Friday, September 28, 2012

the book calls it "anticipatory grief"

Every minute my heart aches. My mind goes nonstop. I grieve for the past and everything that he has already lost and for the future he will never get to have.

He will never go to school, he will never have a "best friend" to share secrets with. He will never come home from school and answer "nothing" when I ask what he learned that day. He will never have a favorite sport, subject or hobby. He will miss family game nights, Sunday morning cuddles and cartoons, birthday parties at the movie theater, vacations, family picnics and holidays. He'll never learn to drive a car. He'll never go to prom or run track or cross country. He'll never have the opportunity to learn from his mistakes. He's never even made a mistake. He'll never skydive, kayak, mountain climb, see the world. He'll never meet a girl and fall in love. He'll never have his own children, family or career.

He will never experience life the way every parent dreams their child will and so I grieve for myself and for him.

I know I'm not "supposed" to think like this, but honestly what parent wouldn't? From the minute your child is born you begin thinking about and planning for their future.

I was stopped at a stoplight the other day and across the street I saw a young man, fair haired, fair skinned and he had stopped and was holding a door open for an elderly man. I thought, how nice, and although I tried to stop myself, I couldn't help imagining it, could that polite young guy have one day been our Ollie? No of course not, I can't compare him to random guys I see, he is himself and no one will ever be just like him.

But I hate that I will never know what he'll grow up to look like, I hate that I will never get to know his personality, sense of humor or see him grow into a responsible adult, or even a sweet natured independent child.

And recently I've been grieving even more for Miles, Oliver's younger brother that he never got to meet, our red haired angel that was too beautiful for earth. My beautiful boys, I love you so much. I am so sorry you won't get the futures we dreamed up for you.

For now we live simply and in the moment. We make the most of every precious minute we have together. We kiss him, hug him, hold him, rock him, soothe him, breathe in his sweet scent, but it's not enough. It will never, ever, be enough.

Thanks Jeanette for the great costume. :) Ollie makes a very cute monkey.

Thursday, September 27, 2012

You know it's a tough night when your text messages look like this...

Chris is at a surprise party for a very good friend of ours. We almost never leave each other alone, caring for Oliver is a two person job, but I insisted he could go and I'd be fine. And I was.

We've become very good under pressure and remaining calm in challenging situations. That's hard to do when your child is having a seizure and you're trying to put small amounts of medicine into a tiny port into his belly. Deep breaths and stay calm, Oliver needs us to stay calm. If we start freaking out not only will he not get the care and medicines he needs, but he picks up on emotions, and losing it in front if him will probably make him even more confused and frightened.

Oliver has now calmed down and snoring in my arms. :)

Unfortunately we've watched Oliver have several seizures over the past few days. We are starting to recognize the signs that one is coming. It usually starts with some arm tightness and then unprovoked crying or fussiness, followed by an unearthly scream unlike anything else you've ever heard. After this his entire body, neck and head will arch backwards and he's screaming at the top of lungs, his eyes are rolled into the back of his head and his legs and arms start twitching. They are terrifying to witness and we give him diazepam (valium) right away to try and stop the cycle. His antiseizure medicine has also been increased to try to prevent them from happening in the first place. Yesterday we watched him have four of them in a row. He had barely caught his breath from one and it would start again. It was awful. Finally they stopped and a 3 hour nap followed. He catnapped throughout today too, they really wear him out. I hope we can get them under control soon.

ok, I am going to try to move him from the rocker to the bed. We'll see how this goes.

-posted using Blogpress on my iPhone

Please contact Denise by Monday, October 1st if you would like to go, so that she can get a final head count in time for the event. This is an "adults only" event and there will be a cash bar. There will also be a silent auction of baskets put together by all the departments of BHS and a regular auction of some larger ticket items. All proceeds will go directly to Oliver.  She can be reached at or at Bethel High School ext 428.

We hope to see you there!

Wednesday, September 26, 2012

Doctors and butterflies

We had an appointment at CCMC this morning with Dr. Radar who did Oliver's gtube surgery. She took out the button that was too big and causing friction, resulting in granulation tissue around the site. Very gross and sensitive tissue that he never had issues with until this wrong size button debacle. Well now he has the correct size in! Yippee! She used silver nitrate on the granulation tissue and sent us home with some to treat it a few more times on our own. "Treating" it means chemically burning it off, yikes. Our boy is such a tough cookie. At first she was going to have us go to his pediatrician a few times to apply it, then she reconsidered and realized that we were perfectly capable of doing it ourselves. As far as MLD is concerned we probably know more than 99 % of the population, and as far as our son, we know 100% more.

