Sea of Green

by Kayte

We’ve had some big rains in Los Angeles this winter and no where is the effect more stunning than at our local hiking grounds. This is what it looked like just this past Thanksgiving

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November 2016

…and this is what it looks like now! It was a really neat day for a hike. There was a storm coming in and we watched the clouds roll in over the hills. We got back in our car just as the first drops were starting to fall.

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PALs – Crazy Hair Day

by Kayte

Max and Lola had Crazy Hair Day at school today. One of the moms from Max’s class does hair for a living, so she came in with all her professional supplies and did crazy hair for the whole class. Max came home with a gold-and-silver mohawk. I sent Lola to school with four bunches and four bows in her hair.

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They also wore their Bob Dylan t-shirts because Bob Dylan has crazy hair.

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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


Character Award

by Kayte

Lola received her second student of the month award for the school year: the trustworthiness award for somebody who is honest and trustworthy – Lola!

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The Original Five

by Kayte

For the first time in two years the original five NICU grads from 2012 were back together again! Katrina and Jacob came in for the holiday weekend and we had an epic playdate with seven kids under the age of five. It actually wasn’t as crazy as it sounds. After nearly five years I think we’re finally getting the hang of this thing.

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Lunch with a Lovebug

by Kayte

Brody and I joined the kids at school today for lunch with our little lovebugs. They were thrilled to see Daddy, who doesn’t get to come to as many school events as I do because of work. I made the kids a special lunch of heart-shaped sandwiches, watermelon and strawberries and Daddy brought them ice blended chocolate shakes – a super special treat!

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Preschool Pirates

by Kayte

Lola and Max had their two-month followup with the eye doctor to see how the new glasses are working out. The doctor was very happy with how both kids were seeing with their glasses; he said Lola even scored better on her eye exam today than back in December. The doctor did recommend that we patch both kids’ left eyes for 1-2 hours a day to help strengthen their eye muscles. Thank goodness it’s the same eye for both kids because I have a hard enough time keeping my rights and lefts straight. Lola’s patch is for amblyopia: her vision in her left eye is much better than her right, so the patch gives the right eye a chance to get stronger. In Max’s case it is strabismus, or cross-eye, and again the patch gives the right eye a chance to get stronger.

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There are three different kind of patches for kids: a band-aid-type patch that sticks on to the skin around the eye, the traditional pirate patch, and a piece of fabric that fits over the eye glasses. The doctor gave us some of the sticky-type patches for now, and boy those did not go over well! They’re supposed to be good for littler kids who won’t willingly keep the patch on, but Max and Lola were not happy about it. I ended up just sticking it on to the lens of their glasses for today. I’ve ordered some of the fabric patches which I’m hoping will be more comfortable, and in the meantime we have some pirate patches in our dress-up box that will do the trick. Arghhh!

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Happy Birthday Trees

by Kayte

We took the kids to a playdate at The Skirball to celebrate the Jewish holiday of Tu B’Shevat. We learned about planting trees and observed trees on the museum grounds. We sang Happy Birthday to the trees in English, Spanish, Hebrew and American Sign Language. We read books about trees and sampled many different tree fruits; olives, pomegranate arils and raisins (technically, a vine?). Finally, we made tree crafts: date balls, orange-clove pomanders, and a family tree! It was a fun new experience. After the playdate the kids got to go play at Noah’s Ark which they have been asking to do for weeks now. It was a full, fun day celebrating the trees!

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Cleared Up

by Kayte

As of Wednesday Lola still had a little bit of lingering cough, so we scheduled another doctor’s appointment just to be on the safe side. Her cough started January 20th so today would have been three weeks of coughing. Magically she woke up this morning completely cough-free and we were able to cancel the appointment! The nurse laughed that she’s never sure if it’s a good thing when I call, but today at least it was a good call. I joked that hopefully we won’t see her again until the kids’ wellness visit in April. Ahh morbid medical humor. Knock on wood.

This adenovirus experience adds a little bit of believability to my calming mantra: not every cold turns into pneumonia, not every cold turns into pneumonia…


Buildings Study

by Kayte

I was lucky enough to join Lola and Max at school two days in a row for fun activities. This year their curriculum has been broken up into two-months studies that focus on all sorts of different things: trees, clothes, pets, etc. Today was the end of their most recent Buildings Study and to celebrate they built gingerbread houses.

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When we are outside, children often ask questions about our building. They want to know the height of the school building, what it’s made of, and how strong it is. They also ask many questions about the way it looks. Their ongoing interest in our building helped us realize that buildings would make a good study topic. As we study buildings, we will learn concepts and skills in science, social studies, literacy, math, the arts, and technology. We will also be using thinking skills to investigate, ask questions, solve problems, make predictions, and test our ideas.

