When we met with Dominic's plastic surgeon back in Febuary, we were told that she had tentatively scheduled Dominic's cleft lip surgery for the beginning of May. I was disappointed to hear that then because that would make him 9 months old by that time. That's quite a bit later than the 3-4 months old we were initally told when he was born, and the 4-6 months they said after his heart surgeries. But it had to be accepted. His heart surgeries did put us back a bit, and I understand that, but I really want this surgery over and done with. I am starting to be concerned about the effect his cleft is having on his speech development. He is significantly behind already because of it and it seems the longer we wait for this surgery, the further it delays his development.
So it was another staggering blow to find out that it has been delayed even more. I called the Plastic Surgeon's office today because I hadn't gotten a letter stating his surgery date yet, and it was starting to concern me. Plus, I have learned the benefit of being the squeaky (albeit polite) wheel. His date has now been bumped to (still tentitively) June 8th. His 10-month birthday.
At this rate he is actually eligible to have his cleft palate surgery at this point as well. We were told 10 - 14 months for that one. But if that one is delayed as much as this one has been, we'll be lucky if we get that one done before his 2nd birthday....
Monday, March 30, 2015
Tuesday, March 24, 2015
Fighting Off Illness
It was a pretty rough weekend at our house.
It all started Thursday night when Dominic started having yellow crusties around his nose. There have been times I suspected he had little colds, but it's always so hard to tell with his cleft. The most obvious signs of having a stuffy or runny nose don't work for him because his nose doesn't hold in anything. The following morning I called his Pediatrician, because even though it wasn't really an emergency or anything, I was still pretty nervous about him getting sick. With DiGeorge, the 3rd most common difficulty is a compromised immune system (behind the heart defect and cleft) Knowing that in utero the doctors said his Thymus was underdeveloped, which plays a big part in fighting off illnesses, I have been overly concerned about him getting sick, so I wanted to talk to his Pediatrician about what to look for or be super concerned about if things got worse over the weekend. I figured that things that wouldn't have concerned me with Rosalie possibly should concern me with Dominic. Unfortunately, his Pediatrician was not in the office Friday and the only advice her admin assistant can give me is to call the health line. I've found in the past that the health line is overly cautious to the point that if I feel I need to call then they are probably going to tell me to go to emergency anyway. So I thanked her and hung up not having gotten any further with knowing what to do. So on Friday night, at about midnight when Dominic had a huge throw-up while lying in bed I was at a loss for what to do. He normally gets fed at midnight, but I hadn't fed him yet, so his tummy really should have been empty, but he threw up so much we had to change all of his bedding. It didn't take long for cuddles to put him back to sleep, but I was at a loss for where to go from there. If he just threw up was there a point in trying to feed him again right away? But now his tummy was probably empty so he would be getting hungry soon. So maybe I should feed him? Is this enough reason for concern without a fever or diarrhea coupled with it? What to do?? I figured I would give him a couple hours and then only feed him half his feed to make sure his tummy could tolerate it, which it did. I then tried to feed him again at 6:00, but he threw up a little but again so I stopped it and decided to wait until morning for his next feed.In the morning I decided to only orally feed him. No tube feeds. I figured he would know best what he could tolerate and if that meant feeding him 30 mls every hour, so be it. Thank goodness it didn't, he still ate on his approximate schedule, but only took his whole feed at suppertime. And no more throw-ups.That morning I was also feeling extremely unwell. I was completely exhausted from the night before, I didn't get much sleep between feeds, and the sleep I did get between was restless because I was worried about him. I was completely stuffed up and could barely keep my eyes open. Turned out Rosalie got sick too, but she hides it better than Dom and I do... until she pukes all over her PJs. It's almost lucky in a lot of ways that Dom and Rose were sick at the same time as me. I think if I was sick and both of them were fine Roland my lose his being so outnumbered, but because Dominic basically slept all day between feeds, and Rosalie just wanted to cuddle and watch movies, it was kinda perfect for him.Sunday Dominic and I were much better but Rosalie got worse. SHE was the one that ended up with the fever and wanted nothing more than to cuddle and sleep. We ended up putting her to bed 2 hours earlier than her normal bedtime because she was just SO wiped, and she was threatening to fall asleep on Roland while they were watching Disney movies.Yesterday we were all a bit tired, but on the mend and today we were all pretty much back to normal. Although Roland may have picked it up from us now, but his doesn't seem quite as bad.It may seem weird, but after the fact, I was kinda glad that Dominic had gotten sick. Even though he had had tests done to check his immune system and we were told in Edmonton that he didn't have any issues, I really didn't believe it. I kept having that nagging reminder of his undeveloped thymus popping around in my head. I was sure these tests would be proven wrong when he got sick, but he handled it like a champ and came out no worse on the other side. Better even, perhaps. And now that is one less thing I need to be worried about. :)
Monday, March 23, 2015
Wonder
Ok, I kinda cheated a little.
