Strides Forward...Surprises Included

It’s been a busy two days on the northern front, perhaps best guided by pictures, which of course makes it gobs more fun anyway. 

Photo 1:  Friday morning.  Hello, Houston, we have a dangler…and not ONLY a dangler , but an out-of-bed transfer!  Can we get a whoop whoop?  (Actually there WAS a giant whoop because we are in a people-whoop-for-milestones kind of place.  Feel free to join in ex post facto, though.)  Of course we had to take a pic with just a few of our favorite members of the team (Kae, Alisha, Mary and Dani) to commemorate.  Small though it may seem to typical earthlings, getting into a chair in the rhizotomy world is a HUGE milestone.  It went so well that Camille was able to escape her room for the first time in five days and ride down to the cafeteria, where she nearly ironically lost her lunch and grew a tad ghost-like, so retreated to bed.  But…..

 

Photo 2:  Friday afternoon, she was up for round two, which resulted in a change to appropriately themed Wonder Woman garb, a wheel around the grounds of the campus, and a dose of fresh air.  

 

 Photo 3:  Highly anticipated spa and game night.  Not yet allowed to shower, some of our favorite evening nurses, Heidi and Liz, managed to make an in-bed shampoo a giddy-fun time.  Heidi, one of the kindest and happiest souls we’ve yet to meet, was even quickly persuaded to join in the fun.  (I’ll pause here to say that the care model here is simply extraordinary.  It deserves a post all its own, so more to come on that.)

Photo 4:  Saturday morning.  We managed to keep it a secret to Camille that our friend Maria was going to make a cameo appearance, having traveled up from Omaha to visit family and see Big C.  Maria has been a blog topic before on more than one occasion because she is just that amazing.  We first met her when she was staff in Camille’s preschool classroom, and lucky for us, she transitioned into the role of the school secretary/captain, so we’ve made her continue to be our personal friend.  She and Camille have a secret cat-call, “Pssssst,” which has always been how Camille has recognized her without distance vision.   Best part of the weekend, hands down,  was sneaking Maria in and visually seeing Camille’s thought process enfold across her face as she heard that distinctive “Pssssst” and realize that Maria was in Minnesota!  Of course, in vintage Maria style, she brought with her a bag of the most heartfelt gifts which she had collected along stops during her Colorado vacation, including an LED disco ball, fake snow from Colorado (see Photo 5), Pop Rocks, practical joke devices and much more.  My favorite, of course, was the shirt she made herself for Camille which reads, in glitter, “I am Camille O’Neill.  I can do anything.”  Perfect mantra for the weeks of therapy ahead. 

Finally...what should have been the climax of the weekend but paled in comparison to Maria’s visit...Camille was discharged from the inpatient unit this afternoon and moved over to our room in the Parent Accommodation Center across the skywalk, which will be home for the next few weeks for some combination of our family.  Honestly, it was a bit of an emotional catch-22 because we love the nurses that much.  However, to make this move on Day 6 is a bit unprecedented, partly because the new program director has a new protocol and partly because her progress has been so positive--so we choose to celebrate.  Perhaps the true news flash, though:  SHE TOOK A THREE HOUR NAP!!!!!  A freak-tastic miracle. 

In terms of strength, she has made huge strides way ahead of the curve (Dr. Tu’s words), but we still are a long way from the end prize.  She is bearing enough weight to assist immensely in transferring from bed to chair; that is as far as her independence is allowed for the time being, and honestly, all that her noodle-y legs can take.  She has a long work week ahead, which I am sure she will tackle with a charismatic heart and a sense of fervent determination, because according to Maria, she is in fact Camille O’Neill. 

What's That, You Say?

What is that, you say?  Is that a pillow?  Why yes, yes it is. 

Today has been a day of small victories such as these with obstacles intermixed, as we expected there would be.  (Seriously, though, for all of the complaining about not having a pillow for SEVENTY TWO HOURS, the moment the blessed thing got to come back was quite anticlimactic.)  All “leashes” connecting Camille to artificial devices were removed.  PT commenced x 2 with a lower body workout and head-of-the-bed raising, all going fabulously.  Dangling off the side of the bed proved to be more pain than could be tolerated, even by this determined girl of ours, so we’ll take a running leap at that again tomorrow.  OT started off with a bang as Camille challenged the student to two games of Connect 4 in which she claimed victory.  Going forward, her dance card will fill up quickly and similarly each day in terms of structure, varying greatly, however, in terms of moments to remember with quality people. 

