Almost too late

We were arrogant.  Lucy has always been strong respiratory-wise, often able to clear herself, or recover from chokes with little help from us.  And that arrogance almost got her killed tonight.  Since I feel like I'm never going to sleep again, I may as well type it all out.

Leaving the Sesame Street Live show in Chicago, which she was absolutely enthralled by, it was windy and dark.  Our van was a block away.  We suctioned Lucy and started walking quickly toward the van, coat over most of her head, trying to block the wind.  Noah's back was starting to hurt bending over to shield Lucy, so we switched places.  After a few steps, I noticed that Lucy was doing her "I'm choking" eyebrow wiggle.  The pulse ox stopped reading.  I started suctioning.  When the pulse ox came back on, her O2 was in the 60s, but the bar was red, so we figured it was just getting the reading back, but when it came back to full power, she dropped to 32.

We almost never take bipap on Lucy's stroller.  It doesn't fit well.  Tonight, we had crammed it in next to the suction, and it was hard to get at either.  We made the run back to the van, praying.  I ripped at the suction, trying to get it free from under her stroller, so we could access the bipap.  Suctioned Lucy, prayed.  Noah got the bipap turned on, but I couldn't get the stupid headgear on.  Held the mask to her face.  Eyes open, unresponsive.  Begged her to listen to me.  Noah suctioned.  Lucy started crying.  Yelled at two poor innocent guys sitting on a bench to call 911.  O2 was coming back up.  Noah ran inside to call 911 while I talked to Lucy, trying to get her to calm down and breathe.

The guys came over to ask if they could help, but Noah was already on his way out.  The hotel concierge came out and asked if we needed towels.  Nope.  Ambulance arrived.  By then, Lucy was back in the low 90s, but we elected to take her to the hospital anyway.  This was the first time something like this had happened to Lucy, and it scared the living shit out of me.

I couldn't get her to calm down long enough to try to finagle the bipap headgear, so I held the mask on her face as we loaded her into the ambulance, to warm her up.  She was pale and cold, but her lips were starting to pink up.  Answered a bunch of questions.  I was calm, and ordering people around - felt like I was completely on autopilot.  The EMTs were absolutely amazing, and listened and cooperated with everything, allowing both Noah and I ride in the back with Lucy, so he could suction and I could hold the mask.  Zero egos.  God bless those EMTs.

Made the ride, me singing the whole way, and even got a few smiles out of Lucy.  Checked into the ER, and everyone was wonderful again.  Nurse got her blood drawn and an IV in the first shot.  X-ray while on bipap, which we had by then gotten the headgear on for.  Blood gas came back perfect.  Doctor there called Dr. Schroth, who said that it sounded like everything was in control, and we could leave if we felt comfortable.  Lucy slept almost the whole time, exhausted and traumatized by the ordeal.  Noah had to get a cab back to our van, and come back to get us.  Alone in the room with a sleeping Lucy, I read all the praying for Lucy on Facebook and cried.  Adrenaline was gone.  I can't imagine how scary that was for our girl, to be choking and just have to hope that someone noticed or that her pulse ox would start alarming.

We learned a valuable lesson, and will never take it for granted that Lucy will be okay again.  Just grateful that we didn't pay the ultimate price this time, and that we get a second chance.  When she was being suctioned at dinner, and throughout the Sesame Street show, her suction felt like it may not have been getting the full power, but it was getting stuff out, so we assumed it was because the knob was pushed in, and we made sure the pressure was off the knob when we suctioned her.  That must have let some of her secretions pool in her throat.  When we get into the wind, Lucy starts breathing rapidly, almost hyperventilating.  Normally, she does well enough, and a couple of weeks into the "outside" season, she's over it and does fine.  Tonight, she must have sucked in spit, causing her to choke.  Her secretions were probably thicker from her tantrum before we went out, and more copious from the faulty suctioning (Noah later checked and found that the filter was somehow absorbing some of the pressure.)  Her bipap was still on an 8 second delay, and then stopped reading at a crucial time.  By the time it was alarming, I could clearly see on her face something was direly wrong.

We will definitely be hyper-vigilant from now on.  Lucy is scared to go outside for the time being, but we are hoping that we can ease her back into it, because she loves walks.  She is also seeming to want suctioning much more frequently.  She's obviously been impacted by this episode.

