Mateo at 2 months

JKB_0663mJKB_0662  Mateo has accomplished a lot in the past month! His breathing is still loud, but much less squeaky than it used to be. He still has uncomfortable reflux that awakens him, but with trial and error we are working on getting that addressed. Feeding is slightly better: In the mornings we have successful nursing sessions and hoping that will increase to include the rest of the day by the next month!  Bottle feeds are better too, as he’s only rarely having gagging and choking episodes. We do need to be on the ball with sleepy and hungry cues- if we misinterpret them he goes on a 30-60 minute crying jag that’s hard to recover him from. Luckily that has only happened a handful of times. Going outside sometimes helps flip his switch. I remember Lucas being the same way as a tiny infant. In fact, well through his 6th or 7th month we had to walk him up and down McCandless Street (when the weather was good) or show him the outdoors through his bedroom window to soothe him! And now Lucas loves being outside and loves nature. I hope that means Mateo will too!🙂IMG_1123bsm

Mateo is also now smiling and reaching for our faces, which we love🙂

IMG_1468smStats: Height: 22″ (10th percentile), 11lbs 7oz (35th percentile). He has maintained his spot on the WHO growth curve weight chart so that’s encouraging! IMG_1051sm

Lucas’ Annual Birthday Interview, age 8

12345678▪ Favorite colors: “blue, yellow, pink, orange, green, clear, silver, gold and navy.”
▪ Favorite activities: “go to “Jump” (a trampoline park), ride bikes with Daddy, play Minecraft, and build things”
▪ Favorite toys: “Legos”
▪ Favorite friends: “Luca and Mira”
▪ Favorite foods:  “soy glazed salmon, peaches, pineapples”
▪ Favorite book: “Harry Potter books”
▪ What makes you happiest? “being with Gigi and snuggling Mommy Daddy and Mateo”
▪ What do you want to be when you grow up? “a scientist and an inventor”
▪ What new thing would you like to try this year? “algebra”
▪ Where in the world would you like to go on vacation some day? “Kyoto, Japan”
▪ What do you love to learn about? “science, physics and nature”
▪ What are you really good at? “math and also going into the woods by myself.”
▪ Which three words describe you? “fun, playful, happy”
▪ What will you be doing in 10 years?  “Driving!”
▪ Please give me a recipe: “mix flour, water and dandelions and smash it up in a tea holder and put it in the fridge.”
▪ Give some advice/words of wisdom to Mommy: and to Daddy: “you should make a torch.”
▪ Describe a perfect day: “I would have all the custom Minecraft mods I ever wanted and all my friends would be available for playdates and I would eat my favorite foods and we would go to a hotel!”
▪ How would you spend a million dollars? “I would buy a giant mansion and a cool car”
▪ What’s your favorite family/holiday tradition? “When Daddy dresses up as a gorilla at Halloween and scares all the kids from the front porch!”
▪ STATS: Lucas is 49.5 inches tall (40th percentile), 54 lbs (40th percentile), and he wears size 7-8 tops, 6-7 pants and kids’ size 3.5 shoes.

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Happy 8th Birthday Lucas

IMG_1179smLucas had a pottery painting party this year and it was a big success! This is also the first year I’ve been able manage and redirect all the intense boy-energy without someone ruining the games planned, crying, or attempting to run amok in the neighborhood. 😮😬 While we waited for everyone to arrive, the boys started wrestling and throwing things and piling on top of eachother so I harnessed that craziness into a game of Red Rover, a suitcase dressing race that was a huge hit, IMG_1154smand while STILL waiting for everyone to show up, an unplanned jumping-off-the-couch contest. All went well and after burning that steam they were ready to sit down and paint. Afterwards we ate pizza and cake and sent the kids home jacked up on sugar! 😉 Lucas had a great day and is happy to be EIGHT!

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Mateo at 1 month

Mateo’s status update at one month can really only include how he’s eating and sleeping- as that’s all that babies do at this age! But in order to report on that, i have to include the fact that Mateo began his life with a laryngomalacia diagnosis- which affects both eating and sleeping. Laryngomalacia means softened or floppy larynx (voicebox). Each of his inhalations is accompanied by a high pitched squeak as he tries to draw air in through the cartilage in his windpipe that’s flopping closed on itself. And when it’s not squeaking it sounds scary and obstructed. But since he’s only turning blue around his mouth and nowhere else then he is reportedly getting enough oxygen that we dont need to intervene medically. Most kids grow out of this condition by age 2 at the latest, though a lot are better earlier than that. Some need surgery, feeding tubes, supplemental oxygen or apnea monitors. Teo’s ENT sent a scope camera down his throat and determined he was not a surgical candidate at this time though we will reassess that in a couple months. His feeding specialist doesn’t think he needs a feeding tube until he starts refusing feeds or stops gaining weight at the appropriate rate. Which usually doesn’t happen til 3-4 months old. So that’s all good news.

