June 25, 2017: Greetings from the Face of the Sun

Okay, I might be exaggerating just a wee bit. But it’s been hot here, people. Really, really hot. I think we had something like six days of triple-digit heat in a row. One day, when I took Sam to swim lessons, I checked the temperature as I sat out on the deck, waiting for him to finish. It was 107 degrees. Now that’s just disgusting.

Granted, we don’t have humidity, so that keeps it more manageable. But it’s still darn hot! The fact that our 25-year-old air conditioner managed to chug through it is nothing short of amazing. That thing is so beat up and rusted, it’s amazing it still runs. And yet, it chugs on…thank goodness!

This is the worst heatwave we’ve had in the six years we’ve lived here. We got these kind of temps every year when we lived in Sacramento, but where we live now is generally about 10 degrees cooler than Sacramento. But not this week!

Anyway, it has now cooled down, and I am happy once again.

The boys had a fun week at their camps! Theo is really enjoying his camp. This week they had a field trip to the Tech Museum in San Jose, which he really liked. We’ve been wanting to go there, but it’s rather pricey and more for Theo’s age than Sam’s, so we haven’t gone. I’m glad Theo had a chance to go, though, because it’s supposed to be a very cool place! (In both senses of the word—I’m sure they had A/C on another triple-digit day!)

Theo also won Camper of the Day one day at camp. He was very excited!

2017-06-19 20.05.02

Theo has two more weeks at this camp, and then he’ll switch over to the camp we did last summer for a week. Then a week of Cub Scout camp, then one more week of the camp we did last summer. We had originally planned for him to do one week of Scout camp and the rest of the weeks at the therapy camp he’s going to, but they are in high demand and may not have space for a couple of the weeks in July, so I finally just decided to have him go back to the camp from last summer for those two weeks. He really enjoyed it, we liked it, and it is much closer—all good things! Plus, a couple of his friends will likely be there, too.

Sam’s summer program isn’t actually a camp, but it’s easier to call it that than to refer to it by its full name: Communication Readiness Program. I informally refer to it as “speech camp,” because it’s a fun summer program that focuses heavily on encouraging communication (either spoken, augmented, or signed). But it’s not a camp in the traditional sense of the word—it’s more like a preschool summer program. They have circle time, they do arts and crafts, they have a lot of play time, they learn a letter of the day, etc.

Just like last year, we noticed a big jump in Sam’s speech even after just one week. He’s chattering up a storm, trying to say many new words this week. Many of them aren’t terribly understandable, but at least he’s trying! That’s half the battle, right?

Meanwhile, I’ve been doing my work at the local Starbucks while Sam is in camp. We decided a few weeks ago to purchase a MacBook Air laptop so I could work over the summer—just the base model, but our other laptops were more than ten years old and very iffy on when and if they would connect to WiFi. And I need WiFi access to really be able to do much work, so we finally decided a new laptop was probably a wise investment.

That may be the understatement of the summer. My laptop is a godsend in allowing me to work! I just get a coffee, set up at a table outside Starbucks, open it up, and it magically connects to Starbucks’ free WiFi, and I can work for three hours while sipping my coffee and waiting for Sam to finish his program for the day. Glorious! And actually, it has already paid for itself. Last week, I got an email from a client I’ve worked with before, asking if I could write twelve books over the summer for them. I would’ve had to say no if I didn’t have the laptop—but I was able to say yes, which will more than pay for the newest piece of technology acquired by Snyder Editorial Services!

In case you’re curious, the twelve books are six on sports and six on U.S. government. The sports ones are actually halfway written already—I had started that project for the client, and then (LONG story) it got dropped by the first publisher. They then found a second publisher who was interested, so now I’m in the process of reworking those original manuscripts to meet what the second publisher wants. The U.S. government books should be fun. Given the work I do as a legislative advocate, the topics are of great interest to me. It’s kind of a nice overlap between two of my jobs, really.

Speaking of which, my work as an advocate has me speaking out about the healthcare bill quite a bit. If you’re curious why I oppose it, you can click here to read a post I wrote about it. There are many more reasons why I oppose it, but the post really just covers the ones that are very specific to my own family. However, I’d love to share the thoughts of one of my friends, who lives in Georgia and has a 16-year-old son with Down syndrome. This is a letter to the editor she wrote to her paper. If you’re not interested, just skip past the indented text and back to our regularly scheduled blog post!

