Partying: Owen-style

Owen turned two yesterday and had a blow-out pool party bash to celebrate.  Here are a few pictures of the fun.  Owen slept through the night on Monday night and was up at 8am on his birthday for a kiss and bottle.  Then he powered back down and slept until 1:30pm when I picked him up to get in the car for the party.  He was clearly just planning ahead and conserving his energy because he was awake the remainder of the day and night taking in all of the festivities.  I am confident he had a blast!  Thank you to everyone who helped my little guy have such a special day!  There was also an amazing lantern launch at the end of the night. All in all a great day!

First present of the day was an Adrian Peterson jersey from Daddy

Dinosaur cake made with love by Mommy

Like any party animal, Owen had his hair done at the party so he was looking his best.  He brought his stylist Kelly as usual.  He is becoming so high maintenance....

Enjoying everyone singing Happy Birthday with Mommy, Mammie, and Brielle

A smooch from Daddy

Celebrating Two!

Celebrating Owen's second birthday is a pretty amazing feat.  I really did not think I would have the opportunity to whisper, "Happy Birthday, my sweet boy," to him another year.  Owen is leading me down a rocky path, but he has proven time and again he is here to fight.  His life is on his own terms and I am just chasing behind trying to keep up with him.  A mother's eyes are always biased, but I know my guy is one of the cutest kids on the block.  His red, curly hair and gorgeous blue eyes draw people to him.  The irritability of his first year and a half of life has mainly subsided.  He melts his body into mine, wraps his long fingers tightly around my hand, and I could spend an eternity 'a-gooing' with my delicious little turkey.  I have never been more in love with my sweet Owen, which makes the realities of his life so difficult.

This past year has brought us the diagnosis of Infantile Spasms, the disappearance of smiles and giggles, a confirmation of legal blindness, respiratory complications, loss of movement in his legs and torso, a confirmation of genetic rarity and mystery, dramatic progression and disappearance of white matter in his brain, a feeding tube, regular bowel issues, a full-time team of home nursing care, and the list goes on.  Instead of a thriving, skill-gaining two-year-old, we have a wheelchair bound, heavily medicated, seizure-laden little boy who continues to lose the little bits of life he has.  These are the realities of life with Owen.  They are harsh, but they are facts.

Is he still amazing, sweet, handsome, delicious, and a blessing to our family? YES! Can he feel the love that surrounds him by our family, his therapists, and doctors? YES! We will celebrate every year with Owen that he chooses to share with us.  Our goals for him remain the same; comfort and quality of life over quantity of life.  Owen has taught us a lot about parenting a medically complex child.  We can make statements like: "No feeding tubes!", but the reality is we are unwilling to watch our child slowly starve to death.  That does not fall into the category of quality of life.  I cannot watch my child writhe in pain due to bowel obstructions; I am going to medically intervene even though the cause of these obstructions lies within the realities of his brain disease.  At what point do you say enough is enough when the medical world is at your finger-tips?

Two-year-old Owen

I have no idea what the next year will bring for Owen.  My hopes include a diagnosis and comfort.  I just recovered from grieving the possible loss of him in early August.  Yesterday, Owen spiked a fever and vomited for the afternoon because he spent time outside.  My sweet boy has such a hard time maintaining his body temperature- very common with neurologically involved children.  It is so sad to see him struggle through days like yesterday.  His disease puts limits on every single aspect of his world.  Everyday is a roller coaster with my guy.  Will there be a 'Celebrating Three!' post in the future? I am not sure- and it doesn't matter to me.  If Owen wants to celebrate another year then I will be along side him.  Happy Birthday to the sweetest little two-year-old around.  I love you!

This is my alert happy guy a little over a year ago. He is so adorable! 

This is Owen demonstrating that just a year ago he could pick his feet up and move them around.  He could also bring his hands together and bring them to his mouth.  He cannot do any of these skills one year later. 

