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.

Monday, September 21, 2015

The Dreaded Brace!

We knew going into this that life in the brace was not going to be a walk in the park.  I mean let's face it - how comfortable can this plastic "jacket" be?!? 

I have jokingly started calling her Barbie - between this brace and her orthotics she is pretty much just as plastic :)

However, when I look at just how crooked she is in when she is sitting, it's a no brainer to want to tackle this head on and avoid surgery like the plague. 

Once she got the brace she didn't really seem to mind it too much.  Have I mentioned before just what a trooper this sweet girl is?!?

We had to take the brace back in a few times to have adjustments made for a better fit.  This picture doesn't do it justice, but she was getting a lot of red pressure points that weren't resolving quickly. 

The same day we got the brace we had to go back to orthopedics for x-rays to make sure the correction in the brace was accurate.  When the doctor came in to see us he said, "it's not a good brace" - my immediate response was Ugh!  but then he followed up with, "it's a GREAT brace"!  Whew.  We talked a little more and he brought the surgery up again and then he called me out into the hallway and showed me before and after x-rays of people who have had to have the titanium rods put in.  I don't care how straight they look - I don't want any part of it.  His response was, "We don't want to have to correct, but we can if we have to".   Obviously I'm not going to let it get to the point that her heart and lungs are affected, but I'm not going down without a fight either!

The picture on the left is without the brace, the one on the right is with the brace. 

She wears the brace during the day and although it makes it harder on all of us that have to lift and maneuver her around, it doesn't stop her from using her equipment - or smiling. 

Riding her new fancy bike! :)
...and rocking out her stepping in her walker.

Alex keeps having major growth spurts - and her growth is part culprit to the curve being so significant.  Case in point - the last time she used her walker at home was in July, right before we moved...2 months later you can see from the headrest how much she's grown...

That's the good. 
The bad is that she can't sleep in it.  She is technically supposed to wear the brace for 23 hours a day.  With her seizure disorder, especially since the majority of her seizures involve sleep, or lack there of, it doesn't work for her at night.  Alex is quite particular in how she sleeps, and the brace is not conducive for her getting into "her" position, and if she does fall asleep in it, it's not for very long.
Back in the day Alex wore something called a DMO (Dynamic Movement Orthosis) and it really helped her with her back and her positioning.  When her back starting getting really bad we re-measured for a new DMO, which is manufactured in Europe.  We went three different rounds and each time we got the DMO back Alex had grown and it didn't fit properly. The DMO has panels inside to help combat the scoliosis.  The DMO is most effective when the curve has not surpassed a 30 degree curve.  Alex is already at 46 degrees.  Since she is not wearing the brace at night I figured we would try her sleeping in the DMO - if she's in the brace all day and is HOPEFULLY getting some kind of correction during the day, the DMO would help to maintain that.  I'm probably just wishful thinking, but something has got to be better than nothing, right?!?  And I will say, I really think Alex likes sleeping in it, my guess is it's something sensory and she feels more secure, but she has been sleeping great, even better than she normally does, with it on.  (Please lord do not have let me jinxed myself!)

Only time will tell - we have until the first week of November before we go back for her x-rays to see if this has made any improvement.  Prayers are still being welcomed for a miracle correction!

Tuesday, September 8, 2015

We Moved!

I can't believe summer is over!  I had no clue when the kids had their last day of school that a few days later we would find a house and start a crazy process that would last almost all summer long. Our closing was delayed several times and so now, after 5 1/2 weeks of no cable or internet, we are finally moved in and reconnected to the land of the living.

We had been passively looking at houses for over a year.  I've said it numerous time, but as Alex gets bigger, it was becoming increasingly harder on me to get her up and down the stairs to her room every day.  As she gets bigger, so does her equipment and our house just wasn't working for her anymore.  We had a LOT of criteria for the new house and all of the houses we had looked at lacked in one way or another so we honestly didn't know what we were going to do.  But patience paid off and on August 13th, we said good-bye to the house we've been in for the last 12 years. I love our neighborhood and the wonderful friends we have made there, and even though we only moved about a mile away, it was still very emotional.

As silly as it sounds, I walked from room to room conjuring up a ton of memories and said good-bye. I think Zach's room was the hardest for me.  I brought him home to that house.  It's seen a lot of transformation and it's all he's known.  One of the door jams in his room is where we marked his growth.  Not something we could take with us, so I got emotional.  I'm a sap.


Good-bye camouflage room!

Alex's room was just as hard.  When we moved into that house she was 11 months old.  We were going through genetics and seeing doctor after doctor (wait, I guess somethings haven't changed since we're still doing all that!) - but back then the doctors kept telling us she was going to catch up, she was going to be "ok", they could find no reason that she wouldn't be. 4 months after we moved in we spent a month in the hospital in the PICU and we knew our road was going to be different with her.  I guess saying good-bye to her room made me think of all we have been through there.  There were lots of tears, hers and mine, shed in that room, but it's all she's known too.

Saying good-bye to our room made me question if we were doing the right thing.  It also brought up a million memories of all of the family decisions and discussions that were made in there.  

And once I turned to take one last look before we walked out the garage door, I lost it.  Lots of tears.

Alex is very landmark oriented.  She gets crazy excited when she gets close to school, or my parent's old house, or she see's the exit for our house on the highway.  I was really nervous about how she was going to adjust.  We talked a lot about us moving in front of her and to her.  In fact, when we first started talking about it she was getting very agitated.  We played our usual round of 100 yes/no questions until we asked her if she thought she wasn't coming with us and she raised her eyebrows - which means yes.  We explained over and over that she and ALL of her stuff was coming with us and and then, just like that, she was happy.

On moving day she spent the entire day with her nurse, Tammy, and by the time she came home that evening we had it all ready so it would look familiar. When she got home Aaron got her out of her chair and helped her walk into the house.

She looked all around and really took it all in.  

She seems very happy here and has really settled in nicely.  Zach has several friends who live in the neighborhood so he settled in just fine.  One of our requirements to move was that we didn't disrupt his life too much and that he stayed in the same in the same school district and close to his friends. 

I love how spacious Alex's room is.  I love she has a bathroom attached to her room.  We met with a great contractor and will be starting a remodeling project on it in a week or so because the shower cannot accommodate her chair, but that's all we have to do to make it perfect for her.  I love that the doors here are wider and all of her equipment can move from room to room with ease.  I love that the downstairs is all open and so much easier for us to move her around.  And as crazy as it sounds, I really feel like we are closer as a family.  We spend a lot more time together now that she has so much more access to move around with us.

I have some catching up to do now that we finally have internet, but for now, we are Home Sweet Home!!