Thank you all for your prayers for Lucy - they were answered tonight.  This is the last picture we have of Lucy on our camera from this evening.  So unbelievably grateful that it's not our last, period.

Tummy Troubles

Lucy has been healthy all winter, and that is such a blessing!  More recently, though, we've noticed a hard spot in her stomach, below her bellybutton.  Motility is an issue for kids with SMA, since they are very rarely upright, so we assumed it was a blockage and started working vigorously to move it.

Last Thursday, we took Lucy in to the hospital, since it seemed as though it was slowly growing, and our efforts weren't making much of a difference.  Lucy was comfortable, but it was bothering me.  We really, really loathe going to the hospital, especially during the cold and flu season, which is lingering - much like the nasty, cold weather.  We talked to her ped, took an x-ray, and went home.

Lucy's pediatrician is a wonderful woman, with zero of the egotistical attitude that some doctors have.  She called Dr. Schroth with Lucy's x-ray results, which showed no blockage.  Dr. Schroth recommended extra water and Miralax.

So far, no results.  Praying that this will clear up between now and her appointment in the beginning of May, otherwise they will have to prescribe something stronger.  SMA isn't just about muscles and respiratory issues - there are lots of issues that stem from those problems, and then some additional ones having to do with the nervous system and heart.  SMA is constantly having to stay on top of how your child is feeling, looking, sounding - even if they can't tell you how they feel, you have to know.  And sometimes you have to know what is going on before they even start to feel it.  SMA is all about staying ahead of the game.  Hoping we got out in front of this issue before it becomes a real problem!

On a positive note, it seems as though Lucy's new Cough Assist - a portable, 9lb, battery operated version of the 30lb, plug in version we have - has been approved!  The vague insurance speak is hard to pin down to a certain response, but we're cautiously optimistic that we will be seeing one soon!

Also, we spent today thinking about the Boston Marathon - a group of friends from the Gwendolyn Strong Foundation, including the namesake's father, Bill, ran the marathon today.  My heart dropped when I saw that the marathon had been bombed - then I saw that Bill had updated, saying that he crossed the finish line a minute before the explosion.  Our hearts and prayers are with those who were not so fortunate.

Just having some fun :)

Lucy could care less about thunderstorms... Bert, on the other hand, does not appreciate them.

I present the World's Most Interesting Dog:

Lucy had the rep from Tobii stop by today, to help with the eyegaze trial.  We were shown how to adapt it a little more to her needs, to maximize the possibility of our insurance approving it.  Keep us in your prayers for approval!

Campaign to Change Lucy's Life!

As you know, the house next to ours was destroyed by a fire.  The man who was renovating it bulldozed it, and has decided to sell the property.  This gives us the opportunity to purchase the land and expand our lot, along with building out on our first story, to make our house more adapted to life with Lucy.  We could put in a handicap bathroom, and bedrooms for Lucy and ourselves so we can continue to be near each other, but not have to carry her up and down our stairs every day.

Please take the time to read the site I've set up on Gofundme.  We are hoping to do additional fundraisers this summer, but we wanted to start by just asking for help.  We absolutely understand if you cannot afford to donate; we ask that you please consider sharing our request, so that someone who can might see it, and we also ask that you pray for God to bless this endeavor.

Now please, go help us spread the word!

Also, some pictures:

Who is at my feet?

Lucy was being very sassy the other day, and this is what she

did when I asked her to smile for a picture.  Nice, huh?

We got out in the yard yesterday to start cleaning it up.  Bert

enjoyed romping so much, he decided to bring some of the 

yard in with him.

Eyegaze in the house!

The Tobii eyegaze was dropped off at our house yesterday, for a month-long trial.  Lucy has to use this time to practice with the device, and learn how to use it to communicate.  We need to document her use and provide data to her speech therapist, so she can submit it to our insurance.  Hopefully Lucy will show them she can use it appropriately, and it will be approved, because she deserves to have a voice.

Tonight was her first go at it since she trialed it late last fall.  There were only a few boards on it, so she was messing around, and found a button she liked :)

I uploaded a longer version of that to Youtube, but it wouldn't upload here.  It's basically more of the same :)  If you want to view it, click here.

Prayers would be appreciated - ask for our stubborn little miss will cooperate this month, and show those bigwigs at the insurance that she can use this device!

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.