04 January 2023

2021 Reading!

Hello, lovely people. Coming to you shamefacedly with a list of books I read in 2021. Yes, I went all of last year with this list saved as a draft and never actually published it. But here we are! It's been a trillion years since I've read these, so I really had to dust off my memories to give you a quick reaction! There are some really great ones here though. An asterisk simply denotes a book that is a re-read. You can find my lists for previous years here: 202020192018, 20172016201520142013.


Top Recommendations

I read a lot of other great books but these were my favorites. All are middle grade except the last two. But if that's not your thing, peruse my fiction/nonfiction section for others.

  • Beginners Welcome, by Cindy Baldwin
  • All Thirteen: The Incredible Cave Rescue of the Thai Boys' Soccer Team, by Christina Soontornvat
  • We Dream of Space, by Erin Entrada Kelly
  • Just Like That, by Gary Schmidt (but you have to read the companion novels first)
  • Just Mercy, by Bryan Stevenson
  • Anxious People, by Fredrik Backman


Fiction

  • The Things We Cannot Say, by Kelly Rimmer (Good book! WWII in Poland so of course it’s sad!)
  • The Island of Sea Women, by Lisa See (About women on the Korean island Jeju and the art of free diving; really enjoyed this one!)
  • Anxious People, by Fredrik Backman (One of my favorites this year!)
  • The Martian, by Andy Weir (I loved this one. It has too much bad language though, as a content warning. But great science fiction that feels so plausible.)
  • The Magic of Ordinary Days, by Ann Howard Creel (Liked this one))
  • The Four Winds, by Kristin Hannah (Hmm. Kinda hated it but liked it enough to read it? Author has better stuff and I would never read this one again. I could list my issues but don’t want to get into it!)
  • *Jane Eyre, by Charlotte Brontë (Classic for a reason! Great read.)
  • This Light Between Us: A Novel of World War II, by Andrew Fukuda (Great book! WWII—Japanese-American experience and French Jewish experience)


Nonfiction

  • Just Mercy, by Bryan Stevenson (Of course very, very good!)
  • The Soul of an Octopus, by Sy Montgomery (You have to be feeling the subject of this one, but I really liked it! It was beautiful in a way I didn’t expect.)
  • 999: The Extraordinary Young Women of the First Official Jewish Transport to Auschwitz, by Heather Macadam (Very well done!)
  • The Real North Korea: Life and Politics in the Failed Stalinist Utopia, by Andrei Lankov (I’m always interested in North Korea and really wanted to understand its politics better, so I liked this one. Would be a little boring if you weren’t really wanting to know.)
  • The Aquariums of Pyongyang: Ten Years in the North Korean Gulag, by Chol-hwan Kang (Oh goodness, this one is sad and hard! Very interesting though!)
  • Option B: Facing Adversity, Building Resilience, and Finding Joy, by Sheryl Sandberg (Liked this one; thought provoking. Deals with grief but it’s applicable to all.)
  • A Night to Remember, by Walter Lord (About the Titanic—classic, great read!)
  • American Sherlock: Murder, Forensics, and the Birth of American CSI, by Kate Winkler Dawson (Liked this one a lot! Really fascinating stuff if you’re interested in crime at all.)
  • My Wife Said You May Want to Marry Me, by Jason Rosenthal (His wife was Amy Krouse Rosenthal, a fabulous children’s author; she died of cancer. Good book!)
  • Live Your Life: My Story of Loving and Losing Nick Cordero, by Amanda Kloots (Lost her husband to Covid, so tread carefully if death/covid/grief are trigger topics.)
  • A Walk in My Shoes: Questions I’m Often Asked as a Gay Latter-day Saint, by Ben Schilaty (Very good!)
  • The Woman They Could Not Silence, by Kate Moore (Oh my goodness! This one is wild! I liked this one a lot.)
  • Alma Rose: Vienna to Auschwitz, by Richard Newman (Alma Rose was a famous musician and led the women’s orchestra at Auschwitz—I was very interested in this topic so that made it a good read, but full disclosure is that I heavily skimmed the first 60% that went into her family’s backstory/history because it was too much info.)
  • The Stranger in the Woods: The Extraordinary Story of the Last True Hermit, by Michael Finkel (Interesting topic, and great when it talked directly about the hermit—but would be better as a long Atlantic article because all the chapters about what makes people seek solitude were a boring effort to make it book length.)


