ESY

by Kayte

Max and Lola were supposed to be in summer school for the next four weeks, but today we made the decision to pull them out. I was warned beforehand that the ESY (Extended School Year) program was chaotic at best, but I figured at worst it would be four hours of free babysitting every day. Leading up to Monday I was already nervous about the program because it was at a different campus with all different faculty, and the first day frenzy did nothing to ease my fears. Max & Lola were cattle-called into a bare classroom with 10 other kids and a substitute teacher (who had just graduated with credentials) who hadn’t read any of the kids’ IEPs and wasn’t aware of any of the kids’ medical histories. The classroom wasn’t in the kinder yard (which is separated from the rest of the campus by its own gate) and the kids had to walk across campus to go to the bathroom and for lunch (at our home school they stay in the classroom for both of these things). The school itself was located on a very busy street and we observed gates unsecured and doors to the front entrance left open. The first day I couldn’t bear to leave so I got a visitor’s pass and sat in the classroom holding back tears. The second day I mustered up the courage to drop them off, but I spent all of my free time worrying about them. Tuesday night I had a dream about Lola wandering away from her class and ending up outside the school on the busy street and I couldn’t bear to take them back on Wednesday. I felt like I was losing my mind a little bit, but my mom reminded me that I had handled separation and change just fine in the past, so there must have been something about this situation that was triggering my mama bear instinct. Some of the other families felt the same way and pulled their kids out, some of the families stuck with it and have said it calmed down after the first week. Either way any benefit of the ESY program was not worth the stress and I felt such a sense of relief when we decided to keep them home. Now we can go back to having a fun summer filled with swimming, therapy and friends!

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Therapy Approved

by Kayte

Lola hasn’t been been to physical therapy in a couple weeks because we’ve been waiting for our insurance to approve additional visits. We finally got the approval letter yesterday and were able to schedule a session for today. Lola (and Max) were SO excited to be back; they really love the therapists and the facility. The therapist said Lola was looking really strong, so hopefully we didn’t lose too much momentum over the break.

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Backflip

by Kayte

Nana Bah came to watch Max & Lola at swim lessons today. They are both making a lot of progress, especially Max who has the whole hand-sandwich-mouth-closed-hmm-glide-roll-over-float thing down. Lola is still getting comfortable with having her face in the water, but she’s doing great as well.

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Also, this is Max’s new favorite thing to do in the pool:


Beachy Birthday

by Kayte

Today we went to the beach to celebrate my birthday. We ate breakfast at the cafe and spent the rest of the morning exploring the beach. The surf was pretty big so we didn’t get in the ocean, but when we got home we swam in the pool to cool down and rinse off the salt spray. It was a perfect summer birthday!

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Twinsday

by Kayte

We had a busy today today. Max & Lola had swim lessons in the morning, and our fellow NICU-twin-friends came over for a play date in the afternoon. The kids didn’t seem to mind the 90* heat so we sat outside most of the day and ate and played. It was too bad we couldn’t use the pool, but that would have been way too crazy with six kids 4-and-under – we’d need to hire a lifeguard!

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Re-check

by Kayte

We took Lola back to the pediatrician today to have her ears re-checked. They looked better, which means the infection responded to the antibiotic shot so it isn’t MRSA, just stubborn. They gave Lola a second antibiotic shot to try to clear the infection once and for all, and they also gave us a referral to a different ENT at CHLA to consult about tube surgery. The doctor said even if the shots clear this infection, she will be more susceptible to future infections so tube placement is still on the table. In the meantime at least she is feeling better, as you can tell from the photo below. 


My Dad Rocks

by Kayte

We spent most of Father’s Day hiding inside from the 106° heat (in the shade) outside. We did manage to get some splash time in the pool and to grill dinner, but it was too hot for much else. Brody opened gifts that the kids had made at school – painted stones with “My dad rocks!” written on them. So cute. Lola was feeling/acting 100% better today so we mostly just enjoyed being home together as a healthy, happy family. There’s no better gift than that.

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Miserable

by Kayte

The first words out of Lola’s mouth this morning were “Will you take my temperature?” She wasn’t able to articulate her pain, but she woke up with a low-grade fever, feeling miserable and inconsolable.

Our awesome pediatrician was able to get us in on a Saturday and a good thing too. Lola’s ear infection is back and worse than before; both ears this time, red and oozing pus. The doctor said this is definitely not normal to have either a thrice-recurring infection or three separate infections within a month. They’re suspecting it may be a methicillin-resistant bacteria, which would explain why two 10-day courses of antibiotics haven’t cleared up the infection yet. We’ve certainly had our fair share of exposure to MRSA.

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The doctor gave Lola an antibiotic shot to give her some immediate relief and give us better insight into which antibiotics to take next. Monday we will go back to the pediatrician and hopefully be able to get a second opinion from another ENT. We are definitely still candidates for tube surgery. The doctor also drew a blood culture and will specifically be looking for any signs of a fungal infection; it’s unlikely since we think the fungus in February was a contamination, but it could also explain the low-grade fevers she seems to be getting weekly.

