Aug 25, 2008 - Surgery Postponed - We had our surgical follow-up appointment with Doctor Annie Fecteau today. She was pleased with a lot of Jonny's progress. (He was subdued because of his tummy virus. He's still vomitting and tired.)

But she was concerned that he has gained very little weight since January. She doesn't want to do surgery on him with so little "reserves". She wants him to be bigger and stronger. We will see her again in a month and maybe surgery may be postponed from this fall even until next spring. Although we're not in a rush to have this surgery, we were surprised and disappointed that it's being postponed because he is not technically strong enough.

This month will be about trying to find ways to get weight on him. Janis has always been concerned about his slow weight gain. But we don't want to just give him tons more G-tube food and lose all the progress we've made with getting him to eat more (liquids) orally. So we're a bit at a loss as to what to do to get weight on him. We're going to focus on getting him through the tummy bug and consult our wonderful dietician Joan and try and come up with a plan.

Yesterday was a tree-planting picnic in memory of Heiko. Janis had the tummy bug so wasn't able to be there, but Eli and little wobbly Jonny and I made it. It was incredibly moving to see this community of loving people surround this remarkbale family. And to see Heiko's strong little tree growing between the flowing Humber river, and the kids' playgound.

Aug 23, 2008 - Triumph and Setback - We had a successful trip to Halifax. Our first attempt at leaving the province since Jonny was born. Both boys did amazing on the plane, and we had a fantastic five days. Wendy and Carol hosted us and treated us like queens and kings. Eli turned 6 and had his first loose tooth! We canoed, kayaked and swam in the freezing Atlantic.

The day we got back, Jonny started vomitting. We did not want a repeat of what happened with the rotavirus, so after 12 hours of watching and agonizing, we realized he was dehydrated and we took him to Sick Kids emerg. He had to get IV fluids and meds and we stayed overnight. Suffice to say, last night was a sleepless and surreal night in ER. He was discharged before noon (today, Saturday) and is doing much better. We are all head-spinning and a bit weary, but we weathered it. We can never forget how things can turn on a dime. As Dr. David Lasko said in NICU, "as quickly as they turn sour, they turn sweet."

Aug 15, 2008 - A Year Since Discharge - Miriam and Jane are right! No news is good news. And there has been a lot of good news in the Jonny dept recently. In fact, he just spent a week up at a cabin in the woods and loved it! As long as we can charge and keep his pump running when he needs it - his nutritional life source - and can keep his formula and meds safe and clean and a few other complexities that one doesn't usual have with children, he (and we) can manage a very "normal" existence for Jonathan that includes frog hunting, playing with cars, digging in the mud and riding in the wagon. I'm proud of him, and I'm proud of Eli and frankly, I'm proud of all of us, for working hard to ensure that Jonathan gets everything he needs plus has as normal a life as possible. Do you know it was one year ago this week that he was discharged from hospital after almost nine solid months? And now, at times, it's like he was never there! Sure, he's got issues. And he will for a while. But thinking about where he was then, and where he is now is almost head-spinning. So all of you who have little ones who are in difficult places, hospitals and ICUs and struggling: hang in there. As a wise woman once said to me, no matter how difficult, this time will eventually pass. Try to take it one day at a time and know that it will all be worth it in the end.

Two dates to mention: Sunday August 24th, from 12-2 p.m a Commemorative ceremony for Heiko. Pic nic potluck in Etienne Brule Park, which runs along the Humber River. For more information: jamesbooth@sympatico.ca. Monday August 25th - surgical update appt for Jonathan with Dr. Fecteau. This is when we will get an assessment of how he's doing and when she expects to book his next surgery. We'll report more then.

July 16, 2008 - What a difference a year makes!! - This time last year, I have to admit I was descending into despondency. Jonny had been in hospital for almost two months following his heart surgery (8 months in total at that point), and there was no end in sight. Our little family was under a lot of strain - emotionally, physically, financially and spiritually.

But along came the Jon-a-thon, a benefit that my pal Michelle conceived and that she, Jane and Dawn made happen - with a lot of help from a extraordinarily kind, generous, sweet, compassionate community. During the weeks prior to the Jon-a-thon, as the line-up, well-wishes and silent auction items started to pour in, we found ourselves giddy! We shared each new email about the event with the other parents on the cardiac ward - people who were going through the most dire prognoses for their children - and they high-fived us through the halls and vicariously experienced wonder and joy.