YA/Middle Grade

  • Beginners Welcome, by Cindy Baldwin (Such a beautiful book!! One of my favorites this year!)
  • Three Keys, by Kelly Yang (Sequel to Front Desk; this was well done!)
  • When My Name Was Keoko, by Linda Sue Park (Korea during WWII. Great book!)
  • The Blackbird Girls, by Anne Blankman (WWII/Chernobyl. Good book!)
  • A Wish in the Dark, by Christina Soontornvat (Such a great book! Fantasy.)
  • The Trials of Morrigan Crow (Nevermoor, #1), by Jessica Townsend (Fantasy, first in a series. I liked this one and so did my kids!)
  • Franklin Endicott and the Third Key, by Kate DiCamillo (Another great addition to the Mercy Watson universe—I added this one just because I read it by myself, not with kids.)
  • Return of the Dragon Slayers (Dragonwatch, #5), by Brandon Mull (Great ending to the series!)
  • Nest, by Esther Ehrlich (This book was so sad! Deals with grief and suicide—more about the girl’s journey through grief than what actually happened. Well done but heavy.)
  • The Beatryce Prophecy, by Kate DiCamillo (Love this one!)
  • The Honest Truth, by Dan Gemeinhart (Very very well done! Deals with cancer.)
  • Half a World Away, by Cynthia Kadohata (Liked this one! Deals with international adoption/trauma.)
  • Kira-Kira, by Cynthia Kadohata (Beautiful book! Japanese American family. Deals with illness/grief.)
  • Gone to the Woods: Surviving a Lost Childhood, by Gary Paulsen (Memoir from a great author! Wow, what a tough childhood. Good book.)
  • All Thirteen: The Incredible Cave Rescue of the Thai Boys' Soccer Team, by Christina Soontornvat (This one is sooooo well done! Loved it!
  • Savvy, by Ingrid Law (Fun books! Lighthearted and well written.)
  • Scumble, by Ingrid Law (Sequel to Savvy; same)
  • Just Like That, by Gary Schmidt (If you haven’t read or had your kids read Gary Schmidt books after all these years of me obsessing, just stop and read them all!! This book was so beautiful. I sobbed but it lifted me back up. Read The Wednesday Wars first because this is a companion novel and it will be more meaningful.)
  • *Okay for Now, by Gary Schmidt (Read!!)
  • *The Wednesday Wars, by Gary Schmidt (Read!!)
  • *Pay Attention, Carter Jones, by Gary Schmidt (Read!!)
  • You Go First, by Erin Entrada Kelly (Beautiful book! Love her stuff so much.)
  • We Dream of Space, by Erin Entrada Kelly (Loooove this one!)
  • Blackbird Fly, by Erin Entrada Kelly (Excellent!)
  • The Land of Forgotten Girls, by Erin Entrada Kelly (Great book!)

 

Series

Zion Covenant series, by Brock & Bodie Thoene (For teens/adults. If you’re even the slightest bit interested in the European events that led up to WWII or in historical fiction, these are EXCELLENT. I’ve read them all 20 times—of course you have to start with the first one. Highly, highly recommend this series. Madeline read it as a seventh grader and really liked it too. And I read it in sixth grade. So you don't have to be super old.)

  • *Warsaw Requiem (#6)
  • London Refrain (#7)
  • Paris Encore (#8)
  • Dunkirk Crescendo (#9)

Zion Chronicles series, by Brock & Bodie Thoene (For teens/adults. This series is also great, although not as great as the Thoenes’ other series. This one takes place in Jerusalem in the late 1940s.)

  • *The Gates of Zion (#1)
  • *A Daughter of Zion (#2)
  • *The Return to Zion (#3)
  • *A Light in Zion (#4)
  • *The Key to Zion (#5)

Wings of Fire series, by Tui Sutherland (Middle grade. If you have a kid who likes fantasy, dragons-type stuff, this is a fun series! I honestly got a little obsessed with it.)

  • The Dragonet Prophecy (#1)
  • The Lost Heir (#2)
  • The Hidden Kingdom (#3)
  • The Dark Secret (#4)
  • The Brightest Night (#5)
  • Moon Rising (#6)
  • Winter Turning (#7)
  • Escaping Peril (#8)
  • Talons of Power (#9)
  • Darkness of Dragons (#10)
  • The Lost Continent (#11)
  • The Hive Queen (#12)
  • The Poison Jungle (#13)
  • The Dangerous Gift (#14)
  • Darkstalker (Legends, #1)
  • Dragonslayer (Legends, #2)
  • The Winglets Quartet (Winglets, #1–4)

Yearbook series, by Ally Condie (YA. I like this series a lot. It was Condie’s first series, centers around some LDS kids growing up in Washington, and she doesn’t promote it now. But it’s so well done, and I feel it’s such an authentic slice of high school life.)

  • *Yearbook
  • *First Day
  • *Reunion

18 July 2021

My 2020 Reading List, Revealed!


At long last, the books I read in 2020! I'll give a few of my overall top recommendations and then break them down by category. You can find my lists for previous years here: 20192018, 20172016201520142013.

I have to say, 2020's reading list is proof to me that middle grade fiction really is my jam. There were so many incredible reads. Middle grade books are set in such a pivotal time of life that really gets at the heart of what it means to be a human, and there are some amazing stories out there. If you don't usually think of reading children's books, give some of these a whirl this year! In fact, I usually put this category at the bottom of my reading list out of habit, but I'm bumping it up to the top this time because there are so many outstanding reads that it's hard to know where to start. And if you have kids, there are so many here they will love.

Oh, and I only include books on this list that I read on my own. There are too many other children's books to count, so I don't include any books that I just read with my kids. (But if you want a brilliant series recommendation for kids--all of mine ages 3-12 love it--try Dory Fantasmagory!)


