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Check NEWS for latest month updates! APR 12, 2008 - Janis' Award! - I am so proud of Janis. Each Year brilliant comedian and producer Maggie Cassella's We're Funny That Way Foundation presents the Salah Bachir Award for community service. It is awarded to a person who's dedicated themselves to helping lbgtt community. This year the recipient is Janis Purdy for all her innovative work for youth over the past twenty years!! The We're Funny That Way festival is always an incredible, not-to-be-missed event chuck full of hilarity, and proceeds from the festival help the foundation fund many non-profit organizations in our community. April 30th is the big fundraising gala with a fantastic international line-up of performers (including moi). Check out www.werefunnythatway.com for lots of info and tickets! Come and join us to celebrate Janis and the great work she does! Apr 10, 2008 - The Sasha Bella Walk - Diane, Eli, Jonathan and I are participating in the 2nd Annual Sasha Bella Walk this June 8th in Toronto's Cedarvale Park. If you read this website you know that we support the Sasha Bella Fund at Sick Kids. For me it's the best way to help Sick Kids - the hospital that was Jonathan's first home for 9 months and continues to be his second home - and to support the compassionate and skilled people who work there and took such good care of him. Even though Sasha and Jonathan have/had different fundamental issues - Jonathan's being a giant omphalocele and Sasha's being Alagille Syndrome - they also had things in common. Both Sasha and Jonathan had/have serious cardiac problems and both spent an awful lot of time in intensive care units in the hospital. We have become quite close to Jonathan Blumberg and Pamela Stein, Sasha's parents, and know that they are committed to the same Sick Kids causes that we care about - family-centred care, palliative care, education across the professions and improved quality of life for long-term patients and families in intensive care units. We know the money raised will be used well and we are proud and happy to participate. If any of you would like to participate with us in the Sasha Bella Walk please go to sashabella.com or sashabella.blogspot.com to learn more and register If, on the other hand, you would like to support Diane or I in our walk there is an easy way to donate on-line through our personal fundraising pages. Of course like any healthy and mature couple, we are competing to see who can raise more money so you'll note I'm listing my page first (hint, hint). Thanks for reading. Janis's page - http://my.e2rm.com/personalPage.aspx?SID=1758668 Diane's page - http://my.e2rm.com/personalPage.aspx?SID=1758571
APR 8, 2008 - The Jon-a-thon Fund - A quick thank you. As Diane's work opportunities wind up (slowly) and I am facing a full work load come June we're looking at how much time we can afford in terms of respite care and support and are very grateful to still have funding through the Jon-a-thon Fund. As Diane has said on numerous times, in her succinct and delicate way: "We'd be up sh#&s creek without that Fund". Thanks again to everyone who contributed. Also, a big congratulations to Drew and Jane B. who are the new parents of a beautiful baby girl named Sasha. We are very happy for you and can't wait to meet her. APR 5, 2008 - New pics- Check out the new pics on the photo page. We are soaking his G-tube site with saline 2-3 times a day to help it heal and it seems to be a bit better. Jonny is now getting his 100cc boluses in about 20 minutes! He is really full of beans and idiosyncracies. He loves his brother and he is putting EVERY kind of food in his mouth. His OT thinks he just has a pronounced gag reflex and that's why he won't swallow foods with texture. She's really impressed with his interest in food and has hopes for him. His nights are still not great. Up crying 4-5 times a night and a tossy-turny noisy sleeper. Better than with the GJ, though. He's making a lot of different vocal sounds, including a pig noise, and loves yelling MaMAA. As for him getting around, I've decided upon observation that he walks like a cross between an old man and a chorus girl. And yes, the "something" continues to slowly work it's way out - very painfully slowly - millimeter by millimeter. We are torn about whether to cut the edges as it emerges. Part of us wants to see how big it actually is in the end. MAR 28, 2008 - Update on the "Something" - The short story is all is okay. Dr. Fecteau examined him, cut some of it off and pronounced that it was a piece of his silo (that's from over a year ago!). She doesn't know how big or how deep it goes. She felt it was not a good idea to cut it out since his body is already in the process of ejecting it. She tends to take a conservative approach which we greatly appreciate. We're to soak it with salt daily and encourage the process but allow it to happen slowly. Gross, gross, gross. But at least he's okay and she's not too worried about him. I'm sure she's seen so much in her day that nothing really phases her. BTW - she has just returned from a leave of abscence and was really pleased to see that he's walking. We asked her about his next surgery and she is still thinking closer to his 2nd birthday. We'll have a longer exam with her April 16th. MAR 27, 2008 - Something Working It's Way Out - For months and months Jonathan has had a patch on his omphalocele that won't heal. Red, scabby. We treat it and the scab wears off and then comes back. No healing. But we've had the same problem with his G-tube site and thought perhaps he just has sensitive skin and that it would heal in time. This morning in the bath Jonny was pressing on this spot, as he often does. Then he took Diane's hand and put it on the spot. Diane noticed something white on it. At first she thought it was granulated skin or puss but on closer examination it looked....like something else....something coming through the skin. Something like netting or surgical gauze. She called me told me and when I got home from work the first thing I did was take him to bright lights. No question - it's not skin, it's something else. I got some tweezers and gave it a small yank. Not only did he scream but it really became clear that this thing is not small and goes deep. I really nearly barfed. I immediately began packing him up to go to emerg right then and there (this was about two hours ago). I didn't know what it was but there was a foreign object working its way out of my sons abdomen and I wanted it out NOW! After talking with Diane I realized Emerg might not be the way to go. We called our surgical NP Nicole and she confirmed that this was something for the surgeon to deal with and we could be at emerg all night and instead she would arrange that we could instead bring him first thing tomorrow (8:15 am) to see his regular surgeon (Annie Fecteau) who will deal with it immediately. I made a joke to tell the surgeon that it looked like the corner of a hospital ID card and we could only make out the letters eau, but the truth is, I am completely horrified that something has been kind of left in him, and I'm afraid to find out how big this is and how deep it actually goes. Tomorrow Diane will get up early and take him to clinic first thing. I'll take Eli to school and then race over to meet them. This poor kid! My god - next thing you know we'll see the outline of a pair of scissors on his next abdominal x-ray! MAR 24, 2008 - New Pics - Jonathan and Eli have had a busy, happy weekend with two fun holidays: Purim and Easter. After a Purim party Thursday night at synagogue we left for time away at the cabin with Auntie Kelly and Uncle Daniel. Both kids had a great time, especially at the farm dancing to guitar music and the ever popular Easter morning chocolate egg hunt. I will report that the chimney had bent right over with the snow load they have up north - it's got to be four feet high at least. Prime for tobagganing and snow-shoeing, but not great for roads and roofs. Jonathan is doing well these days. His stomach can now tolerate a formula bolus of 250cc per hour over half an hour which is tremendous. I wish he could take that volume by bottle but he still really needs the G-tube as his swallowing aversion is very pronounced. Check out the new pics of him "eating" on the photos page. He is still in line for feeding therapy, speech therapy and we're looking forward to having his regular physical therapist (OT) Amanda back next week who, I think, will be happy to see how well he's done with walking. He's getting steadier by the day. This evening he was chasing us down the hall with his arms out in front like a mummy and a look of the excitement of the hunt in his eyes. He remains the brightest and happiest baby I've ever known. MAR 20, 2008 - Toronto Star Articles - Today the Toronto Star featured an annual special section about Sick Kids Hospital. Sammy Archer and his parents are featured in an article about NICU raising money to create developmentally appropriate rooms, a cause that we support very much. HOSPITAL LIFE TheStar.com | SickKids | Premature babies thrive in cozier ICU There is also an article about dear Stephanie with many touching photos. If you click on the link below you can see the article which features a powerful slide show of images and voice over by Denise and Stephanie. HOSPITAL LIFE TheStar.com | SickKids | When home is the hospital
