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Tuesday, October 17, 2017

All the Ribbons of the Rainbow

hat hair is not currently in the DSM
I can't remember what I've written and what I've left unwritten.  I'll write this chapter style because there is a lot to unpack, and it's all related and also completely separate...So let's hop in the wayback machine and adjust our dial to late winter of 2016...

Chapter 1:  A Lil Help Please

Because of the severity of Lily's disability, she qualified for a case manager through her ID (intellectual disability).  That person put me in touch with an agency.  That agency suggested I solicit my doctor's office for a "letter of medical necessity".  That letter, forwarded to Lily's Medical Assistance insurance got her approved for a home health aide.  Basically they would pay for an aide to stay with Lily 4 hours per day on school days that I worked, and 10 hours per day on non-school days that I worked (ie. the summer). 

Amazing benefit, right?  Except that the problem isn't even getting approved for the benefit.  The problem is finding someone to actually provide the care authorized BY the benefit.  Nobody had anyone to offer.  Six agencies told me they would recruit for the position.  Meanwhile my parents and in-laws continued to commute to my house for daily bus duty.  I speculated that maybe because there were limited hours...or the pay offered through insurance wasn't enough, or the hours were weird.  I wasn't sure, but wasn't getting a lot of interest. 

After two or three months, I finally had a string of interviews (they call them "meet and greets").  The first one didn't show up to the meeting.  No thank you.  The second one didn't show up to the meeting.  No thank you.  The third one showed up to the meeting and seemed quiet, but was fine.  A fourth meeting was scheduled but canceled before the meeting. 

Four interviews.  Three no-shows.  The person who "showed up" was hired.  It made me extremely uncomfortable.  But...she was the solution. 

Okay, let's put a pin in the aide situation.

Chapter 2:  Hidden Results

Around the same time as I was getting Lily's ID "label", I had reached out to Lily's developmental pediatrician to ask him about Rett Syndrome and Lily.  We had gone back and forth a few times about it in the past.  He asked me if we'd ever done the testing.  I told him I thought we had, but that the results had been negative.  Over the course of time, I had looked through all of Lily's genetic testing information and eventually came up empty despite feeling CERTAIN that we'd done the testing. 

I reached out to him again and asked if he had access to any other genetic test results that I didn't, because I couldn't find any record of it being done.  In March or maybe a little later this year he finally got back to me via phone to tell me that he found it.  And it was positive. 

And of course I was like...what.  the.  actual.  fuck.  dude. 

It turned out that yes, he'd ordered a genetic test for Rett for Lily back in 2013 or 2014 and that the results HAD come back around the same time.  And that they had been positive for the genetic marker for Rett.  So...what happened?  Why did I always think that she absolutely had been tested and absolutely didn't have it?

It turns out that the genetics lab had sent a cover letter to the doc indicating the preliminary findings, with promises of a report to follow.  The doctor filed the cover sheet and waited for the report...which never arrived.  He forgot the cover.  Forgot he was waiting for the report.  And everyone moved on.

But Lily continued to show some pretty stereotypical Rett's traits...hand wringing, pressured breathing, etc.  And, forgotten results notwithstanding, the doctor treated Lily as if she DID have Rett, or at least "prescribed" supplements that were supported by science for the treatment of patients with Rett Syndrome. 

So we found the cover sheet.  Genetics lost the report.  It's gone.  But Lily has Atypical Rett Syndrome.  Atypical in all the best ways...she CAN walk.  She does NOT need a feeding tube.  Those sorts of atypical things.  But with the new Rett diagnosis came a referral to meet with a geneticist.  I started looking into setting up an appointment.

Chapter 3:  Seize the Day

In April Lily's school reported her first seizure activity.  Absence seizures.  She was unresponsive for a minute or two, rocking rhythmically and drooling.  Then she would snap out of it and be okay again a few minutes later.  They loaded her in an ambulance and I met her at Children's Hospital ER. 

A long day in an emergency room followed. 

Fun fact:  Children's hospital does not have large pullups for children.  So, if you are meeting your child at the ER and somehow did NOT pack pullups in your car for work, they have no way to control potty situations.  Might as well duct tape a fucking roll of paper towels to your daughter, sir...we at "Children's" hospital ER are not equipped to handle your special needs.  Dicks.

They wouldn't let her eat.  Or drink.  Had tests to run.  It wasn't fun.  Ultimately left the ER without any sort of confirmation of the seizure itself, but other tests that came back "normal". 

We also left with a recommendation for a new sleep-deprived EEG to be conducted, and a sedated MRI, along with a followup with a neurologist.  Lily's developmental pediatrician seconded the recommendation.  I began to look into setting up those appointments.