Top Recommendations
Song for a Whale, by Lynne Kelly
The Line Tender, by Kate Allen
Seacrow Island, by Astrid Lindgren
The Book of Lost Friends, by Lisa Wingate
Talking to Strangers, by Malcolm Gladwell
A Man on the Moon, by Andrew Chaikin
Best Man, by Richard Peck
The List of Things that Will Not Change, by Rebecca Stead


Middle Grade
  • Song for a Whale, by Lynne Kelly (Amazing read about a girl who is deaf. Beautiful)
  • Best Man, by Richard Peck (Absolutely loved this one. Wonderful treatment of gay marriage, although that's not the focus of the book. Funny, touching, thought-provoking)
  • The List of Things that Will Not Change, by Rebecca Stead (All of her books are stunning and this is no exception; also an incredibly poignant treatment of gay marriage. So good)
  • Lalani of the Distant Sea, by Erin Entrada Kelly (So so good! Read all of her books; she's one of my favorite authors)
  • The Line Tender, by Kate Allen (Oh boy, this one got me. Amazing!)
  • Seacrow Island, by Astrid Lindgren (Loved this one! I need to move to or at least vacation on a Swedish island now. This one is a light, happy read and brilliantly written)
  • Mio, My Son, by Astrid Lindgren (Fantasy; also good)
  • Counting By 7s, by Holly Goldberg Sloan (Sad but wonderful book)
  • Walking Miss Millie, by Tamara Bundy (Loved this one!)
  • The Great Gilly Hopkins, by Katherine Paterson (Re-read; very good; about girl in foster care)
  • Mac B., Kid Spy: Mac Cracks the Code, by Mac Barnett (Always excellent! Check out the whole series if you haven't yet. Every single one makes me laugh)
  • Absolutely Normal Chaos, by Sharon Creech (Re-read; great book)
  • The Boy on the Porch, by Sharon Creech (Excellent)
  • The Castle Corona, by Sharon Creech (Fantasy; excellent)
  • Replay, by Sharon Creech (Great book)
  • The Unfinished Angel, by Sharon Creech (Also good; very different style from her others)
  • Not If I Can Help It, by Carolyn Mackler (Protagonist has sensory processing disorder; very well done)
  • Because of the Rabbit, by Cynthia Lord (Really good)
  • Paper Wishes, by Lois Sepahban (So good. About Japanese internment camps)
  • A Place to Belong, by Cynthia Kadohata (Really good. Tells about what happened to Japanese-American families that were repatriated to Japan after WWII)
  • Refugee, by Alan Gratz (Really good)
  • In the Year of the Boar and Jackie Robinson, by Bette Bao Lord (About a Chinese girl moving to NY with her family)
  • Rules, by Cynthia Lord (Fantastic book! Protagonist's brother has severe autism, and she grapples with how it impacts her own life)
  • Journey of the Pale Bear, by Susan Fletcher (Based on a true event but with an imagined backstory; lovely book)
  • A Whale of the Wild, by Rosanne Parry (Liked this one)
  • The One & Only Bob, by Katherine Applegate (Great! Sequel to The One & Only Ivan)
  • Skunk and Badger, by Amy Timberlake (Great story; beautiful illustrations by Jon Klassen)
  • Wayside School Beneath the Cloud of Doom, by Louis Sacher (A new Wayside book! This is not a drill, folks! First one in 25 years)
  • The Fourteenth Goldfish, by Jennifer L. Holm (Not amazing, but it's a funny read that most kids would enjoy)
  • The Third Mushroom, by Jennifer L. Holm (Same; it's a sequel)
  • The Torchbearers: A Darkdeep Novel, by Ally Condie & Brendan Reichs (We like these; they are a little scary/intense for the younger crowd; billed as "dark fantasy" but not too dark since it's aimed at MG kids)
  • Keeper of the Lost Cities 8.5: Unlocked, by Shannon Messenger (This one isn't a true novel in the KOTC series. The format is a little hard to explain; I got bored by it but my daughter enjoyed it)
  • Land of Stories (volumes 1-6), by Chris Colfer (These are fantasy books and are a great read. Storybook world exists but in a different dimension. It never struck me as the most amazing writing, but the stories are really interesting and engaging and make up for any of the writing gaps.)



Nonfiction
  • Talking to Strangers, by Malcolm Gladwell (Loved this one!)
  • A Long Way Home, by Saroo Brierley (This was really really good! Reads like fiction but it's a wild true story)
  • A Man on the Moon, by Andrew Chaikin (Absolutely loved this one because I love space! Seriously so good and thorough, but you need to like space)
  • Killers of the Flower Moon: The Osage Murders and the Birth of the FBI, by David Grann (Wow; really good and sad and eye opening about this part of history)
  • Silence Is a Scary Sound, by Clint Edwards (Funny! Parents will appreciate)
  • I'm Sorry, Love, Your Husband, by Clint Edwards (Very funny! Better than the previous one)
  • Thunder Dog, by Michael Hingson (Super interesting! About a blind survivor of 9/11 and his guide dog)
  • Arctic Homestead, by Norma Cobb (This one's crazy about homesteading in Alaska; I really liked it [and Dave did too] even though the narrator seems to be slightly unreliable)
  • How to Raise an Adult, by Julie Lythcott-Haimes (Highly recommend this one! Especially first half)
  • A Mother's Reckoning, by Sue Klebold (Written by mother of one of the Columbine shooters; very moving)
  • Finding Gobi, by Dion Leonard (Simple but interesting)
  • Helen Keller: A Life, by Dorothy Herrmann (Extremely thorough; I learned a ton and it was interesting, but only a book to grab if you really want to learn about the topic)
  • Duped, by Abby Ellin (Fascinating premise but got really tired of this one and skimmed. Skip!)
  • Odyssey of Hearing Loss, by Michael Harvey (Marginally interesting, but it mostly focused on hearing loss in the older population and that wasn't my primary interest)


