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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Wizard of Oz

by Kayte

Max and Lola had their second annual trip to the theater this week to watch The Wizard of Oz. This year daddy was able to come too! This musical wasn’t quite as well suited to young kids as Seussical was – I didn’t realize that these performances weren’t necessarily FOR kids, just that last year’s happened to be perfect. Either way both kids sat through the whole performance very well (much better than last year) and we had LOTS to talk about for the rest of the day – flying monkeys, melting witches, tornadoes, etc.

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I laughed when I saw that this year’s series of pictures is exactly the same as last year’s: bus ride, theater, stage. Don’t worry. Max is happy about Wizard of Oz; he’s not so happy about me trying to get him to pose for a picture.

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Sepia

by Kayte

Lola’s teachers surprised us with a belated Christmas gift from Lola. Every year they take portraits of the students in fancy clothes and give the parents a framed copy.

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It reminded me of this old Western-style photo we have of Nana Bah, Brody and Uncle David:

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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.


Pulmonology Followup

by Kayte

Lola had an appointment today with a pulmonologist specialist who wants to follow her case with intermittent checkups. On the one hand he said there is no major obvious cause of Lola’s recurring pneumonias, but on the other hand there’s also no magic fix. He thinks it might be an unlucky combo of preemie lungs, small stature and neurology (cough reflex) that make her particularly susceptible to respiratory infections. He wants to get a follow-up chest x-ray in March to see what Lola’s healthy lungs look like so we have a baseline. He also ordered a sleep study (which we weren’t able to get scheduled until October) to see if there is anything overnight that might be affecting her breathing or growth. In the meantime we’re still doing breathing treatments (Xopenex – bronchodilator and Pulmicort – steroid) 2X a day as maintenance. When I asked if there are any long-term side effects with these medications, our pediatrician mentioned that weight gain can be a side effect of the steroid treatment. Hah! Bring it. We have another follow-up scheduled with the pulmonologist in May. Making all of these future appointments made me feel a little bit better that we have something to look forward to other than another pneumonia hospitalization. Part of me just wants to keep Lola safe in a bubble until the winter flu season is over, but several doctors have assured me that it’s better for her to live her normal life. Sigh.


Pedaler

by Kayte

This past weekend while we were in La Quinta Lola pedaled her bike for the first time ever! Something finally just clicked and there’s no stopping her now. Here she was on our walk today:

And later today at the park today she actually role played with some other kids – baking sand cakes in the bakery – which she doesn’t usually do. She and Maxie have started pretend-playing together a lot more at home lately, but at the park and on play dates she sticks with the grown ups and avoids other kids. It was magical to watch her interacting with these other kids tens of feet away from me!

AND just last week I watched Lola walk down two consecutive steps without a hand or railing. She’s been bravely stepping off the last step without assistance for a few months, but that’s the first time I’ve see her walk consecutive steps before. Looks like 2017 is shaping up to be a good year.


La Quinta

by Kayte

We spent today with Grambo & Papa in snowbird paradise. After breakfast we took the kids to a local park where they enjoyed the undivided attention of four adults. Afterward we took a bike ride to the tennis courts where Grambo & Papa introduced Brody to pickleball. Then it was time to drive home – both kids fell asleep in the car exhausted: the sign of a good weekend.

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Grambo & Papa

by Kayte

Over the LA river and through the windmill woods to Grambo & Papa’s house we went this weekend. Max and Lola were spoiled from start to finish with cookies, orange juice, art projects, train sets, electric blowers and a heated pool. They fell asleep easily by themselves in the guest room that evening, giving the grown ups a nice chance to relax.

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School Photos

by Kayte

Here are Max and Lola’s school pictures for the 2016-2017 school year (taken last fall, so no glasses):

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They sure have grown up a lot since last year:

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Petite Castle

by Kayte

Max and Lola have been very interested in stories about knights and fire-breathing dragons lately. After they got a play castle tent for Christmas, Max requested knight costumes to go along with it. I did my best fashioning helms out of a cereal box, and cutting tunics out of leftover fleece. For the finishing touch, they each got to choose their own house sigil. Guess who got to be the fire breathing dragon? Rawr!

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Max, Knight of Swords

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Lola, Knight of Balloons


Tide Pools

by Kayte

We’ve had lots of rain this past week so I was hoping to go find some snow today, but the weather turned warm and we ended up at the beach instead. We were actually reading a story in the kids’ Highlights magazine about visiting tide pools, which inspired us to pack a picnic and head to the beach at low tide. We forgot water shoes so it was a little difficult for the kids to navigate the sharp rocks, but they were very excited once we found tide pools with sea slugs, anemones and hermit crabs – just like in the story! There were also some nice calm sandy areas for Max & Lola to splash around – their favorite beach pastime. A refreshing day!

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Workshop: Crate Toolbox

by Kayte

Every month Home Depot offers free workshops for kids. Max and Lola have been a little young to participate, but after they had so much fun building derby cars at the pumpkin festival last fall we decided to sign them up. This month’s workshop was for a wooden toolbox, which was perfect because Max needed one to go with his new workbench. We (the adults) still had to help quite a bit with the hammers and glue, but it was a really fun project and we’ll definitely be doing more in the future.


Swallow Study

by Kayte

As a follow-up to Lola’s most recent pneumonia, we took her in for a Modified Barium Swallow Study. They were looking to see if she is aspirating food/liquid into her lungs when she eats/drinks, which could then possibly house bacteria and cause pneumonia. As I was reading about swallow studies and aspiration syndrome I was surprised how many boxes we could check off: aspiration can be caused by prematurity and/or brain damage, and it can result in coughing choking, delayed growth and recurrent pneumonias. Check. Check. Check. Check. Check. I thought we might be on to something.

For the test, which is also called a Video Fluoroscopic Swallowing Exam (VFSE), Lola stood in front of an imaging machine while the doctor took an x-ray video of her as she drank barium. (This was somewhat exciting for Lola because she has read about barium in one of her favorite Curious George stories.) The barium was thick and chalky, but the doctor said that Lola handled it better than most of her adult patients. He also said that her swallow motility looked totally normal, and that there was no aspiration at the time of the test. It’s a bit inconclusive because it doesn’t mean that Lola has never aspirated before, just that she didn’t during these three swallows, but the fact that her motility looked normal is reassuring. We have an appointment with a pulmonologist in a couple weeks, so we’ll see if he has any more insight into her recurrent pneumonias.

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P.S. I’m trying to get a video of the swallow study but the imaging disks are all formatted for PCs. I’ll keep working on it. 1/29/17

P.P.S. I was finally able to read the imaging disks, but unfortunately the swallow study was only a series of still images, no video. 2/6/17


Holiday Bash

by Kayte

We had our annual get together with our NICU/twin-friends today. They had fun rearranging the furniture, making pizzas, and running around like crazy. A typical day in Twinland!


Specs

by Kayte

So far so good with the glasses. They have remained intact, unscratched and [mostly] un-lost, though they do get completely filthy on an hourly basis. The kids are both pretty good about leaving them on most of the day, though understandably they do need to take breaks (Lola more so than Max). It’s only been two weeks of glasses-wearing and I already think the kids’ faces look “naked” without their specs. But now I have a new photography challenge working around the glare of those lenses…hmm. 


Bowlero

by Kayte

We took the kids bowling for the first time today! I love bowling and love being able to start doing these things as a family. I have fond memories of bowling with my parents and grandparents – and now the tradition continues. Lola cheered “Bravo! Bravo!” when it was everyone else’s turns and said “Thank you. Thank you.” when we cheered for her.