Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Friday, January 31, 2014

Outside the Box

One of the most popular questions I get from others is "How often everyday do you work with Meagan?"  Truthfully, we don't work with her everyday.  It's very important for her to reach her potential that we do push her of course.  But I also just want her to be a kid. In whatever way that is.  So there are also days, we just let her play however she wants to - or just let her hang out with the girls and "play"... which I think is equally as important for her development as her PT/OT/Speech..etc.

The times she plays with the girls are when I really love seeing Meagan blossom.  I see her being silly, watching her sisters with intrigue as they talk or play, and even gaining her own "attitude" as she tries to "fit in" and make her mark among her siblings.  I captured a few videos and pictures this last week of the girls playing with Meagan. She has learned so much from them.  Nothing from a therapy book. Nothing from her goal chart from her coordinator.  But in my eyes, things that are far more special to her than her typical therapies.  While those are very important, I love how her sisters push her to think outside the box. Which is where Meagan likes to be. :)

The girls showing Meagan the piano 

Maura being silly and teaching Meagan about her dolls 

Reilly and Meagan taking in some old school Country Music Videos

Teaching Meagan body parts....in their own way :)

Thursday, January 30, 2014

18 miles and 3 days later.....

For about a week, I had harbored a nasty viral cold - just the typical wintertime "crud" that everyone gets once a year.  All 5 of the kiddos had been down with Strep on top of this virus, so being that moms never rest, I assumed that was why I was still sick when everyone else was getting better. I started to feel somewhat better with some of my symptoms, but I was still having pain in my chest and dizziness/fatigue..etc... I tried to rest and do what I could over the weekend, but finally as Monday came around and I really wasn't feeling "better" so I went ahead and made myself a doctor's appointment.
At my appointment, my doctor said actually I looked and sounded pretty good - she didn't think my residual cold was the cause of any of my issues.  She then asked me if I knew I had a heart murmur.  She said she heard a very significant murmur and wanted an echocardiogram to see the source to make sure it wasn't anything that needed attention.  She made me an appointment for the following day with my cardiologist's office for the echo.  I had a teaching obligation, so I asked her if it was necessary to do it that quickly or could it wait a week - she said based on the sound she would really like me in to the first available appointment.  I said ok and left the office.

Fast forward to Tuesday morning.  They had forecasted a winter storm coming through our area - but up until Tuesday morning, it was largely supposed to hit south and east of us - leaving us with a mere dusting and some cold nasty weather.  Brian dropped the girls at school and headed into work.  I dropped Maura at preschool, and headed to Buckhead for my appointment.  I got there around 10am and my scan started around 10:30.  About 11:45am, they finished up and we were headed home.  As I was leaving the parking garage, my good friend called and told me they were letting the kids out of school at 1pm, as it had started to snow.  I looked outside as we exited the garage and sure enough, it was flurrying.  No big deal - I would just head to school, get the kids, and head home for the day.

Within one mile of getting on the highway, it was literally almost blizzard-like conditions.  Snow everywhere. Big, wet, heavy snow that was freezing on contact when it hit the road. And cars were already stacked bumper to bumper.  I was 18 miles from home.

The traffic situation in the greater Atlanta area almost immediately

Luckily my friend called again as she neared the school, knowing I was on my way home from my appointment - and learning how little I had moved in an hour, offered to grab my older four girls for me.  I'm glad she did because in hindsight, if I had tried to get to the school, I would have never made it there - and possibly not made it home. I also decided to call Brian and warn him of the traffic - he said he was going to leave soon so he could get a head start home.