Fiction
  • The Book of Lost Friends, by Lisa Wingate (One of my favorites this year!)
  • Oliver Twist, by Charles Dickens (Can't believe it was my first time reading this, but it was awesome!)
  • Cilka's Journey, by Heather Morris (Really well done; I didn't know anything about gulags before; companion novel to The Tattooist of Auschwitz)
  • The Golden Tresses of the Dead: A Flavia de Luce Novel, by Alan Bradley (I love Flavia de Luce books! Start with The Sweetness at the Bottom of the Pie if you haven't read them.)
  • The Dutch House, by Ann Patchett (I enjoyed this but didn't love it as much as everyone else)
  • Eleanor Oliphant Is Completely Fine, by Gail Honeyman (Really good)
  • The Great Alone, by Kristin Hannah (Liked this one)
  • To the Land of Long Lost Friends, by Alexander McCall Smith  (No. 1 Ladies Detective Agency; these are always an enjoyable read if you like the series.)
  • Before We Were Yours, by Lisa Wingate (This book is so well written and absolutely engrossing, and also absolutely devastating. As a mother of young children, it broke my heart. I had to skim a few spots because it was so painful, especially knowing it was based on historical events.)

YA
  • Let the Sky Fall, by Shannon Messenger (Huge thumbs down. Disappointing because I liked KOTC.)
  • Peak, by Roland Smith (About Mt. Everest; Madeline and I enjoyed this one.)
  • The Silence Between Us, by Alison Gervais (About a deaf teenager. My feelings: It wasn't love, it wasn't hate, just indifference)

26 September 2020

Huge Enzyme Win!


Yesterday might have been a normal day for you. But for Madeline, it was life changing. For the first time in her public education, she stuck a bottle of enzymes in her backpack before going off to school and administered the enzymes to herself at lunch. So simple: sit down, take enzymes, eat lunch. But until yesterday, that was against the rules. This is something we've been fighting for the past six years, and getting this medical accommodation granted is one of my proudest accomplishments. 

At age six, Madeline attended her first full day of school as a first grade student at our local elementary school. As all the other first grade classes lined up for the cafeteria, Madeline stopped at the nurse's office to swallow her enzymes, essential medication that makes it possible for her to digest food. Without taking enzymes before every meal and snack, her body is completely unable to process what she eats, leading to severe stomach cramps and poor weight gain, or even a bowel blockage. Enzymes work best when they are taken immediately before eating. They are critical for her, and harmless to anyone else. (Everyone else just carries enzymes around in their pancreas. Easy.)

That first day of first grade, the nurse was ready. Madeline took her enzymes and then headed to lunch. Later that week, however, things didn't go as smoothly. By the time she took her enzymes and got to the cafeteria, the line snaked out the door. Her classmates were already settling in at their tables, but she dutifully joined the end of the line and waited to get inside. By the time she sat down, there were only a few minutes left to eat. Not good for a child who needs to consume 150% of the calories of an average person simply to maintain weight. Not good for a child who has already taken enough enzymes to digest a full meal but is now essentially eating a snack.

After we discussed it with the school, Madeline was given permission to go to the front of the line after taking her enzymes. After all, it was the trip to the nurse that was slowing her down. Even though the nurse tried to prioritize Madeline, she was sometimes busy caring for other students and Madeline was forced to wait for a few minutes, cutting even further into her precious lunchtime. Worse, she was spending that time in the nurse's office in close proximity with sick children, and as a cystic fibrosis patient, even a minor illness could lead to missed school, a hospitalization, and even long-term lung damage. 

The next time Madeline encountered a line for the cafeteria, she started up to the front as instructed. A cafeteria aide immediately yelled at her to return to the back of the line, to her rightful spot as a latecomer. If something similar happened today, Madeline would speak up for herself. As a tiny six year old in a big new school, however, her rule-following heart and respect for authority won out. She moved to the back of the line. She got to the table later than most of her classmates. She didn't finish her lunch. And a few hours later, she had a stomachache.

Someone at the school later let the cafeteria aides know to watch for Madeline, and she was given a pass to show anyone who questioned her cutting in line. She was also given a five-minute head start so she could get her enzymes from the nurse without losing any time from lunch, and a buddy to go with her to make it more fun. She was even granted extra time to eat lunch if necessary, but what first grader wants to miss out on class activities just to stay behind and eat? Everyone at the school was beyond helpful and kind. But if Madeline had been allowed to administer her own enzymes at school, all of that could have been avoided. Sure, she was only six, but she had been swallowing her own enzymes since she was 12 months old and was already perfectly capable of remembering to take them before eating. In fact, she had consistently done so the year before as a student in a private kindergarten, and she was also used to handling her own enzymes in church classes, on playdates, and at home.

It's not that we weren't requesting this accommodation. As part of Madeline's 504 plan, which outlines any necessary health accommodations, we asked that she be given permission to self-carry and self-administer her enzymes. The answer was always a resounding no. We asked in first grade, we asked in second grade, we asked in third grade, and so on down the line. No, no, no, no, and no.

