Stand tall, stand proud

Lucy hasn't been in her stander much over the winter, because it hadn't been professionally adjusted since we got it.  I messed with the headrest and feet bracing enough so that it was usable, but it wasn't comfortable for her, and I didn't trust myself to do the adjustments in the proper way (re: there are about a billion knobs on the darn thing.)  So this past week we had the PT who sold it to us over to do the adjustments for Lucy.

She was very excited to get back in the saddle!

And mom was excited to mess with her hair :)

Being in the stander is good for Lucy's bone density and motility.  Hopefully the appeal of this will last for awhile - there are some days when stander time is not on the top of her list of things to do :)

Isn't there a manual for this?

Parenting is H. A. R. D.  Now, the only parenting I know is parenting a nonverbal, immobile child.  I don't know if that's harder or easier than parenting a typical child, but I know it's definitely challenging.  Discipline, motivation, understanding... all difficult.  Frustrating.  But when it works, it's rewarding beyond comprehension or explanation.

I struggle constantly with whether I'm using effective techniques with Lucy.  Am I advancing her development enough?  Pushing her too much and turning her off to what I'm trying to get her to embrace?  Am I getting through that humming, eyes squeezing shut shield that she puts up when I talk to her for more than 10 seconds straight?  Most times, that questions is answered with a resounding "MMMMMMMM."

I want to communicate with Lucy so badly.  Not in the sporadic, "sometimes I'll cooperate with you" way that we have going now.  I want her to be involved in what's going on around her, for her to be invested in her everyday.  For her to assert her needs, and wants.  I want her to want to communicate.  Why shouldn't she?  All it can do is improve her daily activities!

And then I have to remind myself - after giving myself a few black eyes and a kick in the shin over not being able to get her to stop humming over the top of me - that she is a kid who has about as little control over her life as she can have.  What can she control?  I move her.  I feed her.  I talk to her, entice her with endless questions, and do my best to interpret what she's saying, but I can never be absolutely sure what her tirades are about.  All she can control, really control, is whether or not she's listening.  And possibly whether she poops directly on my hand.  (Thankfully, she's a sweet girl who doesn't wish to exact revenge with her butt.)

Unfortunately, I haven't been able to motivate her, with any consistency, to listen consistently and respond appropriately.  It makes me feel so discouraged, because I'd like for Lucy's days to be filled with as much as she'd really like to do as possible.  Even if we only do "yes" and "no" responses, and we have to play 50 questions - I'd totally settle for that!  Most times, though, she won't pause her humming long enough for me to get out questions 1 through 3.  A lot of the time, I'm pretty sure she's fully telling me what she wants, what she's thinking, that the pajama pants I'm wearing are hideous with my top... unfortunately, it's indecipherable to me.  I envy all those moms who are completely tuned into their kids, and know what every blink and hum mean, based on pitch; I'm not one of those.  I need something more.  Lucy deserves something more.

Her eyegaze trial is set for the beginning of next month.  I'm praying that the more rewarding cause/effect of this machine will be the motivation Lucy needs to really start to communicate.  Otherwise, Mama is fresh out of ideas.  Please say a prayer for 1) the motivation to be there for her, and 2) insurance to cover this ridiculously pricey piece of equipment.  One kind of relies on the other; Lucy needs to show, within the 3 week trial, that she can use the Tobii eyegaze purposefully to communicate.  If she can't, the odds are slim to none that insurance will approve.  Even with that proof, convincing an insurance company that a 3-year-old communicating her basic needs with her parents is not a luxury, but a necessity, is hard to do.  Crazy, right?  Such is the game we play as parents of special needs kids.

So, in closing, I feel inadequate as a parent, and my kid is running roughshod over me.  Something tells me I'm not alone.

Fire Next Door!

On Friday morning, the house next to us started on fire.  As we were getting up and going for the day, I happened to glance out the window at the end of our hall upstairs, and saw three holes in the roof of the house next door with smoke coming out of them.

It took me a few seconds to process that meant that the house was on fire.  It had been recently purchased, after failing to sell at a city auction, and was in dire need of major repairs.  The man who bought it had been working on gutting it.  He was not living there yet - it would not be livable until spring, at least.