So here's a bit of backstory to this post and this book (and these novellas).
My best buddy, Erin, had recommend Wonder to me the last time we FaceTimed. She had told me she was glad that I started my reading challenge again with a reasonable amount of books and suggested a book she had just read and thought I would like. It seemed perfect for getting back into reading. It was relatively short, a Young Adult novel, and it was about a boy with a Craniofacial abnormality (and a bunch of other issues that are never named). Clearly the topic was right up my alley for the obvious reason that a cleft lip and palate is also considered a Craniofacial abnormality. ;)
As I always do, I flip to the last page in the story to see how many pages are in the book so I can note when I hit milestones (generally 10%, 20%, 25%, 50%, and 75% and then completed, it's a bit OCD, I know, but I like knowing). So it was somewhat jarring when the book abruptly ended about 100 pages sooner than I expected... because there was an additional novella after the book! I found this exciting. I enjoy little bonuses like that. In my search (prior to reading it) of finding out if it was an extra chapter, novella, or preview for another entire novel, I found that it was a novella, AND there was even another one that has only been released as an ebook and audiobook. So I had to go read that one too.
Because they are short, and because they are separate novellas, I get credit for each of them as an individual book on GoodReads, thus inflating my book count, for short little stories. So that's why this is kinda a cheat. And because I read them all in quick succession (I seriously could not get enough of this series), I am doing one blog post for all of them. This is another cheat. But it'll be easier in places to talk about them all at once rather than sending you back and forth to different blog posts.
So here we go!
I think the basic "moral" to this story if you can say that there is one is that people should not be judged strictly on their appearance. Auggie is an amazing little kid, but I don't doubt for a second that these harsh judgments that happen upon him are fiction. We are an extremely superficial society, and although this book is fiction, I doubt these interactions are. Another possible moral could be something along the lines of one of the quotes that is mentioned in one of Auggie's English Classes "When given he choice between being right or being kind, choose kind" (Wayne W. Dyer). Really we should be nice to everyone until they give us a reason (and a GOOD reason, not just how they look) not to.
From the very first day Auggie and Julian met in the pages of the #1 New York Times bestseller Wonder, it was clear they were never going to be friends, with Julian treating Auggie like he had the plague. And while Wonder told Auggie's story through six different viewpoints, Julian's perspective was never shared. Readers could only guess what he was thinking.
Until now. The Julian Chapter will finally reveal the bully's side of the story. Why is Julian so unkind to Auggie? And does he have a chance for redemption?
Is there anything in a bully's actions that can truly be justified by what his perspective or life experience is? No. I don't think so, not really. People have done some pretty awful things in this world and just because a bully was bullied himself at one point, or has an older brother that picks on him, or his parents both work two jobs and he never sees them (none of which are the case with Julian, btw), and there are just as many people that have had the same things happen to them that would never bully anyone, ever. So excuse me if I am really harsh on Julian.
I think that this novella was supposed to make you feel sorry for Julian and be reminded that there are two sides to every story, but I still feel Julian comes off really poorly, even after telling his own side of the story. I can understand that kids that have never had to interact with someone who looks like Auggie might not act well the first time, but becoming educated and making an effort to normalize a situation like that says a lot about ones character. Instead of embracing Auggie's transition into the school, Julian does everything to make it worse, with no effort to try to understand. And adding more fuel to the fire was that his parents made no effort either. That silver spoon was so far up Julian's yoo-hoo that no one cared about Auggie. I award negative a million character points to Julian and his family.
In an attempt to mention this without creating spoilers, I apologize for the vagueness... But dropping the Holocaust into Julian's family history seems like a complete cop-out to me. Was it an attempt to make this novella more educational? If it takes mentioning the Holocaust to make a kid feel bad about what he's done, it means he's still a dink, just not as bad as Hitler.
I liked this novella even if I wasn't a fan of Julian. It sort of answered the question "what's that kid's problem?!" while reading Wonder (the answer being that Julian's problem is that he's a selfish dink), but wasn't completely necessary. But it was enlightening on a few aspects, so it's got that going for it.