This is the last picture captured of Owen smiling.  It was taken in July 2012.   It was a great moment in time with his cousin Andrew, but who knew how special this photo would become? 

...And The Search Continues

The results are back and Owen does not have a mitochondrial disease.  Our guy is one of the rarest among the many rare kids out there.  In some ways it is like hitting the lottery, but not in the oodles of money kind of way.  I had been eagerly anticipating these results for the past month, only to be 100% distracted when they finally arrived.  It was just a blip on the radar of an intensely emotional week for Owen and our family.

Owen has been dealing with a cold for the past few weeks.  His baseline respiratory status is labored and not normal.  When he is sick he must work a bit harder- his baseline breathing is a struggled inspiration, but when sick he struggles with inspiration and expiration.  He receives a nebulizer treatment three times a day- often it doesn't do much to help with the labor of breathing, but he seems to like the sound and air...so he gets it.  This past Monday, there was a noticeable change in his breathing status - he was working much harder and sounded pretty bad.  His oxygen was at 86% (Owen usually fluctuates from 90-100% throughout a typical day).  His nurse and I agreed if he didn't sound better by Wednesday, I would bring him into the pediatrician.  Wednesday's doctor visit resulted in a tentative diagnosis of pneumonia in his left lung- he had a fever and his oxygen was at 88%.  A follow up on Thursday confirmed this assumption and his oxygen had dipped into the range of 85-87%.  This was easily the most sick I have ever seen Owen.  We were prepared for an end of life situation and attempted to emotionally prep ourselves.  In typical Owen fashion, Friday brought improvement of the fever and slight respiratory improvement.  Saturday continued to be fever-free and his breathing was close to back to his usual baseline.  Did he have pneumonia? Possibly or possibly not, but he was very sick, and he is a fighter.  Pete and I marvel at how strong our little boy is.  I am so thankful he is recovering and have spent the past few days smothering him with kisses.  Owen's cough still sounds pretty terrible, so I know he is still fighting something, but he doesn't appear to be sick so perhaps this is his new baseline.

Last night we took Ellie and Owen to their first viewing of fireworks.  We had a lovely family evening and the show was great- Pete and I really enjoyed it!  Ellie was far more interested in the $2 glow bracelets we bought for her and Owen demonstrated zero signs that he could see- or hear- the fireworks.  I have spent my morning sneaking up on him and banging things loudly to see if he would react.  Finally, a few moments ago, I banged a glass on the wood floor near his ear and he startled.  A mean Mommy, but I was seriously concerned that he might have lost his hearing!  This kid likes to keep me on edge!

Asleep while out to dinner at Flatbread's

Looking handsome in his wheelchair at a birthday party

Two sleeping kiddos after the fireworks

Asleep holding on to his favorite bead toy

Owen's 'I'm Two!' photo (it is a picture of a picture so the quality isn't the best)

Owen working out in his stander- we will slowly increase the angle to help his legs bare weight.  Very cool and he loves it!

Summer Fun

Picking up where the last post left off- Owen's ileus has resolved and he is doing well.  We are still working out his feeding schedule through the g-tube and have hit a few hiccups (well, projectile vomiting actually...), but it is working great for medication.  Owen was at the hospital yesterday for his follow-up after surgery and had some stitches removed.  After two stinky weeks, my guy finally got a bath last night.  He looked so great sitting in his tub chair and smelled delicious afterward.  Those bath wipes you use post-surgery leave something to be desired...

Here are some pictures of what Owen has been up to the past few weeks.

Daddy and me at a birthday party

Hanging in the cottage at York Beach, ME

Snuggling with cousin Connor at the cottage

A morning snooze amid toys

The bead toy on my left is my FAVORITE toy- and has been for over a year.  Also, I am now wearing t-shirts as opposed to onesies- my mom had lots of fun shopping for me post g-tube surgery

At the neighbor's house- was planning on a swim in their pool, but was so comfy on the pool float that I never even dipped a toe in the water!

