Tuesday, October 30, 2012

In Georgia there lives a little boy, only a month younger than Ollie, who is suffering from the same devastating disease. His parents also keep a blog and every time I read it, it's like looking into a mirror of our own lives. I see another young family, losing their first and only child. I see them going through the same day-to-day grief and pain that we are. Through the MLD Foundation we are in touch with many families who have loved ones suffering from MLD, many with the juvenile or adult form, some with the late infantile form. This little boy is one of the only other 2 year olds we know in the world with MLD. I'm sure there are others, but we don't know of them.

They posted this article on their blog and I'm borrowing it, it was written by a woman named Emily Rapp whose son suffers from Tay Sachs, a disease that has some similarities to MLD. Her words ring so true for all parents of a child with a terminal illness.

Notes from a Dragon Mom

My son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.

I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state. He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.

How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?

Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.

Parenting advice is, by its nature, future-directed. I know. I read all the parenting magazines. During my pregnancy, I devoured every parenting guide I could find. My husband and I thought about a lot of questions they raised: will breast-feeding enhance his brain function? Will music class improve his cognitive skills? Will the right preschool help him get into the right college? I made lists. I planned and plotted and hoped. Future, future, future.

We never thought about how we might parent a child for whom there is no future. The prenatal test I took for Tay-Sachs was negative; our genetic counselor didn’t think I needed the test, since I’m not Jewish and Tay-Sachs is thought to be a greater risk among Ashkenazi Jews. Being somewhat obsessive about such matters, I had it done anyway, twice. Both times the results were negative.

Our parenting plans, our lists, the advice I read before Ronan’s birth make little sense now. No matter what we do for Ronan — choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training — he will die. All the decisions that once mattered so much, don’t.

All parents want their children to prosper, to matter. We enroll our children in music class or take them to Mommy and Me swim class because we hope they will manifest some fabulous talent that will set them — and therefore us, the proud parents — apart. Traditional parenting naturally presumes a future where the child outlives the parent and ideally becomes successful, perhaps even achieves something spectacular. Amy Chua’s “Battle Hymn of the Tiger Mother” is only the latest handbook for parents hoping to guide their children along this path. It’s animated by the idea that good, careful investments in your children will pay off in the form of happy endings, rich futures.

But I have abandoned the future, and with it any visions of Ronan’s scoring a perfect SAT or sprinting across a stage with a Harvard diploma in his hand. We’re not waiting for Ronan to make us proud. We don’t expect future returns on our investment. We’ve chucked the graphs of developmental milestones and we avoid parenting magazines at the pediatrician’s office. Ronan has given us a terrible freedom from expectations, a magical world where there are no goals, no prizes to win, no outcomes to monitor, discuss, compare.

But the day-to-day is often peaceful, even blissful. This was my day with my son: cuddling, feedings, naps. He can watch television if he wants to; he can have pudding and cheesecake for every meal. We are a very permissive household. We do our best for our kid, feed him fresh food, brush his teeth, make sure he’s clean and warm and well rested and … healthy? Well, no. The only task here is to love, and we tell him we love him, not caring that he doesn’t understand the words. We encourage him to do what he can, though unlike us he is without ego or ambition.

Ronan won’t prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say “Mama,” and I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.

NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high. Conversations about which seizure medication is most effective or how to feed children who have trouble swallowing are tantamount to breathing fire at a dinner party or on the playground. Like Dr. Spock suddenly possessed by Al Gore, we offer inconvenient truths and foretell disaster.

And there’s this: parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever.

I would walk through a tunnel of fire if it would save my son. I would take my chances on a stripped battlefield with a sling and a rock à la David and Goliath if it would make a difference. But it won’t. I can roar all I want about the unfairness of this ridiculous disease, but the facts remain. What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go.

But today Ronan is alive and his breath smells like sweet rice. I can see my reflection in his greenish-gold eyes. I am a reflection of him and not the other way around, and this is, I believe, as it should be. This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is.