MAR 18, 2008 - Latest Article - A Link to Diane's column from Saturday in the Toronto Star about Lia Grimanis IN THE THICK OF IT Thestar.com Advocate for homeless knows what it's like MAR 17, 2008 – G-Tube Course - Happy St. Patricks day and Happy Anniversary to the Purdy parents (51 years March 16th!). This morning Nurse Julia at Sick Kids hosted a special G-Tube class for Jonathan caregivers. Nine of us attended. I’m really grateful to Julia for taking the time to give us such personalized service, for Auntie Kelly for organizing it and for everyone who took part. Julia gave us really clear and valuable information for the care of his current feeding tube: flushing advice, adaptors and catheters, meds by tube and mouth, blockages, care of the tube site, how to avoid accidents, and what to do if it gets pulled out, etc, etc. She also gave us a bit of a sneak peak into the world of “buttons” or “mickeys” (the smaller tubes held closer to his body). Basically, it’s a step wise process – from size 10 to size 12 to a button to nothing. That’s the trajectory we’re aiming for. I was especially grateful for the discussion about how to help Jonathan’s tube site. If you’ve seen it you know that Jonny has always had inflamed and red skin near his g-tube site. It’s concerned us from the beginning. We’ve tried everything and it goes from bad to worse. Since the new size 10 tube was inserted in February it’s gotten really red, infected and crusty looking. It’s painful to the touch or when he rolls onto it. When we described it to Julia she was concerned as well. She told us many ideas for treatment and then agreed to see him this afternoon for an immediate consult. Diane is taking him at 1:30 PM and I hope we can really solve this problem once and for all. I have to admit the whole class I was dreaming about the day, one day in the future, when he doesn’t need this tube at all. Imagine what freedom and happiness that will bring! [Update Next Day: Julia treated the tube site, removed some granulation tissue and gave instructions for three saline soaks a day for five minutes each for the next three to four days. In addition she gave us special cream to put around - but not on - the site. It's already beginning to look a bit better.] MAR 14, 2008 - Today in the national Globe & Mail Newspaper. Lives Lived section. HEIKO ALEXANDER EARNSHAW WILLMS MAR 10, 2008 - Jonathan is walking (assisted) and laughing his country-boy laugh and generally enjoying life these days. He had his first hair cut thanks to Auntie Netty. I know, but it had to be done. He's got kind of thin and patchy hair but some areas (around the ears and at the front) were getting positively unruly. He's very cute. We're still working hard on the feeding and speech. We have a new worker from Centennial Development who is going to meet him March 16th. She's a specialist in eating disorders so I hope she can help. Auntie Kelly and Uncle Daniel have taken him into their pool a few times now and he enjoys that also. As I've said before about Jonathan, he's a good sport, always game for new experiences and adventures. In the mean time I'd like to share an article about Aidan, a little O boy born in Chicago last year. His mother Sarah is a friend I met on my MOO (mothers of omphalocele) list - she is doing a great job. MAR 1, 2008 - Snow Storms and Sunshine - It's my hope, as I write this on the first day of March - with four more cm of snow on the ground from yesterdays storm - that spring might come eventually to this part of the world. This week has also been quite a wind storm: Monday the tube came out and we had an emergency visit to Sick Kids at night, the IGT tube replacement appointment and NICU brainstorm meeting happened Tuesday, our first adult date in ages was on Wed night at George Restaurant thanks to a wonderful friend (haven't enjoyed myself that much in ages) and then Thursday night poor Diane came down with a brutal flu or food poisoning. She had severe abdominal pain and vomited all night and the next day. Ugh. On Friday I stayed home from work to take care of her and the little ones. Now it's Saturday and all seems to be finally returning to normal (hopefully). Jonny's new tube is working well, he and Eli are in good sprits today, Diane is feeling better (although her back muscles are in spasm - yoiks) and the sun is shining again. Oh, and Jonathan now says, Book (Ungook), Mama (Ama) and Eli (Eeeeyah) and is beginning to take his first steps. I hope wherever you are the sun is shining too. Here is the link to Diane's latest column (she got a full page in the Star today with a nice big pic): IN THE THICK OF IT TheStar.com | living | A multi-year gestation FEB 26, 2008 - Succesful IGT visit - Janis and Jonny got home late from emerg last night with a jury-rigged foley catheter/G-tube. First, Denise met them in the atrium and got the foley catheter functioning!! Yay Denise, mom of Jonny's soul sister, Stephanie. Then, the emerg doc was great, and they didn't have to stay there too long. Jonny made it through the night well. This morning we were scheduled to attend a family-centred care brainstorming meeting at NICU, and we did, with Jonny in tow. Very encouraging stuff. Kudos to Jonathan Blumberg, Sasha Bella's dad, for organizing it, and Dr. Jonathan Hellman for gathering the NICU people. A meeting of the Jonathans. Jonny and I ducked out to IGT to get his new tube. Jonny is such a frequent flyer that the staff at IGT knows and adores him. They are so kind to him. He got his new tube around 2:30 this afternoon. It was very fast, although he was extremely upset. He is fully aware now of what is happening. But he got through it well and we are home and happy. We're reminded how cautious we need to be with Jonathan, but also that things are so much better now than they have been. And again, how much Sick Kids has become our family. FEB 25, 2008 - G-tube Out - We've had so much exciting progress and new horizons with Jonathan, that it's easy to forget that he is not simply a "regular" baby. Tonight somehow his G-tube was pulled out. I (Diane) arrived home and we managed to insert a foley cathater into the hole in his tummy in order to try and salvage the tract into his stomach. The skin is a bit of a mess, bloody and sore. Janis is with Jonny in emerg now (8pm) to try and see what they can do until we can get him into IGT (hopefully tomorrow) to have his G-tube replaced. Janis called to say that poor Jonny started crying the minute he saw a nurse. He is in amazing spirits though. And is so so incredibly beautiful. We'll keep you posted about how everything goes. At these moments I remember how grateful I am for this website. FEB 20, 2008 - Cabin Trip - This past weekend our little family headed to our cabin in the woods. It has no hydro or water so we haven't been able to stay overnight since Jonny has been born (we needed electricity for his feeding pump). Well, this Saturday we did it. Because Jonathan is only on his feeding pump for shorter boluses now, the battery stayed charged the whole night. Also, Jonathan is now getting his 100 cc bolus in half an hour! This would have been unthinkable a month ago. We are so proud of him. Still working on the oral feeds. Not a ton of progress there yet. But he is interested in the taste of everthing, unlike big brother Eli. There was a power outage this weekend while we were at a neighbour's and Eli said that God made the power go out so that we could save the polar bears. (The concepts of Global Warming and Heavenly Ominipotence all in one sentence). p.s. Thank you all for your lovely messages to six-year-old Stephanie. She adored them. FEB 19, 2008 - Diane's column from Saturday's Toronto Star in case you missed it....In the Thick of It: Miraculous Recovery Inspires Fund http://www.thestar.com/article/302937 FEB 14, 2008 - Valentines Day and Stephanie's Birthday - Some of you may know or have heard us speak about Eli's friend, and Jonathan's soulmate, Stephanie. Stephanie was born with a giant O in 2002 and is turning 6 years old today on Valentines Day. After a very difficult year in hospital Stephie finally got out in January and was home. Then on Sunday her j tube came out and she had to be re-admitted. This is very hard on her family and especially on Stephie, having to once again spend another birthday in hospital. So, I was hoping we could rally our energy and love and send as many supportive Happy Birthday Messages to Stephanie as possible today. She may not be able to have a birthday party with friends at home but at least we can let her know how many people from all over the world are thinking of her and wishing her well on her special day. Thanks for your help with this and for spreading the word. Carepages is www.carepages.com and Her carepage name is: StephiesPage2006. http://www.thestar.com/article/298508 P.S. Sending our best wishes out to Saskatoon to little David with a giant O who is having quite a struggle. We are all wishing for him to come through healthy and well.