In January, my 16-year-old son with Down syndrome was missing when his sister went up to his room to call him for dinner. When I saw his bike was gone, I panicked as my mind darted: what if he gets hit by a car, or what if someone hurts him? It turned out that when I checked my voice message, I had received a call from him … telling me he had gone to apply for a job at a local grocery store. Even though he received a stern reprimand for scaring me, I swelled with pride that my boy, despite his academic challenges and difficulties speaking, was determined to work. And he did get the job and always arrives to work on time—sometimes getting dressed at 8am for a 6pm shift and often riding his bike independently.

What many people don’t realize is the significant support and work involved for our son to progress to this point. When he was little, he was very delayed, so we started receiving disability Medicaid for children when he was five-years-old. This is an optional Medicaid program funded by Georgia and the federal government. Our private insurance only covered 0-20 visits per year, and our son needed speech, physical, and occupational therapy 3-5 times per week at $90-120 per visit—costing about $25,000 per year until he was 13. These therapies helped him learn to talk, dress himself, and ride a bike to become more independent. We appreciated this significant support from the taxpayers because the cost would have been too much for our family. I like to think this was a wonderful investment because now our son is working on his Eagle Scout project, participates in leadership at church, and is working and paying his own taxes.

But the current healthcare plan before the Senate would cut more than $800 billon dollars from Medicaid over the next 10 years, and optional Medicaid programs like the ones used by my son will be the first to go. This is not just a cut of the Medicaid expansion under Obamacare, but an unprecedented rollback of the entire Medicaid program. In Georgia, nearly 400,000 people with intellectual disabilities rely on Medicaid. They make up 19% of Medicaid enrollees and 41% of the cost because Medicaid can provide people with intellectual disabilities in-home nursing care, medical equipment, job support, and other vital services. This means Georgians with intellectual disabilities will be disproportionately impacted by any kind of cut or cap. Please contact your senators and tell them protect people with intellectual disabilities from Medicaid cuts so that they can continue to be embraced by their communities and make meaningful contributions of their own.

Okay, if you took the time to read my friend’s letter, thank you. I think her words are well worth hearing. And now, as promised, back to our weekly chronicle. Sam has just about finished swim lessons for this summer. He actually did much better than last year, though he definitely won’t be swimming this year. He is putting his face in the water by choice now, though, and he learned how to kick. So these are good things! We’ll try again next year and hope for continued progress! Here are a few videos of him at swimming. You’ll see he’s quite clever at trying to avoid putting his face in the water, but he will eventually do it!

 

Speaking of Sam, he and I spent most of Friday at the hospital in Oakland so he could have a sedated MRI. What…a…pain. This is kind of silly, really. Let me walk you through it: Sam needs a hearing test, but he won’t cooperate with it. It’s an incredibly simple test where the audiologist just puts a small earplug in to measure the fluid and such in the middle ear. The earplug is no different from the one you’d put in while going swimming or to block out loud noise. It’s completely painless, and it takes all of thirty seconds per ear. But Sam is having no part of it—three adults (one of them me) tried to restrain him for the test when it became clear he wouldn’t do it of his own accord, but he is so freakishly strong that it was impossible. And his behavioral hearing test showed possible mild hearing loss, so we really do need to check further and see if we need to intervene in some way.

So, we need to do a sedated ABR (a much more detailed hearing test—but as long as you’re going to sedate for a hearing test, you might as well do the most comprehensive one). He should’ve had an ABR as a newborn, as he could’ve just slept through the two-hour test. But Kaiser forgot to schedule it (and, being a new mom to a kid with DS, I didn’t know!), and by the time we realized it, he was three months old and much more wakeful, so the test could no longer be performed while he slept.

But to do a sedated ABR, he needs to be fully intubated—it’s not a “twilight” sedation, it’s full anesthesia with a tube down the throat. And some kids with DS have a condition called atlantoaxial instability (AAI), where there is extra space between two of the neck vertebrae. If you intubate someone who has AAI, you risk paralyzing them. Obviously, this is not a risk we or any doctor is willing to take. So, you must first get an X-ray of the cervical spine to rule out AAI.

This X-ray is incredibly simple. It’s pretty much like getting a passport photo taken—the child stands against a plain-colored wall, and the tech takes the X-ray with the machine several feet away from the child. The machine doesn’t even come close to touching the child, so easy…right?

Wrong. Sam freaked. I tried every trick in the book to bribe him for the X-ray: chips, Thomas the Train playing on my phone, singing songs, etc. No go. When it became clear that he wouldn’t do it willingly, I literally laid on top of his body, pinning down his arms and legs with my body, while an X-ray tech held his head and the other tech tried to shoot the image from above.

Once again, He-Man’s freakish strength won out. He is incredibly strong for a tiny guy, and we were no match for him. The X-ray tech and I were covered in sweat and exhausted, and we never did manage to get a clear shot.