I ran to the phone and tried to call 911.  The phone didn't even register that a number had been dialed.  Tried again.  Dial tone.  Lucy was still on her bipap, watching a Sesame Street DVD.  I called my mom, pretty hysterical by this time, and asked her to call 911 for me, that the house next door was on fire.  I ran back to look at the house; still had smoke pouring out, but I could see no open flame.  I tried calling my husband Noah twice - no answer.  This was the day that, instead of being at work 10 minutes away, he was at a meeting at his supervisor's house, 40 minutes away.

I had to decide what to do.  I unhooked Lucy's feeding tube and bipap, begging God out loud to guide my actions and help me make the right choices, because I still wasn't hearing any sirens.  Now, our houses aren't reach-out-and-touch close, but by this time there was more smoke, and I wasn't thinking clearly.  To me, it was wholly possible that our house could fill with smoke, if not start on fire, and Lucy could not handle that.  I threw some pants on her and cheerfully told her we were going downstairs.  When I went past the window, I saw flames, and heard sirens.

I got Lucy laid out on her ottoman, and ran to the door, yelling out to the firemen who were showing up that I had a severely disabled daughter.  One man heard it, and I saw him point at me and relay the message, so I went back inside.  Couldn't decide if I should take her outside, where it was smoky, or wait in here.  Fire was growing.  Ran upstairs to unhook her bipap and grab it, in case the smoke smell got worse and she started to labor breathing.  The windows on the side of their house were broken, and flames were pouring skyward.  Firemen were just starting to get the hose through the front door, and the main of the fire was at the back of the house.  Ran down with the bipap.

Two women showed up then; a woman I used to work with and her mom.  They had seen the commotion and came over to see if we were okay.  I handed off Bert (who had tried to run away from me when I opened his kennel!) and gathered Lucy's machines together.  She relayed to me that the firemen wanted me to stay in my house, which was smelling worse and worse.  I ran up to grab her pulse ox; the upstairs was markedly warmer, and the fire was still blazing.  Nope, not staying here.

She ran out to tell the firemen that we didn't feel comfortable staying in the house.  I shoved Lucy's hi-low base out the door, threw out her bipap and pulse ox onto the porch, and handed her suction to one of the women.  I yelled for someone to get her hi-low down our stairs (a ramp is on the agenda for spring!) and carried her out.  A fireman offered to carry her, but I sent him back to grab her machines.  I got her on her hi-low and started to push her down the unshoveled sidewalk, away from the smoke and flames.  A fireman grabbed the front of her hi-low and helped to guide her over the snow, lifting her at an angle in the process.  She started to cough, whether from the smoke or the angle, not sure.  I looked around and realized the person holding all of her machines was standing in the middle of the road, and yelled for him to bring them over.  He started over slowly, so I had to yell that she was choking.  Got her machines, untangled the suction tubing from the bipap strap and pulse ox cord, and cleared her out.

We got her up over the snowbank and wheeled her around the corner to my friend's house, where we waited for Noah to show up and calmed down a little.  I really think Lucy was oblivious to all that was going on - the sun is bright to her, and unless she has sunglasses on, her eyes are closed.  She didn't seem scared or worried, and was looking around my friend's house like we were on a field trip :)  Her oxygen saturation was a little low, and my lungs hurt a bit and I was coughing, but over the course of the day her numbers came up.

Obviously, Lucy's situation being what it is, we've discussed plans for situations like this.  It's a little different when something actually happens, though.  We are very blessed that the fire was eventually contained, that it didn't start at night (the man had been there working that morning - he was gone to lunch when it started), and that it wasn't our own house.

This is the view from the window I was looking out.  It doesn't look like much.  Those windows were spewing orange flames, and smoke was billowing out of the hole in the roof, along with all the other broken windows.  Most likely, in my panic, alone with my baby, it looked much worse than it actually was.  Very thankful that that was the case.