FEB 6, 2008 - Progress - Jonathan is now getting 100cc's of formula in 40 minutes! He is managing these bolus feeds really well, despite having a lousy cold. We're all recovering from it, and grateful that it hit after the G-tube was in. Jonny has learned the ASL sign for "book" from our wonderful respite worker, Heather. He does the sign when he wants to read and he actually said "ook" the other day! His crawling is fast and he stands unassisted for a few seconds before he reaches for something. He took two tiny steps without holding on to anything the other day, but that hasn't been repeated. He is getting wonderfully demanding - he will shove our hands out the way if he wants to go somewhere, and he yells in his own baby way when we're doing something he's not into - like a diaper change. p.s. Eli took Jonathan to "show and share" today. It was fantastic. He told everyone that Jonathan is stronger than him (Jonny has this game where he "pushes" Eli across the room), and that Jonathan is Eli's favourite person. Eli also said that when Jonathan is crying, Eli comes to his rescue, and distracts him and makes him laugh so he feels better. He also told the class how old Jonathan was and then pointed to me (Diane) and said, "and this person is fort-" Stop! stop! I interrupted to no avail. FEB 1, 2008 - Anniversary - One year ago today Jonathan had his spontaneous bowel perforation and in a matter of moments we came closer to losing him than we ever have before or since. It's a day that I will never forget. Everything that held me stable in this world was flipped upside down and shaken like a snow globe. I have spent many moments here and there today reflecting back and saying quiet thank yous to god or the universe or Jonathans guardian angels or whoever or whatever saved his life that day. How he ever came out of that O.R. - with his bowel intact no less - we will never know. But I have thought deeply and with gratitude about each and every medical professional who helped him, especially his nurses in NICU, his NPs, his RTs, his anesthesiologist and of course, his surgeons. I was going to send everyone flowers on Jonathan's birthday but I think we might need to send something out to honour this day - his "perf" day - because it is the day every year that we can really appreciate him being here with us in this world. JAN 31, 2008 - 100CC/HR - Sorry it's taken so long to update this site. We were having some trouble connecting, but I think I accidentally fixed it. Jonny has had an unbelievable week. He's progressed on his bolus feeds to 100cc's of Peptamen Jr an hour. This is twice what he got by GJ tube. He gets 4 boluses a day - one of which is in the early morning and one at bedtime, so he is off the pump in the day much more! And none too soon. He is getting more mobile - he's acting like he has been liberated from that GJ tube. Our next step is to decrease the time it takes to get the 100cc's into him from an hour to half an hour - more like eating a real meal. We are also to try and increase his oral feeds. This will be a challenge, but we'll take it slow. He's tolerating everything remakably AND both he and Eli (and now Janis) have a killer cold. Despite his cold, Jonny has managed to keep all his feeds in his tummy! We bet that Jonathan will be the first one of us to do a one-handed push-up. Jonny is still being fed at night - something we'd like to see end. We really need to get some sleep. However, this week, we don't know if Jonny's sleep is so disrupted (I was up 5 times last night before midnight) because of tummy issues or the bad cold. Jonathan also had his developmental follow-up through NICU and they were amazed at his improvement. He left the hospital in August at only 5.5 kilos (he now weighs 8.8), couldn't sit up, had no muscle tone, vomitted, collapsed lung etc. Now he practically walked into the appointment. He's still small, but mighty. He really has only had 5 months of developmental time. We are so grateful for our support workers, loving family and friends, docs, NP pals, dietician, nurses, and OT. p.s. Eli was quite feverish this week, and at one point we had him and Jonny in a wagon dragging them both home from a walk. Eli opened his eyes a slit and looked up at Jonathan and said very seriously, "Baby. I love you." JAN 23, 2008 - Home so soon! - Jonathan is home and sleeping this morning. Can you believe it? There was a chronic shortage of beds on the unit - so sad, so many really sick kids - so they had to clear out everyone they could. They figured he was doing well and since we live so close we could be there quickly (which is strange since an aspiration can happen in seconds). But I guess they were in a crunch and assessing that he'd be fine. And the good news is, he is. He had his first night on full feeds last night and despite a lot of gas and flailing about, he's done beautifully. We are all happy to have him home so soon, especially Eli. He's amazing. We'll spend today watching him carefully and learning the new feeding routine. We will remain on our regular feeding routine for a few days, if all goes well. Then, we'll be consulting with our ped and dietician to figure out how to get him to bolus feeds. It will require alot of thought and work, which we are more than happy to do at home instead of in the hospital. JAN 21, 2008 - G-Tube - At 10am this morning, Jonny's GJ tube was pulled back to a G tube. If anyone thinks that babies don't remember pain, they should think again. The minute Jonny saw an IGT nurse in their distinct hair-net, he started crying, clearly afraid, and clinging to my arm. The procedure, luckily, was fast. We got up to 5B. Jonny was put into the constant care room. It's a lot like NICU, with 4 kids to a room - loud, bright. There is nowhere for a parent to sleep - there is just a rocking chair by the bed - which is where Janis will sleep tonight. By 2-ish, a resident came by and things started rolling. Jonny got an IV. Again, he knew exactly what was happening and was very upset, but he pulled through so well. His feeds were started at 15cc's/hour, and the IV provided the rest of the fluids. We were told originally that he would stay at that volume overnight, but Dr. Wales came by and spoke to Janis. They decided that since he seemed to be doing so well on 15, that they'd try and go up on the volume by 10cc's every four hours. Jonny had been getting 52 cc's an hour by GJ at home, so that is what they're aiming for. If he handles this tonight, by morning he should be at his full volume. Tonight is crucial. It may be a challenge, because he's lying down, so his digestion isn't benefitting from gravity or activity. But he's happy and playing and so far seems to be doing very well. We are crossing our fingers! JAN 18, 2008 - Cardiology Follow-Up - Jonathan had his follow-up echo cardiogram and ECG today. He was given chloral hydrate to sedate him for the echo, as he had to remain still for 45 minutes. It was unnerving to see him sleep so still, and act a bit drunk when he woke up. The good news is that his echo looked great, his heart function looks very good, and his cardiologist doesn't feel the need to see him for another year. We also got our IGT appointment confirmed for Monday, for Jonny's G-tube. We don't know how long he will have to stay in hospital. We have hopes that it will make a big difference for him for his mobility, sleep, and eating. Admittedly, I am anxious about going back in. We break the news to Eli tonightl. Jan 18, 2008 - Amelia's Angel - From May to August 2007, when we were on the Sick Kids Cardiac Ward (4D) we had a friend next door named Amelia. Amelia was born with DiGeorge Syndrome, a rare genetic disorder that usually includes heart problems. Amelia and Jonathan shared this and other issues, like dysmotility, reflux, GJ tubes and feeding issues. Amelia was three months older than Jonathan and had spent most of her young life in hospital. Her family is from near Ottawa so her mom was often separated from family and friends (including her husband, parents and older daughter) but she rarely complained (unlike me). Really, a nicer family you could not find. I shared a lot of laughs with mom and developed a deep affection for Amelia (nickname: The Princess) who was the sweetest, strongest, most patient little girl on 4D. Last Friday I got to visit Amelia as she was back at Sick Kids for two procedures. She seemed tired and quiet that evening, but she was surprisingly longer, more physical (showing off her ballerina legs) and more grown up than the last time I'd seen her. Her eyes were bright and "crinkly" and she was clearly very connected to Mom, "talking" in their own way as moms and babies do. Amelia was due for a heart catheter insertion on Tuesday. Apparently the procedure went well. But on Wednesday little Amelia went into cardiac arrest. Yesterday I got this e-mail from Amy: "Just a short letter to tell you our sweet Amelia passed away yesterday. She did well in the cath lab and then the next morning yesterday she arrested and then she arrested 2 other times throughout the day and then the third we let her go..... I am lost and miss her more than words can say...." This was completely unexpected and still remains a shock. As I understand it, the doctors are also at a loss. Diane and I were stunned and very upset to get this news and can't express properly our sorrow and sadness for her family. They have been through so much and this just seems too much to endure. The ways of the world are a mystery to me. There is a facebook group in memory of Amelia and supporting the family. Please consider sending a supportive word. I know that posts are welcome and appreciated by the family.The name of the group is Amelia's Angel.
Jan 13, 2008 - Crawl, sit-up, and finish - Jonny is crawling. Even we didn't think he'd be able to do it. It's sort of a scooty-crawl, but it works! We are switching to a new formula in hopes that we can get more time off his feeding pump, because now we have to follow him around with his tube and backpack. Bit hazardous. He also can finally get himself to a seated position by himself - he used to just be "turtled" on his back once he was lying down. Now, he turns over onto his STOMACH, and pushes himself to sitting! And the latest today is that, as with Eli, we've been using ASL sign-language for a few words, like "more" and "finish". Today he looked at us while we were feeding him and did a perfect "finish" sign! His spirit is mighty and funny and he grabs and flings things just like any other one year old. Other news is that on Friday he has a follow-up echo-cardiogram to see how his heart function is. Then on Monday the 21st, unless we're bumped, he goes into hospital to have his GJ tube pulled back to a G-tube. His pediatrician talked to the surgeon who will be overseeing it and asked that we do whatever is necessary to spend as little time as possible in the hospital. Amen. Heiko's funeral last Tuesday was devastating and beautiful. Please send your gentle vibes to his family. JAN 5, 2008 - In The Thick Of It - Diane has a new column in The Toronto Star. It started today and will run every two weeks on Saturdays in the Life Section. The first article features Jonathan. Congratulations Diane! IN THE THICK OF IT - Giving up not an option, so laugh - Jan 05, 2008 Diane Flacks This column inaugurates a regular feature by Diane Flacks, running every two weeks, paying tribute to the courage of ordinary people caught in the throes of extraordinary challenges JAN 4, 2008 - Thinking of Heiko - I want to send out my condolences again to Don and Gabrielle and the many, many people who loved Heiko. We are thinking of you everyday. As my mother said, "There's no words to express the pain his family must be feeling - children are not supposed to go before their parents .........." Heiko's funeral will be on Tuesday at Trinity-St. Pauls Church on Bloor street. JAN 3, 2008 - Goodbye Heiko - We have the terrible and sad news that dear, sweet Heiko passed away early this morning surrounded by his loving family. Heaven has another beautiful angel, much too soon. He was 4 years old. My thoughts and prayers are with his family. This is what I posted on their carepage. It was all I could think of to say (words don't come easily at a time like this): Don, Gabrielle, Lang, Heidi, Christine and all of beautiful Heiko's family; This is unfathomable and inconceivable. We send you our love and profound sympathy. We can't imagine your grief and pain right now. We are so sorry. You are the most amazing family. If there is anything at all you need, anything we can do...... For those of you who have been following his family's journey, notes of sympathy can be posted on his carepage (www.carepages.com name: HeikosPage). I'm sure they are appreciated at this time. JAN 2, 2008 - A Truly New Year - We are back from our cabin. It was magical! Janis, Eli, Jonny and I stayed overnight in the