But why?

We were always told that self-administering enzymes was against Pennsylvania state law. This is not accurate, and there are scores of children throughout the state taking enzymes on their own, but it is the answer the state Department of Health (DOH) gave whenever the school district asked if it was okay to permit someone with cystic fibrosis to self-administer enzymes. My understanding is that when we pushed further, district officials consulted with their solicitor and were essentially told to follow the instructions they had received from the DOH. And when we asked for legal justification to back up the DOH's claim, the DOH simply followed up with the same circular logic they had given us before that didn't actually say that self-administration of enzymes was not allowed. 

The exact legal reasoning behind all of this isn't necessary or interesting to explain here, but it was a frustrating cycle that led to lots of meetings and phone calls with the district, letters from Madeline's pulmonologist, tears from me, an attempt to schedule a formal mediation session through the state, more tears, a huge 504 meeting with both the school district and Madeline's care team present (thanks, Zoom!), and yes, even our own consultation with an attorney. Madeline's pulmonologist and dietitian went above and beyond to advocate for her. After all of that, the school district was willing to go back to their own attorneys and re-examine the issue. Apparently they ended up consulting with *several* sets of attorneys, and although I have no idea what went on during those discussions, the end result was a glorious phone call that I received on Monday: Madeline now has permission to self-carry and self-administer her enzymes. Hallelujah!

I want to emphasize that we worked with very kind people in the district who simply felt the matter was out of their hands once they received (poor) advice from the DOH. We especially love and appreciate both school nurses that Madeline has worked with over the years, and the willingness of Madeline's teachers to be flexible and creative to make her trips to the nurse's office as simple and nondisruptive as possible. They really are the best, and the self-administration question was not at all up to them.

What astounds me, however, is that for six years we have repeatedly asked for the same thing using essentially the same arguments, and the same solution has been there all the time. And yet it took this monumental effort to push for a change, and to get the district to believe in us enough to challenge their own legal counsel to be more thorough. If the district hadn't done that, we would have taken the next step, which is a formal due process hearing wherein a judge essentially hears arguments from both sides and makes a binding decision. I am (somewhat) confident we could have won with an attorney at that stage, but it would have cost a whole lot more time, money, and goodwill.

It would have been so easy to give up a thousand times along the way and say: That's just the way it is; some things will never change. But check out these life-changing things Madeline can now do (or will be able to do in the future), simply because we never gave up:

  • Eat lunch at school without going to the nurse's office
  • Take an extra enzyme mid-way through the meal if she realizes she's eating more than usual or gets seconds
  • Eat a snack without taking time out of class to go to the nurse's office
  • Avoid being unnecessarily exposed to germs each time she takes her enzymes
  • Optimize the effectiveness of her enzymes and feel healthier
  • Eat that random treat a teacher or friend gives at an after-school activity or sports practice, rather than saving it until she gets home because the nurse is no longer available
  • Attend a school sleepover or dance and eat any of the refreshments without asking special permission or slipping away from her friends
  • Visit a friend's house after school without me dropping enzymes off a day in advance so they are available just in case they want to eat a snack
  • Go on a field trip or other school-sponsored event without having a nurse tag along every moment (this will increasingly become a big deal as she gets older!)
  • Be able to eat in the event there is a school emergency that prevents her from coming home or getting to the nurse at the usual time
  • Eat whenever the heck she wants to eat

I'm sure there's more. Food is so central to our existence. But in the end, I really only know two things: (1) I'm super happy and grateful that Madeline now has permission to take her enzymes wherever she goes, and (2) I can never move to a different school district and go through this process again.

23 August 2020

Reading List for 2019!

Hey there! I usually write a teensy bit about the books I read each year, but since it's August and I've had everything except the descriptions ready since January, I'm just going to accept that this is the best I'm going to do for 2019's list and publish it anyway! You can find my lists for previous years here: 2018, 201720162015201420132012.

These are all listed in no particular order, but I did highlight a few of my favorites. Happy reading!


Top Nine Recommendations
  • Inheritance, by Dani Shapiro
  • Stiff, by Mary Roach
  • Where the Crawdads Sing, by Delia Owens
  • The Last Voyage of Poe Blythe, by Ally Condie
  • The Warden's Daughter, by Jerry Spinelli
  • Because of Winn Dixie, by Kate DiCamillo
  • Joey Pigza series
  • The Terrible Two series
  • The Incorrigible Children of Ashton Place series
 
