Five Years

by Kayte

Five years ago Max and Lola came into our lives unexpectedly and tumultuously. We set out on a parenting journey that we weren’t prepared for, but it has taught us so much about love and strength and who we are and what we are capable of. In the years since their birth we have celebrated countless victories, overcome unimaginable adversity, experienced unconditional love, and felt our hearts break into a million pieces.

In the early days I naively thought that “this NICU thing” would be over when we finally brought Max and Lola home from the hospital, but I have since realized that this is something that, for better and for worse, will shape us for the rest of our lives. I’ve often wondered if I would go back and change things if I could, and I think as parents we would do anything to protect our kids, but I wouldn’t trade them for anything.

We remind ourselves that we are incredibly lucky to have our family together; thriving, happy, mostly healthy. Every day together is a miracle, even in, especially in, those most mundane of moments when things just feel ordinary. Happy 5th birthday Max and Lola. We are in awe of you. We are SO proud of you. We Love You.


The Lighthouse

by Kayte

Max has been interested in storytelling lately – he tells us the story, and we write down the words. This story was inspired by backyard camping and a book we are reading about a lighthouse. Max even wrote his own name at the end!

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IEP Graduation

by Kayte

We had Max’s annual IEP (Individualized Education Plan) meeting at school today and he has officially graduated from special education services. He will start a general ed kindergarten class in the fall. From 25-weeker to average 5-year-old. Amazing.

Due to a clerical mix-up Lola’s IEP meeting isn’t scheduled until May 17th, which we are super upset about because it leaves a lot of things up in the air for the next two months. But their assessment calendar is so booked they couldn’t change it. Sigh.


Bittersweet Anniversary

by Kayte

Today marks the one-year anniversary of Lola’s discharge from her month-long hMPV-/MRSA-pneumonias + fungal-infection-scare hospital stay. It’s been a rough medical year since then; we’ve dealt with chronic ear infections, multiple surgeries, and another pneumonia hospitalization. Worse than that is the fear that grips us every time Lola spikes a fever, and a loss of confidence in our normalcy that I didn’t experience post-NICU. I’m conflicted between feeling invincible because we have conquered so much, and feeling that we have cheated death and are flying too close to the sun. Looking back at where we started I am in awe of the miracle of life and medicine, but I am also all too aware of their fragility and limitations. Ignorance is bliss as they say, and we have learned much these last five years. I am hoping time will heal these emotional wounds, as time continues to heal our little miracles and grow them into strong[er], [more] resilient little kids.

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On a more normal note, we spent the morning at the pediatrician’s office with two mildly sick kids. Poor Maxie has had a cough since last Monday and a runny nose that got markedly worse over the weekend. Max’s O2 sats were on the low-end of normal and the doctor said his lungs sounded wheezy, so we’re starting breathing treatments and have a prescription for antibiotics if Max doesn’t get better in the next day or two. Lola spiked a little fever this morning and had one goopy eye, but luckily her lungs sounded clear as a bell (yay steroids!). The pediatrician suspects that Max might be on the recovery side of this bug while Lola might just be starting it, but we have an antibiotic prescription for her too if she needs it.

We weighed the kids at the doctor’s office today. Max is approaching the 40-pound mark which means yet another carseat transformation; he’s too heavy for the LATCH anchors that make carseat installation super easy, so now we’re struggling to install the carseat using the shoulder-lap belt. After he grows out of this carseat configuration (65lbs/49in), he will move to a booster seat and use the car’s regular seatbelt (vs. the carseat’s 5-point harness). At 40 pounds he also exceeds the weigh limit for our regular stroller, but we haven’t really been using it much lately. Both kids prefer to walk and Max can unbuckle himself to climb out and/or unlock the brake and push himself around wheelchair-style. Slowly but slowly we are moving away from mounds of baby equipment.

Lola weighed in at 32-1/2 pounds – not only has she broken the 30-pound mark for the first time (yay!) but it’s crazy to think that she weighed 10 pounds less a year ago when she lost so much weight in the hospital. She’s 50% bigger than she was a year ago – wow!

Weight
Max 39-1/2 pounds
Lola 32/1/2 pounds


Composition

by Kayte

I walked into the living room this evening to find Max’s cars arranged in a beautiful composition. It reminded me of when he was two years old and organized all the shoes in the nursery.

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Splash!

by Kayte

The street in front of Max and Lola’s school turns into a river whenever it rains. Even Max’s rubber boots couldn’t keep him dry today.


Hemangioma Post-Op

by Kayte

We were supposed to go to the doctor’s office for Max’s post-op followup, but Brody’s work schedule got messed up and we wouldn’t have been able to get Max to the doctor without also pulling Lola out of school. The doctor’s office offered to do the post-op over the phone, so I snapped a few pictures of Max’s recovering scar and emailed them to the doctor who said everything looked great. I spoke with a nurse on the phone who went over all the technicalities, including the fact that the biopsy of Max’s hemangioma came back negative, and she told us that we were in the clear.

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Poopy Trained

by Kayte

A full year after his sister, I am officially declaring Max potty trained! After two weeks of using The Poop Basket with no accidents, we exchanged daily rewards for the ultimate prize: a battery-operated, motorized, Gordon the Tank Engine to add to our railway set.

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As with Lola, we’ve still been putting in Max in diapers overnight (because sleep still trumps undies), but he has been waking up dry most mornings. One morning I even heard him get up before the clock was on, go to the bathroom all by himself, and then go back to bed. Things are slowly but surely getting easier.


