Music

by Kayte

We had the most amazing child development therapy today. The therapist brought along her son who plays the guitar, and he performed a private concert for Max & Lola. He played classic nursery rhymes, children’s songs, and folk music. Max & Lola were both mesmerized. Max even got to strum the guitar.

One of the cutest songs he sang was The Nick of Time by Tom Chapin (below). I’d never heard it before, but it’s adorable.


Such a fun afternoon. We sang and danced the rest of the day!


Open Play

by Kayte

The OT thinks Max and Lola are doing amazingly well with sensory stuff, and at this point would get the most benefit from social interaction and excursions. Since this is a bit difficult with therapy 5 days/week (and 2 naps a day), we have agreed to meet just every-other-week for therapy and to use the off week for playdates/adventures.

This week we ended up back at the sensory gym with our friends Beeta & Ryan. What can I say – it’s convenient, fun, and air conditioned!

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Playdough

by Kayte

We are STILL waiting for insurance to approve Lola’s speech therapy, so we had another free day. Still too hot to play outside mid-day, so we “cooked” playdough inside. It was surprisingly easy, and the process was as much fun as the result.

Measuring the flour

Pouring the oil

Blend for 2min = dough!

Kneading the dough

Vacuuming - Max's favorite

Finally, play time

Max Handprint

More 'cooking'

Lola Handprint


Happy Birthday Booker!

by Kayte




Small for Gestational Age

by Kayte

Lola had her 6-month follow up with the endocrinologist today. She weighed in at 19lb 3oz (finally!) and measured 31-1/4 inches long. When the numbers were plotted, we saw that she’s still not even ON the growth chart for height and weight. They also did a bone age scan (x-ray) which showed that Lola has the skeletal structure of an 18-month old.

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At our last appointment the doctor conducted a series of lab work, all of which came back normal. This ruled out any specific medical causes for Lola’s tiny stature. So the official diagnosis is Small for Gestational Age (SGA). In Lola’s case the diagnosis is idiopathic, meaning there is no clear root cause of the problem.

Most kids born SGA “catch up” on the growth chart within the first two years – like Max. The small percentage of kids who don’t catch up by two almost never catch up later  without medical intervention. The treatment for SGA is growth hormone (GH) therapy, which would involve a daily injection of GH until Lola reaches puberty.

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Looking back on the blog I realize I never really posted much after our initial consultation, but we’ve done quite a bit of research and have had many discussions in these last six months. We were initially hesitant to take what seems like such a drastic step, but the risk is very low compared to the life-long benefit, and Lola needs every advantage she can get. Today’s visit was just quantitative confirmation that Lola hasn’t caught up by age two, and statistically she qualifies for GH therapy.

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If you’re interested in reading more, the doctor gave us two great resources to check out: MAGIC Foundation and Human Growth Foundation.

Weight: 19lb 3oz
Height: 31.25 inches


Hold the Cone

by Kayte

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Gym Day

by Kayte

Max and Lola are totally thriving at the gymnastics gym. They had so much fun today jumping and running/walking and climbing and diving. It’s fun to see them both enjoying therapy so much.

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Puppy Pile

by Kayte

“The test of good manners is to be patient with the bad ones.”
– Solomon Ibn Gabirol

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Good boy, Sudlow.


Sensory Gym

by Kayte

Our OT has been out of town these past few weeks, but today she was back and Max & Lola were ready to play. We met at an indoor sensory gym that has all sorts of equipment for swinging and climbing and crashing and jumping. Max spent a lot of time cooking in the kitchenette and playing with all sizes of balls. Lola mostly wanted to swing, but she did quite a bit of walking & jumping too. It was a great way to beat the heat and get out of the house.

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Paint

by Kayte

We had a free day today while we wait for Lola’s speech therapy to be approved by insurance. It was too hot to go outside, so we spent the afternoon painting (and then bathing).


Family Hike

by Kayte

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Anniversary

by Kayte

Today marks the one-year anniversary of Lola’s last brain surgery. It’s a significant milestone because our risk of shunt malfunction and/or infection decreases rapidly after a year. A lot of people live their entire lives hardly thinking about their shunt and hopefully we can now be part of that club. This has been a great last year in terms of health and progress. I hope we can look forward to more of the same.


Bounce House

by Kayte

The gym we go to for PT is in the midst of their annual gymnastics summer camp. Today they had a bounce house set up and Max & Lola got to jump around inside before all the campers showed up. Toddlers’ first bounce house. They were a little freaked out at first, but warmed up to it eventually. Max & Lola especially liked the giant slide on the way out.

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PT itself was good. Lola did more walking. Max did more climbing. We jumped in the marshmallow pit. Swung on the rings. Jumped on the trampoline. A typical awesome day at the gym.


Down Dog

by Kayte

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Bridging the Gap

by Kayte

This afternoon I looked up from where I was sitting to see Lola walking in the middle of the room. She went back and forth between the tables, from the high chair to the gate, and all over the living room. Physical therapy can only take her so far against her will. This is the defining moment we have been waiting for. Lola has finally decided to walk!



There’s no stopping her now!


Speech Monitoring

by Kayte

While we wait for insurance to approve Lola’s weekly speech therapy, Max had his monthly speech monitoring session. It was very interesting to watch the progress Max made in only an hour. The therapist wants him to start using more 2- and 3-word sentences. Today he worked on the phrase “I want __noun__.” to ask for things. “I” and “want” were both new words, and by the end of the session he was even starting to ask unprompted. The therapist worked on eyes-only activities to encourage communication with words instead of just grabbing. She also encouraged Max to focus on one thing at a time, like playing with one bean bag rather than dumping the whole container.


A Walk

by Kayte

Grambo & Papa were back in town today and we all took a walk down the block. Max got to walk the puppy on a leash – he was in heaven! And Lola actually walked – mostly holding Grambo’s hand but a little on her own too.

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Earlier in the day we had PT outside to challenge Lola a bit more. The therapist had her walk on unfamiliar surfaces – grassy lawn, concrete sidewalk, asphalt driveway. When Lola got back inside the wood floors were a piece of cake!


Climbers

by Kayte

Climbing was the theme of the day. First Lola climbed onto the couch by herself for the first time ever. Then they were both climbing all over everything at the gym. And later that day Max climbed OUT of his crib to the floor (not Lola’s crib).

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PT at the gym was okay. Lola seemed a little sad and scared. It’s one thing for her to scream in anger/protest, but seeing her little chin quiver just broke my heart. She warmed up after a bit, so maybe she just needed time for her walking confidence to translate to a new location.


Hearing Screen

by Kayte

Max and Lola each had a hearing evaluation today. Much like the orthopedist, the doctors wanted to rule out any physical reason for their speech delay. At this point we really don’t have any concerns in this area, but it’s a simple procedure to have things checked out, so it doesn’t hurt.

The doctor looked inside Max and Lola’s ears and took some pictures. Max was a little waxy, Lola was clean and clear. Both of their eardrums looked healthy. After the physical inspection, we sat in a sound-proof booth while the doctor played different sounds, at different pitches, to the left and right. She was looking for particular responses, mostly for Max and Lola to look in the direction of the sound.

Max performed like a model patient, responding to each sound totally appropriately. Lola was a little more distracted. She responded to vocal cues, but didn’t pay much attention to the random, quieter noises. The doctor wasn’t concerned, as it is hard to get a definite result from just one test and a lot depends on patient cooperation. (Not Lola’s strong suit.) The doc suggested that Lola do a repeat screen in two months to see if we can get a better result then.

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Posed

by Kayte

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