RSV and Christmas Don't Mix

Owen started out the holiday season with Thanksgiving on such a high, we had nowhere to go but down.  He was so happy that day, alert and calm, satisfied in someone's arms or by himself in an chair.  It filled me with such happiness to get to have another year of holiday memories with my guy.  Then December hit and things started to slide in the wrong direction.  By the time we got to the week before Christmas, Owen was sleeping the entire day away and causing lots of concern for his mom and dad.  Then he started to get a temp which lasted a few days, and he wasn't going potty or eating (those go hand in hand, but alarming when we are talking about 26 hours with a dry diaper).   On Christmas Eve, I brought Owen into the pediatrician.

After an exam and test we learned he had RSV.  The doctor wanted Owen brought down to Boston immediately to be admitted.  With heavy hearts, Pete and I packed up our bags and made plans for Ellie to be picked up by family to attend the parties we would be missing.  On the drive down, I prayed over and over that somehow Karen would be able to work her magic and keep him out of the hospital.  Owen's oxygen levels were low and he clearly looked like he wasn't feeling good, but he didn't look like he was struggling to breathe any more then he usually does.

Our time in the ER was spent with the doctors and Karen.  She did work her magic- really she is a bit of a rock star and I am not sure how we managed to get her on our team- we are very lucky.  There is no doubt he would have been admitted if she wasn't there to assure the ER doctors what he would be okay.  It was a bit of a risk and I am sure the fact that it was Christmas Eve played a role in deciding to send him home.  We also felt he was on about day five of the illness so most likely the worst part was over.  We were under strict instructions to bring him back if he got worse, but otherwise after some oxygen and Albuterol treatments we got to bring Owen back home with us.

The positive is we didn't have to spend Christmas in the hospital with Owen.  The negative is we didn't get to spend Christmas with Owen.  He was too sick and contagious to bring to the family parties.  Pete, Ellie, and I went to three parties on our own while Owen stayed home with my mom (who was also sick).  I felt a bit like I was experiencing a preview of Christmas Future.  Ellie provided joy, hilarity, and distraction, but there was a gaping hole wherever we went.  I wanted Owen with us.  While going through the motions, a portion of my brain was worrying and praying for Owen.  Was he getting better or worse? When you have a medically fragile child with a life limiting diagnosis it is impossible to not panic each time they get ill.  Will this be the beginning of the end?  Is he going to pull through? So far, Owen has been sick many times and he always pulls through.  But one day he isn't going to.

The other day I read a comment by, no doubt, a very wise Facebook user.  They said, "Given the opportunity to walk in another's shoes, most people will still gladly choose their own." That has been rolling through my head over the past few days.  All around me I have seen, first hand or through pictures, happy healthy children and their parents spending time together creating happy memories.  When I stop to take a moment to wallow in the disappointment I feel about not having Owen with us this Christmas, I can't help but think of some of the other families who are experiencing a far greater sadness then I am right now.  Owen was home sick, I missed him, but his sweet little body was was waiting for me when we arrived home.  I can hear him snoring in the next room as I type this blog post.  I can think of a lot of people who aren't quite as fortunate as I am right now.

Here is to next year and all the bonus days I will get to spend with Owen in 2013!

Owen and his gal Barbie (courtesy of Ellie)

A Christmas Angel

PS- his oxygen levels are back up.  The breathing is still a struggle and he is still clearly sick, but I believe we have avoided the dreaded hospital for the near future.

MRI Number Four

Yesterday was Owen's MRI appointment in Boston.  The plan was the same as his past MRI's.  He would head to the PICU for Propofol sedation administered by Karen and Alice, once sedated they would perform the MRI, and then there were a couple of pokes and punches to be done for testing.  Unfortunately, we were unable to complete the MRI yesterday.

Owen has started to have trouble maintaining his airway.  If you listen to him breathe, it sounds like his chest is very congested and he needs to just clear his throat.  The noise is actually caused by lack of muscle tone in his soft palate.  For now, he is able to maintain good oxygen levels, but what this means for his future is a little murky.  Once Owen was sedated, the trouble he has with his airway became exacerbated and he needed support to breathe.  If this were a different procedure, like a CT Scan, where Karen could be next to him and help him, it would not have been a problem.  Unfortunately, Karen has to manage Owen from afar when he is in the MRI machine.  It just wouldn't work.