The night itself was a revelation. We got to publicly thank our NICU nurses and NP's, we drank in the love, the brilliant talent, the caring. We saw friends who we had not seen in months. We got out of the hospital - TOGETHER! We laughed, and in the first moments of the event, as Sho Mo and the Monkey Bunch and the entire audience sang "Jonathaaaannn", we cried. Days later, Jonny, who had been languishing and weighed about 10 pounds, began to rally. Janis could not believe that it was due to anything but the surge of loving energy, hope and determination sent his way that night. I believe it too. I also now believe that god is in the love and kindness of ordinary people. In all of you.

The funds raised have supported us in this year in ways we could never have imagined - from medical supplies, to medicines, to respite care, babysitting, clothing, and basic life costs as I have continued to be at home taking care of Jonny. We are also happy to have been able to donate a portion to the Sasha Bella Fund. We've also joined an NICU family care committee which meets monthly to brainstorm ways to improve upon the excellent care Jonny received in NICU.

Today, Jonny is dancing. He waves his arms, intertwines his fingers and stomps the floor. He screams with joy, pushes his toy bike, talks to Eli's pokemon. He hugs us and kisses us, he lights up when he wakes up and sees Eli. Eli has blossomed. His level of anxiety has diminished, while a new responsibility for his baby brother has emerged. His imagination is still a wonder, and his sharp and ready mind is a constant source of delight for us all. And guess what? He's really good at baseball!

Janis has started an exciting new chapter in her life and career - undertaking a learning curve that would have been mentally and physically impossible even months ago. She's damn good at it. We are so proud of her. I'm writing a column for the Star that means a lot to me, and starting to work on new ideas. While I'm still Joanthan's executive assistant, I'm looking forward to reemerging artistically. Although we've been frequent flyers this year at Sick Kids, and Jonny has a major surgery coming up this fall, we have finally had him at home longer than he was in hospital. He is our baby now. We are a family. Please take a moment to look at the Jon-a-thon photos on this website, and the new pics too. And please feel our deep gratitude and love, wherever you are today. Much love, Diane

JULY 6th, 2008 - CABIN VACATION - We have just returned from almost a week up north at our magic cabin in the bush. It was a magnificent adventure. We saw moose prints, BEAR prints, deer prints. Eli found and named salamanders, frogs, toads and slugs. We played chess and archery and had long tromps in the woods and swims in beautiful lakes. Jonny did so well. It really is a new era! We are so grateful to have our first decent time away together as a family since before Jonny was born. Thank you to Daddy David for joining us on our last day up there and having such a fantastic time. Janis promises to post some pics of the cabin and of Jonny's new button today.

Jonny is doing really well. He's verbalizing more, playing, sharing his toys with Eli, drinking more liquids. The new button is more comfortable for him. We're still skipping one bolus feed a day and replacing it with an oral feed and so far it's going well. Eli's new favourtie saying is "what in the heck of the world?!" And he told me that he saw himself in the mirror and noticed that he is kind of cute. I have to agree.

p.s. I wrote this column about Oliver Schroer, a heart-stirring composer and musician who was facing down leukemia. It came out in the Saturday Star Living Section on July 5th. I just found out that he died on July 3rd. I was very moved by meeting this forceful, generous man. His music is available on the Star website. Up until the day he died he was working on new projects and helping the Star get his music to their readers. Please take the time to listen to it. It's beautiful. http://www.thestar.com/living/article/452374

JUNE 26TH, 2008 - JONNY'S ROOM - I forgot one important bit of news. Jonny is now sleeping in his own room!! He is finally out of our bedroom. Either Janis or I usually ends up spending part of the night with him when he wakes up in the night, but he is happy and content in his own space, with his own little bed (not a crib).

JUNE 25TH, 2008 - GRADS, AND BUTTONS - Sorry we've been so out of touch! Janis has started her new job and it's an adjustment for her and our family so there hasn't been much time to write.

The jury was out on the button but, after making many mistakes, we are pleased. No more taping a tube to his body, no more dangling tube and raw skin - the button is much gentler on him. The only drawback is that it's too big for him (it moves around a bit too much, and has been hanging out of his skin and catching on his shirt) so on Monday I will take Jonny back to Sick Kids to have it replaced with a smaller size button.