We inched along .. literally.  Moving maybe an inch or two and then stopping for several minutes - sometimes 30-60 minutes at a time.  I kept in touch with my friend who was still en route to get her kids (and mine) and finally she was able to get the kids.  After an hour and a half,  I decided to get off of 75.  It was literally an ice rink - people were sliding everywhere, and frankly, traffic had come to a complete standstill.  People were starting to abandon cars and walk - some ran out of gas, some broke down, and some just couldn't sit anymore .... cars and trucks were everywhere, and it was snowing like crazy.  Visibility was not good.  The next exit came up that was near enough to my house so I got off.  I literally crawled around the ramp, slipping and sliding the whole way.  I merged on to the main road and we stopped. We started to crawl along, inch by inch, never once touching our gas pedals.  If you did, your car would start to slide straight sideways.  So on we all went, just letting our cars pull us naturally over the ice and down the road.  It took me 2 1/2 hours to go 2.3 miles to the next major intersection where I turned left to head towards my friend's house.  She was also STILL on the road just a little bit ahead of me trying to get to her house (which was on my way home).  As we sat on that next main road, I realized I was also almost out of gas.  I heard so many "jokes" from others not in Atlanta about "why would people leave with no gas? See what happens when you wait until payday to fill up" etc etc... In fact, many people had full tanks of gas - but when you have been stuck in traffic for 7 hours, in subzero temperatures, and running the heat, the defroster, and many times the radio to hear traffic reports, the gas goes quickly.  I noticed mine getting near the "E" and started to get nervous.  I was only about a mile from the gas station but we were at a complete stop.

My view sitting right near the gas station - if you can see in the distance, I had to make it to that traffic light to turn into the gas station. But this is where I sat. For an hour. I kept a good distance from the cars in front of me for good reason. Our lanes were trying to shift - on ice - to get around the abandoned car blocking the way.... come to find out, they, too had run out of gas. 

We finally started inching along about an hour later - I was really really close to my light coming on.  I cut off my heat, the radio, and pretty much everything else hoping to conserve some gas.  Finally we inched along and we started to round the curve.  I was maybe 100 meters from the gas station - I could see it - but I couldn't get to it. We sat.  For another HOUR.  I saw several people start to get out of cars and walk - they were walking to the gas stations for gas, water, food, and anything else they needed.  I saw one man who had been walking from very far away for gas - and on his way back noticed a car near me with a mom and kids had just run out of gas - he stopped, filled up her tank, and walked back on the long trek to the station to get himself gas - again - since he had given his to her.  Traffic was pretty much at a standstill with people sliding and blocking intersections - and with others out of their cars trying to help total strangers.  I just started praying that I at least make it to the gas station so I could fill up and sit back in traffic.  Finally, we started slowly rolling forward.. little by little and I was able to turn into the gas station.  The first two pumps I tried were frozen and not working - the third pump I tried worked, thank goodness, and I filled up the tank.  I made my way back out onto the road... we were held up for a bit with people trying to make it into the other gas station - people were sliding up and down the entry drive, and others had stopped on the main road to go help those sliding push their cars the rest of the way.

By now it was about 4:30 and I was 2 miles from my friend's house. She had just made it home herself, after getting the kids from school  at lunchtime (she only lives 5 miles from the school).  I told her I had left the gas station and was inching my way towards her house.  It took me an hour to go those 2 miles.  Cars were sliding left and right - and finally I was able to make my way into her neighborhood. At 5:30 I arrived at my friends house -  I got the kids in the car, and checked on Meagan, who had been with me the whole time.  She was ok - but getting hungry.  Her feeding pump had died and I had no car charger for it - and also realized her medication time was fast approaching, and I did not have her seizure meds with me.  We went out the back way of my friend's neighborhood.... there are two lane "country" roads that way, but, I figured they could be no worse than the main roads - and I was hoping since they are less traveled the snow would have at least packed down a little more.  We made our way out the back roads and cut over towards the main road - still inching along. Although definitely more snow packed, the top of the snow at this point was frozen and conditions were very icy..even on these roads.  We finally made it to the end of the road where we turn at the stop sign to get back on the main road - Luckily, we were turning to go down the hill to the main road.  People coming up the hill to go where I had come from were sliding straight down backwards - no one was making it up the hill.  I put my brakes on, put the van in neutral, and slid down the hill to the traffic light.  Once there, I put the van back in drive and waited for someone in the snake-like line of cars to let us merge in.  Still not using the gas pedal (which only resulted in immediately loss of control), we slowly made our way into the line of traffic and started on our last leg of the trip back to the house.