We were in and out of the appointment incredibly fast, and I don't mean that the Dr rushed us, not at all. Just all that annoying waiting you tend to do at appointments, we had none of that. From the minute I walked up to the secretary they brought us pretty much right into a room, and Dr Radar walked in the door 3 seconds after us. We hadn't even sat down. Oliver gets VIP treatment at CCMC and I sometimes wonder if it's because of the serious nature of his condition, or because they have a post-it note in his chart that reads "Don't piss off this Mom!". Maybe a little bit of both. Did I mention he got not one, but two stickers at the end? Yup, that's right, Oliver is VIP all the way!

The entire visit was so quick that we only paid $1 at the parking garage, that's a first. We also had time to go to the Rainforest Cafe only a few minutes from the hospital. Ollie's Grammy Ciparelli met us there. Oliver loved all the sights and especially the sounds, that place is loud! I think that was his favorite part! He loved the gorillas and we moved tables to sit right next to a giant yellow butterfly that Oliver was fascinated with. Now he is sleeping in the backseat, the rainforest wore him out.

Look at those cheeks, he's put on weight. He's finally into size 24 months.

Loving the huge butterfly!

Do you hear those gorillas Dad?

Dr. Radar changing out his button. Hooray for size 2.3!
Oh and I've heard from several people that the donation button isn't working right now. I'll see if I can fix that as soon as we get home, maybe after a nap...

Tuesday, September 25, 2012

90 days

90 days. That's really all it took for MLD to take nearly every ability from our son. 3 months. That's it.

At the end of June Oliver could walk, talk, swallow, sit up, control his legs, control his arms and fingers, roll over, pull himself up, control his head, blow kisses, giggle, play with toys, tell us he loved us...

Now he cannot do a single one of those things. His retained skills include his ability to smile (thank God), he can still hear, and he can still see, but we're currently witnessing him lose his sight. To say it's been painful to watch him go through all of this would be an understatement of incredible proportions. It has been torture, that is really the only way to describe it.

His sight is starting to become affected, and we're seeing his eyes do very strange things. Darting back and forth, rolling back, pupils being either very dilated or not at all, regardless of light. He doesn't track you if you walk across the room or even move back and forth right in front of him. He doesn't track toys, he doesn't always blink when things are near his face and he probably should. He can't focus on things very far away and is starting to struggle with close up. I'll be holding him and he'll be looking away and I'll say "Hi baby, I love you, look at your Mama." And his eyes won't budge. I cry just thinking about it.

We don't know to what extent he can actually see, because he can't tell us and there is really no way to gauge. I just know that I don't want his whole world to go dark, since day one of his diagnosis it's been my biggest fear. I would give up my ability to see for the rest of my life if he could just retain his ability to see for his unfairly shortened life. How evil is this disease? Isn't it bad enough that it's taken away his ability to move, talk and eat? But his sight? It seems the cruelest of all. To not be able to see the faces of his Mommy and Daddy as we hold and comfort him? To not be able to see all the people and other things that he loves like Elmo, lions, dogs and his Daddy's silly dancing? It makes me sick to think about him becoming blind and being scared. Nothing is worse than him being scared. I feel physical pain at the thought. I feel helpless.

Scared, needing his Mommy and Daddy, trapped in a world of darkness, struggling to breathe, no idea what is happening to him. Sick. This disease is sick. And it all happened so fast.

Here are some pictures of Oliver from June...

And here are some pictures from Oliver in September

Monday, September 24, 2012

Chris and I have both taken leaves of absence from work so that we can spend our days like this...

The iPhone was playing white noise to help him sleep, we aren't just using our son as a table. ;)

Friday, September 21, 2012

Such a nice day.

Zoo, good nap, woke up happy, had a visit from his buddy Tanner and watching some Curious George. I wish every day could be so easy and happy. :)

Thank you Sarah Noble family for sending Ollie the books and DVDs, we enjoy them every day. Ollie loves Thomas and Curious George!
And thank you John Pettibone Family, you guys are something else, simply amazing. Chris and I are enjoying the meals and desserts soooo much! Who knew that educators could also make such great chefs? hehe You are keeping us both eating and at healthy weights, which our mothers (and some friends ;) ) surely appreciate. Not to mention the tremendous emotional support and offers to help out at the drop of a hat. It's great to have such a strong community supporting us.

Tomorrow we will be sending all our thanks to the Bethel community. A Family Fun Track meet has been organized in Oliver's honor. Here is the link to it...

Oliver's Track Meet

I wish we had thought to post it sooner on the blog, but our minds don’t plan ahead very well anymore. If you can make it there to show your support we'd love to see you there. It starts at 12:30 at Bethel High School. It will even have an obstacle course in the middle of the field for kids!

Kisses from my buddy Tanner.
Thanks for visiting bff. :)

A fun day at the zoo

We had a lovely morning at the Beardsley Zoo. All the animals were awake and running around. On our drive down I called Oliver's Uncle Steve at work and without hesitation he was there to meet us! I love our Friday morning getaways with Oliver's health aide Rachel. Oliver really likes her too, today she ran around corralling the peacocks to get them to come closer to Oliver's stoller. It was so funny! She also takes great pictures! We stopped for 5 guys on the way home for burgers. Now we all need naps!

