day was made. 

We saw the nurse first who removed Meagan's staples.  It went very smoothly, but I did feel badly because the incision on her neck is still so tender.  Luckily, the nurse was able to move really fast so Meagan was in minimal pain for minimal time.  Soon after, Dr. R's PA "Elsa" Blaire came in.  Meagan gave her a big hug and snuggled with her for a few minutes.  She showed Blaire some pictures and videos of what she had been up to lately.  Dr. R came in and went over briefly what had unfolded with Megs over Christmas.  He was very happy with her incision sites and how Meagan looked overall.  He felt her defects were at a good balance, and Meagan's mood was obviously great.  Meagan got a little shy when he asked her to sing him a song, burying her face into my shoulder (ha), but she perked up again and gave Dr. R a high five before he left the room.  We made a tenative repeat scan and appointment for July (and we hope Meagan sticks to that schedule!).

PT News: In PT, Meagan has been making some good strides in being comfortable with her walker.  It took months for her to even approach it without screaming, as you remember, and now she is comfortable enough to try it with assistance, and then recently has pulled herself to stand in it.  Her determination in her mind is definitely a little ahead of her body.  She has tried many times to use the walker on her own, but she is actually still quite unstable in her hips and lower legs.  She managed a step and then would twist, collapse, fall, or go face first into the carpet.  The good news is none of this has frustrated her to the point of not trying anymore, but the reality news is her legs/lower body just aren't "there yet" for her to use it on her own.  The PT came up with a great idea to help balance this - we took one of my really soft Irish scarves and looped it around Meagan's torso, just under her arms.  We hold the end of the scarf to lift some of her body weight and be the "balance control" while Meagan manages the walker and wahlah! We are able to help her use it as independently as possible right now.  With the scarf "harness," she will spend a good 5 minutes trying her walker.  She is fairly good about telling me when she's finished because she will either just stop and be breathing heavily (it's quite a workout for her!), or she will say "scarf off," or "no scarf"... which tells me "hey mom, I am so done. Get me out of this thing."  I'm glad Mrs. M (the PT) came up with this idea because any straps or harnesses are defiantly rejected by Meagan through screams, resistance, and basically giving up on the task at hand - so the scarf seems like a happy medium to let her use the walker and practice, but also give her the assistance she needs right now to actually walk in it as much as she wants.  

Orthotics news:  Meagan got fitted for her new AFO's today. (we will reveal her new color pattern when they actually arrive).  This time, there will be no tread and there will be a screw at the ankle joint to allow her some ankle movement when she stands or uses her walker.  Mrs. M is hoping that this helps with her balance because being able to access that ankle joint could give her a little more help in catching herself if she feels like she's going to fall over.  Mr. Terry (the orthotics tech) should call us when they come in and then we will go for her final fitting and get to bring them home!  One thing that will be new with her upcoming AFO's is wearing shoes.  With her current AFO's, Meagan has the tread on the bottom, so no shoes were worn with them.  This was done because of her weak legs and the fact that she couldn't lift her leg with an AFO and a shoe on.  Of course she has gained some strength so Mrs. M is putting her in to regular AFO's now and so Meagan will need shoes.  Meagan does not like shoes.  At all! She loves admiring others' shoes, but she cannot stand having shoes on her own feet.  Complete sensory melt down.  So we decided while we are waiting for her new AFO's and shoes, we want to tackle this as best we can.  We went to look at shoes with Meagan on numerous occasions and none would do. If you were ever shopping anywhere in North Georgia, you could probably hear Meagan's blood curdling screams coming from the stores we visited. She was fine... I was (God forbid)...trying a shoe on her foot.  (**insert eyeroll here**)  So we continued onward.  One day at the store, we once again were trying shoes.  I had to find something she would wear for fun here and there so shoes weren't her arch nemisis by the time her new AFO's came in.  We had just tried on a pair (with the same screaming result) when Meagan looked at the shelf and pointed at something.  "Ms. Emma shoes," she said.  Total confusion on my part.  "What?" I asked her.  She said "Ms. Emma shoes....".... then I looked and it dawned on me ... one of the Irish dance teachers has always commented on these cute leopard print pants Meagan wears.  The shoes... yep, they were leopard print.  Piggybacking on her reference to dance, I made a big deal about how they were shoes just like "Ms. Emma" and how we should try them on.  A few tears, but no screaming. Score! So now we have some "fun" shoes to wear so we can try to desensitize some of Meagan's fears/aversions to wearing shoes.  Although something tells me when her AFO's do come in, she will be demanding "leopard shoes" or "Ms. Emma shoes" to go over them... sorry kid... the AFO shoes do not come in leopard.  

We have had so many little "victories" over the last week, that you would think one of the many negative "events" would have put such a damper on it all.  But when I see my older girls happy and thriving, and I see Meagan having come so far with all the battles she's had to fight -  the car, the house, the bills - they just don't matter.  They are certainly setbacks, and that's a fact.  But if it's a fact, then why lament over it.  The other facts of the week are much more fun and joyous to focus on, and that's what makes the journey so much sweeter.  As they say, "when everything feels like an uphill struggle, just think of the view from the top."  I would say we are on a steep uphill grade at the moment (ha), but I think of what that part of a mountain trail is like.  It's hard, it's steep, and you can't really see the top yet - but - you can see glimmers.  Those bright glimmers of sunshine that come through the trees and almost blind you momentarily as you huff and puff up the trail.  We have had several of those glimmers this week, so I know the full view at the top is going to be amazing.  For now, though, the glimmers are plenty to keep us going.  

I find it rather fitting that I sat down to write this post today when we celebrate the legacy of Dr. Martin Luther King Jr.  One of his famous quotes certainly spoke to me this week, and I believe speaks to Meagan's journey every step of the way...especially in the times where it seems a bit challenging.....  

"If you can't fly, then run.  If you can't run, then walk.  If you can't walk, then crawl, but whatever you do, you have to keep moving forward."

And if Meagan has her way, moving forward is just what we're going to do! 

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