Living Well

I recently ordered/read Living Well with Mitochondrial Disease by Christy Balcells. At this point in time, KayTar is not diagnosed as having mitochondrial disease, although it is thought to be the most likely suspect for her medical issues. She is simply categorized as having a unspecified metabolic myopathy for now...however, I found a LOT of the information in the book applied to KayTar, diagnosis or no.

The book gives a great overview of what mitochondrial disease and good explanations (both simple and complex in different sections of the book) of the biochemistry of it. It gives a good overview of systems that tend to be affected (though, I noticed respiratory was not listed and I know many mito kids have issues with that) and what symptoms present most commonly. It spanned infancy to adulthood and diagnosis to palliative/hospice care. The only fault I can find with the book is that there was not a lot of information for what to DO about symptoms...gastroparesis is mentioned, but the testing, medications, and treatments for it are not explored in detail, for example. The book would likely be much too long if it went into all of these little details, but I think a more in-depth symptom management guide might be a helpful companion book to this one, if the author feels inclined to write another! The two portions that were most helpful for me were the section on hydration and creating/keeping a medical binder.

Appropriate levels of hydration are very important to people with mitochondrial disease...or with any metabolic deficiencies...or any of us as humans, really. It is MORE important when something isn't working quite right, though. According to the Holliday-Seger Formula for Maintenance Fluids that is provided in the book, KayTar should be getting 1540ml of fluid daily (based on her 22.2 kg weight) on a healthy, not overly hot day that she spends indoors. She only consistently gets about 960ml per day from her feeds/formula and I didn't realize she was getting sub-optimal fluid until now! She really struggled last summer and I wonder now if some of that was compounded by the heat and deficit in her fluids. So a few days ago, I decided to start tracking her PO intake a little better. I put a sippy cup of water in the fridge with 8 ounces in it and told her to get her drinks (as much or as little as she wanted) from that cup through the day instead of paper cups in the bathroom, ect, because I was going to measure how much she was drinking. She was VERY excited about it for some reason, so the intake her first day was WAY better than I thought. 10 ounces! I think the novelty of the situation had a bit of an impact...she said it was "like a video game". The second day she drank about the same PO, but she had to miss a whole feed because her gastroparesis was acting up (insurance is giving us crap about getting her prokinetic refilled). Yesterday was a more normal day, only 2 ounces PO. The novelty has officially worn off! Over 3 days, her highest fluid intake was 1260ml and her lowest was 1020ml. In case you don't speak in mls, she is roughly 8-16 ounces short on fluid every day. So we're going to have to figure out a way to bolus her with Gatorade throughout the day, perhaps it will help prevent the slump she was in last summer. (As an aside, I've been using the new MitoAction app to track her fluids, meds, symptoms...it isn't perfect, but it is super handy!)

The book recommends keeping a medical binder in both virtual and hard copy form...a good recommendation no matter what kind of medically complex kiddo you have! Page 1 should be a contact list, all physicians (all contacts for them, clinic, cell, fax, email...whatever you have), and 3 emergency contacts. Page 2 should be a copy of the front and back of current insurance card (and medical record #, if you happen to know it). Page 3 should be a current list of all medications (daily and PRN) with strengths, dosages, frequency. I used Google Docs for all of this because it is accessible from anywhere and I also printed a hard copy. The next sections are a bit trickier for us, so I had to make notes to get things from physicians at our next visits. The section after Medications should be Diagnosis. We don't have one! If you are like us, the book recommends getting copies of pertinent testing and results (that are applicable to the possible dx) and a H&P from the referring doc or specialist that is investigating. I also stuck a copy of The Visual Guide to KayTar in there. The following section is Emergency Protocols. We don't have any right now, but I took a photo of the pediatrician's RX from KayTar's last MRI stating she needs D5 1/2NS rather than any other fluid when sedated, fasting, or in need of IV fluids, due to her metabolic disorder. It will be a placeholder until I get a standing order written up from the pediatrician on her letter head. After that comes Notes from Specialists, with most recent copies of clinic notes and test results. Then the final section is Hospitalization records, where you can keep discharge summaries. It seems to be a pretty thorough system (and is covered in a more detailed manner in the book) and I have some collecting to do before ours is in working order!