My time here for the moment is dwindling, which is something that my heart is wrestling.  Bill will stay up here solo for the next week, while I go back to be with Jack and Liv and get a bit of work done, returning the following week.  Though Bill is likely more amazing (and fun) than me at handling the ebbs and flows of each day, I will find it so hard to leave and be absent from the daily baby steps made towards the prize.  Still, my prize starting Sunday is getting to bask in some of the glory of summer with two kids at home who have been so pliable throughout this adventure.  For that, I am very excited.

In the meantime, I watch Camille wrap up her night on FaceTime with friends and family alike, and all is right with the world. 

With Grateful Hearts

-->

Day 3 is coming to a close, and it would seem that the Queen of the Sleep Strike succumbed to slumber at 7:20 p.m., even without her pillow.  This is miraculous, people.  The girl hasn’t gone to bed this early…well….ever.  With the sunset comes the end of her horizontal adventure, which is a welcome event to Bill and me, though a bit conflicted for Camille.  With a rhizotomy comes a dose of the unknown.  As the pediatrician here put it so well, the nerves of Camille’s lower body have been aggravated and tend to have to throw a bit of a fit.  For Camille, this means the potential for some numbness and tingling in her legs along with some possible hypersensitivity.  It is nearly certain that they will emulate cooked pasta until we reteach the muscles to do what they should have been doing in the first place.  So…the girl is entitled to a bit of anxiety as she is unsure where and when her body will fail her and when it will pleasantly surprise her. 

Meanwhile, I have been utterly filled with a peaceful heart…grateful for so many things.  I am so grateful we are HERE.  As we started this process, often in the wee hours when the wheels were running full-throttle, I doubted our instincts and questioned if we were taking her to the right place for the right reasons and heeding the right advice.  You can only hope that you are listening to the right voice in your heart, and not the crazy delusional one in your head.  After three days here, I not only think, but KNOW we are absolutely where we need to be.  I cannot overstate how incredible the staff is—every person—and we have met many.  Camille’s team has included nursing, PT, OT, Child Life, Social Work, Developmental Pediatrics, Anesthesia, surgical staff, the nursing coordinator, the dietician and neurosurgery.  They care without restraint and provide a model for continuity that is hard to match in this day and age of healthcare.  Care is approached with dignity, there has never been a single assumption about what she can do, and they have devoted their great hearts and minds to excelling at what they do every single day.  They are becoming fast family who will forever change our lives and not easily be forgotten. 

I am equally grateful for our daughter, whose charm, wit, charisma and curiosity have made her many fast friends.  I am so humbled that she is ours and that we have the privilege of learning life lessons from her every waking day. 

I am grateful for the beauty here that energizes us.  Shriner’s is nestled along the beautiful banks of the Mississippi River, and the city of Minneapolis has an incredible trail system which has afforded some beautiful runs.  Having said that, I am grateful that I made it back to our transient abode as I clearly didn’t read a map before heading out, and thus my 3 mile, -30 minute run turned into somewhere in the neighborhood of 8 miles and 80 minutes as I had to consult Google Maps more times than I care to admit. 

And finally, though I am grateful for so many more things, I want to say that I am grateful for the help back home.  Aunt Sissy, who I am quite sure is quite thankful for the quiet tonight, held down the zoo Sunday through this morning, Sarah has been keeping the troops entertained during banker’s hours, and my parents made it to Omaha today to take over the captainship tonight.  So, though I am a bit heartbroken that I’m missing moments like Jack missing his last front tooth and my nightly snuggles with the Livster, I am beyond thankful that the kids are un-phased.  They are in their favorite hands and my mom thinks to send me the Kodak moment, to boot.  Not going to lie; I'm also grateful that Livvy astutely spotted the friggin' Japanese Beetles that appear to have returned to torment our Linden tree this year, and my sweet dad is there to trek off to the nursery to find something to prevent them from inviting all of their friends to the party at the expense of our foliage.  

We are blessed.