I can honestly say that I liked Chris right from the start. He is mentioned in Wonder, somewhat in passing, but always came off as a good kid. After reading Pluto, I can say that I love him almost as much as I love Auggie and Via. He's not without flaws, he's got an absentmindedness about him that would drive any parent crazy at times, but he really is a sweet kid.
I think the whole point of this story is just that sometimes it's not easy to be friends with someone like Auggie, especially when you are young kids and have completely separate circles of friends. Growing up with Auggie made it so Chris, for the longest time, never saw him the way other people do. Auggie was normalized for him without any effort. He saw, and liked, Auggie for his personality and not his appearance. Once Chris' family moved and he developed a circle of friends that weren't familliar with Auggie it makes it harder on Chris because those friends don't accept Auggie unconditionally, and more than likely will not spend enough time with Auggie to become comfortable with him, all they see is his facial abnormality. In many ways it's easier for the friends that Auggie makes at his new school because they are all getting to know him at the same time, and they see him every day, and people will accept him for that. So it's a bit tougher for Chris.
Overall, I found this novella a bit unnecessary for moving Auggie's story forward, I didn't feel I gained anything extra by reading this story, but I still really enjoyed it. I liked getting to know Chris even if it didn't change how I felt about Auggie or his situation. I don't think it is absolutely necessary to read this novella if you don't want to.
I just love reading about Auggie's little universe and I hope there are plenty of full sized sequels to come in the future. I would be completely happy to read about the rest of Auggie's time at Beecher Prep, perhaps with how other new students react to him, maybe about his transition to Highschool... so many options. Hope my wishes come true!
So here's a bit of backstory to this post and this book (and these novellas).
My best buddy, Erin, had recommend Wonder to me the last time we FaceTimed. She had told me she was glad that I started my reading challenge again with a reasonable amount of books and suggested a book she had just read and thought I would like. It seemed perfect for getting back into reading. It was relatively short, a Young Adult novel, and it was about a boy with a Craniofacial abnormality (and a bunch of other issues that are never named). Clearly the topic was right up my alley for the obvious reason that a cleft lip and palate is also considered a Craniofacial abnormality. ;)
As I always do, I flip to the last page in the story to see how many pages are in the book so I can note when I hit milestones (generally 10%, 20%, 25%, 50%, and 75% and then completed, it's a bit OCD, I know, but I like knowing). So it was somewhat jarring when the book abruptly ended about 100 pages sooner than I expected... because there was an additional novella after the book! I found this exciting. I enjoy little bonuses like that. In my search (prior to reading it) of finding out if it was an extra chapter, novella, or preview for another entire novel, I found that it was a novella, AND there was even another one that has only been released as an ebook and audiobook. So I had to go read that one too.
Because they are short, and because they are separate novellas, I get credit for each of them as an individual book on GoodReads, thus inflating my book count, for short little stories. So that's why this is kinda a cheat. And because I read them all in quick succession (I seriously could not get enough of this series), I am doing one blog post for all of them. This is another cheat. But it'll be easier in places to talk about them all at once rather than sending you back and forth to different blog posts.
So here we go!
August (Auggie) Pullman was born with a facial deformity that prevented him from going to a mainstream school—until now. He's about to start 5th grade at Beecher Prep, and if you've ever been the new kid then you know how hard that can be. The thing is Auggie's just an ordinary kid, with an extraordinary face. But can he convince his new classmates that he's just like them, despite appearances?
R. J. Palacio has written a spare, warm, uplifting story that will have readers laughing one minute and wiping away tears the next. With wonderfully realistic family interactions (flawed, but loving), lively school scenes, and short chapters, Wonder is accessible to readers of all levels.
I'm going to start off by saying that I love Auggie SO much and I hope Dominic grows up to be just like him. He is such a fabulous guy with the unfortunate luck to have Treacher-Collins Syndrome. It also made me appreciate that Dom doesn't have it as bad as Auggie does. Dom can get his cleft fixed and that will be the end of his superficial problems, Poor Auggie will never escape his, and it broke my heart many times throughout this novel.
This novel is narrated by several different kids throughout, which I generally enjoy. As Auggie is the natural voice of his story, I of course, loved his chapters, but my absolute favourite narrator was his sister Via (Olivia). She is SO sweet and caring and I hope Rosalie is as perfect of a sister as she is. Not only did I love her chapters because I loved her, but I also just found them better written. I'm not sure if this was intentional as a different voice, being older and all (Via is 14, Auggie is 10), but that definitely can't be said for all of the older characters. Via's boyfriend Justin narrates one and I was extremely annoyed by his. I don't think he ever used a capital letter or proper punctuation. I know it was an effort to create a voice for him, but his was the only chapter that was really that bad, and I found it irritating. It was still an informative chapter, and once I got used to it it wasn't so bad, but... there was room for improvement.