Grilling on the deck with Dad

A snooze with Ellie's favorite mouse- she gave it to me to snuggle 

Fun at the park- my first time on the merry-go-round and I LOVE it!

Mommy and me at a birthday party

My first chance joining in the annual kids photo- Mommy was a bit nervous leaving me in Ellie's arms, but she and I did just fine!

Ellie demonstrating just how yummy beach ice cream really tastes!

Long Sands at York Beach, ME

Trying out the slide 

Results of Owen's Surgery*

*I am starting this post with an asterisk because I am sure some of my medical information will not be 100% accurate.  I will do my best to share what Owen's doctors told us last Thursday, but on a day that was very stressful...some of it might have become a bit muddled.

The good news is...Owen is home.  We came home on Sunday afternoon and were very happy to be out of the hospital.  The doctors, nurses, and staff at Children's Floating Hospital are amazing and accommodating, but I still hate being at the hospital.  Unfortunately, Owen has not been fairing well over the past few days.  Last night I brought him to our pediatrician with a very distended belly.  He has been miserable since Monday - belly bloat, arching, opening up his stitches, the whole shebang.  (of course- my guy was a cool cat on Sunday in the hospital and then Monday was screaming for the whole day.  Nice Owen.) The consensus last night between our pediatrician and Karen was Owen's bowels never restarted- Ileus.  We have reduced a medication in hopes to get things moving.  It is possible he will end up back in the hospital, but as of 10:30 this morning, the belly looks much better...although he still hasn't stooled. Poor guy!!

Here are the procedure reports from head to toe (actually thigh):

MRI:  Owen's brain MRI was read and compared to his last MRI which was in May 2012.  In a year, the white matter of Owen's brain has significantly thinned.  The brain stem appears to be functioning normally.  Owen's neurologist has been slowly steering us away from the category of Leukodystrophy for a few months now and this MRI further supports his theory.  Owen will always fit into the definition of Leukodystrophy because the white matter of his brain is abnormal.  He does not fit into the disease categories of Leukodystrophy because his disease is not progressing in the same manner.  A few examples are that his seizure disorder is much more significant than most Leukodystrophies and the progressive thinning of the white matter is much more rapid compared to most Leukodystrophies.  Owen's two brain MRI's -a year apart- show progression typical in an eight year time span of other Leukodystrophies.  The findings are significant and confirm that Owen's brain disease is progressive.  The only positive to take from this news is it helps Pete and I feel confident in our decisions to provide love and comfort to Owen for as long as he chooses to be with us, but we will be very cautious with medical interventions beyond comfort care.

Bronchoscopy: Owen has Laryngomalacia.  His vocal cords are collapsing which is the cause of his noisy, struggled breathing.  In most cases, this is something that can be fixed with a surgical procedure. Owen's ENT spoke with us about how this procedure will not work for Owen because the cause of his collapse is neurological and based on low muscle tone.  His recommendation is we put in a tracheotomy.  At this point, a tracheotomy is not in the care plan for Owen.  We will continue to treat his large adenoids with Flonase to help create breathing room.  His oxygen saturations fluctuate from 100% down to the low 90s depending on how hard he is working through out his day.  Our goals will be focused on keeping Owen calm and comfortable.  In the future, we are willing to provide supportive oxygen if needed, but we will not surgically intervene to open up his airway.

G-tube: Owen had a Mic-Key gastronomy tube placed.  So far it is working well for Owen.  We are now able to provide him with his medications via the tube rather than by mouth.  We will continue to bottle feed Owen during the day and then he will be on a 10-hour drip feed overnight for additional nourishment.  We are slowly working up to our goal feeding schedule - and Owen's belly bloat issues are making this difficult.  In the grand picture- this tube will be amazing.  Owen often sleeps for many hours and will miss scheduled medications and food.  If he is sick his sleep pattern extends significantly and proper hydration is always a concern.  These problems are now solved.  If Owen has an airway emergency in the future, we now have another way to provide him with supportive medication quickly. For all of these reasons, we are glad Owen was able to have the tube placed.