Sensory Walk

by Kayte

The kids went on a sensory walk at school today and Brody & I were lucky enough to be available to volunteer. We set out bins of cereal, leaves, feathers, cotton balls, gelatin, cooked pasta and shaving cream. The kids all took a turns walking through each bin, ending with the water/washing station. Max and Lola both did great with all the different textures, especially the gelatin which we made at home. What a fun activity!

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Crew Cut

by Kayte

I’m still trying to figure out Max’s hair which is thick but fine and slippery and refuses to swoop or be styled. This time I had it cut pretty short along the sides and back, leaving just enough on top to do something with.

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Lola got her regular bang trim. Her hair is finally starting to fill out nice and even around shoulder-length.


Button Box

by Kayte

Lola has a recent obsession with buttons – she constantly points them out on clothes and in books. She also loves sorting and stringing. I got it in my head to get her some buttons to play with, and found a box of buttons on eBay plus a book to go along with it. The button box we got is amazing with vintage buttons of many different sizes and materials. Seems like a lot of history in there. We’ve had so much fun reading and mimicking the book – sorting by color, spinning buttons on a string, and finding the special metal & jeweled ones. This will be good for hours of cheap, creative fun.

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Backpack Bears

by Kayte

Max and Lola’s first few weeks of school have been going well. Lola has adjusted very well to her new classroom and teachers. Surprisingly, Max had a harder time with the new arrangement. The second week of school he started crying and clinging to me at dropoff, which he has NEVER done before: not even last year when we dropped him off for the very first time. When I asked him what was wrong, he said he missed his sister. Awwww. But things have gotten better since then. They both happily run to the car when it’s time to go to school and easily kiss us goodbye at the classroom door.

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The Poop Basket

by Kayte

Earlier this summer we decided to take a break from potty training and we put Max back into diapers. We were getting so frustrated cleaning up poopy accidents and washing laundry, and it just didn’t seem to be clicking for him. Things were getting a little tense so we decided to take a break, let some time pass, and wait for a fresh start. He still wasn’t giving us any readiness signs, but fast-forward three months later Max’s teacher wanted him OUT of diapers so we decided to try again over the long Labor Day weekend.

This time we brought out the big guns: The Poop Basket. We filled a basket with toys and treats, put him in undies, and told him every time he pooped in the potty he would get a prize. Well the very first day he pooped in the potty SEVEN times (Lola went FOUR) so it cost me $11 in dollar-store chotchkies but, as they say, not having to change a diaper was priceless. Things slowed down a bit after that first day, but we successfully stayed diaper-free throughout the whole weekend with ZERO accidents. Hooray!

I figure I’ll keep the Poop Basket going for the next week or so, and then start weaning the value of the prizes and eventually phase it out completely. Until then we are enjoying living in a diaper-free household.

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Gopher Trap

by Kayte

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We recently cleaned up a small patch of dirt in our back yard and planted a drought-tolerant lawn so Sudlow and the kids would have a bit of grass to play on. Of course that very week a gopher decided to take up residence in the area; digging tunnels and wreaking havoc on our poor plants. So I went out and bought traps, dug some holes of my own, and eventually caught the culprit. A few weeks later Max brought home this drawing from school. Art imitates life.

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Vascular Anamolies Clinic

by Kayte

We took Max to a Vascular Anamolies Clinic to have his hemangioma looked at. The appointment was supposed to be an opportunity to meet with four different doctors at the same time: pediatric surgeon, plastic surgeon, interventional radiologist and dermatologist. But, even though we booked this appointment months in advance specifically on a Wednesday (which is the only days they hold the clinic) and spent a good deal of time getting insurance approvals and drove downtown during morning rush hour…only one doctor showed up. The pediatric surgeon said Max’s is a fairly straightforward case: the hemangioma probably won’t shrink any more than it already has, and leaving it puts Max at risk of the skin catching/tearing, especially as he gets more active in life. The surgeon recommended that the hemangioma be surgically removed, a procedure that is statistically safer than getting in your car and driving to the doctor’s office. Which is all fine and pretty much what we expected, but it would have been way less hassle to go to a local pediatric surgeon and hear the same thing. I think our pediatrician will still tell us to go to the clinic for the surgery since it does require general anesthesia and Children’s Hospital specializes in kids.

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Weight: 36 pounds
Height: 3ft 5in


A Ship With a Crow’s Nest

by Kayte

We were doing some painting today and it was the first time I’ve ever seen Max consciously put a specific image to paper. And it really looks like what he said it is! First he drew the green ship, then he added a red crow’s nest and finally he painted blue water all along the bottom. It was really neat to watch him create something so intentional

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Sunflower

by Kayte

Mr. Maxie green eyes.

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Direct Hit

by Kayte

Max pooped in the potty! Apparently all it takes is proper motivation: dad bought him a bag of Jelly Belly beans as a reward. He did it all by himself too. I was cooking breakfast in the kitchen when all of a sudden I heard a little voice from the bathroom: “Mommy I pooped!” Let’s hope this is the start of a new chapter in our bathroom book.

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Sudsy

by Kayte

I don’t think there’s any kid who loves a dog more.

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Doctor’s Orders

by Kayte

Max has been wearing underpants since March and has been doing really great with pee…BUT for some reason the poop-in-the-potty has not been clicking. For two months he has been pooping in his underpants, and for two months we have been cleaning it up. Everyone I’ve talked to says “it’s a boy thing” but we are really getting frustrated with it. How a pants-load of poop is not enough motivation to go in the toilet is beyond me. At our last wellness visit Max got an official Rx to “poop in the potty” – doctor’s orders!

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This past week we finally ditched the underpants and went back to cloth diaper covers without the liner. It makes it easier for us to clean up, but won’t absorb the pee so he can’t revert back to peeing in a diaper. Any advice would be most appreciated – we’re at the end of our rope with this one.