One thing I can't remember if I have mentioned before or not, but when I feel strongly about a book, love it or hate it, I generally go to GoodReads and read the reviews that would be OPPOSITE to mine, so for example I LOVED this book, so I sought out poor reviews. I had written a whole rant about two reviews that I read that made me so so mad, but I decided not to include it. There was a lot of negativity in that rant, and I don't need to go there. But what I am going to say is that you cannot expect a Young Adult novel to be a complete downer. If you want gritty then go read The Kite Runner. Yes, this book might be a little "Rose Coloured Glasses"ish at times, but it's not rainbows and unicorns all the time either. I think it is a positive realism, and I hope that Dominic is so lucky to have the ability to take the perspective that Auggie does, as well as make the fantastic friends that he has.
Until now. The Julian Chapter will finally reveal the bully's side of the story. Why is Julian so unkind to Auggie? And does he have a chance for redemption?
Is there anything in a bully's actions that can truly be justified by what his perspective or life experience is? No. I don't think so, not really. People have done some pretty awful things in this world and just because a bully was bullied himself at one point, or has an older brother that picks on him, or his parents both work two jobs and he never sees them (none of which are the case with Julian, btw), and there are just as many people that have had the same things happen to them that would never bully anyone, ever. So excuse me if I am really harsh on Julian.
I think that this novella was supposed to make you feel sorry for Julian and be reminded that there are two sides to every story, but I still feel Julian comes off really poorly, even after telling his own side of the story. I can understand that kids that have never had to interact with someone who looks like Auggie might not act well the first time, but becoming educated and making an effort to normalize a situation like that says a lot about ones character. Instead of embracing Auggie's transition into the school, Julian does everything to make it worse, with no effort to try to understand. And adding more fuel to the fire was that his parents made no effort either. That silver spoon was so far up Julian's yoo-hoo that no one cared about Auggie. I award negative a million character points to Julian and his family.
In an attempt to mention this without creating spoilers, I apologize for the vagueness... But dropping the Holocaust into Julian's family history seems like a complete cop-out to me. Was it an attempt to make this novella more educational? If it takes mentioning the Holocaust to make a kid feel bad about what he's done, it means he's still a dink, just not as bad as Hitler.
I liked this novella even if I wasn't a fan of Julian. It sort of answered the question "what's that kid's problem?!" while reading Wonder (the answer being that Julian's problem is that he's a selfish dink), but wasn't completely necessary. But it was enlightening on a few aspects, so it's got that going for it.
Christopher was Auggie's best friend from the time they were babies until his family moved away; he was there through all of Auggie's surgeries and heartbreaks, through bad times and good—like Star Wars marathons and dreams of traveling to Pluto together. Alternating between childhood flashbacks and the present day, an especially bad day for Christopher,Pluto is the story of two boys grown apart learning that good friendships are worth a little extra effort.
I can honestly say that I liked Chris right from the start. He is mentioned in Wonder, somewhat in passing, but always came off as a good kid. After reading Pluto, I can say that I love him almost as much as I love Auggie and Via. He's not without flaws, he's got an absentmindedness about him that would drive any parent crazy at times, but he really is a sweet kid.
I think the whole point of this story is just that sometimes it's not easy to be friends with someone like Auggie, especially when you are young kids and have completely separate circles of friends. Growing up with Auggie made it so Chris, for the longest time, never saw him the way other people do. Auggie was normalized for him without any effort. He saw, and liked, Auggie for his personality and not his appearance. Once Chris' family moved and he developed a circle of friends that weren't familliar with Auggie it makes it harder on Chris because those friends don't accept Auggie unconditionally, and more than likely will not spend enough time with Auggie to become comfortable with him, all they see is his facial abnormality. In many ways it's easier for the friends that Auggie makes at his new school because they are all getting to know him at the same time, and they see him every day, and people will accept him for that. So it's a bit tougher for Chris.
Overall, I found this novella a bit unnecessary for moving Auggie's story forward, I didn't feel I gained anything extra by reading this story, but I still really enjoyed it. I liked getting to know Chris even if it didn't change how I felt about Auggie or his situation. I don't think it is absolutely necessary to read this novella if you don't want to.
