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!