The rest of the trip took 3 hours.  Yep... 3 hours to go the last 5.8 miles.  It was the scariest part of our drive for many reasons - the ice was way worse at this time - by this time so many cars had been traveling over the road... and sitting for hours at a time, that the ice was slick as ever.  The little strips of snow to grab traction were non existent.  Abandoned cars were like obstacles sitting in the roads - as we would glide by, it was like threading a needle to make it through certain sections of the road without hitting a parked or abandoned car.  At one point, police had blocked off part of a hill because everyone trying to navigate down this hill was ending up on the curb or in the ditch - so they were stopping traffic and one by one, we were riding our brakes, sliding down the hill to make it to the next section of the road - all the while, avoiding the cars that hadn't made it and were scattered along the sides of the street and the medians.  The only way I made it was to keep changing lanes - every time the road curved to the right, I would get into the right lane so my van could "bumper" off the curb as we slid to the side making our way along the road - and when the road would curve left, I would get into the left lane so my van could "bumper" along the curb on that side.  Those that didn't follow this snake like pattern ended up going off the road, or side sliding into the cars next to them as the road changed directions.  Once we made it to the last main intersection before the back roads to our neighborhood, we stopped again.  People who had been turning on to the road were starting to get stuck mid-intersection.  So those of us trying to go across had to, again, "thread the needle" trying to let our cars pull forward while the wheels were also sliding sideways to get across the intersection.  Once across the intersection, and onto the back roads, they were again, much more snow packed than our entire trip home.  At this time, about a mile from our house, it was the FIRST time since 11:45 that morning - since leaving my doctor appointment, that I was able to actually use my gas pedal and not immediately slide sideways.  My tires were gripping the snow pretty well so we were able to get up to about 20-30mph on this last leg of the drive.

To get into our neighborhood, there are hills going down.  At both entrances.  One entrance, however, has a very steep, short and curvy hill - although shorter, I chose to avoid this just in case I lost control of the van - there's no room for correction and nowhere to go if we were to slide.  The other entrance also has a curvy downward hill, but, it's very long... so much better if we needed to slide at all... and this entrance was also closer to our house.  As we turned into this entrance, the kids started suddenly asking me "Mom! What is that noise!?" I explained to them that the "noise" was our van sliding down the hill - my wheels weren't turning at all, but sliding down the ice on the hill ... and that's what we did. I rode our brakes the entire way and we were able to make it down to the stop sign without going into anyone's yard or mailbox (thankfully).  At the stop sign, all we had to do was turn left and drive to our house.  Only problem is - that street is a huge long hill - straight up.  Our neighbor said they had made it up a few hours earlier, so I figured we would give it a go.  We got about 3/4 of the way up, when our van started to slide straight backwards.  I knew at that time we weren't going to make it, so I put the van in neutral and backed up down the hill and parked at the curb.

Maura ready to get to the house on her 4 wheeler ride

Meanwhile, our neighbors who live at the top of the hill had made their way down with their ATV.  As I got things secured out of the van, and got Meagan out, the neighbors started running each of the girls to the house in their 4 wheeler.  I gave Reilly the garage opener and sent her on first knowing she could handle getting into the house by herself. Then one by one our neighbor came back and got Kaitlin, Anna, and Maura.  Meanwhile, I took Meagan and walked.  Finally, around 8:45pm, after almost 9 hours of driving, all 6 of us were safe and sound in our house.

Great street for sledding. Not so good to make it all the way up on sheets of ice.