The book was definitely worth the purchase price (Amazon has the best price!) and I have obviously found information that is applicable to us now out here in No Diagnosis Land and information that might be applicable to us in the future as well. While it isn't as thorough in some areas as I would have liked, it gives a very good overview and a lot of excellent general information that applies to mitochondrial disease and conditions like it. It is written in a very reader-friendly way and I would feel comfortable passing it along to family members, friends, or people who work with KayTar to give them a better idea of what is going on with her...they wouldn't need to read all of it, of course, but some of the sections would be very informative for them regardless of how medically-savvy they are.

Mischief Managed.

Last Thursday night, we took BubTar to see Harry Potter and the Deathly Hallows Part Two at the midnight showing. He thought it was amazing, well, we all did, really. Up until about a week prior to that, he had only seen Sorcerer's Stone through Goblet of Fire, because I felt that they stopped being KIDS movies at that point and became considerably darker, however, I told him that he could watch the rest as he finished reading them, because if he was mature enough to finish the books, he was mature enough to see the movies. The Thursday before the movie, though, Josh said, "Wouldn't he just love it if we took him with us?" We discussed it a bit and I decided to discard my lofty parenting ideals about appropriate subject matter and book reading in favor of one really awesome, memorable night. It was the VERY LAST chance he'd get to see one in the theater, and he'd never been before...so morals, schmorals. As soon as we decided he was going to come along, we set to work watching the rest of the movies. He was pretty pleased with the sudden turn of events, too.

I picked up the first Harry Potter on a whim, almost 10 years ago. It was already in paperback, and if I remember correctly, it was also on sale at the time. I was newly pregnant with BubTar and miserable, largely sofa-bound when I wasn't in the bathroom revisiting my breakfast, lunch, or dinner. A kid's book seemed like an entertaining distraction...and thus, a love affair was born. I read through Sorcerer's Stone, Chamber of Secrets, and Prisoner of Azkaban during my pregnancy, and the first time I ever really remember being kicked by BubTar, I was playing the Sorcerer's Stone video game on the computer. I read Goblet of Fire while I nursed him, as a baby. When he was old enough to start reading the books, I was thrilled...it is one of those magical things you want other people, especially your children to experience. It seemed fitting to have him there for the very last of the magic, as we left one era...the era of Harry Potter...and entered another era, the era of having a child old enough for midnight movies!

It was a fun experience, though I was still definitely not feeling my best from that stomach virus. BubTar was enthralled with the folks in costume, we saw Hagrid, Umbridge, Luna, Dobby, Dumbledore, Voldemort, Fleur, and a dozen or so Hogwarts students. Being the shy guy that he is, BubTar wouldn't agree to take a photo with any of them...but he thought it was cool, anyway. I hope it is one of the memories that sticks with him as he grows up. As for the movie itself? I thought it was a wonderful, fitting ending to such a beloved story..not my favorite movie of all, I don't think...but definitely a solid ending. I can't quite believe it is over...and so I'm reading Sorcerer's Stone to KayTar every day, just trying to hold on to the magic for just a bit longer.

Just in time for summer reading!

Since my last set of book reviews, I have read several more novels, I just haven't gotten around to writing about it! In fact, it has been so long I had to consult my Goodreads account to figure out exactly what I've read since then!

The Book Thief:

I bought this book because I liked the title and the cover caught my eye. It was interesting, set in Nazi Germany following the story of a girl, Liesel, who was sent to live with a foster family who ended up being good people who quietly dissented with the overwhelming political/social climate of the time. The story is narrated by Death, which was unique, but I think it also made it more difficult for me to really get into the story. It was a book that I was slow to warm up to, but the end had me quietly crying in the kids' after school pick-up line. I was glad I read it, but I'd say it was good, not great, overall.

