Monday, February 20, 2017

side effects

Rico got pink eye.

Then he got a sore throat.

Then a fever.

Then a cough.

We'd all been sick at some point during the past month, so we didn't think too much of it, although the whole scenario was painfully familiar, we tried to grin and bear it - just hoping it would pass.

In addition to his neuropathic pain,  fatigue, and general malaise, it was a rough couple of weeks.

Days went by. Then a week. We're nearing two when Rico finally decides to do a bit more googling.

Two weeks ago the pain center at Mayo put him on a larger dosage of the pain med Gabapentin.

Guess what google has to say about it:

Adverse reactions observed in clinical trials include: Very common: neuropathy (check), viral infection (check). Common: pneumonia (check - though that was last go-round), respiratory infection (check), uti (no), infection (check) annnnnnnnd otis media/pink eye (check).

What the WHAT?!!

Long story short - read your med labels kids, and ask what the side effects are. Ask and then ask again. Because even when Rico went in to the clinic (not his regular doctor - just a random guy), for his pink eye, that dude did not even make the connection.

We're not sure what the next course of action will be - but here's hoping it doesn't give him ear infections and athlete's foot.



Friday, February 17, 2017

can we not?

While perusing sites for Punk's graduation announcements, I found approximately one dozen layouts and promotions for kindergarten graduation. Lest you think I exaggerate, I've included just some for your enjoyment.


This one denotes the academy conferring the kid's diploma. Because aren't we all curious about which school has executed the daunting task of preparing her for the rigors of "East Prairie Institute of Pre-prep Preparatory Junior Elementary School"?

Ahhhhhh - just another way in which I have grossly neglected my children.

I did not send out embossed photos of my children graduating from diapers, mastering their times tables, or finally acquiring the skills to load the dishwasher without stabbing themselves with the steak knives. I didn't notify the printers when they sang the alphabet song for the first time, or when they realized that "elemenopee" is actually 5 letters - not one. I didn't tell anybody about the first time they shampooed their own hair, or plugged in a vacuum without electrocuting anybody. I didn't announce the first time they picked up all of the dog poop in the front yard without me triple checking it. 

I mean I just assumed we were alllllllll doing this.  I thought it was a parenting standard - like in the national guidebook or something.

Kindergarten is important - don't get me wrong, but can we all get on the same page here?

I feel like I've missed something. When did this become a thing? And can it not be? Because between you and I, ain't nobody got time for that. I'm too busy posting videos of them getting their wisdom teeth taken out and getting slapped in the face by stingrays (because - you know - that $#!+'s funny).

Thursday, February 16, 2017

crazy

It's been a little crazy around here lately. The least of which has been this:



Punk had his wisdom teeth out rather suddenly last week. He's all good now, but it took a while for him to fully recover from the anesthesia.



We don't see each other much for these next few weeks while the big kids go into 4 hours of nightly rehearsals for their Rock and Roll show. I miss them.




Wednesday, February 1, 2017

keep on keepin' on

Things are better for Rico.

Things are better for most of us.

Rico is weaning off of his pain meds. Thank God, because it while he was indeed healing, his rational thought process was a little less rational than usual. I mean how else do you explain doing this on his first day out of the house?




His arm strength is good - there's no other way he could have gotten in there, but getting down was another story. Let's just say the five year old who overestimated his vestibular abilities was not the only person to be rescued from the climbing web that day.

The big kids got through finals relatively unscathed, and are handling new classes and grueling rehearsal schedules like champs.

Tiny is working hard on being brave, and even managed to order her own food at a restaurant this week. We sent out some info to her school this week, and while this may not be the best way for everyone to help someone who is struggling with selective mutism, it is the path that we have collectively decided to take. If you are so inclined, and would like to help, here's what you can do for her:

Dear friends, teachers, and family,

As some of you may know, our first grader has been struggling with anxiety and selective mutism. We are currently working with a therapist, as well as implementing various strategies to help her learn to live with these issues, and hopefully overcome them someday.

We are working on few "first steps" in the process of helping Tiny build her "brave muscles".

Step one for us is psychoeducation. This entails us sharing her story with trusted adults in her life, and letting them know how they can help if they are so inclined. So here is what we know so far: 

1) Selective mutism is not an oppositional/defiant disorder. In fact, what led us to this diagnosis, is Tiny herself telling us how very much she wants to speak, and how she is physically unable. She has said, "It's like my throat won't move." She loves to be included and loves to play - she'd love to offer her opinion, loves to sing, loves to read with silly voices, but at this point her body and mind aren't always allowing her to do that in school or in various other places that aren't home.