Emily Rapp is the author of “Poster Child: A Memoir,” and a professor of creative writing at the Santa Fe University of Art and Design.

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Monday, October 29, 2012

Oliver used to wake up singing.

Really. He'd open his eyes, glance around his crib for a second and start to sing to himself. Lalala deedee deeeeee yaaaayaaa lalalala. He would sing for 5 minutes or more, his own made up songs, waiting patiently for Daddy to get him out of his crib. We'd listen to him through the monitor and just laugh and smile! It was so precious! When he was finished singing he'd call our names or play quietly with his toys.

Morning routine was Daddy's thing. He had to be out of the house earlier to get to school and wanted to make sure he got some quality Ollie Time before he had to go.

"Dada!" Oliver would squeal when Chris opened his bedroom door. "Dada up peez!" Chris would pick out his outfit while singing his "Good morning Ollie" song he had also made up. Like father, like son. Always singing. He'd turn on the Rainforest crib piano while changing his diaper and getting him dressed and they'd play "Name that animal" or "What color is that animal?" or "What sound does that animal make?" Every day. Cute outfits, games, songs and smiles. I'd be getting his breakfast ready and would listen to their sweet banter and think how lucky Ollie was to have such an awesome, loving Dad. Mornings were beautiful and everyday they'd warm my heart.

Weekend mornings were even better. One of us would pick Ollie up from his crib and still in his jammies bring him back to our bed and use him as the cutest alarm clock ever. Isn't it wonderful to hear your toddler's voice say "Up up up Mama! Love yuuuu" and blow you kisses as a way to wake up? How could you not wake up happy? Even at 6am!

Wake ups are not fun anymore. Not at all. I hate them. From love to hate, a complete 180. They are not beautiful, they are not precious and they are not heartwarming. Wake ups are scary and painful. Wake ups include seizures, muscle spasms and screaming. Every day.

Peaceful wake ups are just one more thing MLD has stolen from us. And it's one I haven't been able to adjust to. I still expect to hear him and Chris talking through the baby monitor. I still expect to wake up on Saturdays to a happy little face two inches from mine.

I feel so sorry for Oliver having to start his days in such a terrible way, it's so unfair. How is he perceiving all this? This world is cruel to him, this world where he can no longer move or talk. Is he waking up fearing the pain he will feel each day? Does he miss being able to do all the things he used to do? Does he miss when he used to wake up happy and singing?

We do.

Sunday, October 28, 2012

Fun visitors

Uncle Brian and Uncle Billy visited on Friday night. :)

And Auntie Jess came to visit Saturday dressed as Minnie Mouse! Oliver had a huge smile on his face.

Now Ollie is resting up for some football Sunday and Uncle Steve is coming over!

We are also preparing for Hurricane Sandy. If we lose power the pump company tells us his feeding pump will last 4 days before needing to be charged. So we should be all set with that.

look at this boy, he's doing some serious sleep preparation

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Deadline extended! You can buy tickets throughout this week

Hope to see you there!

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Wednesday, October 24, 2012

A science lesson and medicines to keep Oliver comfortable

His breathing is completely back to normal yesterday and today! We are so happy! Just another crazy MLD symptom apparently. This would be a great time to have a team of doctors who understood the disease, or a book to read on the topic, or a website that tells us more than just the definition of metachromatic leukodystrophy. There is no information out there, the disease is so rare and every case is so different. It's frustrating, lonely and very scary. We never know when or what to expect. We've asked his doctors. They don't have any answers.

We do know that his brain sends his body all kinds of crazy messages as the myelin sheath continues to deteriorate. The myelin sheath insulates nerve cells as they send electric signals throughout the brain and to other parts of the body. Think of the myelin as the insulation around an electrical wire, without it the wires get very hot, break down, short circuit and stop working. This is what happens with Ollie. His brain send signals, or tries to send signals to different muscles and systems in his body, but as the nerve cells get damaged without the protective myelin, the signals misfire, repeat themselves, or never make it to their destination. All of this causes painful muscles spasms, seizures, paralysis and the inability to coordinate his muscles to do meaningful actions, such as walk, talk, eat and apparently can cause strange breathing patterns.