The Maze Runner/The Scorch Trials:

I loved these books. LOVED THEM. They are YA, so they were very easy reads, but I loved the characters and the story really pulled me in. The main character, Thomas, wakes up in an elevator unable to remember anything other than his name. When the elevator opens, he discovers he is in a self-contained world with about 60 other boys who have created their own system of life. Everyone has an assigned job, there is a system of government set-up, there are no adults, and as far as they know...no way to get out of this strange world. There is a maze, though, and they believe solving the maze will lead to the exit. Thomas' arrival sparks change in their world and the story really hits the ground running. I don't want to give anything away about the first book by outlining the second, but suffice it to say it delved into a genre I don't usually like AT ALL, but in this instance I did. I read The Scorch Trials in one day when I was sick and dozing in and out with a fever. I can't wait for The Death Cure to be released!

Incarceron/Sapphique:

I wanted to love these books, I did. But...I didn't. I'd give them a rating of "Meh." It was an interesting storyline, I like the worlds they built...but I never really clicked with any of the characters. Incarceron is a prison world, created to contain the chaos and problems in the world by locking away criminals and the less fortunate, and is self-contained and self-sustaining. The story follows both characters on the inside of the prison and those on the outside, who find themselves in a different sort of prison. Incarceron moved at a decent pace for me, but since I didn't click with the characters, I didn't love it. Again, I won't comment on the plot of the second book, but it was harder to get through. I forced myself to finish because I did have some curiosity about how it would all end up. If you are looking for a mediocre book that you can sort of like, but not be compelled to finish in a day or two, this might be what you are looking for.

The Books of Ember:

There are 4 books in this series, The City of Ember, The People of Sparks, The Prophet of Yonwood, and The Diamond of Darkhold. I like YA fiction, but this was more like upper elementary fiction. It is probably on par with the earlier Harry Potter books, reading level-wise. That being said, I LOVED them. Yes, they were easy and took me about a day to read while I was in full time classes...so VERY quick and easy. I'm sure either KayTar or BubTar could read them with ease. However, they were just wonderful stories. They follow two kids, Lina and Doon, who live in the city of Ember, a town that is surrounded completely by darkness. There is no natural light in their world. In the morning, the lights of the city come on, at night, they go off. They don't farm, everything they need is in the store rooms of the city, rationed out as needed. Extras can be purchased from various shops in town. However, the store rooms are beginning to get bare and the city is beginning to experience periodic blackouts. The city seems to be dying and the only people to notice and take action are Lina and Doon. Each of the books has a really wonderful take home message built in, which is executed well. The third book makes a departure from the main story (and follows different characters altogether), which I didn't care for, but it too had a good message, so I was glad to have read it (at a somewhat slower pace). These books are wonderful.

Across the Universe:

This book follows Amy, a teenage girl who is frozen with her parents (who are both important military/scientific professionals) and transported on board a ship called the Godspeed which will travel across the universe and land on a new planet which is habitable for humans. The journey will take several lifetimes, so the ship is large and equipped for generations of people to survive in, while keeping it on it course. Something goes wrong and Amy is awakened prematurely. Elder, the future leader of the ship, takes an instant liking to Amy and takes her under his wing. As others are defrosted before their time, Amy and Elder try to solve the mystery of who is unplugging the frozen passengers and why. It was an enjoyable read for me. I liked it the characters, I liked the setting, I liked the overall storyline. It held my attention, though I wasn't always surprised by the plot twists. I didn't LOVE it, but it was a good solid read.

Divergent:

This book tells the story of Beatrice, a teenage girl who lives in a dystopian world which is divided into factions, Candor (the honest), Abnegation (the selfless), Dauntless (the brave), Amity (the peaceful), and Erudite (the intelligent). In this world you are born into a faction, but at age 16 you undergo an aptitude test which tells you what you are best suited for and then you must choose where you will belong...the motto is faction before blood, so if you choose another faction, you basically lose your birth family. Beatrice finds herself torn between Dauntless and Abnegation and her choice leads her down a path she never could have predicted. It was an action packed book and I really loved the characters. I don't want to give ANYTHING away, so I won't say more...but I highly recommend it. It will be a trilogy, I think.