Winter Goings-On

Hello all!  Sorry that there haven't been many posts lately, but since the arrival of Bert, we have been kept very busy :)  My husband tried to tell me, but I just wouldn't listen - a puppy is a lot of work!  Lucy isn't too keen on sharing the attention, but Bert is very lovable - and protective!  << See how there. - and I know she won't be able to hold out long ;)

Winter means lockdown - no visitors, no going anywhere... in short, major cabin fever!  Fortunately, it wasn't too frigid today, so we busted out (to the backyard.)  Lucy is a daredevil - loves spinning fast, rolling fast, sliding fast.  Sledding is no exception!  We bundled her up and saddled up Daddy, to take her on a tour of the backyard after this newest snowfall.

She loved it!  She grinned the entire time she was being pulled.  There was one spot where the lawn dipped, and so the sled tilted a bit - and my heart stopped.  Not Lucy's though!  She just grinned and hooted for more :)

And yes, she is wearing mittens on her feet, because her feet don't fit properly in boots - and frankly, we don't take her outside often in the winter, and this was very impromptu.

Lucy has also been enjoying classroom circle time, thanks to the wonders of the internet.  She gets to Skype with a classroom of kiddos her age!  Funnily enough, Lucy doesn't know when to be quiet, and has had to be reprimanded by her teacher for vocalizing out of turn.  I had been putting off disciplining this behavior, because I don't want to discourage her "talking," but it looks like we're going to need to set some boundaries!  Lucy loves her friends, and there are a few that are quite charmed by her ;)

School in pajamas!

Also, I've closed down the Couture to Cure SMA hair clip shop on Etsy for the time being.  I found that there just isn't enough time for me to keep up with getting orders shipped in a timely manner, and to keep new merchandise in the shop.  It's actually been a huge relief to take a break, and while I'm sad that I'm not able to raise money for research right now, I'm able to spend more down time with my family, which is a big blessing.

Thank you all for keeping tabs on Lucy!  I will try to make sure I keep the updates more frequent - we definitely appreciate your support and prayers, and we want to show our gratitude!  (In the form of Lucy and Bert pictures, of course ;))

Resolution to Remember

Been feeling kind of out of whack for a while now, and Lucy's not been terribly into anything I've been trying to do with her.  Bert's been a little puppy demon, sucking up all free time and teething on our hands.  Nothing that's a real problem, just little things to make one feel unsettled. 

Last night I cracked open my Bible for the first time in a few months.  I do well reading regularly for awhile, then, slowly, other things start to creep in and take up that time, and all of the sudden I haven't read it in weeks.  Anyway, opened it and read some last night, and then again this morning.

And you know what?  Lucy and I had the BEST day today!  We woke up early, and she got her nap done early (and she fell asleep right away and woke up cheerful, which is definitely a rarity!)  I got out some crafty stuff to work on decorations for New Year's Eve, and she was all smiles and laughter, and totally into participating.  Bert was a model citizen, with no accidents in the house, and he stayed curled up underneath us or next to us for most of the day.  Today was what I imagine every day will be like when I go to be the night before.  Before I wake up late, before Lucy wakes up late, before Bert pees on the floor, before Lucy hums with her eyes closed through every activity I present to her.

This is no coincidence.  This is my life, if I choose to remember to put God first.  I'm not saying that will make every second sunshine and roses - that's just not what life is.  But I fully believe - I know - that every time I remember to give some time to God, my life is more positive.  Things fall into place.  Attitudes are better.  It may be that Lucy is cheerful.  It may be that Bert is behaving.  And it may be that my attitude is better when I look out at the chaos that is my life, because my heart is in the right place.

I'm hoping that in the new year, I will remember this more often than not.  After all God has done and continues to do for our family, He deserves to have my love, respect, and devotion.

I Love You So...

Lucy got a new book for Christmas from some very dear friends.  She can be a bit picky when it comes to new stories, but I read this to her a few afternoons ago, and she was fairly receptive.

The book talks about all the different situations that a child could be in, and the parents tells the child how they love them, no matter what the situation.  It came to one where the child says:

       "Even when I'm SICK... and I can't get out of bed?  Do you love me better HEALTHY than with 
        a fever in my head?"