The other big news is that we have begun to try and scale back on the G-tube feeds. The last few days, I've been skipping one G-tube bolus and replacing it with oral feeds - soup or creamy yogurt or ice cream that Jonny will swallow. Today he had chicken soup and then some of a bottle. By skipping the mid-day G-tube feed, and feeding him orally after nap (3:30ish), Jonny is hungry and more willing to swallow. He's done well, but the challenge is to find liquidy things that he will want to eat a lot of. We dream, of course, of no tube one day, so this is a step in the right direction. We will monitor his weight and keep this up for a couple of weeks, and then see what the next step will be.

Today was Eli's last day of senior kindergarten. We are so proud of him. He's learned so much and matured greatly. He's had his brother home, finally, with all that entails - a huge adjustment. They adore each other and Eli is very protective of Jonathan. He'll often say to me, "Mama, can you watch Jonny for me??"

I am going to get Janis to post some pics of Eli's graduation and of Jonny's button. She is so busy and I am also very proud of her.

JUNE 10, 2008 - Button - Jonny got his new tube, the button, put in by Julia, the G-tube Nurse on Monday. He was very afraid of the procedure, so much so that he vomited. How could he know that it would be fast and not hurt much? Julia gave Janis and I a course on the new tube. We got home with him and felt fumbly - immediately making every mistake in the book. Today I feel like we'll get it - although there are things to really watch out for.

The button is a bit too big for Jonny. He seems to be in between sizes. In order to not have to replace it, I (Diane) had to adjust it today. In the process, guess what? It came out. So I put it back in and reinflated it with water. The good news is that I could easily put it back in. And the skin around it already seems a bit less raw.

Jonny seems a bit perturbed by the button. While it's fantastic not to have a big tube hanging down, it is odd to have a largish device sticking right out of his tummy. I hope he'll get used to it soon and things will stabilize for all of us. The jury is still out but we'll keep you posted.

He also had three appointments today - speech and language, development, and OT. He has said the word "up". He's developing well, his eating is pretty status quo.

JUNE 07, 2008 - Sasha Bella Walk, Birthdays and Buttons - Tomorrow morning is the Sasha Bella Walk for Sick Kids and in the evening is the Families In TRANSition Book Launch event. I know Jonny and Eli will really enjoy the walk especially since Sho Mo and the Monkey Bunch are performing at the BBQ. We thank everyone who sponsored and supported us. Together we raised $1226.10 and in total the walk so far has raised over $37,000! Perhaps we'll see you there.

Geminis - Today we wish Ruth Marshall, Daddy David, Uncle Daniel and Alisa Palmer very Happy Birthdays. In addition Auntie Laura and Cousin Jordan will celebrate on the 12th (what's with the plethora of Geminis?). All are very special people to us and our children - and not one looks a day over 29!

And one more piece of big news....Diane called the G-Tube nurse on Friday to discuss Jonathan's tube site and see if there was any date set to replace his current tube with what's call "the button". We don't mean to surprise you but the appointment was booked for 8:00 am Monday morning! She has to see him first and take a look at that site and if it's not too infected or raw, they'll go forward.

If you didn't catch this installment of Diane's Toronto Star column "In the Thick of It" feel free to enjoy here.

JUNE 04, 2008 - Apologies - Sorry, we've had technical difficulties that kept the website down for a few days. Thank you to those who sent notes of concern. All domains and pointers are now renewed and we're happy to be back up and running. The big news re: Jonny is that he's doing generally really well. He just has some unfortunate recent chest congestion that we're watching closely. The new g-tube site remains infected which just makes us look more forward to getting that "button" sometime in July. Next surgery still on schedule for November. He's still not talking but verbalizes more and more.

On the parental front I'm pleased to announce a big change: As of June 17th I will be moving jobs to work for an amazing Foundation - The Stephen Lewis Foundation - working with absolutely incredible people in the Grandmothers To Grandmothers Campaign. I will miss all my good friends at CTYS - it's a great children's mental health centre with excelelnt and dedicated staff - but am very honoured to be joining the team at The Stephen Lewis Foundation and excited to open a new chapter in life.

