I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Thursday, January 30, 2014

Snow Fun!

In 11 days my kids have been to school ONE time thanks to "snow".  Being from New York I use the term "snow" very loosely.  We had two "snow storms" totaling about 4".  Cracks me up.
Great time for some family time though.  Typically, we bring the snow INSIDE for Alex.  This time we bundled her up and took her out with us...
I think she was super excited :)

Aaron loves four wheeling, which in turn makes Zach love four wheeling - and Alex LOVES four wheeling, she loves the wind in her face and loves sticking her tongue out the whole time she's on a ride.   There aren't many 'typical' activities we can include her in that we know she totally loves, so even though Aaron had worked all night the night before and only had a few hours of sleep, he loaded his girl up and she and her daddy went for a cruise :)

See....doesn't matter how cold it is - tongue is out!

It was C-O-L-D, but she was happy!!!!

Then it was Zach's turn - unbeknownst to me, Aaron had taught him how to drive the four wheeler on some of their guys trips so he wanted to ride alone.

Have to say I was pretty impressed he knew how to handle that four wheeler.

So impressed I let him take me for a ride!  We had so much fun - but it was C-O-L-D!!

This is the whopping two and a half inches of snow Zach was measuring - at least we used some math skills while school was out!

Snow fun with my boy :)

Even Rudy had fun in the snow.  Poor guy - he's so low to the ground though that when he comes inside the body heat from his fur forms lots of tiny little snow balls on his fur!!  He doesn't seem to really care - he hops through the snow like a little bunny!

When the phone rang last night and said there still wouldn't be any school today there was only one thing to do....make snow ice cream!

We finished up all of this weeks homework tonight, so here's hoping to two kids heading off to school in the morning - Alex is definitely missing riding the bus to school!!! 

Tuesday, January 21, 2014

We Are Happy Again!

My happy girl is BACK! 

It is SO nice to finally have things back to 'normal', but most importantly to see her smile again.  I've missed that smile!
On Saturday she went to her River City Buddy Ball Game and she had a blast 'running' up and down the court - but mostly she enjoyed flirting with her boys!
She and Jonathan show no shame when they reach out to hold each others hands...they should probably go to OT (Occupational Therapy) as motivating factors for each other - their reaches and intent are so purposeful - I LOVE to watch them!!  Aaron will always come up to Jonathan and tell him that's HIS girl and he's keeping an eye on Jonathan and Jonathan just cracks up and laughs at him. 

And then there's Matthew - I LOVE, LOVE, LOVE how Matthew interacts with Alex.  I swear every time I capture a picture of the two of them he warms my heart.

He always makes sure she's happy and comfortable.  The world could definitely use a few more Matthews.

Right after Alex's game we had to head over to Zach's game.  His game Friday night was super exciting and he was psyched for Saturday's game.  It was tough on him for sure - he was poked in the eyes, hit in the nose and slammed on his knee - looked more like a wrestling match!  But he and his team did great - it was a nail biter and they won by 1 point!

Getting some sideline love from Daddy!

Cheering for her brother's team - did I mention how good it is to see her so happy again?!?

One of our family goals for the New Year is to be more active as a FAMILY - including everyone - so we've been heading to the park every weekend for some laps...

...and some Cross Fit taught by Drill Sergeant Hayes :)
...and football, lots of football.

It's been almost 6 weeks since Alex's surgery and we have been really diligent about making sure her legs are stretched.  She is supposed to sleep in her Hound Dog braces, but she refuses - and with her seizure disorder, we just can't force it - she needs her sleep.  So we put them on for a few hours a night and take them off to let her sleep.  They look really comfortable, don't they??

We've started her cage exercises again and last weekend it was so nice outside I got her out on her bike - which she was totally happy and fine with for a little bit before she drew up and I could tell it was hurting her and she started to cry.

I gave her a few minutes of down time and then I wanted her to take some steps in her walker - and she is clearly just not comfortable with that.

She cried and fussed the whole entire time.  I don't think it's a matter of her not being able to do it - I think she is SO nervous about putting any independent pressure on her legs.  She's been in casts and immobilizers for so long that if we try and stand her without them she completely freaks out.  I have a feeling it's going to take a l.o.n.g. time to get her to stand or walk with her walker. 

At therapy she screams through all of her stretches.  I think she has truly found her "I AM SO NOT HAPPY WITH YOU AT THIS POINT AND TIME" voice and she has NOT been afraid to use it!!

She actually fights so hard NOT to do what she should that she tightens up her muscles and makes things worse for herself.  We really have to retrain her and her brain how she stands and how she thinks about standing. 

We just picked up her new orthotics this week - HOPEFULLY they will help!!

We are supposed to have physical therapy tomorrow - but due to some SNOW, yes SNOW, we might not make it.  I hope that's not the case because I want Shannon to see her in her braces and see if we need some modifications and if Alex will actually feel comfortable standing with them since it will be a little bit of extra support - I haven't had the nerve to stand her myself in them yet!