Nonfiction

  • Inheritance, by Dani Shapiro (Loved this! Author finds out her father isn't her biological father and she grapples with that)
  • Packing for Mars, by Mary Roach (Crazy interesting! Read if you're at all interested in life in space!)
  • Stiff, by Mary Roach (Topic sounds morbid--cadavers--but this book is seriously amazing; I think about it all the time)
  • Girl, Wash Your Face, by Rachel Hollis (Pulled out so many gems; really motivational but also author bugged me sometimes)
  • Have a Little Faith, by Mitch Albom (Nice read)
  • The Survivor's Club, by Michael Bornstein (Story of a very young survivor of Auschwitz; nicely written)
  • Someone Named Eva, by Joan M. Wolf
  • The Girl Who Survived: A True Story of the Holocaust, by Carol Bierman
  • The Life-Changing Magic of Tidying Up, by Marie Kondo
  • Don Lind: Mormon Astronaut, by Kathleen Lind
  • Some Writer! The Story of E. B. White, by Melissa Sweet (Nicely done author bio!)
  • Small Fry, by Lisa Brennan Jobs (Written by Steve Jobs' daughter; what a wild life)
  • American Moonshot: John F. Kennedy and the Great Space Race, by Douglas Brinkley (Really well done!)
  • The Man Who Knew the Way to the Moon, by Todd Zwillich
  • Alive: The Story of the Andes Survivors, by Piers Paul Read (This one's an incredible story)
  • Writer Rader, by Jack Gantos (Crazy good if you're interested in writing! Great for youth too; M loved it.)
  • The Sound of Gravel: A Memoir, by Ruth Wariner (Fascinating story of a girl who grew up in a polygamous family in Mexico)


Fiction
  • Where the Crawdads Sing, by Delia Owens (Excellent read!)
  • The Orphan's Tale, by Pam Jenoff (Liked this one; WWII book)
  • The 7 1/2 Deaths of Evelyn Hardcastle, by Stuart Turton (This one was pretty wild. I liked it but it does get a little dark by the end.)
  • The Chemist, by Stephenie Meyer (Man, she can spin a great story! SO MANY problems with this one, let's be honest, but it was SUCH a fun read.)
  • The Undaunted, by Gerald Lund (Loved this!)
  • Muddy, by Dean Hughes
  • In This Grave Hour, by Jacqueline Winspear (Maisie Dobbs)
  • The American Agent, by Jacqueline Winspear (Maisie Dobbs)
  • The Color of all the Cattle, by Alexander McCall Smith (No. 1 Ladies Detective Agency)

YA
  • The Last Voyage of Poe Blythe, by Ally Condie (Absolutely LOVED this one!)
  • My Lady Jane, by Cynthia Hand (Kind of a light, funny book; it follows history pretty closely for a bit and then takes a sharp turn to re-write history)
  • Terror at Bottle Creek, by Watt Key (Really enjoyed the books I read by this author)
  • Alabama Moon, by Watt Key
  • Dirt Road Home, by Watt Key
  • The Goats, by Brock Cole (Careful with this one)
  • The Trouble in Me, by Jack Gantos (A lot more raw than his other books. I was glad I read it, but wouldn't read it without any context for his work.)
  • Poison Diaries, by Maryrose Wood (Cannot express how much I hated this one! Didn't finish; it's seriously SO BAD)

Middle Grade
  • The Warden's Daughter, by Jerry Spinelli (repeat) (Love, love!)
  • Ashes, by Laurie Halse Anderson (Final in a trilogy; great series)
  • The Battle of Junk Mountain, by Lauren Greenberg
  • Front Desk, by Kelly Yang (Loved this!)
  • Louisiana's Way Home, by Kate DiCamillo (You can't go wrong with Kate DiCamillo!!)
  • Beverly, Right Here, by Kate DiCamillo
  • The Miraculous Journey of Edward Tulane, by Kate DiCamillo
  • The Tiger Rising, by Kate DiCamillo
  • Because of Winn Dixie, by Kate DiCamillo (repeat)
  • Crenshaw, by Katherine Applegate (Excellent!)
  • My Diary from the Edge of the World, by Jodi Lynn Anderson (Surprisingly thought-provoking; as a parent I think it made me feel very differently than a kid would feel)
  • Wrath of the Dragon King (Dragonwatch #2), by Brandon Mull (Completely love this series)
  • No Fixed Address, by Susin Nielsen
  • Merci Suarez Changes Gears, by Meg Medina (Awesome book!)
  • The Book of Boy, by Catherine Gilbert Murdock (Really great)
  • Shouting at the Rain, by Linda Mullaly Hunt (Fabulous!)
  • Out of My Mind, by Sharon Draper (This one's absolutely incredible; about a girl who can't speak)
  • Stella by Starlight, by Sharon Draper (Great book; historical)
  • Blended, by Sharon Draper (Good but not stunning)
  • The Beast, by Ally Condie & Brendan Reichs
  • Turtle in Paradise, by Jennifer L. Holm
  • Are You There God? It's Me, Margaret, by Judy Blume

Series
This was a really amazing year for middle grade series! So many of my favorites.