On another note we must thank Bruce MacNeil for taking some amazing pics of Jonny recently - check him out at our local coffee shop (Jet Fuel) where Diane and Jonny apparently hang out causing trouble while Eli is in school and I'm working...

http://brucemacneil.com/straws/

MAY 25, 2008 - Remembering A Year Ago - Last year at this time, Jonathan was in big trouble. he'd had his first heart surgery on May 22nd and just couldn't seem to recover, eventually going into failure and needing a second surgery to permanently cut his pulmonary valve. We were scared and bewildered - watching what felt like "a train going off the rails". For the third time in his life we were afraid of him slipping away. It's unbelievable to think about it now. I'd never want to go back in time. Gratitude is all I have for his life now. For our life. Never would I imagine that he'd be swimming and running and enjoying life (esp with his brother) the way he is now. Next week, good friends Ruth & Rich have generously bought Diane and I a night in a hotel. It will be the first night away from both boys since Jonathan was born. I know we need some time away just the two of us, and we're really looking forward to it, but it's a bit inconceivable at this point. Thank God for Auntie Kelly and Uncle Daniel who can really handle these two boys and all their issues. I know they'll be in good hands so I'm going to try to relax and enjoy (calling in every two hours, of course).

I also wanted to send out a bit of love and comfort to Heiko's parents and family who, I'm sure, are also going back in time this weekend - very hard memories, very painful anniversary of Heiko's diagnosis and first hospitalization. Our thoughts are with you.

Here is Diane's article from the Toronto Star yesterday for those that missed it:

In The Thick of It By Diane Flacks

Needed: A Dose of Humanity

Patient turns medical misadventure into script for health-care providers and medical students

MAY 22, 2008 - Anniversary of Heart Surgery - A year ago today we were preparing Jonathan for what we thought would be a routine open heart surgery (if there is such a thing). I think back on that time and am so grateful that Jonny got through that surgery, survived the heart failure, managed the second surgery, overcame the chylothorax and resisted all the infections and other problems. I am glad to be far away from it all. I wish love and strength to those who are in the midst of the hard times now, in particular I think of the families of baby David and baby Amy. And my thoughts definitely go to the family of little baby Amelia. Our sweet friend and neighbour in 4D. Love to all the nurses and doctors in CCCU and 4D who made life somewhat bearable during this time. I know you're out there still doing your heroic work day after day.

MAY 16, 2008 - Walker - Jonathan has become better walker. He has more confidence on his feet and almost saunters sometimes. He loves playing hide & seek, chase me, smack mommy's tummy, fall back & tickle my tummy, and a game David invented with Eli called "Sweet and Peeyoo" (he holds up his one foot and then the other and laughs at the reaction). Despite the fact that he still only has two words ("mama" & "book") he is very good at communicating. He likes to puts all different kinds of food in his mouth and chew and then spit it all out. And he knows how to give wonderful, head snuggling hugs. He still has a killer two-stage smile that wins over many hearts (smile first, then crinkle up your eyes and smile wider - gets them every time). Our little baby is really coming along.

MAY 13, 2008 - 18 month check-up - Jonny had his checkup and booster shots. The pediatrician would like us to increase the volume and speed of his boluses. From 100cc's over 20 minutes, to 200cc's over half an hour, and eventually faster. We think he can handle this. The ped was also a bit concerned about his weight - in three months it's basically the same, although he grew in length. We aren't as concerned because Jonny lost at least 500 grams in the hospital (when he had the rotavirus) and has gained it all back in two weeks. The focus is still speech and eating. Otherwise, he's doing well developmentally. His G-tube site is starting to heal a bit. We'll wait until it's better before moving to the button.

Yesterday I (Diane) was outside with Eli and Jonny, and ran inside for a second to grab the diaper bag. Eli yelled at me, "Mama, don't let Jonny go on the road." A protective, wise older brother!

MAY 11, 2008 - Lesley Parrott - A very powerful article by Diane this week in The Star:

In The Thick of It By Diane Flacks

Time helps, but the pain never ends

Lesley Parrott didn't just survive the murder of her daughter; she embraced a truer life

MAY 11, 2008 - Happy Mothers Day - To all the mothers, grandmothers, soon-to-be mothers, sisters, aunties and friends we know. To those that have children, may have children, have special-needs children, and/or love and care for other people's children - Happy Mothers Day. The world is a better place because of you. And to those who've lost children on this day, we send you strength until tomorrow. Good night and God Bless. P.S. Jonny has a ped appt tomorrow morning. Will give a medical report after.