Our option now for an MRI is for him to undergo general anesthesia.  There will be some discussion with Owen's team and the anesthesiologist about this, but we are probably going to wait.  Owen did give us some blood and urine while sedated and we also did another skin biopsy.  Pete and I gave blood yesterday and the WES genetic testing has been sent out.  At this point, I think we will probably wait for those results and then make a decision about another MRI under general anesthesia.

We are disappointed.  We are concerned about what the airway issue means in the large picture.  It is a setback, but we still have our sweet, beautiful boy home with us.

Owen Updates

November was a busy month for our guy.  Here is a sweet Saturday morning picture of my favorite people.

For the record, Ellie long ago gave up her Nuk, but manages to borrow Owen's occasionally.  The sleeping arrangement in our house is a bit atypical, but it works for our family for the moment.  Owen now has his bean bag bed in the playroom, which at one point was our dining room.  Next to his bean bag is a twin bed (which will eventually be Ellie's).  Pete sleeps in the bed next to Owen.  As this picture illustrates, Owen spends a lot of his 'sleeping time' awake.  I wake up often in the middle of the night to hear my pterodactyl-boy squawking away downstairs as Pete snoozes happily away next to him.  Owen and I are not compatible sleepers, but he and his dad seem to manage just fine.  Owen still gets up in the middle of the night for a bottle and some medication, but the nights of endless screaming seem to be behind us.

Owen's night sleep pattern is a bit disjointed, but often his days are now passed sleeping soundly.  The infantile spasms Owen was diagnosed with in September have not been controlled by medication.  He continues to have them many times a day and Owen's neurologist believes this is the explanation for the added sleepiness.  If you are not familiar with what infantile spasms are, here is a link about these terrible seizures: Infantile Spasms .  We are very discouraged that we cannot adequately control these seizures, but we also understand this is a progression of Owen's disease.

Owen will be undergoing another MRI in December.  We are always eager for these to take place because it is the only test that has provided us with a nugget of information about our son.  Owen's last MRI was at the beginning of May.  This one will be compared to his three prior MRIs and hopefully a bit of understanding about the progression of the disease will be ascertained.  Owen's 'team' will be assembled for the MRI.  Karen will be administering the sedation along with Alice, Owen's favorite nurse, who is an expert at finding his elusive veins on a single poke.  Owen's neuro-radiologist will read the MRI and consult with Owen's neurologist. I cannot remember the name of the neuro-radiologist, but he is the same doctor who read Owen's prior MRIs.  He has sent them all over the country to colleagues hoping to find an answer to what is happening to our little guy.  It is comforting to know how many people we have committed to helping find answers for Owen.

On the day of the MRI, Pete and I will be getting blood drawn.  We have decided to move forward with genetic testing and are very excited about it.  We are hopeful it with provide a diagnosis, but also realize that might never happen.  At the very least, it may shed light on what gene or genes have caused all of this trouble.  We are hopeful it will give us answers for Ellie and also the possibility to have more children in the future. The testing is called whole exome sequencing.  It is very new- only available to the public for a little over a year.  Here is the link to Baylor College of Medicine where the test will be done.  It explains the science behind the test much better then I would ever attempt to paraphrase: Whole Exome Sequencing .  This test takes about 4-5 months for results.  Stay tuned to May 2013 for more information!