hotel in Bancroft (we needed hydro for Jonny's pump), while Netty and Parker stayed in our cabin at night. We all got together to snowshoe, toboggan, eat and play in the day. It was so quiet. Jonny had a wonderful time and Eli grew in independence and displayed a genuine love of nature - something we've longed for. We had some tube issues with Jonny, a reminder that any variable can become a problem. Janis said she always has one foot out the door headed to emerg. But thankfully, all is well. p.s. Guess who can pull himself to standing?? Please send your prayers and hopes to Heiko and his family, who is back in hospital. DEC 26, 2007 - Merry Christmas and New Website - Belated Merry Christmas and welcome to Jonathan's new website. Thank you to Hillary Carlip for making it happen. As you can tell Hillary re-designed the Jon-a-thon site so that we could use it for our regular site. This one is easier to read and navigate and without all the behind-the-scenes head-aches that the web wizard gave us. Explore and enjoy and please give feedback (oh, I know that the feedback still links to the old site if you press home - Hillary will fix that when she gets home from holiday - but we can still read the postings). Thanks and may your New Year be filled with happiness and good luck. Speaking of which, we are about to leave for another trip up north to walk in the snow and breathe clean air. Wish us well. We'll let you know if we survive when we get home. DEC 21, 2007 - Sound and Motion - Sorry we haven't posted for a bit. Things are good. Jonny continues to take steps (literally) with his cruising. He is loving to walk by holding our hands. It is so cute. And he's making more consonant sounds, as well as this bizarre glottal noise like Inuit throat singing. I swear. This afternoon, I heard him say "Ma ma" (although not in context). DEC 12, 2007 - G-Tube Date I just got the call about the date for Jonny's G-tube. January 21st at 8:30 am, with the proviso that we can be bumped at any time. They said to expect a stay of "3-5" days, but "Jonathan will determine how long he needs to stay in hospital." I personally (Diane) am feeling excited - forward motion, potential positive steps for Jonny. But I am also apprehensive and a bit light-headed. Will the G-tube work? Will it cause Jonny more problems? How will this family cope with another hospitalization - Eli especially. Janis just got back to work - how will she/we manage? Fingers crossed for all of it. (By the way, Janis' program, CTYS, received the 2007 Toronto Human Rights Award on Monday. Jonny, Eli and I were there to cheer Janis and her team on. Eli met the Mayor, who "has white hair.") DEC 12, 2007 - Found Our Fund Janis here. Diane and I have been taking turns sleeping in the spare room so that one of us can get some better sleep for the day ahead. I really wish Jonathan could have less pain or discomfort in the night. Sometimes he is up 10 or 12 times and the lack of sleep can't be good for him (I know it's not good for us). I'm hopeful that when we switch him to the G-tube (as opposed to the GJ that he has now) he will do better. Yesterday, Jonathan had a bit of a pump issue happen. This is how Diane described it to a friend: "Yesterday Jonathan¹s feeding pump stopped working. And no matter what I tried, I couldn¹t fix it. My heart was pounding and I was sweating imagining how quickly I¹d have to get to Sick Kids before he dehydrated; who in the world would I talk to about a new pump (they¹re $5000.00 and would it be covered?); would I have to wait and who would pick up Eli from school; but mostly how desperate it feels to have your child's life dependent on the vagaries of a mechanical device. Then, I tried a new feed bottle for the pump, and PHEW, it worked. And we moved on and had a great day". I've been thinking of investing in a new pump anyway, a smaller, lighter one that would work better for him. With the Jon-a-thon funds we could afford it. Thanks again to everyone who has supported us in that way. Yesterday I was musing over the cost of his formula - it's $33 per can and he goes through a can every few days. Then there's his meds and the high cost of respite and nursing care. I often wonder - how do others do it? How do those without the good fortune, good insurance and support we've had make it through with a special needs child? I really don't know. Speaking of the Jon-a-thon, I want to share that we've found a way to use some of the proceeds to support Sick Kids. The Sasha Bella Fund - After much research and exploration and talking with people at the Sick Kids Foundation, We have found the Fund that I think addresses the same goals and priorities that Diane and I have for helping to affect change at Sick Kids. It's called the Sasha Bella Fund (including the Sasha Bella Award for Family Centred Care at Sick Kids). It's named after a beautiful little girl named Sasha Bella Stein-Blumberg. Her parents set up the Fund after she passed away in June 2006. They do great work, particularly in encouraging family-centred care in the intensive units of Sick Kids (we're gently encouraging the expansion of their programs into the NICU), encouraging famiy centred practise on the general units, advancing palliative care and support for parents and promoting interprofessional education. It's a fund and a cause we are proud to support and we encourage everyone to take a closer look: http://sashabella.com/ DEC 10, 2007 - Bwab bwab Jonny is nothing if not perceptive. The last few days, with some encouragement from us, advice from our OT, and a fantastic book called "It Takes Two To Talk", Jonathan has started using his first consonants. Specifically, we've been hearing alot of "BAAHbwab bwab bahb." Eli thinks it's hilarious. Jonny's also standing with more assurance, and trying very hard to crawl and cruise. The nights are still rough - harder on us adults than Jonny, thankfully. He's up with pain, but it's not as bad as it has been. Janis has gotten through her first week of work incredibly well. I MCed a large event, my first since before Jonny was born; and Eli and Janis were in the audience. We are amazed at how life progresses. We feel like we have angels on our shoulders. DEC 6, 2007 - Angels I (Janis) am feeling a little emotional right now (stunned, gobsmacked) because we have just received a gift out of the blue, a financial gift, that we weren’t expecting at all and has blown us away. Just as the respite fund was ending. Thank you doesn't seem enough. Honestly, the kindness of people this year to Jonathan, and our family, has been beyond what I’ve ever known, or could have imagined. I’ve learned that there are a lot of really good people out there. Thoughtful, generous, kind, compassionate people who actively reach out to others (even if they don’t know them) to offer help in hard times. People who share what they have without asking for anything in return. People who love and care for a brave little baby boy they’ve never even met. When he gets older we will teach Jonathan (and Eli) what we have experienced this year, the beautiful and the hard. We will teach them that goodness, kindness and love are everywhere. For every painful time, there is hope. It can be a hard world and a tough world and there’s no question there is suffering and unfairness, but, we will tell them, don’t succumb to cynicism, don’t lose faith, because the secret is that angels abound. Look at what people have done for you and for us with open hearts. And as you grow up, you can do the same. P.S. - thank you to everyone who came and made Hannukah so lovely for the kids this week. What a great time. DEC 5, 2007 - Happy Hannukkah Tonight we celebrate miracles - little ones and ordinary ones too. Like our Jonny, and Stephanie, Sammy, Heiko, Marco, Angelo, Shelby, Julian, Amelia, Julia and all our friends from this past year. Janis started work on Monday and so far so good. She joked that after a year away, she feels a hundred years older. I think it's a bit like being the wolf child, who escapes the cave and comes into the light. Everything is loud and bright. We have been so isolated. But Janis is amazing, and her workplace has been very compassionate. It's a big adjustment. I am also starting to get back to what it is that I do, so we're really grateful for our nurses and respite workers. We feel secure with them, and Jonny loves them. He's still gaining weight; getting more of that fine auburn hair; cutting two more teeth; and lately he's becoming much more curious and strong. He likes to try and stand, he demands to be shown things, he's been switching the light on and off. We've been trying something new at night - we turn off his feeds for a number of hours. It helps him sleep for longer stretches, up to 3 or 4 hours at a time. We are up in between to turn the feeding pump back on, but it somehow is helping us all. The problem, though, is then he's off less in the day. So his eating of solid foods has not increased as he's not as hungry. It's a fine balance. Janis' concerns right now are around his language. He is still not making consonant sounds, much less any words. He communicates very well non-verbally, but we can definitely feel the lag there. He also is frustrated that he can't sit up by himself. Without those abdominal muscles in front, he gets stuck on his back and it bothers him. Eli is doing great at school, and is being a wonderful big brother. He's so unique as he navigates being 5. Every single day I can clearly remember where we were at this time last year - my mother making latkes for the nurses in NICU. Our family starting to understand "long haul". Our care team coming to the rescue. All of our community sustaining us with food and kindness. We would not be here without you. NOV 26, 2007 - Heart Update The other day a friend said to me (Janis), "You never mention his heart. Is that because it's fixed now?" Well, yes and no. Jonathan will always be a cardiac baby/boy because his heart will never be "normal" like ours and he will always have some vulnerabilities. He still has an overriding aorta but it's better now since surgery. The right side of his heart is still thicker than the left but they expect this to reduce over time now that it doesn't have to work so hard to pump the blood (the surgery released the tight pressures of the pulmonary stenosis). In addition he has a small ASD (a hole between the atria) and, most concerning to me, a pulmonary valve that had to be cut permanently open (so it doesn't function as a valve). So, it's not totally rosey. But on the other hand, as I understand it (and hope and pray), there's no reason not to expect, with careful monitoring and attention, that this heart will do well for him long into the future. There will come a day when he will need more surgery. As his body grows his heart may need help adjusting. But cardiovacular technology is improving quickly all the time so who can predict the future. Diane here: Our big issue at the moment is that he is scheduled to have his GJ pulled back to a G-tube in January. This means a hospital stay but I refuse to think about that part right now. Until then, our goal is to try and get him to take more volume of food into his stomach (to help stretch it in anticipation of being filled) and to try and convince him to take in liquids. Jonny's nights are still rough, but better than they had been. He's so happy in the daytime and he really enjoys standing (with assistance). Janis returns to work on Monday for the first time. We are filled with anticipation. It will be a big change for all of us. We'll keep you posted. NOV 22, 2007 - Speech and Language Therapy Jonny went to a Pedeatrician appt on Monday and he is generally doing well except for his continued pain at night. The doctor offered a few ideas but also admitted that there is not much to do given he is an O baby on continuous feeds. We're going to experiment with a few ideas and hope they work. First and foremost for Jonathan's comfort but also I (Janis) am going back to work in a couple of weeks and won't be able to function if I'm up ten times every night. Otherwise, Jonathan is working hard to catch up developmentally, and Dr. Campbell would like to see more progress in his eating, drinking, mobility and especially what he called a "language delay". He is a very quiet boy generally and is not saying the beginner words or sounds expected of this age. I just think he's letting Eli do all the talking but the doctor recommended we put him on the list at the Toronto Pre-school Speech and Language Centre. He said it's nothing to worry too much about, that developmental and language delays should be expected in a boy who's had a start to life like Jonathan. But with early interventions perhaps we can help him catch up faster. I see him working so hard everyday, as a mom, I'm somewhat ambivalent about adding more to his (and our) plate, but I guess it's probably the best thing to do.