Birthmarked: 

Gaia is a sixteen year old midwife-in-training who lives outside the wall of the Enclave. Life inside the wall is a life of beauty and privilege and outside the wall, life is a bit more difficult and primitive. Midwives in this world have a very important job, they must advance the first three babies born each month to the Enclave, where they will be adopted by wealthy parents and be given a wonderful life. Gaia is proud to serve the Enclave in this way, as was her mother before her, but when the Enclave intrudes into her life and begins to tear is apart, Gaia begins to wonder if everything is as wonderful as it seems within the wall and it sets her on a journey of rebellion and discovery that will change her life in unimaginable ways. This was a good read. I did warm to the characters, I was drawn in by the story. I think I might have liked it more if I hadn't read it right after reading Divergent, because in comparison, it wasn't as strong of a novel. I'd say it is worth a read, if you like dystopian fiction, and I look forward to the next book in the series coming out!

BossyPants:

Tina Fey's autobiography was well-written and hilarious. If you like intelligent/funny women, even if you don't watch 30 Rock or SNL, definitely give this one a read! 

PS: The 'Tars are now on Tumblr, so check out our mini-blog Life With The 'Tars: Snaps&Snippets over there for lots of good photos and little everyday moments from our life! 

Even more books...

Graceling: If I was judging a book by its cover, this would be my favorite. I thought the cover art was really beautiful. The story itself was enjoyable, too. It is a fantasy novel, the main character is named Katsa and she is a Graceling, a person with two different colored eyes which marks them as having a Grace (which is a talent or gift for a certain skill or ability). It could be cooking or mind control or as it seems in Katsa's case, fighting. In this world, Gracelings belong to the King, who uses their skill however he sees fit. I don't want to give too much away, but it was a good read. It had a bit of mystery, battling, and a love story. It wasn't my favorite book ever, but I liked it enough to read the companion book as well.

Catching Fire and Mockingjay: I loved these. I read through one a day. I loved both Katniss and Peeta and I hated the world they were stuck in. Catching Fire took me by surprise many times, though in retrospect I guess I should have seen some of those things coming. The world in which these stories take place is not light or beautiful or smooth, but there is still such goodness in it, even in unexpected places. It seems each book gets darker, but there is always light to be found. As for Mockingjay, there were parts I didn't like, parts that made me exceedingly sad, but in the end, I was pleased with the outcome. It is tough to say much about these without giving things away, but READ THEM, if you haven't.

Fire: This is the companion book to Graceling. It takes place before Graceling in the same world, there is only one character in both novels and he is not the main character in either. Fire takes place in an adjacent kingdom, where Gracelings do not exist, but monsters do. Monsters are creatures that are equivalent to the animals (and even people) in our world, but they have vibrantly colored hair/feathers/fur and they also can influence the minds of creatures and people around them. Fire is the protagonist and she is a monster, the last human monster, in fact. The novel is largely the story of her self-discovery and how she learns to love herself and find her place in the world. There is also mystery, battling, and a love story like Graceling. I've read reviews that complain about the fact that menstruation is mentioned several times in the book, but it wasn't bothersome to me. It fit into the story because monsters crave the blood of other monsters, so Fire attracted attacks from other monsters during those times. It actually made me wonder why it wasn't addressed in the Twilight books...I mean, if Jasper freaked out over a paper cut on Bella's birthday, how did he ever survive high school with all those menstruating teenage girls in class with him? I digress. I liked Fire and I'll read the next companion book, Bitterblue, when it comes out.

All told, I read 10 books in my 2 weeks of child-free break. I think it was a lovely way to relax! I'm reading The Book Thief currently, but I imagine school will slow me down somewhat. ;)

Books, books, books!

When the kids went back to school last week, I started reading. Since then, I've read Twilight, New Moon, Eclipse, Breaking Dawn (yes, I finally caved and jumped on that bandwagon), The Host, and The Hunger Games. Today I'm expecting to get Graceling in the mail and tomorrow Catching Fire and Mockingjay are set to arrive. I can't remember the last time I've burned through novels this way, in fact, I can't even keep that "What I'm Reading" button on my sidebar up to date, but I can't seem to get enough! I'm sure it will come to a screeching halt when my term starts next week, though. Here's some thoughts on what I've read so far...