We also had family pictures done in November.  Since Ellie was born, we have done pictures every Fall.  Last year, we had our pictures taken at our house one week before Owen was diagnosed.  Those pictures will always be amazingly important to me because they captured our family in a very innocent and happy time.  Unfortunately, Owen was not in a good place the day we had pictures done this year.  We chose to use the same photographer who took pictures last winter with the Tiny Sparrow Foundation.  She did such an amazing job capturing the beauty of our little boy then, and we knew she would be able to rise the challenge again.  Jill is a very talented photographer; although Owen was irritable and his body was arching, she managed to capture some beautiful shots of him and our family.  If you live in Massachusetts and need a photographer, I would highly recommend her!  Here is a quick preview: Family Pictures with Jill Serrano

To wrap up our month, we headed to Mammie and Bankie's house for Thanksgiving.  The holiday season last year was one filled with conflicting emotions.  It was a seasons of firsts for Owen, but we also felt strongly it was a season of lasts.  It was very difficult to feel any joy.  This year, and hopefully years to come, feel like a bonus.  I want to soak up as many memories with my guy as possible.  Owen woke up on Thanksgiving morning in a wonderful mood.  He was alert and calm the whole day.  Owen joined us at the table for dinner and sampled some of Mammie's gravy on his Nuk, he visited with neighbors and tested out their armchair with delight, and he nuzzled himself into the willing arms of many aunts, cousins, and grandparents. It was a great day.

November 3rd

Happy Birthday, Dad!  November 3, 2012 arrived last weekend, which is means it has been exactly one year since Pete and I were given the news that our son has a progressive brain disease.  I have spent the last two months since Owen's birthday playing a mental game of, "This time last year..."  This time last year, I gave birth to a beautiful baby boy amid Hurricane Irene.  This time last year, we took our four-day-old son to dinner with us because he was such an easy baby.  This time last year, Owen started screaming and wouldn't stop.  This time last year, I was researching GI discomfort in babies convinced that Owen must have an ulcer.  This time last year, Owen's nurse practitioner told me at his two month appointment, "His head measures a bit small, let's refer him to a neurologist and have them laugh you out of the office because there is nothing wrong."  This time last year, Owen's neurology appointment lasted ten minutes and he was admitted to the hospital.  This time last year, Owen's doctors told us our baby boy wasn't going to live a complete life.  This time last year was November 3, 2011.

We chose to mark this November 3rd far away from our home.  We flew to Oklahoma to spend time with our great friends, the Potters.  Jenny has served as one of the most supportive people in my life as we have traveled this journey with Owen.  I knew this was going to be a very difficult day for me, and it was.  Being in a house with four adults, two toddlers, a 10-month old, and Owen, provided me with a lot of distraction.  This is exactly what I wanted and needed.  November 3rd will always be a painful day for me, but as long as I have my little guy by my side, life is good.

Owen is doing great lately.  He is calm, awake, and delicious.  He has turned into a complete plumpster guzzling bottles down every couple of hours.  Marking the day with such a healthy looking guy made it much easier.  I often marvel that Owen is one of the healthiest, sick little babies around.  There are no wires, tubes, or suctions attached to his body.  He eats on his own and he breathes on his own.  Yes, there is a tremendous amount of medication coursing through his body, but in our goals of comfort and quality of life, it seems like we are winning right now.  To recognize the day, and to mark how far we have traveled over the past year, Jenny and I ran a 5k wearing t-shirts Pete made for us.

The shirts say, "One Year Strong, Peace, Hope, Answers." Each one has our name on it.  This is a Pete Marshall original design and I love it! At some point in the future we will do a fundraiser for Owen and I know there will be a lot of takers for an Owen shirt! :)

Our visit to Oklahoma started on Halloween- we made it out of Logan airport without a hitch.  There were no hassles with TSA and all of Owen's medications, there were no delays because of Hurricane Sandy, and there were no toddler meltdowns!  Owen slept through all of the flights and was a fantastic traveler.  Here are some pictures of the fun we had on our adventure West:

At the airport wearing their Halloween shirts courtesy of Mammie.  Adorable!

Cutest Pumpkin in the Patch- another Mammie shirt...equally as cute!

Owen and Mickey Mouse about to go Trick or Treating

Silas and Ellie rowing a boat in the
Myriad Gardens in Oklahoma City

Two friends sitting on a porch

Smooches and fresh tortillas- life is good
Margarita for mom (yum)

Owen sleeping in like a teenager

True love

While Silas sleeps... fun will be had!  George and Ellie take over the Island of Sodor...