NOV 21, 2007 - Birthday Party We had a big birthday bash for Jonathan on Sunday Nov 18th and it was just wonderful. Loads of people came by to give hugs, love and good wishes to the little miracle boy, who remained happy and delightful throughout the day. Ali made incredibly delicious food (thank you again), Netty, Heather, Jane and Roselle helped set up and clean up, Eli was a fun and considerate little host, and Diane and I got to just bathe in the glow of good family, good friends and a tough year over. At one point it kind of got a bit chaotic (if you were there between 3:00 and 5:00 you know what I mean) but in a way that, for me, just was so wonderful. The whole house was full of kids and babies and parents and friends and noise. For one who has felt socially disconnected this past year being stuck in the hospital, it was real life and it was just beautiful. Thank you to everyone who came and made the day so special. BTW - I have to mention that there were two very special guests at the party. Heiko, who've I've written about here, is home now and his mom and aunties braved germs and stress and brought him to our house for Jonny's big day. It was so good to see him outside of the hospital I nearly started to cry. In addition, our NICU room mate Sammy also made the trek with his parents from Brooklyn (no, not New York, somewhere near Oshawa, I think). One day soon, I want to see Miss Stephanie climbing the stairs of our front porch. NOV 14, 2007 - THE BIG DAY!!!!! It feels almost anti-climactic....but here we are. One year later. This was the day one year ago that the wonderful Mr. Jonathan, JJ, Jonny, Jon-Boy, Cutie-Head, Toe-Toe, Noochie, Superheroe Baby Diaper entered this world at Mount Sinai Hospital and was rushed within an hour over to Sick Kids. This day one year ago started it all. I can't believe he made it. I can't believe WE made it. To celebrate and thank everyone who gave support and friendship and love, we are hosting an open drop-in this Sunday Nov 18th after 12:00 noon. All welcome. Drinks, food and the man of the hour will be there. RSVP at shmactor@sympatico.ca if you need the address. Oh, and to mark this day I have posted a few pics. Two of him at his birth (warning quite graphic) and two from this week. I find the remarkable transformation just amazing. NOV. 10, 2007 - Best Birthday This Saturday was my (xx) birthday. It was hands-down one of the best. Much of my family were here and Janis made a delicious lunch. And I had my two boys and Janis all in our home together. This year will be so much happier all around than last. And I hope, as filled with miracles. We are so grateful to all of you for helping to get us to this far. Jonny's birthday is in a few days and Janis is reliving every moment. Please remember about the drop-in on the 18th! NOV 9, 2007 - Memories and Letters As we get closer to Jonathan's birthday, memories from this long year become incredibly vivid. We remember the times he "circled the drain" in the words of a nurse. We also remember him flat on his back in the silo, and batting his toys during rounds and drawing all the doctors to him with his happy loving smile. Here is a letter Janis wrote to Jonathan last night when she couldn't sleep (sleep is still a precious and rare commodity in our house). We share it with you because you are also precious to us. Thank you for hanging in this year: November
9, 2007 - An Open letter to Jonathan Love, NOV. 5, 2007 - New tube Jonny did well all weekend. Janis took him to IGT this afternoon to replace his tube. From all accounts it was a long and brutal ordeal. But the new tube is in and he's asleep after a big dinner of yogurt and apple sauce. NOV. 3, 2007 - Tube Misshap Tonight we are watching our Jonny very closely. Jonny's tube got pulled out a bit today - the coiled part (or "pig tail") came out of his stomach and I (Diane) pushed it back in. The pig tail was dripping formula a bit when it came out, and so was a part of the tube that is external. So, with Dan and Kelly's guidance, we literally covered the external leak with plumber's tape - hopefully ensuring that the formula that goes through his tube actually gets into his body. I worry that the pig tail is probably leaking a bit into his stomach, so we dropped the volume of his feeds in case it is- since we're not sure how much his tummy can handle. We have to watch and see how he is. If he vomits repeatedly, or if he's not peeing (not getting enough fluid) then we'll take him to emerg. But we do not want to rush to emerg just to be told to go home until IGT comes in on Monday to fix the tube. So we're waiting and watching. We feel sick, but Jonny's spirits are brilliant. He's playing, happy, eating yogurt and baby food. It's a reminder of how close to "real life" we are; and also how very far. NOV 2, 2007 - No More Bandage! It's two weeks until Jonathan's
first birthday (you're all coming to the party on November 18th,
right?? See the Oct. 19th post for info) and for the first time
in his life, Jonny's tummy does not have a dressing on it. His omphalocele
is completely covered in skin that he grew by himself!! It's lumpy,
scarred skin, but, baby, it is skin! The new anti-reflux med, prevacid, seems to maybe be making a bit
of a difference. Jonny had a better tummy night last night, although
this cold is keeping him and all of us, awake. The other news is
that we are now slowly moving toward a regular formula; and Mister
Chubs weighs almost 7 kilos! OCT 26, 2007 - Nursing Shortage You'll notice we are posting less frequently now that we have been home two months and things are calming down. It's a great development. Life is more normal and crises are less frequent so there's less "news", I'm happy to report. Jonathan has had his med change (from omeprazole to prevacid) but it's really too early to say whether it is helping with the vomiting and reflux. I (Janis) am really crossing my fingers on this one, as he deserves some relief - especially at night. Last night he was up so many times, I stopped counting at nine. But thank goodness he did not have one of his throwing-up fits. His omphalocele is still open on the very top but looking great and requiring smaller and smaller bandages. The skin around the wound is looking less pink and raw and more like real skin. And in the development area, his O.T. is thrilled with his recent ability to sort of turn over and support himself a bit with his hands. She thinks he'd doing great so we ride on her enthusiasm, and look forward to the day he can crawl or shuffle or (imagine!) walk by himself. The main difficulty we're dealing with right now is the homecare nursing shortage (which you may have read about in The Toronto Star last week). Our wonderful nurse Yvette has had her hours with Jonathan cut from 16 to 8 because she has another assignment. We're getting a new nurse next week apparently, named Julie, but that still won't cover all our hours so we may need a third person. This is concerning for two reasons: 1) we don't like having so many people come and go in our children's lives, and 2) I am scheduled to be back at work in about a month and we need that coverage (at least 20 hours per week) to make it work. Jonathan is such a generally happy little baby and can appear almost perfectly normal (especially if he is dressed and "unplugged"). Some people have asked why he needs a nurse. Other than the obvious (his feeding tube, meds, dressing changes, heart and lung monitoring) the thing about Jonathan is that when he does turn down, he can get very sick very quickly. Though he is well most of the time - thank God - we always need someone with him (or close by) who knows his issues and can react quickly and confidently if he starts to get sick. I'm glad to say we haven't had to rush him to emerg in a while but the memory is still quite fresh. For the forseeable future, if we are to get any break away, he needs nursing care. Our only challenge now is to find and keep good nurses. We'll let you know how it goes. OCT. 22, 2007 - Pediatrician Visit We met with Jonny's pediatrician. Jonathan has put on more weight and his head circumfrence is off the charts - meaning big brain growth! We're going to try a new anti-reflux med to see if it will help with the rough nights and vomitting. Dr. Campbell was really impressed with Jonathan's size and vigour, and agreed with the G-tube plan. We really need to work on oral feeds until then. We also will soon try and get Jonathan on a regular formula and off pregestimil totally. That will be nice, even symbolically. OCT. 19, 2007 - JONNY'S BIG DAY - MARK YOUR CALENDARS, BLACKBERRIES, TRIOS, CAVE-WALLS! Many times in this long journey, we've
imagined celebrating Jonny's first birthday. There was a dark point
when we thought we might be marking it at Sick Kids. But no, we're
all home together, and, despite his medical challenges, he is doing