I was reflecting back on 2016 and realized that Lola hasn’t been healthy since January: pneumonia in February, recovery in March, sinus infection in April and recurrent ear infections in May/June. We’ve had our fair share of worry with the constant trips to the doctor and I’m sure she’s sick and tired of feeling sick. Let’s hope the doctors can figure this out soon and get Little Miss healthy.

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Diving Rings

by Kayte

Max and Lola have had four swim lessons this past week. They’re loving it and we’re seeing a lot of progress. Max has the whole hand-sandwich-mouth-closed-hummm-facedown-glide-sequence down and can glide from the stairs a few feet to the instructor. They can both float on their backs independently (with close spotting) and wall-walk back to the stairs. Today Max practiced diving for rings (assisted), while Lola is still getting comfortable with getting her face wet. I can’t wait for them to love the water as much as I do and spend many, many summers swimming like fish.

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Chalk Paint

by Kayte

Max and Lola got this chalk paint set for their birthday LAST year (2015) and we’re just getting around to using it now. I’m not sure why we waited so long because it’s really fun! The kids loved walking around with their own bucket of “paint” like professional painters. It cleans up really easily too, although in California we probably won’t get rain again until December which makes chalk art more like permanent graffiti in these parts.

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Little Swimmers

by Kayte

Max and Lola finished preschool yesterday and started swim school today! We did parent-and-me lessons last summer, but this year I think they’re finally ready for a more intensive (and independent) class. During their first session the teacher had them holding their breath underwater and floating on their backs. I was really impressed with how much they were able to do, and can’t wait to see how much progress they make over the course of the next ten sessions.

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ENT

by Kayte

Lola visited the ENT today and got the all-clear; it looks like her ear infection has healed and we are not tube candidates [yet]. The doctor said a child needs to get ~five ear infections within a year to qualify for tube surgery. Lola has only had two so far…so hopefully this was just a bad spring season and we can move on from here.

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Last Day of PSM

by Kayte

Today was Max & Lola’s last day of preschool for the school year! They have learned and grown so much since their first day; I can’t wait to see what next year brings. This year they were in a Preschool-Mixed (PSM) program that only met for 2-1/2 hours 4 days a week. Next year they will be starting a new program called Preschool for All Learners (PALS) which meets 4-1/2 hours a day 5 days a week. They will also be attending a 4-week summer school in July. The best part is that school has been such a positive experience for them (and us). They are excited and enthusiastic about going to school every day: I hope they enjoy it this much for the rest of their lives!

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California Primary

by Kayte

Gotta start them voting young!

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Safety Fairey Tale

by Kayte

The boys came back from their camping trip today. After a quick shower we went to the LAPD Safety Fair (or as Lola kept calling it, the Fairy Tale) and Car Show. The kids got to see lots of cool things: police car, motorcycle, bomb squad truck, underwater rescue unit, school bus, ambulance and helicopter. It was still around 100* hot so we didn’t stay for long, but it was a fun outing.

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Bomb Squad Disposal Truck

 

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Ambulance circa 1965

 

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LAPD Motorcycle

 

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LAPD Electric Dirtbike

 

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LAPD Helicopter

 


Tympanometry

by Kayte

Unfortunately Lola spiked a fever last night after we set up camp, and was still feeling warm (and miserable) this morning, so we decided to bring her back home from our camping adventure a day early. I needed to take her to the pediatrician anyway for a follow-up urinalysis (because her last urine culture came back borderline), but I also decided to make an official appointment because of this fever and the fact that she had had a random fever last Saturday/Sunday (while still on antibiotics). Turned out our parenting instincts were on point because Lola’s right ear was still not cleared up from the previous ear infection after ten days of antibiotics. Not only was the ear still red, but the doctor also performed a tympanometry which revealed very little vibration of the ear drum. I asked him if that could be the reason she doesn’t listen to anything we say, but he said no that’s just because she is four years old…ha ha He sent us home with a different, stronger antibiotic and a referral for an ENT to see if this is a more serious, chronic problem that might require ear tube surgery. Ugh.

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The initial urine culture looked clear, but there were some contaminants that indicated possible vulvovaginitis which could explain the frequent peeing (which she was also doing at camping). We’re supposed to administer vinegar sitz baths 2X/day for the next 5 days.


Upper Oso

by Kayte

We packed our minivan to the gills and drove out into the wilderness for the kids’ second camping adventure. The packing and set up was a lot easier this year, as the kids were able to wander around and [mostly] keep themselves occupied while we got things in order. Unfortunately the weather took a turn for the worse, which in SoCal terms means 90-degree heat. It was a hot, hot day to be outside with no A/C, but we made the best of it with lots of shade and cold drinks. Luckily the campsite was in the bottom of a valley so the sun disappeared behind the mountains fairly early in the evening, leaving us with lots of ambient light and bearable temps.

The kids loved our camping adventure and the whole family is already looking forward to our next trip!

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