Holy moly. He’s been so healthy for so long and so normal that it was easy to forget he was ever sick. But he was. And every time he gets a cough or a stomach ache my anxiety goes through the roof and I realize that I’m actually always living in a heightened state just waiting for something awful to happen. But it hasn’t. Stomach flus have just been stomach flus and coughs have just been coughs. But today his stomach ache didn’t seem right. He wasn’t going to the bathroom. No medicine was helping. He was writhing in pain. So on the advice of some very clever doctor friends we came back to Sick Kids. I expected to get told I was overreacting. I wanted to get told I was and reminded that he’s fine now. But they took it seriously, ran their tests, and found a bowel obstruction. A common and expected complication after any abdominal surgery, but especially after one as extensive as his, said the doctor. Oof. Reality.
Thank God it seems to have worked itself out and he doesn’t seem to need any interventions. But we got admitted and right now he’s sleeping in the same room he spent some of his earliest days in. I walked in and it felt like being punched in the gut. The PTSD is real, my friends. I went and stood in the same spot Poppy first saw her brother in. Where we took our first photo as a family of four. Where he threw up so many bottles and I worried he’d never eat on his own. And I cried. Because he’s fine now. Except sometimes he could not be. I was really working on forgetting that, forgetting that whole terrifying experience. But here we are, so I guess it’s true. My sweet little five year old Oliver and that sweet fragile little baby really are the same boy.
I’m so glad he’s going to be ok. I’m so glad he doesn’t have to get cut open again. I’m so so glad he thinks this is the most fun ever. He’s had unlimited screen time, mom to himself all day, a bed that moves up and down and TWO jellos for dinner. Seriously, what more could a little guy ask for? Oh I know, how about constant potty talk? Because we’re all waiting for him to poop.
Hi! Sorry we’ve been so m.i.a. this winter. I don’t think there’ve been four consecutive days where all members of the Wesson house have been healthy since November and it’s been a pretty draining winter. I know I’m not the only one who’s finding it hard to find the energy for anything but the survival basics.
Oliver is great. He’s the cutest, sweetest, busiest little boy. He’s smart and sweet and funny and fun. He loves to make people smile and is really in to telling everyone what all the animals are called… when he’s not suffering from the mommy-itis. He’s got a pretty serious case of that 😉
He still loves nothing more than to twirl his hair when he’s sleepy even after his first haircut and his favourite person in the world is Sister. She feels the same way about Baby Brother. He loved Christmas, New year’s, the ice storm and daddy being home for the holidays.
Oliver went to England for the first time in November. It was so nice for him to meet my whole family and we had such a great time in spite of the sad circumstances (my grandad went to be with my grandma). I wish we’d gone sooner but it was wonderful watching my confident little girl explain England to him with her wealth of experience and he took to his British family the same way all of us Canadian transplants have… like there never was an ocean between us.
RSV went through Poppy’s preschool and I lived in terror but was comforted when we brought him to CDH clinic and Dr Chiu told me that it looks like a cold, he’s had it and he’s survived it. She said its a great sign and it has taken a little bit of the fear away. We’re still doing our best to avoid it but knowing his little lung (and the little nub that could… it’s maybe growing!) is strong enough to kick both CDH and RSV butt and that’s really reassuring.
He rocked his 18 month developmental clinic, solving problems, walking up stairs and basically just proving what we already suspected. He’s above average 😉 Ping, his wonderful nurse practitioner, came to see us. I emailed her last night because he’s been throwing up since Sunday. His CDH team is trying to wean him off one of his reflux meds, and it seems like he’s just not ready for it yet. We’re going to try again later but for now he’s going to go back to his regular doses. I was so scared last night, on the phone with Dr Erin who was kind enough to call from Calgary to help ease my mind that he wasn’t reherniating, didn’t have a bowel obstruction, didn’t have meningitis, wasn’t having migraine induced vomiting…. The internet is a scary place for an anxious mom at one in the morning. So on the bright side it is nice that we got to see Ping in person and she could look at him and reassure me that his breathing was normal. While hooked up to a monitor. I think I might actually sleep tonight. If I can get past the guilt.