You may have noticed I said "all 6 of us"..... that's because at that time, Brian was still driving.  He had now been in the car almost 8 hours and had gone 9 miles.  Total.  The highway had come to a complete standstill - this had happened all day long on all roads - but this time, it wasn't starting to inch along again.  It just permanently stopped.  We started thinking of a "plan B" because it was apparent at that time he wasn't going to make it home.  We knew some good friends of ours lived about 2 miles from the exit where he was stuck.  The problem was, nothing was moving - so he couldn't get over there quickly if he wanted to.  He was finally able to work his way off the exit and decided to try and get there to spend the night.  Three hours later, he called me and said it wasn't going to happen.  It was total and utter gridlock. In every direction. He hadn't moved.   As gorgeous as the hills of Atlanta and her suburbs are, it makes traveling in these conditions just impossible.  No one could make it up or down hills - the highway was at a standstill, and so Brian turned around again and went into the parking lot of a famous diner that happened to be right there.  His first plan was to go to the diner since they were still open - but they had run out of food.  At that time, the grocery store in that shopping center,  (Publix), had decided to open up and let stranded motorists inside.  He decided to stay there because nothing else was moving anywhere... it was approaching midnight,... and even if he sat in the traffic, without it moving he would run out of gas and have no where or way to get more gas.  So my husband spent Tuesday night half in his car, and half in a grocery store.  When Wednesday morning came and he looked out on to the highway - he saw the SAME cars he had been waiting with the night before were still there.  Nothing had budged.  He decided to get food there and wait it out longer.  The traffic was so gridlocked, and so many cars had been in accidents, or abandoned, or iced to the roads, that the on ramps were shut down. It was announced they would try and reopen them at 10am, but 10 came and went.  At that time he decided to try again to make it to our friends' house, which was still 2 miles away.  He was going to walk, but after a while, the side streets started to inch again so he slowly made his way to their house.  He got there that afternoon and stayed there until today.  He just got home this afternoon to our house ... after almost 24 hours stranded and then another day and night at our friends house - Brian finally got home.

Waiting for Brian to get home the last two days, the kids have been making the best of it - playing in the snow, sledding down the icy streets to steep to navigate, and having hot chocolate and movie days. I have been with them of course, and also getting several things done around the house.  I have also been reading a lot of articles and comments on the conditions this week and was very disappointed in a lot of the "rhetoric" people chose to spew about "those Southerners..."  Despite the craziness, the chaos, the gridlocked traffic, the blizzard like driving, the dangerous icy conditions, the 6 inches (not one inch) of snow and 1-2 inches of ice at our house.... there was a lot of positive happening.  All along the way home, I saw so much goodness - people bringing food and water to those stranded... people picking up total strangers who were walking in the snow to make it home.... people who offered stranded drivers the gas they had walked to get for themselves - only having to turn around and walk..again.. the miles to re-fill the gas jugs they just emptied for a stranger.... countless stories of first responders and emergency personnel helping those in dire need... countless stories of everyday people helping total strangers - whether it be pushing their car up a long hill, riding their ATV's to shuttle the walkers to the nearest shelters, private businesses and restaurants opening their doors offering people not only shelter, but food ... for free... or those who had already made the long treks home when their cars ran out of gas who would venture back out to just stand on the side of the road offering free hot chocolate or snacks to those still stuck in the gridlock.  There was so much humanity that I witnessed, and heard about from other friends who had also been stuck, but honestly, none of that surprised me.  At all.  Being a Northern "transplant" myself, and having lived in several places growing up, I can tell you there is just a very special culture down here.. that ...well..... just "is."  And it is that way everyday. In everyday ordinary situations.  So in extraordinary situations like this week, that "Southern spirit" was even more evident  - makes me very proud to be part of this greater community and all the wonderful people who live here.

Personally, we would like to thank our friends who grabbed my girls for me from school (we are so grateful because close to 3,000 students in the greater Atlanta area were stuck at school overnight and there's no way I would have made it there), our friends and neighbors who met us at the front of our neighborhood shuttling my kids to the house quickly when we couldn't navigate the hills, our neighbor who made the trek to a store yesterday and knowing Brian was still gone, brought us a few things to get us through today, and our friends who took in Brian for the last day and night to give him a warm safe place to stay.  18 miles and 3 days later... what an amazing, scary, and crazy adventure this week has been!

[This is a great article with good perspective on what happened here if you want to read more.]

