Monday, February 24, 2014

Cast #5

Last Sunday we flew to Chicago to get Allyn's next cast.  Cast Number Five.  Seriously y'all.  We are on number five.  Before this whole casting thing started I just knew we would be doing three or four casts and she would be straight.  Turns out that is not our journey.  We had a few days of intense physical therapy to work on crawling and standing and trunk ROTATION, ROTATION, ROTATION.  The lack of the ability to rotate her trunk along with the added weight of the cast has made hitting gross motor milestones pretty much impossible.  But without the added weight she was doing a great job of standing and even some assisted walking.  It is after all about 15% more weight added to her body. 
 So Sunday we headed up to the western suburbs to look at houses.  Wait.  What?  I probably forgot to mention to you all that we are moving back to the Chicago area.  Ben has a new position and it makes getting her medical care so much easier.  We looked at twenty houses in December and found nothing.  We looked at six more and nothing.  But it makes it hard when you have a pretty good idea where you want to be.  If worse comes to worse, we can always rent something.  I just plan on us being in this house for longer than we have been anywhere so I don't want to end up with a floor plan I don't love or a location I'm not wild about.  After we looked at homes we had to go and watch some cartoons at the hotel. 
 We had our last bath for the next SEVERAL weeks.
 And got all dried off.  She really enjoys bath time now.  But the first bath out of cast is always a little foreign to her. 
 We headed into Shriner's early on Monday morning.  They were forecasted for snow, fortunately nothing was coming down before six that morning.  Yeah, it's six in the morning.  She is all smiles. And she was until we went back to the pre-op holding area.
 We got checked in and had x-rays.  The quality is not the best (I blame Ben's photography skills), but we are still somewhere in the 50-degree range.  We have kind of decided that we are not seeing much any improvement because she really isn't growing.  So if you want to say a little prayer (or a big one) that she grows in this cast and starts to straighten out that would be amazing. 
 While she was in surgery I got a call from Nolan's school that he threw up in class and that I needed to pick him up.  So that marks the FOURTH time he has had the stomach bug this year.  I called Mimi to let her know and she headed in to pick him up.  (He had the stomach virus for FOUR days.  It was AWFUL). After the casting we headed back to our hotel and the snow was coming down.  They ended up getting about seven inches of snow.  Also that night the stomach bug got Ben.  Ugh!
 The next morning we went and got some of the margins trimmed to make the cast more comfortable and headed home.  Bye Chicago.  See you in a couple of months.

Wednesday, February 12, 2014

On the lives we've imagined

Back before Allyn was born, Ben and I talked about how we would probably need a newer and bigger car.  We purchased a Camry in 2007 for me to drive.  And while I was totally fine with driving it into the ground, it would probably be a little on the smaller side for two above average size adults and two super protective bulky carseats carrying our precious babes.  We decided we would probably wait until the summer after Allyn was born to buy a minivan.  (Although Ben really, really, really wanted a Tahoe or Suburban or some other oversize and expensive vehicle....until he realized just how expensive they were).  By that point she would be nearing the point of walking or wanting to walk and a bigger vehicle would make more sense.  Plus, I was totally cool with not forking over a fortune on a new car for as long as possible.

Well, we finally bought a minivan this past January.  Nolan loves it.  And I have always driven cars close to the ground (Mercury Topaz, Honda Civic and the Camry), so the sitting higher up is a nice change for me.  We ended up waiting beyond summer because Allyn doesn't walk.  She doesn't crawl.  She doesn't say anything.  And she may have to be rear-facing in her car seat until she is three years old based on the suggested weight for turning her around. 

You can plan and plan, but sometimes things change.  I wouldn't trade this little dolly for anything or anyone IN. THE. WORLD!  But looking back two years ago while I was pregnant and doing everything to give her the best chances of being healthy, I would have never imagined we would be here today. 
 Seriously y'all.  I ate right; I exercised up until the day before she was born; I removed caffeine from my diet; I took my vitamins and nothing else.  And because we were trying so hard to get pregnant, I didn't consume any alcohol if I thought there was the slightest possibility that if I peed on a stick it would show up positive.  (Which was every month.)  And when she was born, she was perfect.  And we never even knew anything was wrong with her until she was about 5 months old. 
 So now I am trying to navigate the world with a child that ultimately has special needs.  Someone mentioned joining up with an Early Intervention group.  And up until that point I never thought of her as an EI kid.  She's just Allyn.  And I guess that's the thing about this new place we are, and now how I know other parents living a life with a child that does have special needs see it:  they're just kids.  Orthotics and aids and therapy makes them different to everyone on the outside looking in, but not to us.  I really don't even notice Allyn's cast anymore.  It strikes a nerve with me more when she is out.

And she is out of Cast #4.  We'll know how well this one worked when we go back to get Cast #5.  She is still so curvy, but her right rib hump is looking smaller.  I think back to last year when we went to the beach right before we started casting and how bulging it was.  It looks so much better now.
 From the front you can also still see some of the asymmetry in her left ribs. 
 And while it looks like she has grown quite a bit from the last cast, she is still super tiny.  I offer her the highest calorie things I can think of.  Plus she still nurses 8 times a day and from our volume study she is getting about 5 oz each time.  That in addition to meals and snacks, it's enough to make you worry if you really think about it.  So I don't.  I just keep feeding her. 
 She is really enjoying her time out of the cast this go-round.  She can rotate to make transitions and bearing weight on her legs is much better without the added 2+ lbs.  We are in therapy every day while she is out to see if we can pick up some new skills and keep those skills when we get our next cast on.
 And she sleeps like a dream out of cast.  Like.  A.  Dream.
 Oh, and the N-ster would like you to know that he is totally ready for some warmer weather.  We have had snow on the ground her for over a week.  And for the longest time it was overcast and cold.  Reminded me of when we lived in Chicago.  It's enough to make you depressed. 
This weekend in supposed to be beautiful.  Sun shining, snow melting, playing outside beautiful!  And we are going to take full advantage of it!