Surgery, Sleep Strikes and the Supine

First things first.  Bonus points answer from yesterday:  If you spotted the dog…and Jack…underneath the kitchen table in the top photo, you win.  Yes, this kind of weird unpredictability is typical.  Yes, we usually choose to ignore it.  

Disclaimer: I have full permission from Camille to provide updates.  With any luck, she'll guest blog sometime soon.  :)

Now, down to business.  Thanks to all of you for the well-wishes and support that you’ve sent our way.  You sure know how to make a girl feel loved.  Camille was overjoyed with all of the messages, cards, and calls. 

Surgery took a little over four hours and was considered a technical success.  Obstacles were few.  Other than being overly weepy in the recovery room and repeatedly sobbing in an anesthesia-induced slur, “I don’t know why I can’t gain my composure!” she made it back to her room without pause.  Apparently this is common with teens, albeit shocking because Camille’s bubble is usually drama-free.

Our most monumental mountain for the day was all of the pomp and circumstance surrounding the topic of sleep.  This girl has never been a daytime sleeper, something in which she takes great pride (which I completely cannot relate to AT ALL).  I remember cursing to the gods of slumber when she was VERY tiny because she gave up her naps FAR too soon and has never looked back.  For days now, she has really gotten herself in quite a lather because parents and professionals alike have told her that she could expect to be spend quite a little of the day today resting and sleeping.  She simply could not overstate the fact that this is simply not in her nature and could simply not imagine that she would be able to carry through on this.  Finally, realizing that she was feeling pressured to be able to sleep, I in no uncertain terms told her on the way to Pre-Op that she did not HAVE to sleep but certainly shouldn’t feel bad if she should be inclined to sleep.  So….she hasn’t slept but a total of SEVEN MINUTES since coming out of surgery (much to the chagrin of her parents, who were banking on an afternoon nap), and instead, fired off strings of narcotic-laced texts, slurred phone conversations, and much chatter all-around about the insanity of having to lay flat to the point of “being pillow-less for 72 hours!”  Apologies to those on the receiving end.  Unless, of course, it was as entertaining for you as it was for us. 

 

The process of recovery over the next several weeks will reveal more about the big picture, so we remind ourselves of the virtue of patience and seek the joys in the interim.  True to form, she has established herself as the supreme question-asker, conversation-starter, and all around social monarch.  We find joy in this, even though I just heard her mention her newly coined ICD-9 diagnosis of “pillow withdrawl” for the 187^th time today.  Love this girl.  Love her spirit; indomitable it surely is.

And We're Off....

Writing has eluded me for quite some time, or rather, I have eluded it for one reason or another.  Our upcoming adventure seemed a purposeful time to fire up the blog again; we’ve had many requests for updates on Camille’s next journey, so here we go.

This morning, we are bound northward to Minneapolis/St. Paul to Shriner’s Hospital for Children, where we will ground ourselves for the better part of the next month or so. 

Raising a daughter who is first, our incredible almost-13-year-old, and then somewhere down the list, a budding human with two chronic medical diagnoses, has afforded us many lessons about life balance.  There has been no manual to teach us how to live in-the-moment while at the same time grasping for the parental crystal ball which guides medical decisions to secure the most independent, happy, healthy future possible for Camille.  To trick-ify the situation, it happens that there is, in fact, not a crystal ball (it would seem that our quest for it was time spent in vain), so gut instinct as well as the counsel of those close to us has necessarily served as our guide.  For the most part, on a day-to-day basis, we have learned to keep the balance in-check; however, there are times when instinct and input causes the balance to weigh more heavily in one direction.  This past year or more we felt that tipping and sought out more specialized opinions about her atypical lower body gait and balance quirks, brought on from her cerebral palsy (or so we thought/mostly think), which was brought on by her micro-prematurity.  Long story short, as she has grown rapidly, we have started persistently thinking something along the lines of “Crap.  If we continue with current advice, by the time she is a young-middle-ish adult, she could experience significant joint and mobility issues.”  So…last September, we started navigating an evaluation at Twin Cities Shriner’s Hospital.