so well! We invite all of you to a drop-in to let us thank you for
your support, and to celebrate Jonny's first year of life. He made
it!! And so did we!! This invite extends to you, too - NICU, 4D,
CCU folks, and all of you who read this blog. You have all been
our life-line and we want to thank you with food and drink and hugs
(anti-septic of course). OCT. 18, 2007 - Rough Night Poor Jonny had a rough one last night. Up at least every hour, crying in pain. Then up much of the early morning until he vomitted mucusy fluid, screaming in panic all the while. During the day he was a bit fussy - and we realized he's getting another tooth. But we've stopped increasing the volume in his GJ until he settles. He was not vomitting at all for a while there, so this is upsetting. We think it might be: a) the new volume of feeds, b) teething, c) he's ore active, so when he throws his little self into new positions, his tummy goes "waaaaaht?". Wish us luck tonight. Oh by the way, the whole house is full of fans and dehumdifiers and holes in walls - drying out the water damage. Yoiks. OCT. 16, 2007 - Doctor Fecteau Well, Jonny and I (Janis) saw Dr. Fecteau at Sick Kids yesterday. She's his General Surgeon and responsible for the care and management of his omphalocele and feeding. The first thing to report is that she seemed really, really pleased to see him. She commented many times on his good colour and size and the way he was sitting up and smiling. She had a Fellow with her and she tried to convey the size and scope of his "O" before, but in the end I think only those of us who have seen it (when he was first born, through those first months, and then in the silo) can appreciate how dramatic the change has been. She has scheduled him in for January to have his GJ pulled back to a G-tube which is good news. I'm very pleased to hear this and I believe he will do just fine. It may involve up to a week as in inpatient so we must plan ahead for Eli's care. She wants us to keep working on getting food and liquids into his mouth (and stomach) until then. In addition she indicated that, as his O is not interfering with his ability to move, she would like to hold off on the first closure surgery, perhaps until he is two or even older. She described the surgery to me in detail and then said, in her Quebecois accent, "so you can see, it is not a walk in the park". She feels that we should not rush anything to ensure that when it is done, it is a success. I couldn't agree more. In the mean time we will just keep taking care of his O and make sure he never gets hit or falls hard on his tummy. I am so proud of him for all the progress he is making despite his challenges! He is such a special little boy. OCT 15, 2007 - Flood Just a quick post to say that our weekend up north was glorious. Just being there was an enormous milestone for our family. Very moving. Our dear friend up there, Jane, hosted us like kings and queens (in big boots). Kelly and Dan were amazing with the boys and enjoyed the fall colours and natural air. Jonny was fascinated by everything (especially the animals on Keith and Deb's farm). Eli played and played with Jane's friend Norman (11), loved up the kittens in the barn at Keiths, helped me make a fire, and rediscovered our little cabin. When we got back last night at 10:30 pm we were greeted by a gaping hole in our kitchen ceiling. What a ride! The plumber has been here an hour now and can't figure out where the water came from. But we have to rush off to Sick Kids asap! Check out the photos. Love, Diane OCT 12, 2007 - Cabin This weekend we are going up to our little
cabin in the woods up north for the first time since July 2006.
We don't even know if it's still standing! We need hydro for Jonathan's
feeding pump (the cabin has no hydro or water), so we're going to
stay in a hotel and with friends at night, and visit the cabin in
the day. When Janis originally suggested this idea, I was not game
at all. After the tube incident, I was terrified something could
happen. Since the end of Janis' pregnancy, we've rarely left downtown
Toronto - either because Jonny was in hospital, or because we wanted
to be close to Sick Kids. But then we started looking at our old
pictures of Eli and we realized how much of his life has been spent
going on adventures with us. He's been stuck here in the city all
year, and we as a family have not had much contact with nature.
This trip is a huge deal, but I believe Jonathan is well enough
now to handle this and I believe it's time. (We'll let you know
how it goes!) p.s. here is the song that marvelous Kristen and SplashNBoots made for Eli!!! PLEASE NOTE: Eli is adamant that only people who know that he has a secret superhero identity (Power Eli) should know about this song, so unless he tells you about it first, pretend you don't know. Meanwhile-- enjoy! Go to this address and then click where it says "click here to start download". Thank you, Timetje for the link! http://www.mediafire.com/?dezsb4hsyht OCT 8, 2007 - Superhero CD Jonathan's cold is slowly getting better.
We got him in a Jolly Jumper, in which he's beginning to delicately
bounce. He's also really into yelling like a baby dinosaur. Tomorrow
is a big day because it marks the end of the breastmilk that we've
had stored in a freezer for all these months. Janis deserves a superhero
medal!! Speaking of superheroes, back in July, my friend Kristen
said that she wanted to do something special for Eli's birthday.
Kristen is a mom of 2 1/2 year old twins and a newborn baby girl,
so "special" to me would mean waking up. She asked me
to write her a few unique things about Eli. Well, I sent her a four
page email. This weekend, Kristen dropped off a CD. On it was a
song, incorporating much of my long missive, written just for Eli,
entitled "Eli the superhero!" A fabulous kids band, called
Splash N Boots (http://www.splashnboots.com/) collaborated with
Kristen and created this gorgeous song. Kristen and I told Eli that
Spiderman was a part of it, and Eli decided that the man's voice
on the CD is Spiderman's, but only when he is Peter Parker. Janis
and I listened to the CD with and tears in our eyes. Eli was surprised/delighted/mystified/proud.
Tonight, I feel that the Purdy-Flacks family is the luckiest family
on earth because we have friends like Kristen and all of you. OCT 3, 2007 - Frog Legs Jonathan is doing really well despite the cold, rattling breathing and (less) frequent coughs. Generally his spirits and smiles are grand. He seems a bit worn out to me today, however, a bit low energy, so we are just taking it easy and not pushing him. When his O.T. Amanda came by he was sleepy so we opted for another nap instead of his strength exercises. That said, we continue everyday to try to find ways to get him to grow stronger and get food into his mouth. My mothers intuition tells me that he's going to get increasingly more frustrated if he can't find a way to self-propel. He's almost 11 months old and, left to his own devices, he is kind of stuck on his back. He can't roll onto his tummy, or get onto his knees or get himself into the sitting position without help. And if he's in a sitting position and falls sideways he's stuck and will cry, I think, out of anger and frustration more than anything. So, that is what we want to help him with. Growing his core and legs stronger, gettting him out of the frog leg position, and helping him find ways to control his own movements. I think tomorrow we will buy him a jolly jumper. BTW - Nurse Yvette now comes for four hours per day four days a week and is amazing. You can tell she has lots of experience with special needs infants and Jonny loves her. She's also bonding very well with little "E-L-I" (as she calls him). There is a big appt coming up on Oct 15th with Jonathan's General Surgeon Dr. Fecteau - we will find out then what plans she has for his feeding tube and next surgery. OCT. 2, 2007 - School Blues We are very relieved that it seems that the fortification is working, and Jonny is gaining his weight back. Unfortunately, he has picked up yet another cold from Eli (first month back at school blues). Janis has it too. They both have a cough, which we are closely monitoring with our nurse, and stuffy nose. We are not getting much sleep, but Jonny is really in great spirits. (I'm a bit snippy, but that should be expected). SEPT. 28, 2007 - Weight loss, Eating, and new movement Just a quick
note to say that since Jonny started back on breastmilk and pregestimil
he's tolerated it, but he's lost a hunk of weight. We are on it.
Both our pediatrician's dietician, and Joan, our tenacious NICU
dietician, have agreed that he needs to be fortified with more calories.
Joan sent us a number of recipes to try, and some ideas for next
steps. We still feel as if our NICU family are holding our hands.