Scouting a good sledding start spot on our hilly streets (great for sledding - after the curve goes on a big drop down a huge hill)

Reilly helping Maura get a good head start down the hill

What Meagan thinks of sledding 

Kaitlin's snowman... Olaf?

 Meagan is not happy about hats!

Monday, January 20, 2014

Meagan's 3 Step Program

Step 1 - give Meagan food.....she touches it.

Step 2 - watch Meagan stare at said food... possibly lick it, and spit it out...

Step 3 - Watch as she deliberately destroys said food into 1000 crumbled 
pulverized tiny hard to pick up pieces....
Great for OT..... Notsomuch for nutrition.

And this is why we love Meagan's G-tube! LOL

Thursday, January 16, 2014

Wheelchair Fitting... check!

After 9 months with a gtube, Meagan has finally discovered it.  That may seem silly to say - but it's true.  Yes, she has glanced at it before. Yes, she has realized its presence when it has been feeding time - but she has never really cared. Or taken notice. Or tried to do anything with it. Think of the moment when you first see a child realize they have hands. Or fingers. Or feet. Or anything else...  That look of wonder and amazement ... "...these things are actually ON me??"  This happened last night with Meagan and her button.

I was changing her for bed and left her shirt off while I changed her diaper.  As I sat her up next to me, she looked down and patted her stomach.  I said, "belly!"  The next thing I knew, her eyes lit up and she reached over to her button and started to pat it as well. I told her "button!"  She looked at me .. and then looked back at her button and kept patting it.  It must have been so fun to her, she then began to twist it... and then she began to pull at it. And pull at it. I was happy with her new discovery, but at the same time really did not want to learn on the fly how to replace a g-button (we have an appointment in a few weeks with Dr. B to do this for the first time)... nor did we need an unnecessary trip to the ER during flu season, so I gently reached down and moved her hand and said (and signed) "No."  Meagan looked at me and said "No!" ..and then continued to pull at her button. I said and signed "No! Stop it."  Meagan again looked at me and said "No. Stop it." 

Uh oh.......

In other news of the day, Meagan was fitted for her wheelchair today. Yay! She will be getting a Zippie Voyager - it will provide the support she needs, but also be adaptable to our active family lifestyle. 

Photo of what Meagan's stroller style wheelchair will look like... 

 It can go inside or outside and is approved for bus transportation... so when she starts school in the Fall, she can go right onto the bus in this chair.  It has a large tray we can put on for times when we are places where she may need to patiently (or not) wait for her sisters so we can put toys on it, or ipad games, or whatever is needed to help entertain her. 

 It has an easy fold down and the PT said this should be able to fit right into the back space in our minivan. It will have a place to safely and securely hang her feeding bag when she is on a feed, but most importantly, it will provide the positioning support Meagan needs.  I know many see her doing "well" and starting to sit..etc. This is all wonderful, for sure - but - she still needs a lot of support and has lots of times where she really needs more than her stroller can provide.  Meagan sits now by pulling mostly with her upper trunk and front of her belly.  What this means is she is now getting a curve in her lower back - we have noticed this a little bit a few weeks ago but the PT said today it was much more prominent.  Meagan is also starting to not hold her hips underneath her - rather letting them curve forward and let her lower back push outward, exacerbating the curve.  Though Meagan can fit in her stroller still, this chair will be a huge blessing for her lower back and overall development and safety.  The PT said it will have the lower lumbar support she will need to hopefully help correct this curve before it becomes a serious issue because as it is now, she generally sinks into the back of her stroller, which is making her lower back worse.  

Quick video showing some of the features.....

 ...and one of the fold down

It will take about 3 months until Meagan gets her chair - and the insurance process could be a nightmare so pray that it is approved and all goes smoothly! We are excited for April when Meagan will finally be in a device that is both comfortable for her, but functional as well in so many ways her stroller is starting not to be.  We are excited for this new step in Meagan's journey and can't wait to see her in her new wheels! Plus, it will have a pink canopy - what girl wouldn't love that?!