So, that’s the Ollie update. He’s great. He loves his grandparents and trucks and chocolate and is a really normal, ridiculously awesome little boy who I am in awe of every single day. I love this little snuggle monkey and I’m so thankful that you do too.
Xo
We were so honoured this month to be asked to speak at the annual Respiratory Therapists awards ceremony. I’m not much of a public speaker and wasn’t sure I’d be able to make it on time because I had a work commitment in the morning, so I put together a 9 minute video instead. I cry when I do public speaking and I’m a huge believer in the power of images so a video felt like a better choice anyway.
You can watch it here
We also had an amazing halloween. Poppy was a bug and Oliver dressed up as a duck (without a beak because he refused to wear the hat) and by the end of trick or treating (with nurse Steph from his time in the surgical wards!) he was an old pro, helping himself to multiple candy bars and putting them in his bucket with glee. SO freakin adorable.
He’s still working on walking, he’s 100% capable and sometimes he’ll just walk across a room but most of the time he prefers to crawl, probably because he’s so darn fast at it.
He caught a cold last month (Poppy’s in preschool afterall!) and is still trying to recover from the cough, but with just one lung it takes him a bit longer than other kids. It’s not keeping him up at night anymore so we’re happy with that.
Hope everyone is doing great!
Oliver is doing great and thriving. He’s not going to daycare so I’m happy that I can take another year off without losing my job. He is a super speedy crawler, and is slowly working on learning to walk. He is a chatty little guy, he adorably says “uh oh” while throwing food on the floor for the dog. Other words include mama, dada, dog, cat, duck, quack and look. He really couldn’t be cuter if he tried. Big sister Poppy started preschool yesterday, three half days a week, which she lives and gives Ollie and I some quality bonding time. We miss Tim, we had such a great summer with him at home, but now we have to share him with other kids who need him too. September 10 will bee one year of Oliver living at home with his family and we’re really excited to celebrate the last “one year” mile stone 🙂
here’s a video of Oliver finding a cat in his book.
Xoxo
A year ago Dr. Cox decided Oliver was stable enough to have surgery. A year ago today Dr. Himidan wheeled him off to the operating room, but not before promising me that she would do the surgery exactly the way uncle Dave had taught her. A year ago today Oliver became whole. She put her hands inside his 18 day old body and put everything in the right place, giving him the best possible gift, a chance at life. Thank you sick kids for giving us Oliver.
A year ago today Oliver’s cousin Eliza was born (happy birthday beautiful girl!) A year ago today Oliver finally began his journey to wellness. A year ago today the world became such a better place. July 20th will always be one of my favorite days.
Thank you to everyone who donated for Oliver’s birthday, together we raised nearly $5,000 for CDH research!
Oliver is going to be a year old on Tuesday. Excuse my language but holy shit. He was going to die. He couldn’t breathe on his own. His organs were all wrong. He was the king of pulmonary hypertensive crises. He had to go back on the oscillator and was never going to make it to surgery. Now he is going to be one. A happy, healthy, freakin adorable one year old boy. I’m crying as I type this. I can’t believe a miracle happened to me. I can’t believe how awesome my miracle was. I can’t believe how lucky our family is. Because Oliver is not just alive. He’s full of life!
He couldn’t be sweeter or snugglier or happier or more fun to be around. He claps, he crawls, he plays peek a boo. He laughs so hard and is obsessed with Poppy and our dog Forrest. He is absolutely undiscerning about food and will eat anything, even stuff you and I wouldn’t call food. Like pinecones and sand. He pulls himself up to stand and then plods down on his cute little tushy when he’s had enough. He bangs his head at least once a day because he’s so busy exploring. He is completely normal and totally charming.