I just love reading about Auggie's little universe and I hope there are plenty of full sized sequels to come in the future. I would be completely happy to read about the rest of Auggie's time at Beecher Prep, perhaps with how other new students react to him, maybe about his transition to Highschool... so many options. Hope my wishes come true!
Tuesday, March 17, 2015
Morbid Thought
If Rosalie was James Bulger, today would be her last day on earth. (If you are unfamiliar with who James was, please reference my post HERE before searching on your own. Mine is a little more sensored, but if you want to look into it further, by all means...)
Instead I will be cuddling her, loving her, spending time with her and looking forward to her 3rd birthday and beyond.
Rest in peace little guy. I probably think about you more often than I should.
Instead I will be cuddling her, loving her, spending time with her and looking forward to her 3rd birthday and beyond.
Rest in peace little guy. I probably think about you more often than I should.
Sunday, March 8, 2015
Reading Challenge 2015/New Years Resolution
Initially I didn't plan on doing a reading challenge at all this year. I felt swamped after Dominic came home and sleep was being sacrificed on a daily basis to keep my house from falling apart. So I didn't feel I had enough spare time to dedicate to reading a book. I would do other things like video games and blogging (small bits at a time ;) ) to wind down, it was easier to do those things on auto pilot than trying to remember what I read last in a book.
However, now that Dominic, Rosalie, and I have gotten into a reasonable daytime routine, Dominic has fewer feeds throughout the day, and I get a lot of housework done while I have a respite nurse for a few hours during the day a few times a week, I find myself having a bit more time in the evenings to myself. There are still days that are crazy when I just go to bed 3 hours earlier than usual, but that is not the norm. So I did start my reading challenge, but I'm not really counting this year. I'm using it to get me motivated and back into a reading routine. Initially I said I wouldn't set a reading goal until I could complete the challenge that I failed last year, instead I will restart that challenge, 26 books, once I can complete this one.
So my challenge this year is 10 books. That's one per month starting in March. I think I can do it. I started reading my first book last night, and I felt like I was on drugs. It was SO AWESOME! Who needs heroine when you can feel this good from just reading?!? It was seriously a breath of fresh air. I can't wait to post another book review.
~*~I am not one for New Years Resolutions. I find it silly to plan to better ones self just because it's a new year. You should always want to better yourself regardless of the time of year! No time like the present so why would it make sense to wait if that may mean losing resolve before it can actually get started?!
Right after Xmas, when I saw the pictures of myself over the holidays I noticed how much bigger I was than is normal for me. So when I weighed myself I was disappointed, rather than shocked, to realize that I was only down about 15 lbs from when I was pregnant with Dominic, so I was about 20 lbs heavier than my pre-pregnancy weight. There are lots if reasons for this, two examples are 1) I wasn't breastfeeding, and I couldn't pump enough to keep my supply going, so the weight didn't drop off like it did with Rosalie. And 2) being overwhelmed by everything made me just stay home a lot, so I didn't move around as much leading to fewer calories being burned and 2.5) I'm not walking Boca as much any more for the same reason. My fabulous amazing little brother comes over to walk her for me, which helps out immensely. I hope to get back in that routine in Spring when it's nicer outside.
Roland has also complained about his weight often in the past year, and we are both a tad on the competitive side, so when I decided that I wanted to do something to shed a few pounds, I proposed a bit of a contest between Roland and me. We have no reward, no time frame, no units of measure, but just that we are competing to get trimmer and get healthier. We did start weighing ourselves because that is a finite way to measure progress. Roland also decided to take pictures, I opted not to do that. We are using different methods, he's using this P90X program that is an insane psycho home work out that made him hurt for 3 days, I am just opting to get more exercise when I can. So far that's just been while we are at Lakewood Civic Centre for swimming lessons. Brayden has his lessons first and then we have a 35 minute break and then Rosalie and I go. So once we get to there, Brayden heads into the pool, Rosalie goes into the playroom with the child minders, and I get about 45 minutes of cardio in before I go pick her up to get ready for swimming. So far it's going pretty well for everyone. Rosalie loves the play area and I am happy with how my workouts are going, even if it is only once a week. The great bonus to this plan is that I get to go swimming after which is a good way to cool down. I'm not sure what my plan will be after swimming is done, we only have two classes left, but maybe it'll just mean leaving ALL of the kids with Roland while I go... we'll see how he likes that ;)
So the Anti-NewYearsResolutioner now has a New Years Resolution, but it was all just convenient timing. I still probably won't have one next year ;)
Subscribe to:
Posts (Atom)