So, Sam’s doctor said the only other possibility was a sedated MRI of his cervical spine, which would also allow her to rule out AAI. In other words, for a simple thirty-second hearing test, we are having to do not one, but two unnecessary rounds of sedation. Being the sort of person who doesn’t relish unnecessarily sedating her kids (as I think we all are!), I’m not thrilled by this. But we don’t have much choice; even if I were willing to just ignore his possible hearing loss, he really does need to have AAI ruled out at some point, or it will never be safe for him to do certain physical activities such as horseback riding, gymnastics, tumbling, trampolines, etc.

Anyway, we got the MRI done on Friday. Sam had to fast for it, and Kaiser was running behind schedule. So by the time it was finally his turn, he had been without food or water for 20 hours. He was in a surprisingly good mood, though! He was nagging me for bacon and chips, but he was pretty cheery about the whole thing.

Tiny guy in a big chair:

2017-06-23 11.41.52

The anesthesiologist felt sorry for him having to wait and gave him his iPhone to play with:

2017-06-23 12.18.47

2017-06-23 12.19.56

He does look super cute in that gown:

2017-06-23 12.20.33

That is, until we got into the MRI room and they put the mask on him. The first step for sedation is to give him something through an oxygen mask that makes him super drowsy and in a light sleep. Then they put in the IV and give him propofol through that to ensure that he’s all the way asleep.

The mask takes all of thirty seconds (and smells like bubble gum!), but he was having none of it. Four adults (me being one of them, and another one being a burly ex-military male nurse) held him, and he still managed to rip the tubing out of the mask twice! The ex-military nurse and the anesthesiologist were like, “Oh my god he’s strong!! What a fighter!!” I said, “Now you see why we’re doing this sedated?” and they chorused, “YES!” The ex-military nurse commented, “Being a fighter’s a good thing. It’ll serve him well in life.” I have to say, I agree. Nevertheless, it is heartbreaking to me to see my little guy so upset. And feeling his little body go limp in my arms…ugh. I started crying a little bit. It’s really disturbing. I don’t relish doing it again for his ABR.

Luckily, the MRI only took about an hour (the ABR will take two), and then I was able to go back and be with him when he woke up. He seemed no worse for the wear and woke up drunk but coherent. He looked so tiny in the bed, though!

Amusingly, both of my kids are belligerent drunks. The nurse warned me that Sam would essentially be “drunk” for a few hours after waking. I don’t have that effect from propofol (which I mentioned to the nurse), but he said children react a bit differently to it than adults, and I should just expect Sam to be “drunk” for a few hours. Indeed, he was correct.

Theo was “drunk” after some mild anesthesia for a dental procedure when he was five, and I remember him being totally belligerent on the way home. Sam was much the same! He asked for some chips as we were driving down the highway, so I opened the bag as best I could while driving and handed it back to him. He does not like any sort of loose bag pieces hanging off when you tear open a bag, and he let me know that in no uncertain terms. I told him “Eat it or don’t—I can’t fix it right now.” He fussed for a few moments, and then hunger won out and I heard the unmistakable crunching of chips from the backseat.

When I got off the highway, I turned left about seven miles away from our house instead of going straight. Sam has an uncannily good memory for directions and apparently knew that was not the way home, so he yelled, “NOOOOOOO!” at the top of his lungs from the backseat.

“You think this isn’t the way home?” I asked.

“YASSSSSSS!” he bellowed. Then, after a moment of silence, he demanded, “Fwies.”

I figured fries was a fair request, given that he hadn’t really eaten in more than twenty hours, so I turned into a McDonald’s drive-through. He promptly screamed “NOOOOOO!” because apparently he doesn’t like those fries. Finicky little diva!

Speaking of which, no judging on the chips and fries. Right now Sam is gluten-free because his doctor thinks he has a food allergy, and we’re trying to narrow down what it is. Given the fact that gluten made up about 90 percent of his diet, we’re having a very hard time keeping him fed right now—there are so few foods he’s willing to eat that cutting out the ones containing gluten has left him with very little to eat. It’s a work in progress…

The weekend has been fun! On Saturday I met up with my friend Amber for a fun girls’ day in San Francisco, while Chris took the boys to lunch and the Scout store. (Sam is now a Lion—or, rather, he will be in the fall!) Amber and I went out to Baker Beach, which I had never been to. Why haven’t I been to this great beach?! I told Chris we need to take the boys there. It’s much closer than Half Moon Bay, and while Half Moon Bay is gorgeous, the surf is pretty rough, so I constantly worry about Theo. (Sam is naturally cautious and won’t stray from our sides much at the beach, but Theo thinks he’s invincible and doesn’t believe in undertow. So we go to the beach and we have fun—but it’s definitely not relaxing, as we’re always on guard about the rough surf.) Baker Beach is much gentler (probably because it’s close to the bay), and it seemed to be a very kid-friendly beach—tons of families out there. And it’s dog-friendly, too! We saw three pugs, in fact, along with many other dogs!