The Twilight Saga: Vampires, werewolves, unrequited teenage love...I was skeptical at first. Although I love Harry Potter, I started reading them BEFORE it turned into some sort of worldwide phenomenon and the Twilight hype made me resist reading these for a long time. However, I needed a good junk food novel and so I took the plunge. They were excellent reads. People say Stephanie Meyer isn't a technically great writer, but she is masterful with character development and if I can click with a character I'm pulled into a book, no matter the story. I read these in such quick succession, I'm a little unsure about when one book ended and the next began so I can't really review each individual novel (I think Eclipse must have been my favorite as I read it start to finish in under 12 hours), but even as one big storyline I enjoyed it very much. And, for the record, I was always on Team Edward and couldn't really understand how Team Jacob ever came to be. ;)

The Host: This one is also by Stephanie Meyer, but meant for adults rather than a young adult audience. I was unsure about it at first, it is a slow starter and the subject (alien takeover) is not really my thing. I pressed on through the initial slow chapters and once I hit chapter 9 or 10, I was really pulled in and it just got better and better. Again, it was the characters that kept me reading. At times, I worried this one wouldn't resolve in a way I could be happy with, but it ended perfectly. I've read that she plans to make this a trilogy and I would love that!

The Hunger Games: If I was a little skeptical about Twilight, I was EXTREMELY skeptical about this one. Everyone was raving about it, so I decided to give it a chance, but the plot was not appealing to me at all...kids fighting to the death as televised entertainment?? It seemed too dark, dreary, and violent. Somehow, though, the book rose above all that to deliver a really beautiful story. There were battles and death, sadness and fear, but the author found a way to make even the deaths (at least the ones you cared about) well done and meaningful. Again, the connection I felt to the characters overcame any dislike I had of the setting or plot, and I can't wait until Catching Fire arrives on my doorstep tomorrow!

So, that's where I've been lately...on the sofa with my nose in a book. ;) I'll be back in a few days to review my latest reads!

Books for Christmas!

This week I have been volunteering at the Book Fair at the kids' school. I just couldn't hang out around those books all day without finding an excuse to buy a few, so I started my Christmas shopping a little early. BubTar always has a book in hand these days (and 3 or 4 more in his backpack every day), so it was a perfect place to shop for him! These are the books I purchased for BubTar.

1. Time Traveler's Journal:


This is one of those cool hardback books with the appearance of a homemade journal, with envelopes and notes, and all kinds of cool extras (including a backward spinning pocket watch).

2. Blast Lab


BubTar is really into science and science experiments right now and this one has simple experiments to do at home, that seem to have a very high fun factor.

3. Diary of a Wimpy Kid: The Last Straw


4. Diary of a Wimpy Kid: Dog Days



He got the first two books in this series today (to start reading now), so I decided to pick the rest up for Christmas. The trick will be some how preventing him from burning through the first two too fast!

5. Diary of a Wimpy Kid Do-It-Yourself Book



He was very interested in this fun do-it-yourself version of Wimpy Kid, too, so I snatched it up.

6. Guinness World Records: Gamer's Edition 2009


I bought him a Guinness Book of World Records the year he was born (2002) and he has been dragging it around everywhere lately, it only stands to reason that he would love an updated version that deals with one of his favorite hobbies, video games! My mom bought this one for him.

I also purchased a Phinneas and Ferb book (a KayTar and BubTar pick), Dora Saves the Crystal Kingdom (a KayTar pick), Wimpy Kid #2 (a BubTar pick), and Nighttime: Too Scared to Sleep (a collection of mildly scary stories I chose for BubTar)...all for a surprising grand total of $24! Volunteering in the library has its perks, evidently, one of which is MAJOR discounts on Book Fair fare. I intended to pay full price for these, but the surprise at the register sure was nice!