He’s done so well this year in terms of his health. His doctors were really pleased that despite having gotten quite sick he didn’t need to be hospitalized and he didn’t lose any weight. His left nub looked like it’d stopped growing but now it looks like maybe it is. He had me all worried at his neonatal follow up clinic because he scored quite low on his gross motor but he’s since caught up and his communication score was very high. So mama can chill a bit. And most excitingly because his lungs have proven themself so resilient he’s now allowed out in public. We celebrated with a trip on the bus and subway which were enormous hits with both Ollie and Pops! In short, life ifs amazing. He’s had a lingering cough which could be post viral, allergies, reflux, or asthma. There’s no real way to tell yet so we’ll look in to it more at his 18 month follow up. He’s a miracle. And we are so incredibly grateful to have been so blessed.
In honor of his birthday we are trying to raise money for our beloved Dr Coxs CDH research project. Both as a thank you for saving our Ollie and to help prevent other families from having to go through what we did. If you’ve ever thought you’d like to make a gesture of gratitude to sick kids we would love if you’d consider joining us. This is the link to our fundraising page: http://my.sickkidsdonations.com/PersonalPage.aspx?registrationID=1930271&LangPref=en-CA#.UcnhVIokJ4s.facebook
We were blown away by how wonderful the rally at the CN Tower was! It was a cold, horrible night, yet so many people came our to show support and raise awareness. It was truly awe inspiring. From friends we see all the time to friends we haven’t seen in years, from our parents to friends friends, to friends of friends parents, from Sick Kids staff (hello you amazing people!) to former sick kids and their families, we got to spend a very cold hour with some of the very best people on the planet! The kids had a blast playing, the grown ups enjoyed delicious cupcakes, and everyone did their best to stay warm in CDH tshirts Oliver’s amazing Godmother had made for everyone. We got to meet four other survivors and their families, which was amazing and inspiring and seeing such awesome, happy, normal (except even better!) kids gave me so much hope for Ollie’s future. Then the sun went down, the tower lit up, and an amazing night got even more amazing. To see the biggest, brightest, most noticeable part of our cityscape lit up in honour of all the little CDH angels and survivors was so powerful that there are no words to describe it. An enormous and endless thank you goes out to everyone who had a part in getting it lit, especially Shannen Bailey, angel Asjiah’s mom, who is a beacon of strength and amazes me every day in her efforts to raise awareness and continue to fight CDH in her daughter’s honour. And thank you to everyone for coming out despite the awful weather, it meant the world to us to celebrate with you!
This Sunday, I’m sure you know, is Mothers day. Yesterday was Bereaved Mother’s Day, a special Mother’s Day for mommies whose babies live in their hearts but who they do not get to hold here on earth anymore. If you know someone, like Shannen, who has suffered such an unimaginable loss, please give them a hug this week and remember to wish them a happy Mother’s Day this Sunday. ❤
Ollie on CityTV click to see him!
Oliver and our friend Shannen, whose little girl Asjiah died of CDH, are going to be on CityTV news tonight at 5 & 6! Dr Cox will also be on. Check us out! Channel 7 in Toronto 🙂
The CN Tower will be lit in blue, yellow and pink, the colours of CHERUBS, for CDH Awareness on April 19, CHERUBS CDH Awareness day. Please join us at 7:00 to raise awareness and show support for all the survivors and angels, and feel free to invite everyone you know! There will be cupcakes.
Oliver is really excited to see all of you, although he’ll probably be asleep in his stroller 😉
We would love to get some media coverage to help raise awareness, because awareness = research funding = less suffering for future CDHers! So if you, or someone you know, works in the media we would love if you could come out. Another CDH mom, Shannen (mommy to angel Asjiah) and I would be happy to answer any questions you might have.
If you’re a CDH parent or survivor (you know who you are…) we’d really LOVE if you could make it out especially!
See you all April 19th at 7:00 at the base of the CN Tower 🙂
Here is the link to the facebook event.
The Wessons Versus CDH 