Friday, June 3, 2011

Reclaiming our independence - SMA-style

Lucy was born in the summer, so early on I would take her on walks around the neighborhood while Noah was working - it was a nice change of scenery, and I figured it would help me lose my baby weight (we can all see how that turned out.)  Mostly, she slept, and I was never worried.  Why should I have?

Two months later Lucy was diagnosed with SMA, and we found out that the convenient little travel system we had for her could kill her.  It was October anyway, and walking season was all but over in Wisconsin.

Next spring, some relatives were extraordinarily generous and donated the money for Lucy to have an EASyS stroller, which had the option of laying flat.  Since Lucy can choke very easily in an upright position, this stroller allowed her to see the world again - at this age, she was far too difficult to carry for long periods of time.  Floppy baby + possible choking episodes = need for flat stroller.  We very much enjoyed our walks as a family, but since Noah has to have a job, (I know, right?  What's up with THAT?) we had to schedule them around his available time and factor in the weather as well.  Not quite the freewheeling lifestyle that we enjoyed pre-SMA... well, as freewheeling as one's life can be with a nursing newborn ;)

Lucy has been relatively stable.  Yes, she chokes occasionally, but we know what causes her to choke - upright positioning, if not carefully monitored and suctioned as needed, and position change without suction - so it's easily avoidable.  We've had *maybe* an issue or two with a plug, and I say maybe because both times it was so small I'm not even sure if it qualified.  I've had to use the Cough Assist twice on her in emergency situations, and both were when she had been sitting upright.  She is good at moving her own secretions, letting me know if she needs suctioning, and can maintain oxygen saturations on her own.  We don't yet have a tray for under her stroller that will support her Cough Assist, as well as the battery and inverter needed to run it, so we go on walks with her suction and pulse oximeter, which is no less than what she routinely uses throughout the day at home.  We also always carry an Ambu-bag for emergencies.  

After watching a few nice afternoons go by in the early spring (after 6 months of lockdown, let me remind you), I started thinking about how different it would really be if I just took Lucy on a walk by myself.  Just thinking it felt so daring.  We never took Lucy anywhere unless both of us were with her.  But the more I thought about it, the more doable it seemed.

And so we ventured out, me feeling all brazen and Lucy looking confused ("Um, *where* is Daddy?  You know, my hand-holder?").  I can't say that I was nervous.  All of my past experiences with Lucy were saying that she was going to be okay, that we could do this.  We stayed relatively close to home, and made it back without incident.

Lucy quite enjoys our walks.  I prop her arms up so she can feel the breeze, we talk about what kinds of trees Mama thinks we see, we bark back at dogs, we say hi to the people out and about, and Lucy smiles randomly throughout.  I think she likes this newfound freedom.



3 comments:

Catherine said...

Glad to see you are enjoying the nice weather. Lucy is rocking the sunglasses!

Victoria Strong said...

Love, love, love! Go Mama!

Penny said...

You GO Barb!!! I'm so glad that you and Lucy are getting out and your feeling okay about it!!

Yay!!! I'm loving all the hair she has grown over the winter!

Penny