To keep Oliver comfortable he is now on 7 medications.

Baclofen for muscle spasms and stiffness
Keppra for seizures
Neurotin for nerve pain through out his body
Ranitidine for acid reflux
Diazepam for seizures, muscle spasms, anxiety and as a rescue drug
Ibuprofen for pain
Morphine for intense pain and to regulate breathing
(And he gets Botox injections for muscle stiffness every 3 -4 months)
He also gets miralax and a multivitamin 1x a day

Most of these meds are 3x/day, some are 2x/day, and some are every 6 hours (so 4x/day), so we have to set an alarm and get up in the middle of the night to administer them. Some have the same dose throughout the day, while others have different doses for morning, noon and night. Sometimes he gets additional diazepam or morphine based on his need. It can all get confusing and overwhelming, but we've worked out a system. At all times we have an emergency medicine tray on the table. It has his seizure and pain medicines measured out in their syringes and ready to go. That way, in the event of a seizure or screaming pain we don't have to do it under stress and pressure, trying with shaky hands to hold a tiny glass bottle and carefully measure out 1.25ml, 5ml, or was it .5ml?!? We also set up his morning medicines the night before and put them in the fridge. After we administer the morning meds, we set up the lunch meds, after the lunch meds we set up the dinner meds. The trays are always ready and waiting so no medicines are late. Timing is important for keeping seizures at bay and pain away. Diazepam at 5 and 11am and 5 and 11pm. Raditidine at 7:30am and 7:30pm. Keppra 3ml breakfast, 4ml lunch, 3ml dinner. Or was it 4,3,4?

It can make your mind spin.

A typical dinner medicine tray looks like this...

In some ways it is easier to give him his medicines nowadays since everything is through the gtube, but in early August when he could still swallow he was only on 3 medications. 2 months later and he's now at 7 and the doses are constantly being adjusted. Crazy!

I think I'm going to take a nap, even writing this made me tired.

Tuesday, October 23, 2012

No time will ever be the right time

Last night was very scary.

Around 6pm we went for a fall walk around the neighborhood. Ollie was enjoying the colorful leaves falling down on him in his wagon. There were lots of dogs to see and fun Halloween decorations, Daddy made Ollie's wagon do crazy donuts in the cul de sac. We had a lot of smiles.

We got back to the house and we were resting in his brown recliner when out of nowhere Oliver had a major change in his breathing pattern. He started breathing very quickly, more than 30 breaths a minute, it sounded like he was running up a hill.

We called our hospice nurse who instructed us to give him some morphine to calm the breathing(which is what we were about to do) and call back in 20 minutes. His breathing didn't improve, but it was all very strange, everything else about him seemed pretty normal. His coloring was good, his lips were nice and pink, his fingers and toes had good capillary refill, nothing suggested his oxygen level was low or could explain why he was breathing so quickly. He wasn't gasping for air, he was taking deep breathes, just very very quickly. We were even able to get him to laugh and smile. Nothing was adding up. We couldn't get his breathing to slow down.

We called back the hospice nurse and held the phone up to Oliver so she could hear what we were hearing and she became very concerned. Go Google "change in breathing pattern" and you'll see why. In her line of work, sudden changes in breathing pattern usually mean death is approaching in a matter of hours or days. She had just been at the house 2 hours earlier and had given his lungs a double thumbs up. Perfectly clear, no more pneumonia. So all of this happened very suddenly. At her visit we had told her that he had been sleepy most of the day, so between that and his breathing she was very worried. She told us we really had two choices, we could 1) stay home and and rock him to sleep as usual using the morphine for relief or 2) we could go to the ER. She said that she couldn't be 100% sure, but she was very concerned about the breathing and that could mean things were "progressing". I think that was her way of saying she thought he might be dying.