I stopped at that point and told Lucy how much I love her, just exactly the way she is.  She started to fuss, which she sometimes does if I pause during a story when she wants me to keep reading.  I wasn't sure if that was the reason this time, so I asked her if she wanted me to keep reading.  She kept crying, so I asked her if it made her mad that she couldn't move.  She kept crying.  I asked her if it made her mad that she couldn't talk - and she stopped crying and looked at me.

It is beyond heartbreaking for me to not be able to understand Lucy.  We haven't found a particularly effective way to communicate.  But as hard as it is for me, I can't even imagine how frustrating it is for Lucy to not be understood.  I have tried to explain to her numerous times that we can work out a yes/no system - that if she would follow directions I give her, I would know she's understanding me and we could understand her better - but she is so stubborn.  I really feel like she just wants to be able to talk, talk like we do, not differently.  No matter what I do, no matter what alternative communication we work out, she can't yet talk like we do, and it breaks my heart to see her so frustrated.

This blog post isn't any earth-shattering revelation or funny anecdote.  It's just a mom, talking about how SMA affects her child.  I know that any parent hates to see their child struggle, especially when there is nothing they can do to rectify the situation.  SMA just kicks that helplessness up a notch. 

As you celebrate your Christmas with your family (and we are so blessed to do so with ours, at home!), please take a moment to add to your wish list a cure for SMA, so that some year, Lucy can tell me, in her own words, what she wants under the tree.

       "I CAN'T IMAGINE life before YOU came along... me there singing senseless, no meaning to             my song.  Call it MEANT TO BE, or simply blessed fate, you fill my heart WITH LOVE... and 
       for THAT I celebrate."

The Puppy has Landed!

This weekend we went to get Lucy's puppy!  He arrived early in the morning, so I woke Lucy up and took her downstairs to greet him.  She was less than thrilled (Lucy likes to wake up on her own watch.)  After some puppy snuggles, though, she warmed up to him :)

He's nice and all, but could we shoot for an hour later, next time?

We talked to Lucy about names, and she was particularly fond of Baxter at first.  Over the month, she decided she liked that one less, so we threw out some other names, and she decided she liked Bert.  As in Bert and Ernie, from her all-time favorite show, Sesame Street.  When Noah went to pick Bert up, they asked him if he had a name picked out, and he told them Lucy's choice.  They said it was perfect; the parents of our Bert were named Bert and Ernie!  So he's actually Bert Jr.  When I heard that, I knew that we had picked the best puppy for Lucy :)

He was very nervous at first, and squeaked a lot as he tried to decide if we were going to toss him around or put him in an ugly sweater.

We did the sweater.

 

Bert was calm all day, slept and snuggled Lucy a lot.  He preferred to have his face as close to Lucy's as possible.  He does not like to be alone, at all, or even far away from us.  Toward the evening Bert decided that doggy was not going to be our main dinner course, so he became a little more playful.  He likes nibbling and licking Lucy's fingers, which she also enjoys, as long as Bert knows when to quit.  He already seems protective of her - when Noah does her chest PT, Bert gets to Lucy as fast as he can and puts his head on Noah's hand, to stop him from "hitting" Lucy.  He got used to her suctioning very fast too, and can now sleep through it.

 

Lucy likes being greeted by Bert in the morning.  We are crate training him, and he's not too thrilled about that.  We are getting a little less sleep than we normally do - Noah least of all.  We decided that Noah would do nighttime puppy duty, and I would stay with Lucy while we were in the transition phase.  Lucy heard Bert barking and crying a few times, and was not at all appreciative of her slumber being disturbed (gee, Lucy, you don't like being woken up in the middle of the night?), but I managed to calm her down fast.  Potty training is also in beginning stages.  Bert likes to make use of his outdoor time by playing - not pooping.  I am very grateful we have wood floors!  

 

It's a little hard having our family dynamic changed - before, we focused any and all attention on Lucy.  Now, one of us has to be constantly watching Bert as well, because he's fond of chewing and defecating.  Not unlike an infant, only he can wander off into a corner and do it secretly.  I know, though, that we chose the right dog for Lucy, and Bert will fit right in :)

 

   Mah puppeh!