MAY 8, 2008 - Colds and tubes - Both Eli and Jonny have colds. Yesterday and today they were both home with me (Diane) making each other laugh. Despite the unpleasant discovery of icky kleenexes in the couch, it was very special. Jonny's tube site is still ugly and sore. We're doing warm saline soaks and baths. The nights have not improved, unfortunately. Jonny still screams and cries. Although now we wonder if the cold that has just appeared is contributing to it. And some of the "something" is making it's way out of his tummy again. I almost missed it these last few weeks.

MAY 6, 2008 - Rough Nights Again - Poor Jonny. This new tube is clearly making life hard for him. He's much better during the day but he screams at night. The site is beyond ugly (lumpy, red, raw and bleeding). He seems to have cramps and pain at night that cause him to cry and scream out terribly, without stopping.

Also, the tube itself really pours out. Like, if it opens for any reason, even for a short time to,say, give him a flush, his formula or meds soak the bed. It seems too much to me but D. says it's the new bigger tube.

She and I are back to splitting up at night (one stays with Jonny and one goes to the spare room) because whoever has been with JJ the last nights get NO sleep. I don't know what to do. Is this normal adjustment to a larger sized tube or is something wrong? Anyone out there seen this? I'm defintely calling Julia, the G-tube nurse, tomorrow.

May 5, 2008 - New Tube at IGT - Jonny is doing great. He's gained all his weight back, and is happy, resilient and sweet. Today we had to go to Sick Kids to get a bigger G-tube in preparation for having a "button" - which is a different type of G-tube. The benefits are that the button sits close to the skin, doesn't require changing at IGT and may help his tube site heal. The trip to IGT was traumatic for Jonny as usual. Especially the part where I (Diane) betray him by putting on the gown, hair net, and lead apron and then help to hold him down. But Dr. Temple inserted the new tube incredibly quickly and we were done. The old tube looked awful as it was discoloured by all that brown blood that Jonny was vomiting when he was so sick. Glad to be rid of that!

APR 26, 2008 - Sasha, Heiko & Ian - I am happy to report no vomiting last night by Jonathan. Diarrhea still, yes, but no more vomiting. So that is movement in the right direction (so to speak). Diane's article about Sasha Bella and her family is in the Weekend Living section of the Toronto Star today. Click here to read.

If you scroll down to our Apr 10 posting you can also see and/or support our commitment to the

Sasha Bella Walk on June 8th. On a sad note, today is the birthday of Heiko, our dear little friend from Sick Kids ICU who passed away on Jan 3rd. This will be a tough day for his parents and family. Gabrielle, Don, Heidi, Christine, Lang...we are thinking of you and send love and strength. Today is also my brothers birthday. Happy Birthday Ian. We'll see you tomorrow at Lick's.

APR 25, 2008 - Rough Night & Sabba's 70th Birthday - Jonny was up a lot last night with numerous bouts of diarrhea. He got really thirsty too and gulped water and then vomitted a bit (more laundry :)) but he is resting now, having tolerated several boluses and sips of water. Eli has been very protective of him, while still finding the pure absurdity of it, "Mama, can you move this vomitty baby off my chair?" We are watching Jonny very carefully and I'm trying to keep him hydrated but not overwhelmed. Today is also my Dad, "Sabba Cy's" 70th birthday. Sabba is an incredible grandad to all his grandsons, and we owe him a huge debt of gratitude and love.

APR 24, 2008 - HOME - After handling two small boluses this morning, Jonny was deemed fit to discharge! Eli hung out with us all morning at Sick Kids and was great. We came home and Janis and Jonathan slept for two solid hours. Jonny is still very weak, not able to stand or walk yet, thin, and suffering from bad diarrhea. But he's home. We have some recovering to do, and need to be delicate. It feels amazing to have us all together in one home again. I am so grateful to our incredible support network once again! Also to CTYS, Janis' work, who've been kind and understanding.

APR 23, 2008 - later, starting to turn around - After spending a long night with Jonny, Janis went to work today. I stayed with Jonny while my parents and sister and her kids hung with Eli (THANK YOU!). Jonathan went from very listless and vomiting this morning, to wanting to read and interact, and then getting some small, diluted boluses of feed by this evening. We hope he'll have a restful night and that he will be okay to continue his recovery at home tomorrow.

