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?