Tuesday, May 28, 2013

Teach Your Children

Now.  Teach them now; while they're still young, still without bias or social grace.  Teach them that not every child in the world is like them - and not only in mundane, expected ways like hair color or glasses - but vital, noticeable, drastic ways.  Ways that include feeding tubes and braces and alarms and machines.  Ways that mean not being able to move at all - or not being able to control spastic movement.  Ways that mean not being able to make a sound - or maybe making loud, nonverbal noises.

Now.  Teach them while you're in your living room.  Get a book from the library.  Find a way to incorporate it into their play.  Don't wait for the out-in-public starefest (remember the aforementioned lack of social grace?)  I know kids stare at all kinds of things, and I personally don't mind anyone coming up to us and asking about Lucy, and really much prefer it to the silent, questioning stare, but there are people who do not wish themselves or their children to be a learning experience, no matter how well-intentioned.  It's well within your ability to head it off and start discussing it now.

Now.  Teach them now.  Teach them before they run into my mostly sweet, mostly outgoing (she is only almost 4, there is still quite a bit of sass and caution there!) Lucy, and hide from her.  I understand that the machines and stroller - and DIFFERENCE - is all very big and very intimidating to a small child, but a parent talking to them about it, introducing the possibility into their forming mind, can make all the difference.  To them, and to Lucy.

I don't know if Lucy is hurt by it yet, or even realizes why some children are so scared.  Why they won't talk to her, refusing to acknowledge her smile or yell.  But I can tell you, I do realize.  And to be frank, I'm tired of it.  I understand they are children, and you can't make them act a certain way, or accept something - BELIEVE me, I understand! - but you have the power to make it a possibility.  It's possible that instead of hiding behind you, they will step forward.  Maybe instead of tugging on your arm to get away from Lucy, they will return the smile, as they stare at her.  Maybe your teaching them will make a difference.  To both of them.

Monday, May 20, 2013

Fan of the flowers

We've been fortunate to have some really beautiful weather lately, and Lucy has been doing well with tolerating the breezes on our walks.  Lots of reassuring her that we have all of her machines ready to go, and that we can see her face.  She gets a bit anxious if the sun starts to go too far down, but we're working on that too.  She's a real fighter :)

While Lucy has always enjoyed walks, and being outside, this year she's really getting into the flowers we see - particularly the lovely flowering trees.  She likes to wait for us to tell her one is coming, so she can point her eyes skyward to catch a glimpse from underneath.  She likes to stop and smell them.  Bushes, too - lilacs are blooming right now, and she loves them!  We found a little sprig on the ground on one of our weekend walks, and picked it up for Lucy.

Just the right size for carrying along home.

The next day, a friend came by to drop off their golf registration for Links for Lucy, and brought Lucy a whole mason jar full of lilacs!  They're in her room now, perfuming the air.

Bedtime sniffs.

Lucy has decided for her Make-a-Wish that she'd like a backyard makeover, with a play structure adapted to her needs, and some flowering trees, shrubs, and plants.  We've told our wish granter, and had to tell her that we need to wait until our home addition is done.  It makes no sense to go forward with anything now, since we don't know exactly how much space will be taken by the house, and I'd like for the play structure to have direct access to a patio, for ease of use with Lucy's stroller.

We have slowed to a stop with our online fundraising.  We are blessed to have friends who are holding rummage sales, selling handmade items, and sharing the link.  I'm asking those who haven't shared the link to our donation site - please, share it and help us reach new people.  Lucy would be over the moon to have her own little paradise right in her backyard, and we can't use her Wish until our home is complete.  Help us make this happen for her.

Thank you to those who continue to share our link frequently, donate, register to golf, donate items, and pray for us to meet our goal.  We are so grateful to each and every one of you!

Wednesday, May 15, 2013

Good days for Lucy!

The last couple of days have been full of good things for our family!

Yesterday we had a visit from Matt Hall of Victory Renovations, who we were set up to meet with by Peyton Elsner's aunt, Tina Reddick of Unite 4 Peyton.  We are blessed to have been able to attend their fundraiser for the last two years.  Unite 4 Peyton is a wonderful organization that reaches out to help SMA families with the special needs they have that aren't covered by insurance (and believe me, there are plenty!) This wouldn't have happened without Tina, and we are so grateful to her!

We discussed what we need for Lucy's addition.  He talked to Lucy and I, peeked around our house, took lots of pictures, sketched down our layout, and left to take the information to the company's designer.  After he left, I realized that I hadn't gone into too much detail about what we are looking for in Lucy's room and bathroom - namely, storage (and lots of it!) for her medical supplies and machines.  I emailed him some pictures of what I was hoping for, with a message saying I hoped I wasn't being too forward.  Matt emailed me back, saying that those kinds of things were exactly what they needed from me.  He said that they were honored to be considered for this project, and that one day Lucy would be in the presence of God, and they could be blessed with knowing they helped me, Noah and Lucy enjoy our time here on Earth hopefully a little easier!  Yes, my eyes welled up a bit.  Obviously, this is the team meant to help us get Lucy what she needs.  Big thank you again to Tina, for putting us in contact with such wonderful people!  Now, to raise that money! :)

Today was a big day for Lucy; she visited her classroom for the very first time!  She has been Skyping with a wonderful EC class through the winter, and I was curious to see what the kids would think of her in person.  They only see her from the shoulders up, and beyond a little suctioning, have not been exposed to the full package that is Lucy.

Lucy was all ready to make a good impression.

