Tuesday, February 10, 2015

The Things We Are Too Afraid to Discuss

And trying to celebrate the small victories.

Allyn has been making great strides since December.  She tells us she wants to walk.  Her language has gotten so much better.  She is eating.  These are things I have been terrified to acknowledge to anyone, including myself.  And how crazy is that?  These are things I should be celebrating.  They are HUGE. 

 And yet, in my warped mind I feel like trivializing them will make all of this easier.  If we have another setback, maybe it won't sting so much if no one else knows truly how far we have come. 
 Of if our progress slows or comes to a halt, I'll be able to cope with that.  Being a mommy to this wonderful child has exposed me to so much.  And I'm much more capable than I would have ever given myself credit for.  Before Ben and I had children, we decided that I would stay home with them while he worked.  A stay-at-home mom.  It seemed like an easy job.  And with both of my children, it's been anything but...and for different reasons. 
 But I've learned through this process, this is the thing that I am truly amazing at.  I am a really good mom.  I love my babies fiercely.  I've had sweet comments on this blog from complete strangers.  And how can you really tell anything about a person from the little snippets of a "perfect" life they let you catch a glimpse of?  But then I hear it from people who know me too.  And I have a great husband who supports me through all of the heartache and my drama.
 Having a child with "special needs" has really brought all of this to the front of my mind lately.  But really, her needs are not all that special.  All she really needs is love, security and all of those other warm and fuzzy things.  We'll get the rest figured out.  Or we'll adapt.  That's the thing about her and her brother.  I would move mountains for them. 
 Watching Allyn develop in the past two months has been eye opening.  And in some ways, it's like I'm seeing the world through new eyes for the first time too.  There is such joy in the little things. 
 Excitement over steps, the way Nolan talks to her and encourages her, feeding herself an entire meal and knowing that we can finally communicate with some efficiency using words.  I finally feel like I should be shouting from top of the world how great God has been to us.  How I can feel this hope engulfing my life right now.  And it so scary at the same time because I fear that it could be stripped away at any moment.  But I feel like it's okay to say that I am scared.  Because being a parent, no matter your situation, is scary.
 So for now, I'm going to celebrate these victories.  No matter how small they may be.  We have truly come so far.  And thanks for sticking around for the rather exciting ride. 

Saturday, February 7, 2015

Snow Days

Last Sunday we got slammed with winter weather.  The forecast started off mid-week showing accumulations of up to five inches.  By the time we checked the weather.gov forecast discussion on Saturday night, the totals were closer to twelve inches.  So we finally broke down and purchased a snow blower.  As we were putting it together one of our lovely neighbors came by to tell Ben he would snowblow the driveway because there was no way Ben could shovel it.  I think he was terrified that he would have to do CPR on him in the driveway. 

This was Ben's drive on the way to buy a snowblower.  I think we it had been snowing for about 6 hours at this point.  It was a very wet and heavy snow. 
The view from the kitchen window. 
 Later, Nolan got up to play in the backyard.  He and Ben had the best time playing in the snow and clearing off the driveway, sidewalks and deck.  I really enjoyed staying inside of a warm house. 
 This was on the afternoon of the big snow event on our back deck.  The deck doesn't get any drifts so I think this is a pretty accurate total for accumulation at that point in the day. 
 And it lasted all day.  We went to a Super Bowl Party at a neighbor's house that night.  There was a big turnout of a lot of us that lived close by.  It was great to go somewhere and not have to worry about not getting home.  We debated walking but later in the day, it turned into blizzard conditions and we were not sure how clear the sidewalks were on the way so we drove.  And parked in their driveway. 
Sweet Nolan got up the next morning since school was cancelled to check the totals.  He was VERY excited about no school.  He had missed the Friday before because Allyn had a stomach virus and he said he wasn't feeling well too (turns out he was just fine).  And then he missed Monday because of the snow.  Ben was lucky enough that he was able to work from home.  We spent most of the day inside playing the basement and staying warm. 
Later in the afternoon after Ben had finished all of his work, he took Nolan down to our secret park.  It was just beautiful. 
 And I'm pretty sure they had an amazing time.
Sweet boy snuggled up in his bed.
And then on Tuesday, it snowed again. Unfortunately this time Allyn and I were stuck near Chicago close to rush hour at a doctor's appointment that was running really late (like 3 hours late).  And then a commute home that should have taken 45 minutes took 2 hours.  And she cried almost the entire way home.  Me + Driving In Snow + Rush Hour + Crying Little Girl = MAJOR STRESS.
Is it too early to say I'm ready for Spring?  Or Summer?

Thursday, February 5, 2015

Cast Ten

 On January 19, at 5:30 a.m. we all headed to Oak Park to have Cast #10 applied.  Every time I say or think "ten", I just can't believe we are this far in.  Ten casts.  Twenty months of serial casting.  Allyn has spent more days of her life in a cast than out.  To say I was super hopeful and optimistic that there had been some correction in this cast would be a gross understatement.  I needed to hear that we are seeing correction. 

So the night before, a special little dolly got her last bath until probably April.  I try to soak up these easy moments in the bath that we both love so much.  The smell and feel of her skin after.  The joy that she has as she splashes in the water. 
 AND THIS FACE!  When she comes out all nice and clean. 
  She has reached the age that she knows exactly what is going down when we head into the hospital. It's tough on me and I know she is scared.  I used to think this would be one of those things she would have no memory of.  But now that she is getting older, I'm not so sure about that anymore.  But I want her to know that every time we took her in, it was to give her a better chance at the best quality of life.  As hard as the days are for everyone.  So there were a lot of tears that day from check-in all of the way through pre-op. 
 We headed to radiology this time and got a lot of x-rays.  Our geneticist suggested we do a complete skeletal survey to see if she had any type of dysplasia or other orthotic or bone growth issues.  We may be looking into some more alternative (because what is more alternative than serial casting for a spine?) therapies to help her growth but we kind of need to know if there is something else going on and her genetic microarray came back normal and her endocrinology results came back normal.  We also did a muscle biopsy while she was under general anesthesia that day just to more understand our baseline and any possible underlying conditions that may explain her overall low tone, short stature and inability to gain weight. 

The x-ray still shows her around a 40-degree Cobb.  This is where we have been since April of last year.  It was tough to hear that.  I didn't cry but I wanted to.  All of this work, and we are not seeing positive numbers.  I just pray that there is some good that comes of this season of our lives:  less rotation and better symmetry, increased lung volumes, something...anything.  Because as it stands today we are looking at a long road of surgeries for this little sweet potato.  The thing we were trying so hard to avoid by serial EDF casting. 

And now we have decisions to make.  Do we keep casting?  She had issues with coming out of anesthesia again.  This is the third time.  And she has been under general anesthesia eleven times in her short little time here.  And as a parent, you get nervous every time.  So now we have to talk with her surgeon to determine next steps.  I feel okay with going to the two year mark for casting and that will give us two years of growth of her thoracic spine.  But if the numbers are not improving we may have to look at switching to a brace and hoping that can hold her until she is big enough for surgery. 
Poor doll was just pitiful when I got to pick her up in post-op.  She nursed and snuggled and fell asleep.  And then to keep it interesting, she peed out of the side of her diaper all over my pants. 
We made it home just in time for both of us to take a nap while the boys played.