Thomas the Tank Engine

by Kayte

At our last visit to the library Max chose the Thomas the Tank Engine Story Collection – I think based solely on size (508 pages). We have been reading a couple chapters a day for the past month and tonight we finally finished it! This was our first foray into the world of Sodor, and we can now confidently name all of the Really Useful Engines (instead of just Thomas and The Other Blue One). It was fun reading a chapter book with the kids (although Lola wasn’t all that into it). A nice change from reading the same 20-page books over and over and over and over…

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Stein Eye

by Kayte

Max and Lola got their eyes checked at UCLA today. They are both farsighted (Max 20/30 Lola 20/40) which is normal for their age. The doctor noticed a slight deviation in Max’s right eye when he is looking at something far away and his left eye is suddenly covered. (When asked if I had ever noticed this before: umm no I don’t normally cover up my kids eyes at random times during the day?) The deviation can indicate that the brain is not marrying the individual signals from each eye to form one coherent image (aka depth perception) and can be corrected with glasses. However the deviation was within a normal range and Max’s depth perception checked out fine so we’re good for now. The doctor recommend that we get Max’s eyes checked every 6 months. Lola’s eyes checked out perfectly and she doesn’t have to go back for another year.

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In other news I kinda sorta fired our eye doctor today. We like him just fine, but it’s a long drive to UCLA, the wait times in his office are usually terrible, and they’ve cancelled and rescheduled appointments more times than I can count. Today’s appointment was supposed to be our 6-month checkup last Fall which was cancelled and rescheduled so many times it became a year checkup instead. I wasn’t sure if we were getting specialized treatment at UCLA because of their preemie history or if it was just regular eye exams, but the doctor confirmed they were just regular eye exams. Luckily he was super nice about it and totally understood; he even gave us the names of a couple doctors closer to our house that we can use instead. It will be nice to not have to make appointments six months out now.


Stair Climb

by Kayte

Lola’s first week of private PT went great. Lola responds really well to the therapists, and I like sitting in on her sessions so we can work on things at home. They’re focusing a lot on leg strength (see the ankle weights in the pics) and balancing on one leg. It’s not easy for her, but I definitely noticed improvements since our first session on Monday.

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Elephant Ears

by Kayte

Just another adorable preschool art project. This week’s theme: Zoo Animals.

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Four!

by Kayte

Happy 4th birthday to my strong, sweet, brave, funny, beautiful, not-so-little babies. Your birthday is always a bittersweet reminder that our journey hasn’t been easy, but it has absolutely been worth it. We are so proud of you Max & Lola. We love you SO much.

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Comparison photos from 2012 and 2013.

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PneumoVax 23

by Kayte

No rest for the party-weary. Max & Lola both went to school, then we took Lola to her first private PT session. Afterwards we stopped by the pediatrician’s office so Lola could get a PneumoVax shot. It’s a pneumonia vaccine that protects against 23 different kinds of pneumococcal. They are using it to test her immune memory. We will go back in 3-4 weeks for more bloodwork to see how Lola’s immune system reacted to the vaccine and hopefully that will tell us what we need to do next.


After Party

by Kayte

Max and Lola had a fun post-birthday party day playing with every single one of their new toys. The big hit is a cash register/shopping cart combo [not pictured] but they are really enjoying everything.

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Birthday Party

by Kayte

We had a small family gathering this weekend to celebrate Max & Lola’s upcoming FOURTH birthday! The kids have been bouncing off the walls in anticipation for days. They were especially excited to eat cake! Max requested vanilla and Lola wanted chocolate. We are very thankful for the family near and far who traveled to celebrate with us today.

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PT Eval

by Kayte

After Lola’s PICU stay she was having a hard time walking. Even though our doctor said it could take up to six weeks to recover, he still gave us a referral for private (insurance) physical therapy to augment the PT that Lola gets at school. I never posted an update, but after I came back from the wedding weekend Lola was miraculously walking better, pretty much back at baseline. (Brody credits this to two days of walking in the sand at the park.) When I talked to our pediatrician he still thought it would be a good idea for Lola to get some extra PT, so today we went to the new clinic for her initial evaluation. The therapist noticed that Lola tenses all her muscles to control her gait, which is why she moves so stiffly. The therapist wants to take a two-pronged approach of stretching at home to loosen Lola’s muscles while strengthening them during PT so Lola maintains control. They also recommended that we start with therapy three times per week. The therapist said there’s something about that number 3 – she notices a huge difference between 2 and 3 sessions a week (but not 3 and 4 session). So we’ll give it a try and see how it goes. Meeting with a therapist made me realize how hands-off we have been since Lola transitioned from Regional Center to the school district one year ago. We were very involved with therapy when the therapists came to our house every week, but we don’t see the school therapists very often so we’re a little more removed from the process. Hopefully we see some real improvement over the next few weeks with our 3X/week PT schedule.


Immune Memory

by Kayte

So at our PICU discharge followup our pediatrician ordered some immunology bloodwork to see if there was any underlying explanation for Lola’s sickness. We didn’t have the results back in time for our infectious disease appointment, and I almost forgot to ask about it while we were at the ped’s office yesterday. I really wasn’t expecting the bloodwork to turn up anything unusual since Lola has rarely been sick (even with colds) since her NICU stay. Well, turns out it’s a good thing we ran the tests because something came back unusual. The good news is that Lola’s immune system responds well to germs and creates the antibodies to fight them off. The bad news is that Lola’s immune system doesn’t retain a memory of any of those antibodies. No immune memory means things like vaccines are not effective. Scary. Our pediatrician is going to run another set of tests that will tell us more. IT doesn’t really even have a name yet…he just described it as an inefficient or immature immune system. I’m trying not to freak out until we have more information, but I have a strong urge to curl up back into post-NICU lockdown mode with gallons of hand sanitizer.


Yay Sinus Infection!

by Kayte

We were sick all weekend. Fevers, coughing, runny noses, goopy eyes. Brody and I feared the worst after our Pneumonia February. So when I took the kids to the doctor today and he declared a sinus infection, I exclaimed “yay!” haha Simple, non-respiratory, treatable with antibiotics. Yay. I think this will be good for us to have a good, old-fashioned, normal sickness to get us back on the bandwagon. Hopefully everyone will bounce back in no time – and in time for birthdays!

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Rainy Play

by Kayte

It started drizzling while we were at the park today but we didn’t let that dampen our spirits.

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Critter Case

by Kayte

We caught a lizard!

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20th Percentile!

by Kayte

We’ve had a busy week at CHLA this week. Infectious disease on Monday, and endocrinology followup today. In the six months since our last visit, she’s grown another 2 inches and gained over 2 pounds. She is now in the 20th percentile for height, and in the 1st percentile for weight – which puts her ON the growth chart for weight for the first time ever! Needless to say, the doctor is very happy with Lola’s progress. No bloodwork or x-rays today. He increased her growth hormone dosage and we’ll be back for another followup in October.

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Weight: 26lb 14oz
Height: 38 inches


Infectious Disease

by Kayte

We enlisted yet another specialist at CHLA: infectious disease. Our pediatrician wanted us to follow up with them to see if they had any insight on Lola’s “trifecta” (viral, bacterial, fungal) of infectious diseases while in the PICU. Unfortunately, or thankfully (?), they did not have much to offer. They said the hMPV hit hard this winter, and it probably hit Lola harder because of her history, young age, and small stature. There’s not a lot we can do to prevent viral infections in the future, but as Lola grows older and bigger her immune system will be better equipped to fight them off. In the meantime she’s happy and healthy and growing!

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Weight: 26lb 14oz
Height: 38 inches