Owen and George- moments before this picture was captured they were holding hands.
Love those two boys!

Owen's Chair

After waiting a very short six weeks or so, it has arrived!  Here is my guy sitting up for the first time in his custom-fit chair!

There are supports holding Owen in place that wrap around his torso and also over the shoulders.  If you compare this picture to the one below, you will see we removed a layer of the foot pad.  This chair is fashioned to grow with Owen.  These things are seriously AWESOME!!  Also, he doesn't need the foot straps so we will remove those...

Ellie is an amazing big sister!  She was so excited to see her "buddy" sitting up in his chair.  She even attempted to strap him in- I had to suggest she let Rose do it the first time :)  2 going on 20...

His chair also comes with a custom made desk painted with dinosaurs!  Hours of play are ahead! 

In other news...the Patriots heard about Owen and sent him and Ellie a care package.  There was a lot of neat stuff in it and Ellie was thrilled!  She is a pretty big Pats fan- especially Gronk!  I think Owen might be more of a Vikings guy....

A new favorite picture.  No one is paying attention to Mommy, who is trying to capture a sweet family picture.   Love these kiddos!

Vision Test

As I have mentioned in previous posts, we are unclear what Owen's exact vision status is, but based on simple observation, we know it is very limited.  He is seen once a week by an excellent vision teacher from The Perkins School for the Blind.  Rose has provided us with many wonderful ideas on how to maximize the little vision he may have and how to explore his world by using his other senses.

Last Spring, Rose suggested we have a vision test called Visual Evoked Potential (VEP) performed on Owen. This would allow us to have a better understanding of what he can see.  Owen's eyes were tested when he was hospitalized as a two month old and structurally they are fine.  We know this is a problem with the brain and how it is processing the input it receives from the eyes- cortical vision impairment.  There are small clues Owen give us occasionally that make us question whether he might have a small bit of vision.  Our assumption is he can see brightness- for example, if he is in a dark room and you turn on a bright light, he might squint his eyes.

To clear up the guessing game, I made an appointment at Children's Hospital Boston with a highly recommended Ophthalmologist to have Owen undergo a VEP test.  This test is done by placing electrodes on Owen's head and then recording the signals they receive as different lights and patterns are flashed at him.  The results are then interpreted by the doctor.  It would give us an idea of how much information his brain is receiving from each eye.

It took six months to wait for the test, but his appointment finally arrived this past Wednesday.  Finally, we were going to have some concrete information about Owen.  This test was one that would actually provide us with results as opposed to the numerous question marks we are often left with after testing Owen.   Eager for information would be a mild way of describing how Pete and I felt in anticipation of this appointment.

In my last post, I discussed our attempt to wean Owen off one of his medications.  Clearly, it wasn't going well and we had to change the way we were weaning him.  His manic behavior - as described in our outing to the library- was actually withdrawal symptoms.  We have adjusted the dosing and he has stabilized.  This is a good thing, but he is back to sleeping a lot- and that is what he decided to do during his VEP test.  I could not wake this child for the life of me.  I undressed him, I placed a cold cloth on his head, I changed his diaper, I put an ice cold bottle on his bare toes, I passed him off to strangers to hold him awkwardly, I put him down on a hard surface with nothing cushy around him.... I did everything I could short of hurting him to try to wake him up.

After more than an hour, I had to give up hope that we were going to do the test.  Instead, the doctor dilated his eyes and performed a routine eye exam.  During this exam, it was noted that his retinas are slightly abnormal.  They are thinner then normal and also discolored.  This made the doctor want to perform an Electroetinogram (ERG).  This procedure is usually done under anesthesia since it requires children to have contact lens-like electrodes placed on their eyes.  Given how sleepy Owen was, the doctor thought it might be possible to perform the test without sedating him.  We scheduled it for the next day.  Owen behaved appropriately and did complete this test.

The main reason the ERG test is important is because it might be a clue to Owen's disease.  There are some white matter brain diseases that also include damage to the retina.  By having a clear understanding of how Owen's retinas are functioning it could possibly be a marker for his disease and narrow the focus for his geneticist and neurologist.  We will get the report in about 10 days.  I left with the impression that Owen's retinas are abnormal, but not significant enough to play a major role in his disease.