It’s been difficult to find positions that maximize Teo’s breathing capacity (left side and belly sleeping are the winners) and it’s been difficult to feed him as he cant coordinate breathing and swallowing very well. It takes 45-60 min to feed him (double to triple the time it should take since it’s such hard work for him) and then he’s right back asleep- either in arms or in a vibrating infant lounger. He sleeps about 1-2 hrs before he wakes for a diaper change and feed. We occasionally have about 5 min of alert time (if any) before he starts crying. We are looking forward to his 2nd month with hopes that he starts to find some relief from his discomfort, has some alert awake time and learns to smile!🙂

Mateo’s one month stats:  Height: 21″ (25th percentile) Weight: 9lbs 7 oz (35th percentile)

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Lucas’ Birthday Interview

I ask him these same questions every year. Love this chance to talk with Lucas about his favorites and to show him how much we value his thoughts, his dreams and HIM!

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The photo above is from Carter Mountain Orchard here in Charlottesville. We took the first photo just before his 4th birthday and once every year after!

▪ STATS: Lucas is 47.5 inches tall (40th percentile), 50 lbs (40th percentile), and he wears size 6-7 tops, 6-Slim pants and kids’ size 13 shoes.

▪ Favorite colors: “shiny orange, bright yellow, highlighter pink, blank white, light green”

▪ Favorite activities: “swimming, rock scrambling, singing, eating”

▪ Favorite toys: “Legos and iPad”
▪ Favorite friends: “Lily, Mira, Luca, Josh, Leo”
▪ Favorite foods:  “soy glazed salmon, peaches, pineapples”
▪ Favorite book: “Jack and Annie’s Magic Tree House series”
▪ What makes you happiest? “Mommy, Daddy, and snuggling while watching a video together”
▪ What do you want to be when you grow up? “a scientist, an inventor, and a city pool snack bar attendant”
▪ What new thing would you like to try this year? “singing lessons”
▪ Where in the world would you like to go on vacation some day? “China, Japan, and Vietnam”
▪ What do you love to learn about? “math, reading and writing”
▪ What are you really good at? “being a cat”
▪ Which three words describe you? “I’m kind, smart, active, and I’m a weirdo!”
▪ What will you be doing in 10 years?  “Driving!”
▪ Please give me a recipe: “Mix walnuts and oats and nutella and put it in an ice-cream cone. Put strawberries on top. It’s called a Super Dump.”
▪ Give some advice/words of wisdom to Mommy: and to Daddy: “You should go in the woods with me and watch Pokemon with me.”
▪ Describe a perfect day: “I would have lots of screen time and play Minecraft with Daddy, and I would paint our back woods with silver spray paint and we would all spend time together with Mosby and Gigi too and I wouldn’t fall out of a tree.”
▪ How would you spend a million dollars? “I would buy lots of shiny spray paint, and have an awesome house and fun backyard with lots of trails and give some to poor people and save some too.”
▪ What’s your favorite family/holiday tradition? “I like lots of things! Easter egg hunting and when the kitchen is decorated for my birthday and when I come downstairs Christmas morning and the presents are out!”

Thank you

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While this whole first year without Sophie has been an endless emptiness and heartache, we’ve been working hard to overlay more enjoyable feelings and experiences on top of that baseline sadness (which I imagine will always be there). We’ve filled our weekends with outings and visits, staying busy and distracted from the pain. I think I might still be in denial though… I just can’t believe that this happened. Sometimes it feels like “did Sophie ever really exist?” And sometimes it feels like I’m looking for her and have no idea where she is and just want someone to give her back to me. How could brain cancer happen to her? There’s no history of cancer in our family, we are conscientious of healthy eating and living, and I thought we had gotten a hang of improving her below-average immune system she was born with. And how could she be gone? Some kids survive brain cancer. Why not OUR baby? Anyway, we wouldn’t be able to get through this sadness without support from our families and friends. Sometimes that support means giving us space to grieve as a tiny family of 3 and sometimes that support means financing her memorial service and remembrance tree (planted in our backyard and about to turn a beautiful autumnal red), or helping us celebrate Sophie’s spunky cuteness by enjoying a “cupbake” for her on her birthday. Focusing on endearing things about her without thinking about those things being gone now was really helpful. I loved seeing the photos pour in and knowing that you all took the time to remember and appreciate her. And if you’d like to participate and have a cupbake *after* her birthday we would REALLY enjoy adding more people to our photo collage- we have pictures of babies holding plush cupcakes, kids with wooden/plastic cupcakes, drawings of cupcakes, anything!  You’ve all shown us love and thoughtfulness in so many ways during Sophie’s illness and again after we lost her. I hope you know how important that was (and is) to us and how grateful we are that you care so much about us, and I hope you also know that after December 29th, it became impossible to thank you all for your kindnesses because writing a ‘thank you’ somehow made us re-live the trauma of her death- the reason why we were writing to you.

Sophie’s birthday started the season of big deal ‘firsts’ for us. Laith’s first birthday without her, Lucas’ first birthday without her, the first Halloween since 2007 that I didn’t have a baby on my hip, and soon to come: first Thanksgiving and Christmas without her. Though it might just be another distraction-from-the-pain technique, I’ve decided to focus on small (and big) things that I am thankful for each day through this season. It’s quite hard to feel unadulterated thankfulness when there is such an undercurrent of defeat and loss and brokenness in my heart. But in my mind, I know there are so many other non-child-loss ways that we are actually quite lucky and blessed. So my first item of thankfulness is the biggest: I’m grateful for all of you. I know of many families through our pediatric cancer groups who suffered similarly to us but without a team of wonderful people holding them up like you have for us. Thank you. Thank you.