We asked if we could call her back.

Chris and I talked and we decided to keep him home. It was the best decision for Oliver. What could the hospital do for him that we were willing for them to do? We don't want a ventilator keeping him alive and our number one priority is Oliver's comfort. There is nothing else at the hospital that could make Oliver more comfortable that we don't have at home.

We have the same "comfort meds" as the hospital, we have his familiar and comfortable surroundings, we have Pippa, Elmo, Mickey Mouse, Curious George Jack in the Box. He has his own bed, his warm blankets, and our hugs and kisses. The hospital has needles and pokes, doctors that know almost nothing about his disease and run test after test, machines that spit out worrisome numbers and loud noises and bright lights that prevent sleep.

We wanted him home, I think we will always want to have him at home.

We called her back and told her our choice, she supports us 100%, no matter what we decide. She knows we're making our decisions based on what we feel is best for Oliver. She has a heart of gold and truly cares about all three of us. She told us to call her anytime, day or night, and call her the next morning.

We ran Oliver a warm bath, read books, cuddled and tried to enjoy ourselves, tried to ignore the rapid breathing, tried to ignore the fact that our nurse thought he could be dying. Deep inside myself, my heart told me that he was okay, that this episode would pass, that this wasn't his time to go. I told myself the breathing must just be another strange MLD thing.

But you know, I wonder if I'll always feel like that, if I'll always feel like "No way, it's not his time. He's too young."

I'm his Mommy, will I ever look at him and think anything different? How will I ever look at him and actually think it's his time to die? My toddler, my baby boy. No Mother or Father should ever have to look at their child and have those thoughts. I wonder when his time comes will I still deny it.

We took the two twin mattresses from the guestroom/office and laid them down on the floor in his room. There was no way we could sleep across the house from him, we needed to be right there with him.

We rocked him to sleep and his breathing slowed a good deal. Finally. We laid him down in his bed (which is at a slight incline) and we went to bed right next to him on the mattresses on his floor. All night we listened to him breathe, in and out, in and out. I was in a strange half awake/half asleep state, hyper vigilant, dreading the sound of silence. Silence that would scream volumes. Silence that would mean we had lost our child. But we didn't lose him, we listened to his sweet snoring all night. It was a beautiful sound.

Today he is breathing pretty normally.

We know we will lose Oliver, months, years, we don't know. We will have to say goodbye to his sweet little smile, his baby blue eyes and kiss his chubby cheeks for the last time. I'm glad it wasn't last night, but if it had been, it would have been a peaceful passing. He wasn't in pain, he was happy and comfortable. More than anything that's what I hold hope for now. It's all we've got and all we can give him. Comfort, love and peace.

Saturday, October 20, 2012

Pumpkins in the Park!

Oliver has been feeling much better over the past few days. He's still a little sleepy and he tends to take naps throughout the day but his fever is gone. His breathing is much better as well. Thank you to everyone who sent him healing thoughts and prayers.

Tonight, while Mommy was at the wedding of a dear college friend, Uncle Greg, Aunt Jess, Uncle Steve, Ollie and I went to Pumpkins in the Park at Harrybrooke Park. We've wanted to go for the past few years but have always had a conflict. This year Ollie threw on his raccoon costume and we headed off into the night.

A super scary haunted tree.

The JPS pumpkin. Yea Mommy's school!

Ahhhhh! Beetlejuice! He sounded just like the real thing.

This is more like it. Less scary.

Jack the Pumpkin king! Mommy and Daddy have been walking around singing "This is Halloween" all month long.

Ollie had so much fun and now he's pumped for Halloween!
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Wednesday, October 17, 2012

Oliver's lungs sound almost clear. Yah!