No one could know Jonathan's peculiar needs better than them. "Let's
fatten him up for winter" is Joan's motto, and I believe we
will do it. SEPT. 25, 2007 - Oral Aversion my eye I (Diane) just wanted to post a quick note to say that Jonny is continuing to improve at home. He has now eatens spoonfuls of: sweet potatoes, pablum, cream cheese, vanilla ice-cream, mashed-potatoes, and a bit of chocolate cake. These are small bites, but he is definitely interested, swallowing, and asking for a little more. It's really thrilling. We have to work on his ability to handle liquids in his mouth. We are working on his sitting, and on his frog legs, and getting him to bear weight on his legs. His nights are still rough, but his breathing is so much better. He's been off monogen and back on breastmilk/pregestimil for over a week now and seems to be tolerating it. He has also been off his contiunous feeding pump for 5 hours a day, about 3-4 hours in a stretch unplugged and tube-less! We are amazed by his progress, needless to say. And truly appreciating the help of his nurse Yvette, his care workers Heather, and Aunty Kelly (and Uncle Daniel), and his OT Amanda, who are very diligent about his overall care including his physiotherapy, medications, GJ tube and omphalocele care and his feeding plan. On another note, it's my mother, Lily Flacks birthday tomorrow. She's been such a source of support and joy for her grandsons this past year, we wanted to wish her a big Happy Birthday Safta from all. P.S. Little Stephanie has come through her 12th surgery well. It was on Monday so she's recovering now. But she's earned her new Barbie Jeep, that's for sure! Anyone who would like to can find out more and post a supportive note on her carepage. I just know it would be greatly appreciated. Once again, it's carepages.com and her page name is stephiespage2006. SEPT. 20, 2007 - Thanks I just wanted to say thank you for all of your wonderful comments and emails. Jonny is doing great. He even took a few mouthfuls of sweet potatoes today. (As any other baby might, he spit most of it out). I've posted a few new photos of Mr. Chubbs. Tomorrow is Yom Kippur - some cynics may say it's another Jewish gut-up food-fest, but this year Eli told us (with great, expansive, miming actions) the story of Jonah and the big fish, and how we learn to say sorry and to help make things better for others on Yom Kippur. If you have a moment, please send your strength to Stephanie, who is five years old and is suddenly scheduled for her 12th surgery on Monday. We are all holding your hands, Denise and Stephanie. SEPT 18, 2007 - Friends in Sick Kids Poor Jonathan did have a rough go in IGT - a lot of crying from both pain and fear - but once it was over he was okay again (a bit tired and sore, of course, but spirits back up). The IGT team did a great job and were very quick and professional. While we were sitting in the waiting room, Cynthia, one of our favourite nurses from NICU came bursting in to say hi. It was great. She swung Jonny up out of his stroller, exclaimed at his size and beauty, and got him laughing with kisses. It was lovely to see her and to see Jonathan through her eyes - how much healthier he is than the last time she saw him. In the outside world Jonathan is beautiful too, but he's small, pale, and has tubes, scars and bandages. In Sick Kids people - especially people who know his history and conditions - go ga-ga over his size and health! During our visit today we must have seen about 10 people who know Jonny including nurses Carolyn, Kelly, Allison, and Janna, NP Carol, Dieticians Laura and Joan, and Heidi (Heiko's aunt). All of them were really enthusiastic about Jonny - "Look who's gotten all chubby!". I admit, I couldn't help showing off a bit ("look at his head control", "did you see how long he can sit up for?", "watch how he can blow kisses!"). I never thought I'd say this but visiting Sick Kids today was really fun. Thanks to everyone who took a moment out of their busy day for a visit. Heiko - Special thanks to Heidi who made time to grab a coffee and really update me on the latest re: Heiko's progress. He continues to amaze the doctors as his brain fungal infection is actually reducing, and the leukemia remains in remission, but lately he's been battling a bad cold/flu which is wiping him out and could be dangerous if it gets into his lungs. He also needs to build up his physical strength. Please if you have a moment to spare, send a prayer or a good wish for Heiko - for his cold to go away, his infection to reduce completely and for his strength and energy to return full force. SEPT 18, 2007, 1PM - GJ replaced Poor Jonathan, the minute he saw IGT he started to scream. The procedure was fast and they took him in pretty quickly. As it turns out, the tube was not in his stomach, it was still in his intestines. So, another crisis over - Janis and I the worse for wear, and Jonny smiling, blowing kisses, grabbing noses and loving life. This has again driven home, though, how fragile our situation can become, so suddenly. We are now doubly determined, since his chylothorax has been cleared, to get him to try to take more in orally and use his stomach - working toward getting rid of a tube, G or GJ one day all together! At the moment we can only imagine that, but we have to do what we can to make it happen. p.s. Although I know that this truly was an accident (the tube had been jammed in his car seat, there was no way I could know that etc), as a mom, when something like this happens, you just want to bang yourself in the head, and puke. SEPT 18, 2007 - Back to Emerg Jonathan's GJ tube pulled out (not all the way but out about 7 inches) as Diane was taking him out of his car seat at 5:00 pm last night. It was caught on something and she felt that sickening yank as she lifted him up. Oh no, not again! We got him out okay, took one look and then immediately put him back in, loaded up the diaper bag and Diane headed off to Sick Kids emergency for what we knew would be a long night. They did an x-ray at emerg and found that there was still tube inside and it not coiled. The radiologist thought it was far enough in that they should keep using it rather than taking it out and putting him onto an IV fluid overnight. They tested him with pedialyte and it went well so they turned his milk back on and sent Diane home at about 1:00 am. IGT are the only people who can fix G tube problems and they don't work at night so it was better to be sent home even for a few hours to sleep a bit rather than spend the whole night in emergency (emerg is such a crazy place). It's now morning and we are going back in for an IGT appt at 11:00 am where they will either put the old tube back in or put in a new one. The part of this story that makes me a bit crazy is this: based on the amount of tube that is out, I am convinced that the end of the tube must be in his stomach. That would mean his stomach has been handling the feeds without problem all night (in fact he's been peeing and had a nice big poop this morning). That would mean this is the fourth time that the tube has either coiled back into his stomach or been pulled back and each time his stomach has handled the volume without problem (one time the coil wasn't identified for three days so he'd been handling it for all that time!). To me this would mean that his stomach works. So, why aren't we using it? Bypassing the stomach and having a GJ comes with increased risk of intucception and stomach shrinkage and possible atrophy. I really wish that today, since they're in there anyway, they could pull it back and make it a G tube. But his General Surgeon doesn't want to make any changes yet, since he's growing and thriving on the GJ. Fair enough, I get it, but as a mom I worry.We let his healthy eating impulse diminuish because of lack of use and now it doesn't really exist. I don't want to do anything to cause problems with a healthy stomach if we can avoid that. He's got a stomach that by all indicators now works - why don't we let him use it? SEPT 16, 2007 - Happy Birthday Janis Today is Janis' XX birthday
(like I'm gonna tell you). This evening, while Aunty Kelly and Uncle
Daniel hung out with Eli, Jonny, and cousin Jordan, Janis and I
stole away for a long birthday walk in our neighbourhood (with our
cellphones). Janis mused that she is definitely feeling her age.
I agreed that this year has taken it out of us both (my joke is
that during the time Jonathan was in hospital Janis and I aged in
dog years, so we are now actually 71). I also was able to take the
moment to really thank Janis for bringing Jonathan into the world.
What a delightful, smily, engaged, alert, communicative, joyful
little angel boy he is. Despite everything, or maybe because of
it, he is a marvel. SEPT 15, 2007 - Sweet Little Honey Bunny Every year at Rosh Hashana, the Flacks family, among other rituals, eat apples dipped in honey. The tradition is about celebrating the season's harvest and remembering the sweet times of life. A suggestion from Eli has expanded the tradition to include wishes. As the honey is passed around, each person dips their apple slice and says a wish before biting. Last year our wishes were heavily weighted toward baby "raspberry". I was pregnant with a baby who we knew had a giant omphalocele and a four part heart defect. We were nervous that the baby would come early and be born premature with compromised lung development. I was afraid of undiagnosed associated issues. complications and infections. I worried he'd have a painful life. I was afraid he'd have long term serious disabilities. I was afraid we'd never get to bring him home from the hospital. On the other side of the coin, I also managed to hold a healthy dose of denial. Some days I truly had myself convinced that despite the odds, he'd be home from hospital in a matter of weeks, all healthy and repaired (I clearly had no idea what we were in for). But mostly there was worry. So last year many of the Rosh Hashana wishes had a common theme: "My wish is that next year we will all be here again with one more little one, healthy at our side." Well, there we were last Thursday, a year later, and I couldn't believe it. We were all sitting around the table , all relatively healthy and with TWO more little additions: our baby, now named Jonathan, ten months old, and Diane's sister Laura's new baby boy, Joel Walter, who was born this past spring. It was one of those nights where you pull back a bit unconsciously and see the scene from a distance. There was Jonathan, alive, cute, sitting on my lap blowing bubbles and kisses and enjoying his first high holidays with the family. We were all together and Eli was singing his new Hebrew songs at the top of his lungs. I may be in denial again, and I know challenges lie ahead, but I truly believe that we've made it through the worst. Life is good and it really is a miracle. SEPT 12, 2007 - Rosh Hashana Happy Jewish New Year - Or as I (Diane) like to say "Happy Jew Near". And as Eli says, "I wish your year will be good and sweet." We haven't been able to write personal thank you's to everyone, so for today we wanted to post a quote by Robert Louis Stevenson about kindness to let you all know how deeply your thoughts and wishes have impacted us this past long year, "It is the history of our kindnesses that alone makes this world tolerable. If it were not for that, for the effect of kind words, kind looks, kind letters...I should be inclined to think our life a practical jest in the worst possible spirit..." Now, that ending may be a bit dark, but there have been dark times this year, and our wonderful community has lighted our way. Shana Tova. SEPT 11, 2007 - To the Doctor Jonathan had a really bad night last night again, waking every half hour or so, screaming and crying so today Diane took him to our pedeatrician, Dr. Doug Campbell, to try to get to the bottom of it. We knew it could be related to the cold, obviously, but things like that are more worrisome when you have a child with a heart problem. Dr. Campbell is one of the best in the city - he also works at the Sick Kids NICU - and we are lucky to have him. He noted that Jonathan was clearly uncomfortable and not himself and tested for an ear infection but that was negative. He was concerned about Jonathan's increased work of breathing and loud grunting. He wanted to send him to Sick Kids emerg to see if they could get a chest x-ray immediately but in the end they tested his SAT levels - which were fine - and decided the x-ray could wait until Friday (when we have an appt with cardiology anyway). He is eager to see the results of the xray. He said Jonathan could be in distress because of the difficult breathing at night. In addition, he said, at night fluid collects in the throat and behind the eyes and feels very uncomfortable. On another note, our thoughts are on this date and all related to it including the obvious; but also the less well known - that it is the birthday of three of our favourite people - Jane, Katie and Brookie. Happy Birthday Girls. Also many thanks to Nancy Rallis, Angelo's mom, for her encouraging and helpful e-mail. SEPT 9, 2007 - Colds and Hand Washing This is taken from Diane's e-mail
to some family today. I thought it gave a good update as to where
things are at (and let me be kind of lazy about posting since I'm
just dying to get into that bed...you'll read why in her post). Hello
All; Little Jonny was up all night with a cold. All of you who've
nursed babies overnight when they are sick remember that babies
can't breath through their mouths, so they panic when they get a
stuffed up nose. Poor Jonny -- he'd wake up, panic, scream, arch
his back, push out a fart, scream, try and suck his soo-soo, scream,
be soothed by us, scream... Unfortunately for a baby who has been
out of hospital less than 4 weeks, and with his conditions, a cold
is concerning. His right lung is still partially collapsed, his
stomach doesn't tolerate mucus in it and leads to painful awful
retching, and a bad virus can effect the tube in his intestine in
a way that I am simply not going to write about because it is not
going to happen. Janis and I know we'll all get through this small
set-back no problem. But it reminds us of the importance of protecting
Jonny from infection. Back in NICU, I had stomach flu, colds, pink-eye.