2) Tiny is not at the far end of the SM spectrum, yet she has a long way to go before she will be able to do things like ask to use the restroom in class, or ask to be included in a group activity or possibly even participate in certain classes.

3) She is also being evaluated for retained fear paralysis reflex. This could be what contributes to her "deer in the headlights" look when confronted with a stressful situation. It also creates difficulty with her gross motor skills, balance, ability to gage motion (ball games), and an inability to try new things when being watched or compared to others (especially physical activities).

4) For some kids, the effects of treatment are visible in about 18 weeks. For other kids it takes 2-3 years. We're optimistic - but also patient. She has been struggling with this since she was two.

5) "Please", "thank you", "hello", "goodbye" and "sorry" are some of the hardest words in the world for her to say. Not because she isn't grateful, or sorry, but because she knows she is expected to verbalize very quickly in these situations. Unfortunately, as cringeworthy as it feels to us as parents - these may be the last words to come.


These are ways that you can help if you'd like:

1) We are creating a "talking map" for Tiny. We are trying to discover who and where she is talking well, and where she is struggling.  If you receive this information and would like to help - simply letting us know if she has ever spoken to you and where (or where she hasn't) would be helpful. Often times she will be able to speak with somebody one on one, but not in a classroom setting. Or perhaps she can speak in some classrooms/neighbors homes but not others. We are trying to start treatment by adding people and places where she is most likely to have success, and least likely to feel additional pressure (that part will come later). 

2) IF Tiny has ever talked to you, or spoken in class, ordered at your restaurant, we are working on building her bravery in those areas. To do this, we've been challenging her to "forced answer questions" as opposed to "yes or no" questions, as this increases the odds that she will be required to say something. For example, "Would you like to use the jumprope or the basketball?" "Do you want the book about dolphins or fairies?".  If this seems easy for her, open ended questions are great too. But we are trying to eliminate the possibility of her using nonverbal cues to communicate.

3) She is learning how to be uncomfortable and still get the job done. For her - and for us - this is the worst part. Sometimes her brain does not want to cooperate when asked a question, and she may need a five second period to answer. This feels like foooorrrrreeeevvvvvvverrrr. It's painful to her, it's painful to watch, but it is also best for building her bravery. However, doing this in front of a large group will not work, and will likely cause a panic attack, but one-on-one, or with a very small group of kids is what we are working on.

4)If Tiny has NEVER spoken to you, or in your class, chances are she feels too overwhelmed at this point to break the cycle in the current situation. In this case, we've been working on engaging her without asking any questions. So we can still expect her to participate, without the pressure of talking. However, she may be able to connect with you if you say "hi" outside of the classroom/church/usual area. She can also engage with you in non-verbal ways such as carrying art supplies, helping decorate for a party, or feeding your hamster.  

5) When she does speak in public, we thank her for telling us. Tiny is really motivated to get her voice, and knowing that she's on the right track, usually gives her some forward momentum.

We are so lucky to have so many wonderful supportive people in our lives. We are so grateful to all of her teachers and caregivers and grown-up friends. We hope this doesn't sound like a directive on how we want people to interact with our kid - on the contrary, we trust you completely and admire what you do already. We just thought that the more people who know what's going on, the better chance the world has of meeting the brave, strong, fun chick we know Tiny to be.


Saturday, January 28, 2017

Thursday, January 26, 2017

fear

Punk drew this a few years ago. We've been putting some things together for a college portfolio when it popped up again. It was fitting, because our family has been talking a lot about fear lately.  In part, it's been spurred on by Tiny's experience with mutism. 

If we've met, you likely know that neither I, nor my husband, nor my two older children have trouble with speaking. On the contrary, one of them would likely make a career out of it if possible, and the other would be hot on his heels.

But Tiny is different.

It took a while for everyone to understand how something so basic, so simple, so LOVED by the rest of us, was seemingly impossible for her.  It took a while, but we got there.

For me, it is snakes. If you've seen the Ellen video you know - if you haven't, well it's here. That's me at  3:22 every time I even imagine a snake. 

For Kooka, it's spiders. She can't even sleep in a room where she's seen a spider. Can't be in the same room with a dead spider. 

This is funny, because I am a bit of a spider rescuer. I'll get the spider from her room, take it outside, make sure it has a safe spot, wish it godspeed and be on my way.

