How to Stay Safe AND Sane in the Face of Disease -- Advice from a NICU Parent

You've just been told school is cancelled. For weeks. To prevent the spread of disease.

I'm sorry friends, I've been there. When we were told that Jonathan needed a third winter of isolation, I wanted to cry. And it was the best choice we could have made. You see, to a micropreemie, RSV is a lot like COVID19. And we did not want to see our little one intubated again.

Isolation for a micropreemie meant this: No large gatherings, no church, no grocery stores. If we broke these rules, even once, even just to attend a wedding of a loved one, we risked him loosing much needed in-home therapies. So we never broke these rules.

And it worked. When we did take Jonathan out of isolation for his first year of preschool, he got sick. He was hospitalized and he needed oxygen. But he didn't need to be intubated, he wasn't at risk of death, and his hospital stay was minimal. We'd given him time. And sometimes, in the case of micropreemies & the new Coronavirus, time is a huge gift.

HERE'S WHAT YOU NEED TO KNOW ABOUT HOW TO STAY SAFE AND SANE WITH SMALL CHILDREN AT HOME AND SEVERE ILLNESS IN THE COMMUNITY.

IN GENERAL:

• DO take health professionals seriously. They know what they're talking about. 
• Don't gather with lots of people
• Limit time in grocery stores & don't take small kids to the store. Let's face it, they're not good at not touching things.
• Stop the spread of this coronavirus. We didn't get the flu shot when Jonathan was a micropreemie because we were afraid of getting the flu -- we were protecting him from exposure. We used sanitizing wipes at the grocery store, hand sanitizers at church, and practiced social distancing at work -- not because we were afraid of being sick, but because we were afraid that if we got sick, we'd be exposing HIM to the illness. Now the tables are turned. Kids are fighting coronavirus well. But adults aren't. And we need to stop the disease. We do that by stopping all exposure.
• DO scrub in. Take your rings off for the season. Any time you enter a new building or come home from work, scrub hands up to the elbows and sing the ABCs as you lather. Get under those fingernails. Keep using those good scrub-in techniques every time you use the restroom or a tissue, etc. Get some good hand lotion so that when your hands get all dry from all the hand washing, you prevent cracking & bleeding.
• Teach your kids good hygiene skills. Wash, wash, wash. When you eat, when you use the restroom, when you touch your face. Stay clean.
• Social distancing works. If you can't touch their outstretched arm and they can't touch yours, that's a good amount of distance. It doesn't mean don't cuddle with your kids, they need cuddles to feel safe and loved. Just ONLY get that close to your kids -- distance yourself from others.

IF YOU HAVE AN IMMUNOCOMPROMISED FAMILY MEMBER:

• CONSIDER changing clothes when you get home. When our daughters came home from school or when we came home from work, we changed right into our PJs and scrubbed in. We didn't touch the isolated micropreemie until after we got changed. It became part of our routine because RSV lived on clothing. Coronavirus may be different, but it is an easy step to take. 
• Don't take that family member shopping with you. Just don't.
• If you feel sick, even just a little bit, limit or eliminate exposure to that family member. For us as parents, this meant swapping who took care of the little one.
• Practice social distancing. Where possible, keep the family member six feet away from others.

SCREENING VISITORS

Grandparents came over, my daughters still had occasional play dates, and my son had in-home therapy three times a week. How did we manage? My rule of thumb was fairly simple:

• Tell visitors to stay away if they're feeling sick.
• Ask visitors to change clothes and scrub-in.
• If potential visitors think these measures are extreme, just don't have them over. It's a sign that they're probably not taking illness as seriously as they should.
• If a colleague didn't know how to cover a cough appropriately and used his hand instead of the crook of his arm, I noticed. If he said "I just have a small cold, it's okay." I remembered that RSV looks like a small cold in adults, and as soon as he left the office space, I sanitized EVERYTHING.
• Coronavirus is similar. It doesn't look like much in some, and can be deadly in others. If people are downplaying their own symptoms and not keeping to themselves, then I need to keep myself away from them.

BUT HOW DO I STAY SANE?

• DO go outside. Perhaps don't go to the farmer's market, but if you have a back yard or even just a patio, play there.
• When it gets nice outside, OPEN WINDOWS. Fresh air does wonders for the soul.
• Play music.
• Limit exposure to others, but don't cut off all ties. If people are well, haven't been exposed to those who aren't well, and are willing to scrub in -- then allow small groups to visit. Keep groups smaller than eight, keep social distancing, and use your best judgement about activities. Again, back yard activities are great. 
• Facetime. Use technology to connect to other people. Not just by facebook posts, but by real interactions like (remember when?) phone calls.