Long, hard-to-make-short story, we’ve traveled up to Minneapolis three times since the fall, first seeing orthopedics, which prompted an UBER-fancy gait analysis at Gillette Children’s Hospital, which prompted a neurosurgical consult, (with a side bonus of a spinal MRI) which gets us where we are today.  Tomorrow morning, Camille will have a selective dorsal rhizotomy, a procedure which will treat the muscle spasticity caused by abnormal communication among the brain, spinal cord, nerves and muscles, which is caused by her CP (we think mostly).  Doctors will expose her spinal cord and stimulate the nerve rootlets which are involved in her lower body function, cutting the ones that are causing the spasticity and thus her orthopedic and gait issues.  As an aside, as part of the preparation for this surgery, she had to partake in an MRI of the spine, which revealed that she has an extra lumbar vertebra (RIGHT?!?!?), and as a result, has a tethered spinal cord.  Basically, this means her spinal cord isn’t free-floating within her spinal column, but rather is “stuck” to some of the bone.  This, in turn, can cause spasticity as well.  So, tomorrow she gets a “bonus surgery” to have her spinal cord liberated.  (So, the newer question has been ‘Is the spasticity she has related to CP or to this surprise spinal cord tethering?’ We think probably a little bit of both.  Again, haven’t found that crystal ball yet.)

All of this has won her a highly anticipated 10-day inpatient hospital stay in Minneapolis, with an additional 2-3 weeks of outpatient physical therapy there to essentially offer remedial training to her muscles, at which point we will come home and continue outpatient physical therapy in Omaha.  At this point, our faith is that this choice has not been in vain and that she will reap positive results which will improve her quality of life both immediately and down the road. 

This brings me to the best part of all of this, the realization…AGAIN…that humanity is full of really, REALLY incredible peeps.  I mean, we knew that, but now we REALLY know that.  Yet AGAIN.

I distinctly remember a time many years ago, in the darker days, when I became keenly aware of a huge inner struggle with which I couldn’t come to terms.  On the one hand, after the triplets were born and we were facing Camille’s vision loss head-on, I wished more than I have ever wished for anything (and ever will) that we could make it all go away.  I desperately wanted a magic wand to take away the pain, the challenges and the heartache.  Yet, we were far enough into the journey to have met some of the cream-of-the-crop in the human race, see human kindness in its finest form, and truly have soul-altering connections and conversations with strangers, family and friends, knowing that we would not have had these experiences if life had not turned out the way it did.  While I was fighting what was happening, I realized that there was a giftedness in it.  This has continued to reveal itself over the years as we continue to have incredible experiences and connections and are finally able to start reciprocating to those who need an understanding heart.  These days, I have mostly tamed the struggle.  Not going to lie…if that magic wand showed up and promised to take away the vison loss and the CP for Camille, I’d buy it.  And I would sacrifice a lot for it.  I’m human after all.  Yet, since we know that isn’t possible, I now approach her past and current adventure knowing that the struggle in it will also carry incredible-ness that would otherwise not have been possible.  I will speak for both Bill and myself (because he loves it when I do that) in saying that our goal is to help her see the giftedness, too.  Which, in reality, is kind of a silly goal because it is her positive lease on life that taught us a large part of this lesson in the first place.

We have already seen the blessings in motion.  Family, friends, and co-workers that are friends like family, have showered humility-invoking kindness upon us.  No detail has been left not thought of.  Aunt Sissy and my parents and Sarah are taking care of the hooligans at home.  Gift baskets have arrived from our coworkers, friends and family who have considered every single detail imagined…from quarters for vending machines to money for food and gas to entertainment to ever-important snacks to Creighton gear to “13^th Birthday in a Basket.”  Specials in our life have reached out, planning surprises to brighten her already unwavering optimism.  I am reminded that Liv and Jack must be among the most charismatic siblings and children a sister and parents could ask for.  The pictures above are a capture of just a smidgen of the physical out-pouring of love.  (Bonus points if you can spot the bit of daily calamity I didn’t even see at photo time). 

We are told that the journey ahead will be a tough one, but there is confidence that the end result will be worth it.  While that can mean a lot of things, most of which we do not yet know, we do know that we are incredibly, indescribably grateful for the amazing people who surround us and lift us upward.  In following Camille’s charismatic and quirky rose-colored glasses-ness, we are determined to find the connections and experiences in this journey that will forever change us for the better.  Stay tuned.