Great to see you Uncle Steve!

Here's Rachel chasing the peacocks over to Oliver

There is a fox somewhere in this picture

The tiger was only a few feet away!

Arms getting tight, a sign that we need to take him out of his stroller before he gets too upset

I insisted we take a picture with this cow

Getting tired, time to head home. :)

Monday, September 17, 2012

Oliver's playdate

My friends Emily, Sara and Erin came to visit today and they brought their adorable children for a big and wild play date with Oliver. The kids were so cute and we had a lot of fun. Here are some of the pictures...
Addy gives Oliver some kisses.

Sweet Brady does not look too happy about it while Ollie looks in love...

We can still be buddies. :)

Now this picture was hard to get! Sadie likes my homemade pillow...

We took this next picture a few times because I realized I had my crazy crooked Bell's Palsy smile and made Chris retake it with my head turned. You know you're with old friends when you forget for hours about your crazy crooked face, until someone tries to take your picture...

Thank you girls for visiting, it meant so much to us. And thanks for lunch! yum!

Saturday, September 15, 2012

I finally put Oliver's highchair in the basement today. It's been sitting in the kitchen unused for over three months. I felt like if I moved it that I was accepting that all of this is actually happening. To admit to myself that Oliver would never again be sitting down at the table and eating a meal with us? No more pancakes, pasta or mac and cheese? Just cans of gross vanilla pediasure?

That just couldn't be right. No.

So I left the chair exactly where it has always been. Like at any moment I would simply wake up from this terrible nightmare and look over and see him sitting there. Face covered in yogurt, smiling back at me with his gorgeous blue eyes, happy and healthy and not going anywhere.

Thursday, September 13, 2012

Oliver is having a tough day with crankiness, and his tube is a little leaky. He's having a restless nap right now. We were able to finally get casts of his lower legs/feet to make his braces. The braces will stop some of the flexion in his feet and hopefully help with the spasticity in his calves which would make him more comfortable.

While meeting with hospice yesterday was difficult beyond words, we knew we needed to have a plan in place for Oliver's care. Hospice is typically provided for 6 months, but in the case of a pediatric terminal illness it works a little bit differently. Hospice care can go much longer than the 6 months and we fully intend for it to. Oliver is medically stable at the moment but with MLD things can turn rather quickly, and with "cold season" around the corner we needed to make sure we had everything in place to keep Oliver as healthy and comfortable as possible. A cold can turn into pneumonia easily with a child with MLD. The word hospice" takes a huge emotional toll on us but now it will allow us to leave the house with a health aide, and also get immediate access to medicines if he needs something to make him more comfortable. The Dr. and/or nurses will also come to our house if he gets a cold, or needs a check up, so we won't have to drive all the way to Hartford. And while all of these are good things, and big reasons we agreed to sign up with the palliative/hospice care team, the word "hospice" and "child" should never be part of the same sentence.
Oh he just woke up from his nap...

Wednesday, September 12, 2012

Just met with the palliative care/hospice nurses to coordinate Oliver's care.

Hospice. For our two year old. This world is crashing down around us.

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Tuesday, September 11, 2012

I'm really sorry to those of you who have ordered bracelets recently, or donated this past month and haven't received a thank you. This month has been crazy and is taking a huge emotional toll. We will work hard to get everything out this week. Please know that we are so grateful for your love and support.
Ollie has been much more comfortable on his new medicine, so we are very happy about that. His tube is leaking less and less each day. We had a great time at Tamara and Neil's wedding! We danced with Ollie and everyone took turns holding him and kissing him. He loved the music and all the action!
Here he is sitting with his Nana.

I am not doing so well, Lyme disease is kicking my butt. I have brain fog, anxiety, no energy, and Bell's palsy on the right side of my face. Yes, Bell's Palsy. It can be brought on by Lyme and/or stress, and well, it turns out I have both! I can barely close my eye and my smile is crooked and weird. It feels like when you go to the dentist and novocaine is wearing off. My right eye only blinks every now and then and it isn't in sync with the left making me look crazy. I was at the eye doctor yesterday and he's keeping a close eye (haha) on me to make sure the lack of blinking on the paralyzed side isn't damaging the cornea. I go back next week and the neurologist on Thursday. The only treatment is steroids, which can cause the Lyme bacteria to go ballistic, so basically my only treatment option is "time" and to "relieve the stress in my life". Right. Looks like I'll be battling Bell's for some time.
I had planned on stopping to score some coupon deals at CVS on the way home from the appointment, but the eye Dr. had used drops that temporarily made the whites of my eyes bright yellow! So between my crooked smile, frozen cheek muscles, and weird yellow eyes that blink at completely different times I decided to go straight home and not have New Milford police hunting down a terrifying couponing zombie girl.
Here is Ollie taking a nap on Daddy right now...