Here he is, as cute as can be in his new hat. :)

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Tuesday, October 16, 2012

His fever is holding steady at 99.8 (which is a fever for him because his baseline is 96.8). He's a little groggy and run down but he's comfortable and doesn't seem to be in any pain. We slowed down his feeding a lot this morning and kept pausing it throughout so that his stomach could handle it better, and we had no vomiting, which is good.

Denise just took him for a wagon ride to get some fresh air. He's bundled up like an Eskimo. (Or Inuit if that's the proper word) His breathing isn't too gurgly, but she can hear wheezing in his lungs, and "crackles" especially in his left lung. The hospice nurse says we should notice improvement by Wednesday morning after 3 doses of the antibiotic.

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Monday, October 15, 2012

His fever is down which is good, the motrin is keeping it under control. But he threw up his evening formula all over the living room. It was very scary. I was holding him in the brown chair and he started struggling to breathe, his eyes got wide and he was opening his mouth but no air was going in or out, it sounded all gurgly, like someone under water. I almost panicked, but I sat him straight up and a good deal of his formula came up and out. He continued to gurgle, because he can't swallow, some formula must have been stuck in his throat. We quickly repositioned him onto his side and leaned him forward and the rest came up. He whimpered for a few minutes, he's a little pale but he started to look better and his breathing mellowed. We even got a few smiles from Mommy making silly duck noises. I think I'll sleep next to his bed tonight.

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Oliver has aspiration pneumonia. We think we caught it early and are treating it quickly and aggressively with strong antibiotics. Please send healing vibes and pray that it responds to the treatment.

Friday, October 12, 2012

Finally..Apple Picking!

We braved the wind, cold, and some rain to finally go apple picking this morning. Ollie was all bundled up and really liked the bumpy wagon ride.

Three layers of blankets and I'm ready for apples.

Mickey helped me with some of the tough to reach ones.

Rachael helped with the ones that even Mickey couldn't reach.

Posing with our bag of apples. Look at the size of that pumpkin!

Heading home for some warm apple cider, lunch, and a nap.

When we got home Kate put a few drops of apple cider on Ollie's tongue and he gave the biggest smile. He loves Ollie-tober!
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Thursday, October 11, 2012

And no seizures today either! :)

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"Brrrrrrr my wagon rides are fun but chilly!"

Tomorrow we are going apple picking (if there are any left!) Ollie can enjoy warm apple cider through his Gtube. Really, we can do that. :)

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Wednesday, October 10, 2012

Good day

Today was a good day, Ollie was really comfortable and had NO seizures! Yah! His seizure medicine dose was only increased yesterday and we hope it keeps working so well. It was gross and rainy all day so he just hung out, watched cartoons, listened to Denise read him books, watched Daddy repaint cabinets and Mommy use a power sander! He thought that last one was especially funny.

Nana sent Oliver an Ollie-tober present last week, it's a turtle that glows and illuminates stars onto the ceiling and walls! It does 3 different colors and Oliver loves it! He spent some time enjoying that today. Thanks Nana!

His day ended with a nice bath and massage and now he's sleeping with his turtle lighting up his room. :)

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Monday, October 8, 2012

Lots of fun visitors this weekend

I wish I had taken more pictures, but once again, it slipped my mind. I did get a few though. On Saturday my parents and grandparents came to visit. So Ollie's Nana and Papa and Grammy and Poppy. It was a beautiful fall day and Nana brought chicken parm. I've been on such a kick for that recently. The girls got to go shopping for a little while and the men hung out and enjoyed themselves. Uncle Steven came over in the afternoon too. We had lots of laughs and smiles which was a really nice. Oliver was in a good mood and napped quite well.(which he hasn't been recently). He was a cuddle bug and Nana and Grammy held him until they almost missed their return ferry home to Long Island!