It was a stressful two days spent at the hospital and we left with no new information...sound familiar? I dream of the day a doctor will sit us down and make a definitive statement about Owen that will give us an answer to the many questions we have about our little guy.  The unknowns are very frustrating and discouraging.

After the exhausting medication withdrawal week, Owen has been doing well.  He managed to visit a park and listen to Ellie play, he took a nap in his stroller at the neighbor's house while Ellie played with friends, he joined us for our daily trek over to another neighbor's house to feed the horse, goat, and puppy, and today he is going to help Ellie and his dad carve a pumpkin.  I am eager to see what Owen thinks about the way the inside of a pumpkin feels!

Here is a picture of Owen sleeping in bed this morning.  By the blanket you will see a toy onion that Ellie gave to him.  We often discover, after picking him up, a toy placed next to him from his sister.  When I asked Ellie about the onion, she told me that she had cooked Owen eggs for breakfast.  She is a pretty awesome big sister! 

A Roller Coaster Ride

For the past two months I have been struggling to write and update this blog.  I think about doing it many times a day, but I just can't come up with subject matter I want to write about.  The problem is, I feel as if  Owen has peaked and is now heading in a direction I don't like.  This summer was Owen's time to shine.  He was an active member of our family and some of the sadness in our hearts was lifted.  Unfortunately, since August, we have been on the decline.  I blame those terrible Infantile Spasms.

The past three weeks have been trying. Owen had a cold which quickly progressed to pneumonia.  It only took a week of antibiotics to clear his lungs again, but I feel like it is a foreshadowing of what lies ahead for our little guy.  Last February, when he had a cold that earned him a ride on Hospice, it never once moved into his lungs.  He coughed his hearty old man cough (something you need to hear to truly appreciate) and kept himself going.  With his cold this time, he was listless and weaker.

This moves us to the next bump in the road we are trying to hurdle.  Owen sleeps a tremendous amount.  For the past week, we have been working to slowly wean some of his medications to see if we can get him to wake up.  Peace and comfort are our goals, but if we can achieve them with Owen awake and responsive then that is our first choice.  So far, we have only had a tiny bit of success.  He is more alert, but it isn't necessarily a positive change.  His alertness brings back arching, restlessness, constant spit and drool, and repetitive stiffening of his body.  We also see times of calmness, cooing, and a look on his face of what we are calling 'pre-smile'.  We want more of the second and less of the first.

Here is a compare and contrast look of last week, when Owen was at his full dose of medications, and this week, when we have weaned him on one medication by 5%.

Last Week:  Owen and I headed to the library.  I picked him up off his mat where he was happily sleeping on his tummy and carried him to the car.  He stirred while I put him in his car seat, but was conked out again before I even drove out of the garage.  At the library, he opened his eyes as I moved him from his car seat into his stroller, but went right back to sleep.  I went in the building, returned books, and browsed for new ones for about fifteen minutes.  Owen slept the entire time.  Then we left, he slept, and continued to sleep through the reverse transfers until he was placed gently back on his tummy on his mat in our living room.

Today:  In my never ending quest to be 'normal', I took Ellie and Owen to story time at the library on this dreary, rainy day.  Owen was pretty calm and peaceful this morning so I thought it would be a manageable adventure.  We had to go to the library one town over because Amesbury Public Library has their Children's Room on the second floor of the library and is not handicap accessible.  Nice thinking Amesbury Public Library.  Owen was awake and chatty on the ride over and amiable as I unloaded him from the car to the stroller.  No automatic doors at this library, so I struggled through two sets of doors with an eager toddler, stroller carrying Owen, purse and library bag.   During the story time and following craft, Owen hung in his stroller with a couple of tactile toys.  He wasn't happy, but also wasn't unhappy.  Just hovering a hair shy of distressed the whole time.  Owen lost it after about twenty minutes.  I was in the middle of picking out books with Ellie and the screaming started.  By this time, Owen was drenched from neck to tummy with spit and drool.  I took him out of the stroller and gave him some medications while Ellie did a few puzzles.  I offered a bottle, refused.  Pacifier, refused. It was quickly apparent we needed to go, so I gathered our stuff and returned him to the stroller.  The breath-holding screams started, he was choking on spit, and had a little bit of blood in his mouth from biting his tongue or cheek.  Amid stares, we exited the library into the pouring rain.  I spent the entirety of the car ride home listening to Owen scream, fall silent as he gagged, and then scream again.  I pulled a bloodied (he scratched his skin by his eye in a fit of rage), vomit covered, furious little boy from his car seat ten minutes later.