I need to go eat dinner so that I can take my zombie meds, I mean, antibiotics.

Monday, September 10, 2012

Oh yah! Walgreens finally sent us Oliver's MIC-KEY button.

Oh no! It is the wrong size! It's even smaller than his current temporary tube, he would leak even more!!!

When will we get this right?

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Saturday, September 8, 2012

Vermont or Bust!

Oliver took 2 meals through his new button and it still leaked, but not as much. He's had three different tubes pulled out and pushed into his body over the course of 3 days, so understandably the skin around the site has had a lot of trauma and is stretched a bit. Can I brag that our tough little guy didn't even shed a tear? He is more than a trooper! Just watching it almost made me cry! The tract will heal and close up tighter around the tube over time, resulting in less leaking. Let's hope it happens quickly because carrying him to the car just now resulted in semi digested formula leaking out all over Mommy. I won't lie, it is pretty gross. Not dangerous, but gross.
My cousin Tamara(my maid of honor) and her fiancé Neil are getting married today! We missed the rehearsal dinner/party yesterday and we were sooooooo bummed. So we are gung ho to get there today! We were just released from the hospital and we're cruising back to New Milford, showering, changing, hopping back in the car and making the 3 hour drive to Vermont. We are determined to make it, the wedding is at 5, wish us luck! I am bringing a spare dress in the likely event of a tube leaking incident. Good thing I bought a second one at TJMaxx on Thursday. Every smart girl should have a back up dress. ;)
A big thank you to Vicki for my gorgeous hair cut and highlights and her daughter Amy who painted my nails just because she's a super sweet person! I was the prettiest Mommy in the ER last night. Hehe

Vermont or bust Mommy!

Friday, September 7, 2012

Sleepover in Hartford

After the leaking wouldn't stop, they placed the mic-key button to replace the temp tube from last night. They're admitting us for observation tonight. We should be able to leave early tomorrow as long as all goes well.

Back to the ER

Heading back to the ER, the area around Oliver's tube is leaking way too much, meds are coming back out, formula, stomach contents. Everything. His nurse went to put down to nap and 10 minutes later he was awake and he and his bed were soaking wet.

So we grabbed our bags that we hadn't even unpacked from yesterday and we're going back to CCMC.

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A long day...

Yesterday, after the Botox went so well, we had another issue to deal with. Oliver's tube looked very red and irritated. We know that this type of thing happens with gtubes but the site had looked great just three days earlier. What made us more worried was that the port seemed to have come away from his body and we could see part of the tube under the port. We could also feel a hard disc directly under the site. The last two changes had happened overnight. We knew something had changed. Ollie was also less comfortable than usual and his tube site was very sensitive. All these concerns added up to make us quite nervous.

So we called the on-call surgeon at CCMC and he told us it could either be an infection or that the tube had "migrated into the tract."

Since it was after 5 and all the regular staff had left for the day, so he told us to come to the ER.

The doctor's first impression was that the tube had moved and it would have to be replaced. There was a chance they could do this in radiology but they may have to take him into surgery. This would mean another IV and anesthesia.

Before deciding on a course of action, the radiologist put Oliver under the X-ray machine and put contrast through his tube to ensure it was still reaching his stomach. It was, but the anchor that held the tube in place had slipped into the tract between his stomach and his skin. Within a few minutes the radiologist had decided to remove the old tube and replace it. He pulled the old tube right out and placed the new one within minutes.

Oliver was so brave. He was surrounded by strangers who velcroed him to a backboard and were flipping him all around. The only time he was really upset was when they actually touched the tube. The nurse commented several times how cooperative he was being and how smoothly the whole thing went.

Once the new tube was placed we went back to our room for about 20 minutes waiting to be discharged. We gave him his meds in the car as we prepared to leave and he was fast asleep about ten minutes into the trip home. We got home around 12:30 and he alseep until 6:30, had his meds, and then back asleep again until 9:15. We're hoping for a good day today.

- Posted using BlogPress from my iPhone

Thursday, September 6, 2012

Botox Done

After one of the best night's sleep in recent memory (he slept until 5:45!), we headed to Danbury for his Botox treatment. Here are some pics from this morning.

Waiting patiently for the doc.

Playing with daddy while I wait. Wheeeerrrre's Ollie...there he is!

Band aides on Ollie's boo boos. He only cried for a few minutes while the shots were being administered.

Resting at home with Dad. It's been a busy morning!

Now we have to wait. The doctor said we may see some effects within 48 hours but the shots won't take full effect for up to 6 weeks. We're hoping for sooner rather than later.

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