Muscle Biopsy: A biopsy of Owen's thigh muscle was taken for testing of mitochondrial diseases.  This is the only definitive way to test for this type of disease.  We would love to hear results of a diagnosis for Owen, but we are more likely to finally rule out mitochondrial diseases.  It will take about three weeks for the results.

Thank you for all of the support and prayers for Owen and our family.  We really feel blessed to have so many people cheering for the cutest red-head I know.

Playing with shaving cream the day before surgery

In his surgical garb before surgery

A very early morning waiting for anesthesia

Resting after surgery

Ellie and Mommy visiting the bear outside the hospital

Ellie playing in the amazing playroom at the hospital 

For those who are interested in why Owen's hospital is called the 'floating' hospital, I borrowed this from the hospital's website:  Floating Hospital’s history as a pioneer in pediatric care began with the Reverend Rufus B. Tobey, a kind-hearted Congregational minister who was struck by the sight of indigent women and their sick children enjoying cool ocean breezes on Boston's waterfront on sweltering summer evenings. Health care at the time had few means of therapy and fewer cures, but many believed in the cleansing and therapeutic qualities of sea air to ward off poor health and specific diseases. To help families, Tobey proposed taking sick babies and their mothers for a day's outing on Boston harbor. The Boston Herald reported Tobey's suggestion and the story brought in a flood of donations to help make it a reality. On July 25th, 1894, the Boston Floating Hospital was born on a rented boat named the "Clifford." Each day, babies received needed therapy, mothers learned how to care for and feed their children safely, and patients, parents, doctors, nurses, volunteers and crew enjoyed the "beneficial harbor breezes." For 33 years the hospital offered medical care for sick children while cruising Boston harbor. The Floating Hospital ship was destroyed by fire in the spring of 1927; fortunately, no patients were aboard.  Rather than rebuild the ship, the trustees decided to expand the on-shore program.  in 1931, the Jackson Memorial Building opened at the hospital's current site.  .

For those who are interested in why Owen's hospital is called the 'floating' hospital, I borrowed this from the hospital's website: 

Floating Hospital’s history as a pioneer in pediatric care began with the Reverend Rufus B. Tobey, a kind-hearted Congregational minister who was struck by the sight of indigent women and their sick children enjoying cool ocean breezes on Boston's waterfront on sweltering summer evenings. Health care at the time had few means of therapy and fewer cures, but many believed in the cleansing and therapeutic qualities of sea air to ward off poor health and specific diseases.
To help families, Tobey proposed taking sick babies and their mothers for a day's outing on Boston harbor. The Boston Herald reported Tobey's suggestion and the story brought in a flood of donations to help make it a reality. On July 25th, 1894, the Boston Floating Hospital was born on a rented boat named the "Clifford." Each day, babies received needed therapy, mothers learned how to care for and feed their children safely, and patients, parents, doctors, nurses, volunteers and crew enjoyed the "beneficial harbor breezes." For 33 years the hospital offered medical care for sick children while cruising Boston harbor. The Floating Hospital ship was destroyed by fire in the spring of 1927; fortunately, no patients were aboard.  Rather than rebuild the ship, the trustees decided to expand the on-shore program.  in 1931, the Jackson Memorial Building opened at the hospital's current site. 
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Surgery update

Owen had surgery today for a g tube placement, muscle biopsy, bronchoscopy, and brain MRI.  He tolerated general anesthesia well and the breathing tube was safely removed in the PICU this afternoon.  He will remain in the PICU for the next few days and I will post a more detailed entry soon.  Thank you for all of the prayers and well wishes!

Super Owen

We are less than a week from Owen's surgery date and my emotions surrounding it could not be more mixed.  Yesterday at work, I was sick to my stomach all day thinking about what he was going to undertake in less than a week...and that I was voluntarily choosing these procedures for him.  Owen needs to have a feeding tube placed.  I know this.  To place the tube he has to go under general anesthesia...and if he is going to do that, then it only makes sense to perform a muscle biopsy to rule out mitochondrial diseases.  I know this.  I just hate to make him go through all of it.