Kooka has picked up wild snakes with her bare hands. I actually watched it happen one time and stood there frozen, thinking "Be a shame if that's venomous, because there's not a damn thing I can do about this situation."

And then there's this kid:



But she feels the exact same way, the exact same fear, when she is asked to speak.

The difference here is that nobody asks me to hold a snake for 8 hours a day. 
Nobody is dropping spiders down Kooka's back during civics class.
But Tiny - she's feeling like somebody is dropping spiders down her back for several hours per day.

We tell ourselves every day, it doesn't matter what any of us are afraid of - they key to understanding, the key to helping each other is knowing that even if the catalyst is different, the feeling is the same. When we put ourselves in that mindset, it's much easier to get through the tough times.  

Telling her to not be afraid to say hi to her classmates, feels exactly the same as someone laying a snake on my pillow while I sleep and telling me not to worry about it. Telling her it's OK to ask for help during math time, feels the same as asking Punk to bungee jump from the Golden Gate Bridge.

We also realize that nothing will get better here if we all just keep telling each other how stupid it is to be afraid of snakes, or spiders, or heights, or speaking.  It might very well be stupid, but that won't make the feeling go away.

So we keep looking for ways to help. We did find a place that's got everyone talking  - literally. It's a specialized institute in the heart of New York City. We looked into taking a family road trip to participate in their intensive program. But at $1,800 per hour, for 12-20 hours, we could probably buy one of those custom Japanese robots to do all of the talking for her.


So that's probably not happening.

Anyway - if you see us around, say hi - especially to Tiny. She may not answer, but we're trying to give her chances to try - which is really all any of us can do.








Friday, January 20, 2017

comfortable

Just when we got a little comfortable . . .

Rico woke up with a larger than golfball sized lump on his elbow.

In our past life we were not ER kind of people. We were not even "I gotta get to the clinic today" kind of people. We were more like, "I've had this pain for three weeks now, maybe I should check it out, or stop eating so many chicken nuggets" kind of people.

But not any more.

Especially when one of you has recently stopped taking heparin, and the specialists at Mayo reiterate how fast even a small, lump-like blood clot can kill you.

We were in the car pretty quickly this morning. Rico even beat me to it.

After three hours, an ultrasound and some prodding, it was discovered that Rico has bursitis.

He has a swollen elbow. The doctor says it's likely because he's using his arms so much more than usual. I was going to point out that it could also be linked to his constant rifling through the fridge looking for the "Brooklyn" mustard, the "New York" cheescake, or the "Manhattan" English muffins - but I digress...

Per usual, treatment for swollen appendages, phalanges and other random bits, is rest and compression. This meant a trip to the pharmacy to purchase yet another fashion accessory. Rico will now be wearing at least one thigh high compression stocking each day, compression shorts, and if the ER doctor has his way, not just one but two elbow compression sleeves as well.

At this rate, we expect him to be sporting something like this in March:



This during the dance recital:




Wednesday, January 18, 2017

food

I would not quite say that Rico is back to his old self. He's still housebound, he still needs naps, he's still on narcotics.

But he is up early enough to make business calls. He's walking well enough that I came home from Tiny's appointment and found clean counters. He's with it enough to mock the overpriced banana bread I brought home and laughably compare it to the 19 New York cheesecakes his not-so secret admirers have sent him. (OK - 18 of them were mini baby cheesecakes - but still)

Where does he find these people? And why do they keep encouraging him?!!!

You should see him sift through the fridge -  bypassing two jars of French's, gourmet garlic mustard, a bottle of Grey Poupon, just so he can smuggly slather his sandwich with Zabar's. And he'll just stare at me over the top of that sandwich like I don't even know what "good" tastes like.

He savored the bagels his friends sent him like he was eating caviar with the Sultan of Agrabah. His eyes closed, and he was all, "Oh, yeah baby, this is the stuff."  

I'm like "You're kidding right? We can buy fresh bagels downtown, made right in front of us from a guy, who used to own a bagel shop in Chicago. And thi sbagel that you've saved for three days trumps that?!"

"It's the good New York water they cook it in." He says it like he wants to marry that water.

Ug.

It's everything.

The pizza.
The Chinese food (I'll give him that one).
The chile' rellanos.
No food is as good as the food of his childhood.

But it's cool. Maybe I'm just jealous. I mean it's not like anybody's exporting my hometown favorites 40 years after I left the place.  I haven't had a Bakersfield DerWienerschnitzel or 7-11 Slurpee in over 30 years - clearly my people are gonna need to step it up.