Lion Sam!

2017-06-24 14.09.25-1

Baker Beach is apparently a nude beach in part, but we didn’t venture that far down. It’s a very long beach, and I’m told the nude sunbathers are close to the Golden Gate Bridge, whereas we were on the other end. And there’s parking, which is pretty amazing in San Francisco. So I envision a family trip to Baker Beach in the near future!

2017-06-24 11.06.46

2017-06-24 11.19.45

 

I wondered aloud to Amber how much the lovely houses perched on the cliff above the far end of the beach were (see pic below). They’ve got an ocean view as well as a view of the Golden Gate Bridge. Are you curious?? One’s on the market for $19 million right now. Apparently our mortgage payment for that bad boy would be $99,000 per month. Good gravy! Apparently I won’t be moving to the Sea Cliff neighborhood of San Francisco anytime soon.

2017-06-24 11.31.07

After our beach walk, we went to visit the Party of Five house—Amber wanted a picture in front of it. I never watched that show, though it was certainly popular when I was young. And what do you know—it turns out the house is literally a block from the Mrs. Doubtfire house! Theo has been on a Mrs. Doubtfire kick lately, so I took a picture of the house and texted it to him! He replied, “When was your dad born and when did he die?” with no explanation—I later found out he was working on a family tree when I texted him. He cracks me up when he responds seemingly nonsensically to something. In reality, it’s just Theo being in Theo’s head at the time when you talk to him! Speaking of which, click here to read a little post I wrote about my evolving thoughts on autism.

Mrs. Doubtfire house!

2017-06-24 13.01.15

After our visits to these houses, we headed over to Burger Bar for a delicious late lunch, then headed home. It was a great day, and the boys had fun with Chris in my absence.

Mmmm, Burger Bar! Boozy milkshakes and a veggie burger with bacon (ha ha, I know, I know…)!

2017-06-24 14.18.22

2017-06-24 14.22.49

Sunday morning, Chris and Theo headed out early for a Cub Scout hike on Mt. Diablo. I would’ve gone, but Sam can’t walk as far as they were going, and I can’t carry him for long periods of time anymore—he weighs 34 pounds now and is too heavy for that. So we stayed home and I worked on blogging instead.

Speaking of which, this blog is long enough! Pictures, y’all. And have a good week!

Vegetarian banh mi sandwiches with Asian greens:

2017-06-18 20.54.57

Spinach and leek quiche with roasted parmesan potato chips:

2017-06-19 21.05.53

Reading over the summer with no prompting?! LOVE it! (He’s fascinated by WWII. This is a WWII resistance book.)

2017-06-20 19.32.22

Quinoa salad with roasted chickpeas, cucumber, tomato, almonds, and parsley. So yummy!

2017-06-20 20.57.13

Laptop is useful for working on the couch, too—except when someone insists on sitting so close to you that they’re pinning down your arm!

2017-06-21 17.19.40

Theo’s camp buddy Anthony and him went to dinner at a salad buffet (with Anthony’s family). Theo is very much a fan of “all you can eat”—and yes, he apparently ate most of this!

2017-06-21 18.45.55

I can’t remember what this is. Some kind of linguine with squash and tomatoes, I think! I remember it being very tasty, but I just can’t remember what it is!

2017-06-21 20.45.30

Cous cous with roasted veggies and grilled halloumi cheese. YUM!

2017-06-22 21.05.53

Soba noodles with snap peas, avocado, and edamame. This wasn’t my favorite, but Chris liked it.

2017-06-23 21.19.20

The audacious cat ate part of Sam’s dinner while it was cooling.

2017-06-24 18.53.29

Our tomatoes are actually growing in their new place!

2017-06-24 20.26.57

Beautiful sunset from our backyard!

2017-06-24 20.27.21

Our orange tree is growing fruit again!

2017-06-24 20.28.09

The yard is getting prepped for more grass:

2017-06-24 20.28.29

We’re also replacing the mulch with rock. Because the dog kicks the mulch everywhere and pulls up the black tarp we put down to avoid weeds. Sigh…

2017-06-24 20.29.05

Did I ever show you Chris’s finished deck? Here ’tis:

2017-06-24 20.29.21

Soon the lawn will extend over that weedy dirt part. It’s not much more grass—just enough to finish off the yard.

2017-06-24 20.29.35

 

 

Leave a Reply

Your email address will not be published. Required fields are marked *