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READ THIS SERIES STAT! I laughed so hard but was also moved to tears. It's incredibly good.
  • Joey Pigza Swallowed the Key, by Jack Gantos 
  • Joey Pigza Loses Control, by Jack Gantos
  • What Would Joey Do?, by Jack Gantos
  • I Am Not Joey Pigza, by Jack Gantos
  • The Key that Swallowed Joey Pigza, by Jack Gantos
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Just go ahead and read this series too if you want to laugh!! There are a few others too.
  • Jack on the Tracks, by Jack Gantos  
  • Jack Adrift, by Jack Gantos
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Put this one at the very top of your list! I read the first one last year. Seriously one of my FAVORITE series in the entire world.
  • The Terrible Two Get Worse, by Mac Barnett & Jory John
  • The Terrible Two Go Wild, by Mac Barnett & Jory John
  • The Terrible Two's Last Laugh, by Mac Barnett & Jory John
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Really wonderful series. My kids all loved it, ranging from kindergarten up to fifth grade. Pleasure to read as an adult as well. So many funny things.
  • Mac Undercover (Mac B., Kid Spy #1), by Mac Barnett
  • The Impossible Crime (Mac B., Kid Spy #2), by Mac Barnett
  • Top Secret Smackdown (Mac B., Kid Spy #3), by Mac Barnett
  • Mac Cracks the Code (Mac B., Kid Spy #4), by Mac Barnett
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This series totally sucked me in. I loved it. I'm not going to say it's a literary masterpiece, but something about it made these characters more real to me than anything I've read in a long time. I binged it twice in just a couple of weeks.
  • Keeper of the Lost Cities (#1), by Shannon Messenger
  • Exile (KOTLC #2), by Shannon Messenger
  • Everblaze (KOTLC #3), by Shannon Messenger
  • Neverseen (KOTLC #4), by Shannon Messenger
  • Lodestar (KOTLC #5), by Shannon Messenger
  • Nightfall (KOTLC #6), by Shannon Messenger
  • Flashback (KOTLC #7), by Shannon Messenger
  • Legacy (KOTLC #8), by Shannon Messenger
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You will especially appreciate this series if you ever read Nancy Drew or the Hardy Boys. So ridiculous but funny. I truly think this is the perfect spoof of that genre.
  • The Case of the Case of Mistaken Identity (Brixton Brothers #1), by Mac Barnett
  • The Ghostwriter Secret (Brixton Brothers #2), by Mac Barnett
  • It Happened on a Train (Brixton Brothers #3), by Mac Barnett
  • Danger Goes Berserk (Brixton Brothers #4), by Mac Barnett
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This series is last but absolutely not least. It is hands down one of my favorites of the year! So smart, such a great premise, funny, and beautifully written! Read it! I'd say third grade up would love it.
  • The Incorrigible Children of Ashton Place (#1): The Mysterious Howling, by Maryrose Wood
  • The Incorrigible Children of Ashton Place (#2): The Hidden Gallery, by Maryrose Wood
  • The Incorrigible Children of Ashton Place (#3): The Unseen Guest, by Maryrose Wood
  • The Incorrigible Children of Ashton Place (#4): The Interrupted Tale, by Maryrose Wood
  • The Incorrigible Children of Ashton Place (#5): The Unmapped Sea, by Maryrose Wood
  • The Incorrigible Children of Ashton Place (#6): The Long-Lost Home, by Maryrose Wood

07 April 2020

Pandemic



Here's my daughter Madeline, wearing a mask before it was cool! To be honest, I have purposely never posted a picture of Madeline in a mask because I think it makes her seem like a sick person, and she's not a sick person. But now we all know that healthy people can wear masks too, and that it's even hip and cool to do it, so here is a picture of my healthy person, who also has a chronic lung disease, wearing a mask. (And a screaming baby who is now almost two and thankfully doesn't come to clinic appointments anymore, because we all know a screaming toddler is worse than a screaming baby when you're in a public setting.)

This picture was taken in July 2018 at one of Madeline's quarterly CF clinic appointments. She has to routinely wear a mask at her appointments, and so do any other CF patients in the building. People with CF have to stay at least 6 feet away from each other because they can spread germs that are dangerous for others with CF. Also social distancing before it was cool! We always try to stay far far far away from anyone who seems to be waiting near the pulmonary area, even though it would be nice to strike up a conversation with someone in a similar situation. Not worth it.

At the CF clinic, the rooms are completely cleaned between patients, and all of the care providers have to wear fresh gowns. At each appointment, I am usually looking at 6-8 highly educated, well-paid people all gowned up to discuss my daughter's health. That is a lot of attention focused on one little girl. When she was in the hospital in January for surgery, anyone who came into her room had to wear a fresh gown and gloves, whether it was the nurse coming in 20 times or a cleaning person or a 6-person crew of doctors. That's a lot of PPE to make sure that they don't spread germs from one patient to another.

And in our regular life, there is lots of hand washing and sanitizing and bowing out of family gatherings or other fun events when we know someone is sick. All the good stuff that's cool to do now! Lots of hoping that other people will stay home when they're sick so that Madeline can go to church and school and parties without picking up an illness that will, in the short term, make her miserable and cause her to take antibiotics and add 2+ hours a day to her already long treatments. Or that will, in the long term, cause potential lung damage that can literally take years off of her life.

So. It's April. Usually I post a few things about CF awareness in April, but I think we're all pretty tired of medical stuff right now so I'll refrain after this post. I just wanted to say that if you're really tired of staying home (like me!) and you need a little motivation, just look at this picture for a second. Why are we doing this? For people like Madeline. She's a healthy little girl, but she's also HIGH RISK for COVID-19 and any other respiratory ailment that comes her way. High risk enough that all of those highly educated, well-paid professionals gown up multiple times a year to focus completely on her health.

Thank you for staying home to protect Madeline, and all the thousands of other people who are also high risk. We can do this! (And maybe some of those hand-washing habits and staying-home-when-you're-sick habits will stick! That would be really cool.)