Pete and I brought Owen to the hospital last Monday to meet with the surgeon who will perform the muscle biopsy, skin biopsy, and work in conjunction with GI to place the g-tube.  I instantly liked him and feel very comfortable knowing he will be in charge of my sweet guy for a few hours.  While I can't remember his exact words, he had the ability to share with me that a large portion of the muscle in one of Owen's thighs would be removed (because Owen is so small and skinny), yet he said it in a kind and slightly joking manner; he made it less frightening in that moment and okay.  Of course, now I worry endlessly about how painful the recovery will be for my little guy, but it needs to be done.  I know this.

Owen needs to return to the hospital this Monday to meet with anesthesia and ENT.  Owen's surgeon feels it is important for the anesthesia team to meet him prior to the surgery so they are prepared for all the fun Owen will be providing them on Thursday.  Owen's airway continues to be a concern.  It has been progressively getting worse over the past year and is starting to be at a place that truly frightens Pete and me.  ENT has been added to help address the collapse and provide us with options.  They may chose to perform a bronch on surgery day (I believe this is a scope-type procedure where they will go down his throat to ascertain exactly where the collapse is happening).  I will know a lot more after we meet with ENT on Monday.  Karen plainly laid out the fork in the road that we are approaching with Owen.  Our first option is surgical intervention: a Uvulopalatopharyngoplasty (UPPP) and then eventually when that fails, a tracheotomy.  The other option is sedation.  We use medications to sedate Owen so that he does not become agitated and that will allow him to manage his airway more effectively until it collapses entirely.  Can't say we really like either choice...so we will meet with ENT and hope they have an option that falls somewhere in the middle.

Owen's temperament the past few weeks has been great.  He is calm when awake and seems content.  This is partly why I am struggling so much with the impending surgery.  We are achieving the quality of life for our little turkey right now that we are always striving to maintain.  It would be a lot easier to send him into surgery if we in the midst of weeks of poor eating and intense irritability.  This surgery should have happened in April when Owen was having relentless seizures and really struggling.  Given his happy mood, I have been taking him out and about a lot more.  Owen has been enjoying his wheelchair which makes him a lot more manageable outside of our house.  We even tackled the grocery store the other day and I think he loved it!

There is a super special family living in Chicago that I have come to care deeply about via blogging.  This mom reached out to me over a year ago to tell me how much she enjoyed reading about Owen.  I immediately started reading her blog about her family and specifically about her son who has a very rare genetic disease.  She is really an inspiration to me- her writing has always focused on the triumphs of her son and has really helped me on the days when I want to wallow in the "why me", "why Owen", "why our family" doldrums of living life with a special needs child.  After a post about Owen's impending surgery, she emailed me and said she had something she wanted to send Owen.  In the mail we received a personalized cape from a group called Tiny Superheros.  What an amazing gift- if ever there was a super hero in our family, it is Owen! Owen happily wears his cape wherever he goes on the back of his wheelchair.  I think it totally ups the cool factor for my sweet boy.  We are so thankful that Owen is part of this amazing group and we immediately knew we wanted to pay the generosity forward.  There is a Tiny Superhero we know who totally deserves a cape.... and it will be arriving soon!

I will try to post one more blog with the updates from the appointments this coming Monday.  Surgery is scheduled for this coming Thursday, June 27th.  I hope everyone who reads this blog with hold Owen close in their hearts that day and say a prayer for him.  Here are a few pictures of Owen until next time:

On the swing at the Early Intervention Resource Room

Ball pit at the Early Intervention Resource Room (he didn't love it which was really surprising....)

Bath time- I love that he demurely adjusted his leg for privacy during the photo shoot! Who knew when we bought our house how much we would love having a giant claw foot tub in the main floor bath! 

As cute as can be

Early morning snuggles- these two crack me up!