AND HOW DO I KEEP MY KIDS SANE?

• Have some structure in place. But keep it loose. 
• Tell kids they must do two chores. Bonus there: then you're house is clean and you feel more in control.
• At the same time give kids a chance to just play, knowing that (like summer break) too much freedom just leads to boredom and cranky kids.
• Plan ONE creative activity a day. Don't over-plan or you'll burn out.  I hate pintrest, but if you're so inclined, seek out pintrest for ideas.
• Play-do
• Board games
• Make a science experiment
• Plant a garden
• Paint a room
• Create box monsters
• Have some time focused on school / educational goals.  If your school isn't moving to online learning, you can still help kids meet their goals. You might not have time to homeschool, but have your kids touch on math and reading/writing skills each day. Have 15 minute refresher sessions. Make it fun, or make it the chore they have to do before they can play Minecraft. Either way, keep the brains going. You and your kids will feel better with some of this structure still in place. And small amounts of time focused on learning really does make a big difference. [When Jonathan was in isolation, we made sure there were five minute blocks of his day scattered throughout where we practiced the skills that occupational and physical therapists had as their focus for that week.]
• Go for walks and bike rides. Invite friends along. It's a great way to get outside, and as long as you're not in a busy city, you're probably practicing social distancing.
• If your community doesn't have active cases, invite a friend over at a time. Don't have a huge party, but kids can still have play dates as long as they're scrubbing in. In some cases, this is inevitable as family and friends are needed to cover childcare responsibilities. Just keep the group small and have hand sanitizer in place.

Note: I am not a healthcare professional and all advice should be seen as non-medical. Use reason and seek the advice of true professionals.

Where's your gaze?

I asked my son's eye doctor when my son would be able to tell us what his tunnel vision was. We know he has tunnel vision, when would he be able to tell us what he couldn't see around the edges? The doctor said something profound.

The doctor said that my son would never be able to tell us where his blind spots are. Because to him, they aren't blind spots. It's not like he sees black or sees through a tunnel. He just sees what he sees and doesn't see the rest. Like I don't think of what I'm not seeing behind me, he never thinks about what he's not seeing next to him or in front of him or where ever the spots without vision are. And most of the time his brain fills in the blanks for him based on what it remembers seeing moments before. 

This has caused problems for my son when, for example, he is SURE that the foot rest on the rocker is up because he saw me reclining as he approached, so he puts his hand out confidently to climb on to my lap, only to discover with a horrible thud to the ground that, since leaving his field of vision, the foot rest had been pushed in and I'd sat up so I could pick him up. 

His vision reminds me that sometimes as humans, we need to remember to turn our gaze away from the things we normally see and look for the things we don't see. Because if we don't turn our gaze elsewhere, those things, those places where we are misunderstanding, will never be understood. We all have tunnel vision. And we all can be tripped up by our misunderstandings.

How AHCA trickles down to social justice issues

Let's talk justice.

Here's what it's not. Justice is NOT that I, as an advocate for my son with special needs, can get him the services necessary to obtain equal access to educational material. Because I'm a squeaky wheel he has an FM system. Because we asked, he'll have braille. This is great for us, but were we not squeaky wheel parents asking for an interpreter, he'd never have gotten an FM system, his language wouldn't have advanced this much in a year.

So the analogous parent who doesn't have the resources to fight? The school will assume no FM system is necessary, saving a buck or two but ultimately decreasing that hard of hearing child's ability to process what's happening in the classroom.

But guess what COULD make injustice even worse. Loss of federal funding to schools through the new AHCA bill. See, there's this little line on my son's IEP form that says if he qualifies for medicaid, I allow the school to bill his medicaid account for health services received at school. Screenings, etc.

While my son doesn't qualify for medicaid, the school relies on that extra money. It allows their special education budget to expand to meet more of the needs of the students.

Notice, from my first long paragraph, not ALL the needs of students. Funds are still stretched thin.

Folks, TALK TO YOUR SENATORS. Let's not let the new AHCA bill pass.

And if they don't listen to stories about special needs kids, let's talk to their pocket book. WITH SERVICES early on, my child will live a self-determined independent life as a DeafBlind adult. [He has Usher Syndrome, a genetic condition unrelated to prematurity that will take his sight sometime in his second decade or beyond.] We expect him to have a job, live apart from us,etc.

WITHOUT SERVICES EARLY ON, we see a different story. He'll be very frustrated in school. He'll keep falling behind. And this is before his vision declines. He perhaps will hate writing and reading because they were never made clear to him, and literacy is key to his success moving forward. Without services, we can see a future where he'll be dependent on welfare.