26 May 2019

Typical Visit to the Cystic Fibrosis Clinic


Madeline is supposed to visit her care team at the CF clinic every three months. This is standard care for people with cystic fibrosis and is a critical part of making sure that her health stays on track. One of these four visits each year is known as an "annual visit" and includes additional testing: an oral glucose tolerance test, basic labs to check her vitamin levels, and a chest x-ray. Last summer we took some pictures throughout the day so we could capture what a typical annual visit is like for Madeline these days.

When a clinic day comes along, my kind father-in-law usually comes up to watch the little ones so I can just focus on Madeline for the day. I'll let a baby tag along for the first year or so and it's no big deal, but there comes a day when it's too distracting. Last month Evan proved that he is now far too disruptive, so I'm officially benching him for future visits. Anyway, we drive to the Children's Hospital of Philadelphia (CHOP), which is 1-1.5 hours away depending on traffic, for Madeline's clinic visits. We are gone all day long, and it can feel like a really long day! It's nice to spend some time together, though, and we always have a good time hanging out.

An annual visit begins with an oral glucose tolerance test (OGTT), which is done to see if Madeline has developed CF-related diabetes (CFRD). About 15-20 percent of teens and 35 percent of adults with CF develop CFRD, so it's important to stay on top of this (you can read more about CFRD here). This screening was added to our routine when Madeline turned eight, so this summer will be her third glucose test. The OGTT starts bright and early because she has to fast beforehand. We arrive at the lab at 8:00 and they draw her blood before sending us upstairs for the glucose drink. She gets her blood drawn again at the one-hour mark and then at the two-hour mark. They also go ahead and draw her annual labs that check vitamin levels and other things to make sure she is healthy.


We have to stick around the general area during her glucose test, so we chat, read books, and maybe play a game. She also gets a chest x-ray done during this time. The x-ray is done once every year to check the health of her lungs and see if lung damage has progressed over the year. The x-ray is easy to do, but I always dislike this part because while her x-ray looks good, there are always little signs of CF doing its thing. This part of the visit is so much nicer now that Madeline is older and doesn't require any wrangling.


Last summer we had a cute little baby to keep us company. He was so small! You might notice that Madeline is wearing a mask in some of these pictures. She has to wear a mask if she's in any open areas of the hospital, including all halls and waiting rooms. This is really important for infection control and to reduce the risk of cross-infection of people with CF. The rooms are fully cleaned after each patient, and all of the doctors and nurses wear disposable gowns and gloves when they come in. It's serious business. The patients who have the most dangerous bacteria have special clinic days so that other patients have even less risk of being exposed to them. When Madeline was a baby, they always had her as the first patient of the day so the clinic would be as clean as possible.


By the end of all this waiting and drawing of blood, it's late morning and Madeline is absolutely ravenous! As soon as the glucose test is over, she can eat a quick bite and then it's on to the main portion of the visit. From this point on, everything that happens is done at each clinic visit, not just the annual one. First a nurse gets her height and weight.


Then the nurse checks her blood pressure and oxygen saturation levels. She also gets a throat swab done every time. This swab is cultured to check for any bacteria growing in her lungs. It takes about a week to get the results back, and the clinic uses the results to know if they need to treat any particular bacteria with antibiotics to prevent lung damage.


After all the vitals are done, Madeline does a Pulmonary Function Test (PFT) to test her lung function. It's a little complicated to explain, but basically she blows into a tube and it measures her lung volume.


After that, we go back to the room and meet with Madeline's CF team. It includes her pulmonologist (main doctor), a nurse, a dietitian, a social worker, a physical therapist, and sometimes a pharmacist or resident. We manage to underplay CF in our day-to-day life, but when you look around and realize that six highly educated and well-paid adults are gathered in a room to discuss every aspect of your daughter's health, well, it's clear that CF is a pretty big deal.

The nurse goes over Madeline's medications and makes sure that their list is current. One of my primary goals as a mom is to make sure that Madeline is prepared to take charge of her own CF care, so for the past few years she has gone with a checklist so she can do this part with the nurse herself. Then the nurse and/or doctor ask all kinds of questions about her health, including recent illnesses or various issues regarding her gut and lung health. We discuss her growth and appetite and any eating concerns, with the dietitian taking the lead as appropriate. Often this becomes a brainstorming session to see how we can maximize her calorie intake. We talk about any necessary adjustments to her enzyme dosage, whether she has had belly pain or headaches, wheezing, shortness of breath, etc. We discuss her activity level and what kinds of physical activities she is currently involved in.

The doctor listens to Madeline's lungs and gives her a complete check-up. We discuss her x-rays, PFT results, glucose results, and any adjustments to medication. The social worker will often check with us to see if we need any help with school or insurance issues or anything else. The physical therapist spends some time doing various exercises with Madeline and teaching her proper techniques for coughing or doing her breathing treatments. After that, we make sure we're all on the same page for a treatment plan, and then off we go. We pretty much always eat somewhere before heading back home. We used to always go to the cafeteria, but lately Madeline has wanted to check out some other places in the area, which is fun.


We usually get home late afternoon, where my angel father-in-law often has dinner waiting for us, and then we wait another three months before doing it all again! I always have visions of doing some fun things in Philadelphia before going home, but the truth is that we're both usually pretty wiped out by the end of the day! So grateful that we live near one of the best pediatric CF clinics in the entire country. I love Madeline's doctor and have full confidence in the care she receives there.