We shall see, stay tuned! :)

Monday, January 6, 2014

Surgical Follow-Up

Today we went to Charlottesville for our follow-up appointment with the surgeon.  I will say that Alex is pretty good about recognizing landmarks while driving - it's what makes long road trips especially challenging because even if it's a 13 hour trip she wont sleep because she's constantly looking out the window to see if she recognizes any thing.  Anyway, on the way up to she got very serious quite a few times and I totally think she thought we were going back to the hospital and was a little nervous.  She was less than impressed when we got there too!

As soon as we checked in they sent us to x-ray to take films of her legs to make sure everything was looking the way that it should.

Here's a picture of her knees and you can see the titanium screws that are on either side of the growth plates in her knees.

Overall, Dr. Romness is pleased with how everything looks. She has six incision sights and with the exception of  one they look great and the x-rays show that everything is exactly where it should be.  I will say, we have been pretty nervous in how we maneuver and handle Alex since the surgery and he definitely was not as delicate with her as we have been - stunk for her because it made her cry really loud - good for me to realize I wasn't going to cause her any irreversible damage if I moved her leg the wrong way!  He said he's not sure really why Alex is still crying a lot as if in pain (and she definitely put on a good show for him) - he thinks that maybe getting her up, moving, and back into her old routines will help a bit. So speaking of routine, Alex has not been on the bus or to school in almost a month - so all day today we kept telling her she was going back to school tomorrow and the bus was coming for her in the morning - whoo hoooo!  Only now due to the temperatures and them not being this low in the last seventeen years there is a two hour delay tomorrow - and honestly, I'm not going to be surprised if it's cancelled all together.  Poor Alex, just can't catch a break!  The GREAT news is that we no longer need to wear her braces during the day!  She has to wear a special set of braces of night while she sleeps (and I'm too lazy to go take a picture of them right now) and she can go back to her regular wheel chair!  The only major  concern everyone has is her weight loss.  She's lost 7.5 pounds and it's really showing.  Yesterday I went to change her pants and when I went to pull her pants off her diaper came right off with them - she has no muscle left.  Her hips are bony, her butt is bony, her legs are bony....if you go about 3 inches up from her ankle to her calf area you can put your middle finger and thumb together completely around her leg and still have a little room left.  She still isn't eating more than 4 or 5 bites of blenderized food by mouth so I've increased her tube feedings to a can and a half.  It's definitely time for a nutrition appointment to see what we can do to get her to gain weight again.  Physical therapy is up to two times a week so that should help rebuild her muscle and in February we will start another round of intensive therapy (physical therapy 5 days a week, 3 hours a day for 3 weeks).  I suspect by the Spring we should be in a really good place. 

We are quite a site where ever we go - I usually refer to us as a train wreck...well, sometimes I use a different phrase but I'll refrain - let's just say today it was no different.  In the tiny exam room it was me, Alex, my mom and her nurse Tammy - and in the room with all of us is all of our stuff - coats, purses, wheel chair, feeding pump, back pack, two sets of braces, paperwork for the nursing company, etc. - it looked like we completely took over the room....and just as Dr. Romness' nurse was leaving the room she looked back at us and said "It takes a village, doesn't it?"  Amen sister - that is exactly how we roll :)

So the great news is she's getting there!  It can take a whole year for the plates in her leg to help get her legs completely straight, but unless she still seems to be in pain next week, we don't go back for another three months for another set of x-rays.  Here she is with her fine surgeon- who for the record was trying to push her legs together so they looked straight for the picture.  We absolutely love him! :)  

Thursday, January 2, 2014

Happy New Year!

Look who is starting to feel better!

It's been SO good to see her smile again!!!

She still has her moments, but for the most part she is doing much better and is not as miserable.  She still has major issues when we lay her down to change her but we think that is because her sacrum bone has shifted a little and it's very prominent.  Alex still refuses to eat anything solid by mouth so it's been three weeks of only tube feedings and naturally she's lost a bit of weight - almost seven pounds to be exact.  She's already thin as it is so it's made a big difference with how bony she is.  I think we are on the up swing so hopefully eating will fall back into place soon.
New Year's Eve we had my brother and our good friends The Morris' over to celebrate.  We had fun being silly with a light up lamp shade....

And some funny photo cards...

After dinner we went outside and Scott and Leslie had brought over these big lanterns that you light up, almost like a hot air balloon and send off...


It was super impressive to see how far they went and the kids really enjoyed it.

Alex wasn't up at midnight but we all toasted in the New Year and enjoyed each other's company!

Yesterday was a beautiful day and we decided to pack everyone and the dog up and head to the park - Aaron wanted to take his truck so he put Alex in the front seat and belted her in.  It's one of the first times she has not been in the car in her wheel chair or in a car seat and she LOVED it!  She kept looking out the window and looking all around with this incredible look of wonderment on her face and then she would get the biggest smile on her face.  It really is the simple things that we so take for granted.  She was in heaven.

She was even happier when we got to the park and she and Daddy went for a jog!  That girl loves her some wind in her face!

I took her and Rudy for a few laps while the boys played football....

We had some really nice family time - it was a great way to start the new year.

I hope everyone has a blessed, happy and HEALTHY New Year!