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100 Days of PALs

by Kayte

I joined Max and Lola at school today to celebrate 100 School Days. It’s not something we did when I was a kid (that makes me feel so old to compare their experiences to my childhood?) but I guess it’s a big thing these days. There are three different preschool classes at Max & Lola’s school right now, so they broke the kids into mixed groups and rotated between the different classes to complete different 100s activities. Max and Lola inked 100 fingerprints, dabbed 100 bingo dots, painted 100 gumballs, and beaded a 100-fruit-loops necklace. For the grand finale all the classes joined together in the auditorium to take 100 licks of a lollipop. Yum!

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Rhinorrhea

by Kayte

It appears that the rest of the family caught the adenovirus that Lola had last week, and we spent the weekend sick, sick, sick. We didn’t feel too awful, but I have never experienced runny noses like this before. We literally used up boxes and boxes of kleenex over the course of this weekend. Ironically Lola seems to be recovering while Max and I are in the thick of it, and it looks like Brody might escape it completely. I talked to a friend whose family had something similar, and she said it took almost three weeks for things to clear up completely. Yuck. As much as I don’t like being sick, it was a nice cozy, rainy weekend to lay low, and I am happy with any sickness we can fight off at home that doesn’t turn into pneumonia. #Perspective. Maxie stayed home with me today, but Lola was okay to go back to school. I think those maintenance steroidal breathing treatments are giving her a much-needed extra boost to fight this stuff off.


Adenovirus Followup

by Kayte

After a few days of antibiotics and round-the-clock breathing treatments Lola started feeling much better. Her fever is gone, the cough is more dry, and she has been back in school. Out of an abundance of caution the pediatrician wanted to see Lola again today, and will continue to follow up with her until this cough is completely gone, but he said everything looks much better. We can cut back to every-six-hour breathing treatments during the day and will finish out her 10-day course of antibiotics.

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Assembly Line

by Kayte

The kids were busy today making custom Valentines today. I haven’t had to buy greeting cards in almost five years!

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Adenovirus

by Kayte

Over the weekend Lola’s cough got more junky, and yesterday she developed an ongoing fever. She stayed home from school this morning and we went back to the pediatrician this afternoon. They performed a rash of tests for RSV, flu, strep, and UTI (after an uncharacteristic bedwetting incident last night). The nasal swabs gave her a bloody nose (all over my white t-shirt), but a popsicle helped cheer her right back up. All the tests came came back negative so our pediatrician suspects it may be adenovirus which is going around right now. This virus causes fever, congestion and cough, but tends to stay in the upper respiratory tract (nose/throat) and not invade the lungs. Crossing our fingers that this is all it is and we can get through a regular non-hospitalized illness. The doctor sent her home with antibiotics (just in case, since the cough has been 10+ days) and every-four-hour breathing treatments (including overnight, Zzz…) until the cough gets better. She can go back to school when she’s fever-free with improving symptoms. We spend a lot of time in doctors’ offices.

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I’m trying not to freak out as we approach the one-year anniversary of Lola’s first pneumonia, but she’s following an eerie pattern of late-January sickness that is turning my stomach into knots. On the plus side she has had no fever; I just have to keep reminding myself that not every cold turns into pneumonia, not every cold turns into pneumonia…


Sushi Saturday

by Kayte

Today was a day of driving around Los Angeles and errands. The kids seem to enjoy being out and about on the weekends: given the choice they always want to stay out rather than go back home. Today we gave them the choice to go home for lunch or eat at a restaurant, and the answer was a resounding “Restaurant!” We ate at a sushi restaurant and snapped some silly pictures, which reminded me of this silly photo series of the boys at another restaurant, which ironically just happened to be almost exactly (how’s that for an oxymoron?) two years ago.

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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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Back to PT

by Kayte

The New Year means a new benefits cycle for insurance, so we were able to re-start Lola’s PT at the clinic. It was a happy reunion with our two favorite therapists. They were impressed with Lola’s progress over the last few months, and they really increased her workload. She worked on balance, did strength exercises, climbed stairs, navigated the obstacle course and stretched her legs. We’re looking forward to having this session back in our weekly rotation.

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5-Day Cough

by Kayte

Last Friday Max and Lola both came down with a cough. It hasn’t been too bad, just a little gunky, no fevers, no labored breathing, but after five days it hasn’t gotten much better either so we decided it was time to take Lola to the doctor. Luckily the pediatrician said her lungs sound clear, and told us to just keep on with breathing treatments. He said if it’s not better 7-10 days from onset (since last Friday, so next Monday) to bring her back to check things out. In the meantime she’s fine to go to school.

We also talked about the pulmonology visit, and our pediatrician fundamentally disagrees with trying to fatten Lola up. While he does agree that more weight will protect her from illness giving her more reserves, he said that is only true of healthy muscle weight, not just any fat weight. He did agree that the sleep study was a good idea, because sometimes shallow breathing overnight (in Lola’s case 12 hours worth) can allow gunk to build up in the lungs and trigger pneumonia.

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