Is there no such thing as a happy medium in our life?

Updates

We have been busy the past few weeks since Owen's birthday.  With Fall descending upon us, I have been bitten by the crafting/decorating bug.  Pumpkins bought, mums planted, and felt Trick-or-Treat bags are being sewn.  Sprinkled in between all of this fun are regular day-to-day duties that come with being Ellie and Owen's mom.  Here is what we have been up to:

Let's start with Ellie- my very busy two year old decided to eat a quarter, nickel, and penny.  This earned her a quick drive to Anna Jaques Emergency Room, which then earned her an ambulance ride to Children's Hospital Boston, which then earned her surgery to extract the quarter from her esophagus.    The nickel came out on my rug while doing the Heimlich maneuver and the penny eventually exited her body naturally.  Sigh.  Here is her xray:

 A few days later, Owen and I had the pleasure of going to Perkins School for the Blind to have him fit for a custom chair.  We brought Christine, Owen's occupational therapist, with us for the trip.  He looks fantastic in his chair- they had some models made and we put him in those, and then modified the position and angle to properly support him.  These chairs are made out of corrugated cardboard, then painted (Owen chose a blue chair with dinosaur), and given to the family.  Each chair comes with a matching table to use for sensory activities.  The chairs are made by volunteers and the supplies are donated.  Amazing stuff- we are very thankful!  We got to meet a few of the men who were crafting the chairs- I envision them to be retired engineers who like to keep busy- what an awesome way to keep active and do good things for people!

After Perkins, we headed over to Babies R Us to try out some convertible car seats. Owen outgrew his bucket car seat a few months ago in length, but still is under the weight requirement.  It has been a topic of conversation for awhile about how to safely transport him in the car given his low tone and lack of head control.  Christine and I plopped Owen in every seat in the store- about 20, I think.  For those of you who haven't car seat shopped recently, they run from about $100 to $350 plus.  I suggested we stick to the $150-$200 range and Christine obliged.  Guess which one we bought?  Yup, the most expensive one in the store.  Toward the end of the shopping spree, I suggested we just try Owen in the expensive one for comparison.  My little boy has Mercedes taste and immediately kicked his arm out on to the arm rest, snuggled in, and let his momma know this was the seat for him.  Here is my guy happily enthroned in his new chair.  Only the best for Owen:

The highlight of the first week of September was a visit from Jenny and George!  Jenny is an awesome friend- I suggest everyone have a Jenny in their life -but not my Jenny because I don't want to share her.  We became friends while living in Minnesota and our friendship has continued to grow over the years as she and her family returned to their home state of Oklahoma and Pete and I returned to Massachusetts.  Her son, Silas, was born three days after Ellie and they are destined to wed some day (I hope...).  Jenny has been a huge source of support this past year - and she is a clinical psychologist- so she knows what she is doing.  Her visit included a trip to Rockport, hanging with the kids (she brought her 7 month old son, George, who is an adorable little mood booster wrapped in a compact little package), and lots of good food.  It was amazing to have her just pop in for a weekend.  We will be heading out to visit her and the rest of her family at the end of October.  We are very excited!  Here are a couple pictures of the visit:

Ellie and George making and eating music

George and Owen

Unfortunately, the day that Jenny and George left, Owen and I had to head into the hospital for another EEG.  Owen has been doing something we labeled "the typewriter" since the end of July.  At first, it was very subtle and we didn't put a lot of thought into it.  Each week, the slight jump his body would make became more and more exaggerated.  We noticed it occurring when Owen was waking up and this repetitive movement could last for ten minutes a few times a day.  One of Owen's therapists suggested it was a form of seizure so we videotaped it and emailed it to his neurologist.  The EEG showed that Owen is having a seizure called Infantile Spasms.  Here is how the National Institute of Neurological Disordered and Stroke defines this seizure:

An infantile spasm (IS) is a specific type of seizure seen in an epilepsy syndrome of infancy and childhood known as West Syndrome. West Syndrome is characterized by infantile spasms, developmental regression, and a specific pattern on electroencephalography (EEG) testing called hypsarrhythmia (chaotic brain waves). The onset of infantile spasms is usually in the first year of life, typically between 4-8 months. The seizures primarily consist of a sudden bending forward of the body with stiffening of the arms and legs; some children arch their backs as they extend their arms and legs. Spasms tend to occur upon awakening or after feeding, and often occur in clusters of up to 100 spasms at a time. Infants may have dozens of clusters and several hundred spasms per day. Infantile spasms usually stop by age five, but may be replaced by other seizure types. Many underlying disorders, such as birth injury, metabolic disorders, and genetic disorders can give rise to spasms, making it important to identify the underlying cause. In some children, no cause can be found.

 
This is not great news for Owen.  The positive about this seizure is we can actually do something about it.  Owen is on a medicine which should work to permanently stop the seizures.  It feels amazing to finally have something we can work toward fixing as opposed to just trying to maintain quality of life.  

This past weekend, we made our annual trek to Cider Hill Farm for apple picking and cider donuts.  Yum, Yum, and Yum.  Fall has arrived!

September 2010

September 2011

September 2012

One Year Strong

 On Monday, we had the amazing opportunity to celebrate Owen's first birthday.  I am so grateful for my baby boy.  Six months ago, Owen was on hospice and I held very little hope that he would still be with us for his birthday.  Owen continues to be a mystery, an amazing little puzzle who brings sweetness, joy, and love to our life.  He was born in the midst of a hurricane and his first year of life was a symbolic extension of that storm.  This past Monday was a beautiful, sunny, warm day and I pray that this next year will be an equally bright journey for Owen.

Owen- August 27, 2011

Owen- August 27. 2012

The cake Ellie decorated for Owen

A very happy family 

Welcome to the party!  Owen rang in turning ONE with a pool party at his Mammie and Bankie's house

The cake Mommy made and Daddy decorated for Owen

Ellie enjoying a cupcake

Me and my boy on an amazing day

Happy Birthday Owen! We LOVE you!

Owen's birthday was wonderful milestone for us (yes, a milestone! Check it off the list).  To mark the day, to celebrate all of the challenges, heartache, struggle, hope, love, and faith our family has gone through these past twelve months, we planted a tree for Owen.  My mother-in-law chose a Dwarf Alberta Blue Spruce- selected with Owen's beautiful blue eyes in mind.  We planted the tree in their front yard, near the Black-eyed Susan, which returns each August with their happy flowers in full bloom. 

Owen's tree

Our family has been touched by many people this past year who have offered us help and support.  For months, we had meals delivered from our church and there was a steady stream of people providing loving arms to comfort Owen.  We have been blessed to collect many new friends and we are so thankful for the support.  Owen has an amazing ability to connect with people.  His long eyelashes draw you in and his red hair (with curls emerging) is quite adorable.  During this past month, I gifted a few special people, "Owen's Ladies" as I call them, with their own Black-eyed Susan to plant in celebration of Owen's life and their role in it.  If you are a reader of the blog and have a green thumb, plant some in honor of Owen.  These beautiful flowers are strong, a perennial- they will come back every year, and bloom during Owen's birthday month. 

Here is what they look like- Rudbeckia is their scientific name

It was a great day, a special birthday party, and a reminder of what an amazing family Owen was born into.  It was also Pete's birthday.  For the second year in a row, Owen has completely monopolized the day.  I hope that happens for many more years to come (sorry Pete!).  

My delicious baby when he was a few weeks old
Happy Birthday Owen!