On Sunday Auntie Jess, Uncle Greg and Uncle Steve came over (Oliver got to see him 3x in 4 days! We love that he lives only 15 minutes away. Love you hermano!) Steven brought chicken tenders covered in honey BBQ sauce from Pippa's (tied for my favorite with chicken parm, goodness I've been eating well. Maybe a little too well say my jeans...) So anyway, we had a lovely day of football, more smiles and laughs. It was a great weekend, even though my fantasy football is the WORST it has ever been, ever. I'm super competitive, and have gotten 1st and 2nd in the league, respectively the past two years. I hate seeing my team so terrible. Darn you Chris Johnson.

And here are some photos...

Grammy and Poppy making Ollie smile

Auntie Jess and Greg cuddle Ollie and BoBear. Poor Greg was so tired, thanks for coming over guys!

Oh and Mimi came over Thursday too! We've had a busy week! Here is Ollie and Mimi.

Sunday, October 7, 2012


Was that 8? 9? I'm not sure, we lost count. Up at 4am with Oliver having seizure after seizure after seizure.

His body tenses up, he looks up at us, eyes filled with terror, he knows one is coming, he can feel them coming. It's about to take over his little body, and he's scared. We hold him as his head and back arch backwards and his limbs spasm, as he screams the unearthly howl of a seizure scream. Tears stream down my face as he collapses in my arms. Finally it is over. It wasn't long, perhaps ten, twenty seconds, but it feels like an eternity. He takes gasping breaths, desperate for air. His eyes plead with me "Please no more. Please Mommy make them stop" We hold him, hug him, kiss him, soothe him. We've already given him a dose of diazepam but it was fifteen minutes ago and the seizures are still coming. 5. 6. Chris runs to get another dose in the kitchen. We've got to stop the cycle before they get worse or longer. Chris is gone less than a minute while 7 and 8 attack our baby. Arching, screaming, gasping, tears. We are awake, but this is a nightmare. We give the second dose, two more shorter ones hit before they are finally over. At least for now.

Saturday, October 6, 2012

We're very tired! I had a hard time falling asleep and then Ollie had two seizures at 3am. Chris rocked him back to sleep but Ollie kept making snuffly noises throughout the night and we were on such high alert that every sound woke us up. Then the boy thought it would be a good idea to wake up at 6:30! I keep yawning and it's only 9am! Ughhhh. Chris is making pumpkin lattes, I think I'll need a few today.

Friday, October 5, 2012

Bethel Schools and Community, we are almost speechless. Thank you.

Thank you so very much for everything you have done. We cannot wait to share pictures of the amazing night you blessed us with yesterday, and thank you also to the beautiful families and teachers at Johnson School who raised so much money for Oliver through their Family Fun Night. You have filled our hearts to the brim. It is difficult to put into words how incredibly loved you made us feel last night and how immensely grateful we are for all of your support, it has brought us to tears. For months we've felt isolated, suffering in silence as we lose our son to a disease no one has even heard of, but last night you reminded us that we are not alone, not at all. We are humbled to be surrounded by such incredible, caring families.

If you have any pictures of the track meet or from the dinner last night, please email them to me at katecipa@gmail.com. Between the sheer number of people in attendance, the countless hugs and warm smiles, the raffle baskets, everything, it took my breath away and I didn't take a single picture. Especially if you took any photos of those FANTASTIC raffle baskets. They were beyond anything I could have dreamed of! So if you have photos please send them my way and I can post them for the world to see. The world should know how amazing you are. Wow, we are still just in awe of everything.

Here is a link to the Bethel Public Schools Newsletter and Superintendent's News where he discusses how the community has really pulled together to support Oliver and our family. We are forever grateful.
Bethel Newsletter
And here are a few pictures that Chris' sister took:

Ollie will be there! Hope to see you there too! Thank you John Pettibone Friends for organizing!

Wednesday, October 3, 2012

I decided to clean Oliver's room and closet as it seemed to be exploding with toys, books and clothes and I like to try and keep things neat and organized. When things are organized I feel like my thoughts are more organized. I'm a type A person, a messy room keeps me from thinking straight.