Tuesday, January 7, 2014

Meagan's Epiphany

Despite the frigid temperatures and the older kids being out of school, Meagan was back to her regular schedule.  She started off the week with her usual PT appointment.  We didn't really know what to expect as we had just arrived home from a visit to our in laws in Florida late the night before.  Everyone was tired, especially Meagan, but I figured she would still be excited to get back into her routine.

Meagan's therapist,  (Ms. M),  came ready to try a few new things, but what we didn't realize is that Meagan was going to show us a few new things instead.  After working on sitting for a while,  Meagan showed interest in Ms. M's phone.  Ms. M slid her phone across the floor so we could continue working with Meagan on her sitting and reaching across to grab toys.... then to our surprise, Meagan pushed her bottom forward and moved about an inch.  She seemed just as surprised as us and seemed to realize "Hey, I can move!  I can get that phone!" Then she reached her long arms out and grabbed the phone. Ms. M then said "I wonder if she will go further...."....After a few minutes, Ms. M  purposefully slid her phone across the floor.  After Meagan sized up the situation, this is what followed:

We were shocked...and surprised.. and happy! My girl was figuring out how to get where she wanted to go.  It was an amazing moment, and we could tell Meagan was also extremely happy. It seemed as if, quite literally overnight (as I have said times before) something else had suddenly "clicked" with Meagan.  She had lived another revealing moment.

Ms. M was very excited at Meagan's new motivation to want to move.  She said it would be the perfect time to start facilitating her arms and knees to build strength and balance.  Meagan absolutely HATES being on her knees or having to be on her belly at all.  But we really need to build her arm strength.  Yes, she pushes forward.  But she will not extend them and weight bear on them in a forward position, which is important for crawling and protecting herself when she falls.  We want to improve this so we can continue to help her move more efficiently with more strength.  We have tried working with Meagan on all fours on the floor, with toys, etc... and every time it ends in screaming, arching and complete refusal on her part.  Some parts of PT are hard of course,  but working on her knees was completely non productive screaming and only made it a bad experience for her. 

Meagan fighting knee time

Ms. M helping show Meagan how she can use her knees

Not a happy Meagan - time for a new plan!

 Then Ms. M had an idea today - what about steps.  She suggested we work on the steps with Meagan to help facilitate her arm and knee movements, but change up the scenery, so to speak, and see if it helped.  Well, there's a reason we love Ms. M... her suggestions are usually right.  She knows Meagan SO well, and much to our surprise, Meagan let Ms. M help her on her knees and work with her several times on the steps.  Meagan would actually clap for herself when resting and when Ms. M made her work again, I could physically see Meagan's body shaking with effort.  I started to realize just how hard Meagan had to literally "try" for every movement.  I was amazed by her spirit.

Today was full of many discoveries and excitements. Having  just celebrated the Ephiphany of our Lord the previous day, the lessons of that feast day were on my mind... there was just no better way to describe the chain of events in therapy - Meagan had certainly had her own epiphany 1 these few things  just all of a sudden made sense to Meagan and she not only put forth effort on her own, but seemed to "get" where this was leading.  It was also an epiphany to me in ways - I realize how far Meagan has come and how far she has to go - but I often forget of the things we see as so simple.  Today on the steps when she was really struggling but kept trying and trying, as I watched her little arms shake and her head become heavy,  I realized the true grit of her will.  No measure of strength I have will match to what I witnessed.  It was amazing to watch and I was so proud of my little 20 pound 2 1/2 year old spitfire for pushing through and finally trying something new.  

Just as our Lord revealed himself to the Magi many years ago, little glimpses of the amazement they must have felt have come through in Meagan's triumphs yesterday.  I don't think this happened by accident - God has His hand in everything, and Meagan doing what she did at that particular time was definitely meant to be.  I cannot wait to see what other epiphanies she has along this journey.  So many things seem to be falling into place right now as far as her grasping on to her potential, and giving her all to reach who she is meant to be....  I think the next several months hold a lot of excitement for Megs - something tells me 2014 is going to finally be her year.  For now, rest sweet girl - you had an amazing day ... we love you.