Dramatic? Extreme? Perhaps. We hope not to find out. We do know one thing, though. Early interventions make a huge difference. We've seen this in our kid.

Our child will be fine. He lives in privileged. He has parents who will go to whatever extreme needed to get him services he needs. But there are other kids like him, kids on the margins. Changes to their lives early on, getting the services they need at school, will make a huge difference. School budgets are tight. This small change will have huge ramifications. Let's not fail them!

Come see me live

This blogger and storyteller will be performing at Listen to Your Mother! Come join me.

Here are the details:

Celebrating Mother’s Day and benefiting Safe Shelter for Domestic Violence, the live storytelling stage show that gave local motherhood a microphone, Listen to Your Mother: Southwest Michigan, returns to the St. Joseph High School stage for its Grand Finale on Sunday, May 7^th at 4:00 PM. Early bird tickets ($15, general seating) on sale now at https://ltymswmi17.eventbrite.com. Admission at the door $20. Brought to you by the dynamic production duo: Beth Haire-Lewis and Kim Jorgensen Gane.

Graduated!

Since the last post Jonathan has continued to eat everything by mouth. He now can have PB&J sandwiches, crackers, cheese, mac & cheese, spaghetti, etc. He's graduated from feeding therapy, and while we're continuing to work with him daily to increase his ability to chew, he's doing great. He's even coming to us and REQUESTING food when he's hungry. Amazing.

I got no tube to hold me down.

Tomorrow will mark week 6 of feeding therapy for Jonathan.
Today he ate all his meals by mouth.  It was our first day doing a home meal, and he did okay with it. Some gagging sometimes, yes, but smooth and in. No vomiting, no major behavioral issues, just sitting and eating (and playing) like a big kid.

He still will need his tube for overnight hydration (because of a kidney issue) but he doesn't need it during the day anymore. Let's hope this sticks!

Cheers,
Jonathan's mom

The last 2+ weeks of intensive feeding therapy

Since my last post, JAM has taken a dry spoon (seriously, and no sweat! He just DID it) and then was slowly introduced to one food, then continued to increase volume of food until it was a full spoon, then added a second and third and now (just yesterday) fourth type of puree, one food at a time with the bite sizes slowly increasing and the amount of time allowed at each sitting also slowly increasing. Bite of food, reward of preferred toy, drink, reward of preferred toy, and repeat until the meal is done. All negative behaviors have been ignored, and it's worked. Negative behaviors are now all but non-existent. (He still lets us know that it's hard. He still shakes his head, says "no," and sometimes gags -- but the incidence of negative behaviors has dropped remarkably.)

This week I walked into the therapy room for the first time. Not for a meal, just to try to see if he'd let me brush his teeth the way he's learned to let (and trust) the therapists to brush his teeth. (WHICH, in and of itself is a huge accomplishment of the last few weeks: teeth brushing with wet brush, teeth brushing with toothpaste on the brush, teeth brushing while standing at a sink, and now today teeth brushing standing at a sink with toothpaste and MOM doing the brushing instead of the therapist.)

And he did.

Dentists, this kid would be your favorite patient. If you ask him to open, and put your finger right on his chin (no pressure needed) he opens REALLY WIDE and stays open as you count a slow "one two three" and brush his top right teeth, "one two three" for the bottom right, and on for the top left, bottom left, and front top, bottom top. Total of 18 slow counts. I don't think I would have the patience or ability to stay open that long without gagging. But don't tell my son that.  A month ago we had to force-brush his teeth. He wouldn't open at all.

SO, that was huge.

And then today again, another big achievement: he ate an entire meal by mouth.  All purees: a protein, a veggie, a fruit, and a high-calorie drink.

I was on the other side of the one-way-mirror doing a happy dance.

He was so excited he did a happy dance after therapy too, all over the family room, giving hugs to other kids, dancing in circles, and then (as we left to go home for the day) working himself into such a fit of happiness and excitement that he started breathing too hard. Then coughing. Then... well, "easy come, easy go."

Oh well. At least he got it all in by mouth. Next step will be to KEEP it all in.

Then after he gets used to tomorrow's new food (so in a day or two) I get to enter the room and be a part of his meals again.  Slowly they'll transition me to being in charge of the food, and maybe by early next week we'll be able to eat plated meals at home. (Meals are plated, carefully weighed, measured, and analyzed to be sure that consistency of food is similar across the board. Purees must be absolutely correctly pureed. I failed the first three times I tried.)

So far this slow, controlled therapy is working, though. These folks know what they're doing. One month down. I'm excited to see what happens in these next three weeks.