Eli had countless colds, but we never passed anything on to Jonny.
The controlled atmosphere of constant hand-washing, and hand sanitizing
saved the day. So, Eli, Janis and I are going to be vigilant in
reminding ourselves, and anyone who's in contact with Jonny and
Eli together, to please use the many hand-sanitizers in our house,
frequently. (Eli, especially is on a mission, so beware). If we
can avoid infections, and protect both boys - why not do it? At the Jewish holidays, please kindly ask your pals to do the same.
Of course, this morning, Jonny is smiling and amazing! Thank you
all for your continued support, cooperation, care and love of our
family, Diane
I (Janis) haven't posted for a while because, believe it or not, life is so busy I can barely keep up. Having Jonathan home is absolutely wonderful and I am truly loving it but, whew, it's a lot of work. And the nights have been a bit brutal lately. We're still not yet at a place where we feel good venturing too far from Sick Kids and at this point Jonathan has to be with either one of us all the time. But we hope for that to change soon. We are slowly but surely getting help in place. Heather is a wonderful MSW student who is experienced with special needs children. She is caring for Jonathan 12 hours per week and it's going just great. Both Jonathan and Eli love her to bits. We've also got some family help in the form of Kelly & Daniel, Jonathan's Aunt & Uncle, giving us support and help on the weekends. Of course family and friends are also showering the boys with love and kindness and helping when then can. But starting tomorrow, a real professional nurse is coming in during the weekdays. I'm a bit nervous because a) we requested a nurse for early mornings and/or evenings and they said, we've got one from 10 am - 1 pm, take it or leave it (there's a nursing shortage on right now apparently) So, it's really not ideal timing for us. And b) a nurse may be one too many people around for my comfort. I love people and then I also enjoy rejuvenating by being alone and/or having time alone with my family. So, having a nurse in my house four hours a day, four days a week, even when you really need the help, well, it may be a bit tough. Then again, I may love her and beg her to stay longer. I'll let you know how it goes.
Yesterday was Eli's first day at his
new school for SK. He did so well and we're really happy and hopeful.
Later, Jonny saw his pediatrician, who was "delighted"
with his progress. He's put on 3/4 of a kilogram in two weeks! He
now weighs 6.2 kg. The pediatrician thinks Jonny's screaming is
about gas pains (he noted abdominal distention from gas) and/or
night terrors. He's not as worried about the head sweats and thinks
Jonny's lungs sound clear. He said Jonathan is too active and happy
to be having heart or lung issues right now. The doc did have a
concern that Jonathan's GJ site looks red and oozy. We got a prescription
for topical antibiotic. ?The nutrition plan now is to increase his
feed volume over the next two weeks to allow him 6 hours off the
GJ tube a day; and to get him feeding more orally. Jonny is really
displaying interest in putting food in his mouth, so we're going
for it. We have a cardiology appointment next week, and hopefully
then we can start feeding him foods with fat - like breastmilk (instead
of monogen), as well as anything he wants to put in his mouth. Finally,
Jonny had to have two vaccination shots in his legs - which totally
gave me (Diane) post-traumatic octreotide flashbacks (when he had
to get it by a shot in his leg three times per day!) We're very
proud of our two brave lovely boys. SEPT 3, 2007 - Thank You Thank you for all your advice about the head sweats and night screams. The possibilities suggested range from nightmares and teething to cardiac defect issues and ear infections. So, we are going to document it more closely and then speak with his pediatrician tomorrow and his cardiologist the following week. I'll let you know what they say. But I love this network because I have read every single idea and piece of advice and it's just so helpful. Good news about Angelo. He's had his closure surgery and it went well and he's home already! What a kid (I guess it helps his mom is a nurse). How exciting that he will finally have a flat tummy like his two brothers. As for Jonny, please see the new photos. I put them up because I want to show how much weight he has gained over these three weeks at home. He's now over 6 kgs! I can't wait until September 15th - that is the magic day that his chylorthorax treatment ends. After that day, if all is well, we can feed him breastmilk and regular formula by GJ tube and just about anything he will take by mouth (which I know is not much now but at least we can get back to trying). Speaking of changes, tomorrow Eli begins SK at the Downtown Jewish Day School. What a big boy!
Jonathan has been throwing up and retching less at night which is a very good thing, but he's been doing this screaming thing lately which is really unnerving. From a sound sleep he will groan a bit and then, before we are fully awake, he will let out a full scream like a horror movie, with wild eyes and arms flailing. He'll scream once, sometimes twice, sometimes three times, while we scramble with hearts pounding to find him in the dark and figure out what's wrong. Then, most of the time, it will pass as quickly as it came. And we're left scratching our heads with wide over-tired eyes. Until it happens again. I am really confused. I've never seen him be like this with gas pain. Is it night terrors (I've read that surgical babies often have night terrors) or is it GI pain or is it something else? That and the head sweating (soaking the sheets) have us kind of stumped. AUG. 30, 2007 - Big Boy We're home almost three weeks now, and
tomorrow is the first day of September. We can't believe Eli will
be starting school next week! Our big boy. And we will miss him
so much - and more so, he will miss Jonathan. He was upset about
going to his beloved soccer camp, and other fun family engagements,
because "Jonathan won't see me all day". I (Diane) am
determined to do whatever we can to give these boys, and this family
the time it needs to be settled, together, happy. ?Some Milestones
for Jonny: He is now 5.98 kg's! The other Big Boy. For a baby who
was stuck at 4.62 kg's for three months, this is amazing. He's gained
over 700 grams in three weeks since he's been home! And he is having
full-on bubble-blowing raspberry conversations with Eli and us.
When he drops a toy, he literally yells in your face. It's fantastic!
He's also progressing well at sitting upright unaided. For a kid
who spent nine months on his back, in pain, or sedated; and who
also has no abdominal muscles (not unlike me) to be able to sit
up and balance is huge. Oral feeding is still slow. We can't wait
until the chylothorax is officially clear and we can give him fatty
foods, and breast milk again (from our deep freezer - thank you,
Vic and Harv). We also had a brief scare with his tube yesterday,
which, thankfully, we managed to unblock without having to go back
to hospital. AUG 29 - On The Other Side We are thinking every day of Stephanie and Heiko and their families who are still in hospital fighting devastating infections (among other things). They are both beating the odds but dealing with far too much. Now we are on the other side, at home, reading posts but distanced from the hospital life and feeling somehow helpless. Thank you to those who follow and post support messages on Stephanies carepage. I (Janis) know how much those messages can lift you up during difficult times. I don't know how many of you are also following Heiko as well, but if you are, you will know that as of today there was news of new lesions that are very concerning. We send prayers and love to his family. And now Angelo, who is another O baby friend of ours (not really a baby anymore since he is almost two). Angelo is going in on Thursday for his closure surgery, which will be a big deal, so we are thinking of him and his family as well. The last surgery for Angelo did not go well. I am wishing for no complications this time. I hope all goes well and he has a good recovery and is back home as soon as possible. May this be Angelo's last surgery for a very long time (maybe ever?).
Just a quick update to say that, despite his sobering follow-up appointment on Friday, Jonathan has decided that he would like to try and sit up (with help for balance), to grab his foot and put it in his mouth, and to make raspberries at me (Diane). He has also started to squeel with glee. Medically, we are holding steady with Jonathan's feeds, still dealing with head-sweats and retching (especially when he has to poop), not the greatest sleeps, and we're trying to get his itchiness under control. Janis and I are learning from our mistakes regarding his care (it really could be a full-time job). Many parents say that once they're home from hospital they suddenly "get it" that their child is really theirs. We're melding together as a family again. Janis, me, and our two boys.
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