It was way more painful than I thought it would be.

Everywhere I looked I saw things that reminded me of how things used to be. Puzzles he used to do, trains he used to say "choo choo" for, books he used to "read", crayons sitting unused and coloring books never opened. Even putting away clothes brought back memories, pajamas he wore last Christmas Eve, the outfit he wore for his second birthday party. Memory after memory of easier and happier times. Reminder after reminder of what we have lost.

I felt so many emotions I couldn't keep track. Sadness mostly, but also a lot of anger. This awful disease is stealing our son. Our perfect baby boy. I bitterly threw a porcelain piggy bank into the trash. Oliver will never get the opportunity to save his quarters to buy icecream from the icecream man.

By far the thing that made me the saddest was when I came across this pooh bear...

This Pooh Bear was one of the very first things I purchased when I found out I was pregnant. We didn't find out that Oliver was a boy until he was born, we wanted to keep it a surprise, so we decorated the nursery in the "Classic Pooh" style. We painted grass, sky and clouds. Chris painted Pooh Bear's tree in the corner. We put love into every brush stroke, into every ironed curtain and dust ruffle. Like all moms to be, I folded and refolded adorable newborn onesies and teeny tiny outfits. I stacked up diapers and wipes, folded blankets and burp cloths and made sure everything was just right. When the nursery was finally finished it was like walking into the 100 Acre Wood. Now all it needed was the baby. I would sit in the glider and daydream of the blissful times to come.

We had two years of blissful times, singing, playing, reading books together and rocking to sleep. I can remember each book we read and how he'd point out the same things each time. He could find Goldbug in Cars and Trucks and Things that Go faster than any adult. He loved the book "Are you my mother?" and would giggle every time the little bird asked the wrong animal. He loved Llama Llama Red Pajama and would point at the baby Llama and say "No no no, brubble!(trouble)" when the llama was being reprimanded by its mother. I'll remember every castle we built out of blocks, every trip on his ride-on dinosaur, every car and truck he crashed into the wall and him signing "More elephant book mama" to me at 3am one night. (he did baby sign language before he could talk)They were the two happiest years of our lives and I am very grateful to have had them.

If life was fair we would create decades more memories to keep in our hearts.

But life isn't fair.

Tuesday, October 2, 2012

I wish I had a good update but I don't really. Ollie continues to have seizures and today he was very uncomfortable. We rocked him all day long, in fact I'm rocking him to sleep as I type this on my Iphone.
Our days are very busy and sometimes it's a good thing and sometimes it really stresses me out.

We get all kinds of visitors, friends, family, our nurse Denise who is here M-F, Oliver's birth to 3 PT, our hospice nurse Chris, the hospice social worker, doctors among others. Today we even had an aromatherapist/massage therapist come and work with Ollie. She used various oils on his feet and neck and gave him a gentle massage and he was calm and asleep in 5 minutes. It was pretty impressive. Her kit was pretty cool, I took a picture of it...

We will do everything and anything to help keep our little boy comfortable. He's been fighting and upper respiratory infection for over a week now and his inability to cough or swallow is making this very uncomfortable for him. We hear the congestion getting stuck in the back of his throat and there isn't much we can do for him. We use saline gel to make him sneeze it out, we use that gross boogie sucker (bulb suctioner) thing but only helps so much when he's really congested. We also have a suction machine, but deep suctioning into the throat is a slippery slope, we don't want his body to create more secretions. Oliver having a cold can be a very dangerous thing, especially since he can't swallow. He can aspirate and an upper respiratory infection can turn into pneumonia in a matter of hours. We have to be very careful.

Monday, October 1, 2012

Bad morning

Seizure. Gave Diazepam. Seizure. Gave Diazepam and morphine. Screaming, arching his entire body backwards in pain.  Hyperventilating. Rocking, soothing and walking around holding him. Starting to calm down.

So hard to see him in such agony.