We were admitted into the school, but weren't too sure where to go.  I noticed a child from Lucy's class walk in with his mom, so we followed them.  He was craning his neck to see Lucy, and I could tell he didn't recognize her.  He tapped on his mom and said, "Look!  A baby!" and his mother replied, "It's a little girl on a cart!" in a cheerful voice.  I just knew, after hearing that, this was going to be a good visit.  His mom recognized Lucy, and said she had seen her on Facebook - Lucy is a local celebrity ;)

The kids were a little shy around Lucy at first; she's quite a bit to take in, with all of her machines.  One of her biggest admirers was full of questions, about every machine and all of its functions.  None of them were scared.  Such a relief.  Lucy scanned the room while we were chatting, and said hi to each child as they came up to her stroller.

We got to do story time, and sing all of her favorite songs.

She was slightly more attentive when the story was live.  Slightly.

We stuck around for snack time.

Hand sanitizer for everyone!

Lucy even got a taste of what everyone else was having.

Pretty unsure about the peapods.  The citrus Hawaiian Punch was a much bigger hit.

We were so happy to be able to do this with Lucy, and she had fun too.  We're hoping to be able to do this a few more days this year, before summer is here!

Wednesday, May 8, 2013

Muscle clinic marathon!

Clinic days are so long - and muscle clinic days are the epitome of neverending - but it's nice to see everybody all at once and get the bases covered in every aspect of Lucy's care.

We visited with a dietician, OT, PT, took an x-ray, visited with GI, a few others in between, MDA, Dr. Schroth - a mish-mosh of specialties, a blur of names and faces.  The x-ray was for Lucy's spine, which has doubled its curve in a year; from 13 degrees to roughly 26 degrees.  We talked to Dr. Halanski, an orthopedic surgeon, who said that the curvature wasn't anything to address right now, and that part of Lucy's curve progression might have even been positioning during the x-ray, which was a big relief.  We went over the options to correct curvature with him anyway - he was very straighforward and knowledgeable.  Feeling good about having him as Lucy's surgeon in the future, if needed.

Lucy's x-ray also gave us a chance to look more at the lump in her stomach, which hasn't gone away.  Nothing showed again, so the GI suggested an ultrasound... at the end of our very long visit.  We opted to tack it on, rather than re-expose Lucy at our local hospital on a different day.  The radiologist said that the lump may be a lymph node, or a misplaced ovary.  Neither are very bad, apparently.  We'll be waiting for a call back from GI to further discuss the results.

Lucy will also be getting some additional bracing for her arms, which are - and forgive me if this is inaccurate, a degree in physical therapy I do not have - subluxed? at the elbows.  They hyperextend, and a bone nub sticks out where it shouldn't, so we are getting some strappy devices to try to hold it in the correct position.  We also came home with knee immobilizers that Lucy will be wearing while she sleeps, to try to keep her knees from contracting further.

Dr. Schroth likes to hit everything, from wandering eyes to tummy troubles to behavioral issues.  We talked about how Lucy completely rejected the eye gaze, and how she tunes out in general.  Not listening, eye rolling, humming over you while you talk to her - or while anyone around her talks, clamping her eyes shut while someone is trying to talk to her, vocalizing loudly and constantly... and how disciplines or rewards (re: bribery) are not effective in changing this behavior.  Dr. Schroth suggested we take Lucy to a child psychologist.  I am clearly not being effective in helping her to communicate, and have run out of ideas to try to reach her, to motivate her to express herself effectively, so we are going to be looking into this.

Well, I think that's everything in a nutshell.  Thank goodness for the summary they print out at the end of the day, because hardly a thing sticks in my head - especially going in on 4 hours of sleep. (Lucy likes to wake up in the middle of the night before busy days :P)  So glad to be back at home, relaxing!

Lucy trying out some kinesio tape - she was out cold the whole time she was getting taped up.  That's what happens when you wake up at 4am!

Nope.  Not havin' it.  Lucy's out.

Saturday, May 4, 2013

Things we've learned

We realized after Lucy's close call that we thought we were prepared, when in all reality, we were far from it.  The precious seconds that it takes to plug in a cough assist or attach bipap tubing and a mask, especially with the adrenaline and panic an emergency situation injects into you, can easily mean life or death.  Machines need to be ready to be used in an instant.

Noah made sure that Lucy's stroller is now able to convey all of her machines in an immediately usable state. Suction, cough assist, bipap, pulse ox.  The suction is also easier to get to, rather than tucked away under the stroller.  Spare parts were something we always carried, anyway, but we will be doing more frequent checks to make sure everything is working correctly.  The pulse ox settings have been changed to be more sensitive.  We will also be carrying a flashlight, at the suggestion of another SMA mom, so that we can see Lucy's face if we have her out in the dark.  Most times, reading her face will alert us to a situation before a pulse ox ever could.

We also realized that trips are hard on Lucy.  Long card rides are tough, having her schedule disrupted is tough.  We have decided to change her wish from Make a Wish.  I contacted them to tell them to take us off of the waiting list for going to Sesame Street in New York.  Seeing Lucy at the Sesame Street show, I realized that it wouldn't matter to her if she was on the original set - it's the characters that matter to her.  We may try to set something up with her being able to meet the cast of the musical, or we may try to do something involving a play area for her in our yard; we need to discuss it with her.  I need to remember to focus on what will make Lucy the happiest and most comfortable, not what I think she would like (or what I would like for her.)

I was worried that she would have a hard time adjusting after this episode.  Yesterday, she was very unhappy about going outside at all, even from the door of the hotel to the door of the van, 10 feet away.  She was very clingy to her bipap.  Today, she has been off her bipap as normal, and we were able to take her out in the beautiful weather for a walk.  She was perfectly peaceful.  Resilience personified.

Friday, May 3, 2013

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.