APR 23, 2008 - Still on 7C - Jonathan is doing better today than yesterday but is still not ready to be discharged. They are not sure what he has but the clues point to Rotavirus or some other gastroenteritis. We'll know for sure when the stool samples come back from the lab. He has regained a bit of his personality today which is nice. He even smiled a (somewhat reluctant) smile at my peek-a-boo this morning. But he is sad and weak and is still vomiting and has diarrhea. Poor little guy. He can't leave until he can hold down fluids and get off the IV. We're hoping he'll be feeling better tomorrow and can come home.

APR 21, 2008 - Back in Hospital - Jonny is in hospital tonight. He started vomiting on Sunday morning and couldn't stop. He and we were up all night Sunday night. He was so thirsty, he would gulp water and then vomit. By morning, his vomit was brown with dried blood, which, as you can imagine, is concerning. Janis took him to emerg at 9am and they are still there, waiting for a bed. He was given an IV for fluids and meds to stop the vomiting and some to help with the bleeding. They are not sure what he's got, so he's being given anti-biotics and tested for numerous things. When he arrived he was severely dehydrated. And his heart rate and breathing were too high (dehydration can cause that - we have to watch out for his heart defect). He's definitely better now (7:30pm) than he was this morning. We'll keep you posted. It's hard when he cries for water but he can't have any (because we don't want him throwing up anymore). Please send peaceful vibes to Janis. We had some unpleasant dejavu as I left to go home to Eli tonight, leaving her and Jon. Luckily, Heather, Netty, Kelly and Dan came by.

APR 19, 2008 - Pedeatric Eating Disorder Specialist - We had a great meeting today with Frances from Centennial Health and Joanne, the Texan-born tiny toughy of a speech and feeding pathologist. She thinks Jonny is a great communicator. So good that he doesn't "need" to talk. She'd like us to make him need to talk more. For instance, if he makes a sound with a sign (as he does with book), acknowledge the sound, whatever it is, and give him what he wants because of the sound he makes, not the sign. She thinks he is developmentally excellent, very on track for 18 months, sweet, responsive, alert. Great news.

For feeding she would like us to try foods that he has to work at getting around his mouth - not with "grit" or texture because he is cautious of texture - but sticky like cream cheese, creamy peanut or almond butter, nutella, cheez-wiz (!) or any other smooth sticky cheeses. She notes that he's cautious with swallowing small amounts of water. He also makes sounds in the back of his throat a lot. She recommended he have a swallow and feeding study done by a ear-nose-throat doctor to see if there is something physiologically going on back there. She would also like an audiology test. All that said, she was impressed with his love of crunching, his chewing and his amazing and intense interest in all foods. She believes that he will eventually swallow as he is doing everything up to that point. We hang hope on those words. Oh, we were talking about dissolvable solids and I (Diane) thought of cotton candy and she actually liked that idea for Jonny. What a diet he will have: Cheesies, cheez whiz and cotton candy...yoiks...

APR 14, 2008 - Gen Surg Follow-Up- We had a follow-up appointment with Dr Fecteau this morning. She thought Jonny looked great, the omphalocele felt fine to her, she was satisfied with his g-tube feeds, and glad that we're working on oral feeds. He weighed 9.2 kilos by their scale - 20 pounds! The "something" is still coming out of Jonathan's tummy. Dr Fecteau cut some off and pronounced that there is still more in there and it will make its way out. We have another follow-up in 4 months and that's when we will discuss when Jonny's closure surgery will be - probably close to his second birthday. Dr Fecteau didn't like the look of Jonny's G-tube site. It's red and sore looking again, so we have to do more saline soaks. She also suggested that he's ready for a "button" which is a different type of G-tube that doesn't hang away from the body as much as his current tube. Apparently the maintenance of the button is easier for parents and if it comes out it doesn't mean a trip to IGT - it means an appt with a G-tube nurse or specialist. So, in about two weeks, Jonny will go to IGT to get a bigger form of his current tube (to prepare the site for the button). Then three weeks later, he can get the button! We have to go for a special course on the care of the button - something new to learn and adjust to, but we hope it will be better and safer for Jonny.