From April to August she would have another two or three seizures, and I finally witnessed one myself.  I didn't love it. 

Looking back, people have been reporting seizure-like activity all the way back potentially to her being three or four.  It was always maybe once or twice a year someone would say she would just sort of stare and rock and drool and be unresponsive, but we'd never actually witnessed it, nor had a nurse (like the school did in April) witness it.  So, although we DID do a sleep-deprived EEG years ago (2011 to be precise) the results then were inconclusive.  The saw no seizure activity.  And the followup recommendation they made was met with a polite but clear "fuck you." At least in my head.

Chapter 4:  Appointments

I don't remember what was first, and I'm too irritated right now to look it up for accuracy's sake.  Lily did a sleep-deprived EEG.  She did a sedated MRI.  She met with a neurologist and a geneticist. 

The results of the EEG were...inconclusive.  According to Lily's developmental pediatrician...they showed "normal background slowing consistent with someone with Lily's diagnoses".  Only this and nothing more. 

The results of the MRI showed a Chiari type 1 malformation that was not shown on a previous MRI Lily had when she was like 2.  That generated a recommendation that she see a neurosurgeon.  I scheduled that appointment.  We visited. 

I will wrap your head around all this awesome appointmenty goodness momentarily. 

I met with the Geneticist.  Did you know that 90% of people with Rett Syndrome have seizures?  No?  I didn't either.  90.  Percent.  So yeah...she seconded the idea that Lily meet with the neurologist, who I was already scheduled to meet with, but it was wayyyyy out in the future because apparently it's all the rage to have a neurological condition.  I asked about followup.  She said, "I'd love to continue to follow Lily, most of my Rett kiddos end up being followed by neuro though."  k.  She recommended a bone density scan, and some other stuff.  I haven't looked into scheduling that yet.  At this point the number of appointments that branch from each previous appointment requires a fucking diagram.  hmmm.  Maybe I'll do that.

I met with the neurosurgeon.  Chiari Malformation isn't really a thing in kids.  I mean it is and isn't.  They did this study in the 50's.  All these people who died.  They found this statistical incidence of some measurement ratio in the brain.  Like...these people all shared this ratio in their brain stem and it was when measurement X exceeds such and such a percent of measurement Y...we shall call this ratio a Chiari Malformation. 

But it was a study done on adults.  And there is no data on children.  Soooooo...when MRI technicians see this magic ratio, they spike it out and a neuro-surgeon magically appears to follow your child through the rest of her days like you said "Bloody Mary" three times in a mirror.  Symptoms to watch for...loss of balance, dizziness, head banging, etc.  We don't see that. 

I asked about followup.  She said, people follow up yearly and get a new MRI every five years.  But if there are no symptoms, we won't really have anything to discuss.  I said...okay...so a year from now can I just reschedule for the following year?  "Yes.  That would work."

And then I met with the neurologist.  She put a giant purple ribbon on the entire encounter by telling me that because Lily two or more seizures we qualified for the "Epilepsy" package!  So it turns out that by virtue of Lily's seizures she's considered to have epilepsy.

Here are some things to think about that maybe I never thought of before...Don't leave Lily unaccompanied in the bath (in case she has a seizure and falls under the water) ...or in the swimming pool (jesus...not that I ever would)...or really...anywhere that she could fall and get hurt in mid-seizure.  ALSO...we're going to give you an emergency medication in case her seizures last more than five minutes.

Also also...we need to do a prolonged EEG to see if we can observe her seizures to better prescribe seizure medication for her moving forward.  Okay...but doc...doc...hold up.  Her seizures have all been pretty benign.  I mean...she just sits and rocks and drools.  No thrashing or tongue biting or whatever.  Why even bother prescribing meds.  What can it do for her?  She only has one about once every three months if that, and when she does...she's recovers in a couple minutes and is good as new.

ohhhhhh...yeah...about that.  We have this little thing in the world of epilepsy.  Probably you haven't heard.  It's called SUDEP.  In order to minimize the risk of SUDEP it's important that we get her seizures managed. 

Oh...okay..what's SUDEP? 

Uh...well...it stands for Sudden Unexpected Death from Epilepsy.   Fan-fucking-TASTIC!  So yeah...

So yeah, we need her to be medicated.  So I asked whether the results of a prolonged EEG would dictate which med she took.  The doc more or less said that odds are it will be Depakote, but it might be this other drug (can't remember).  But before they can prescribe Depakote they have to first do a POL g test because if the results of THAT come back positive, then they can't use Depakote.  So I'm on standby while they negotiate with the insurance company to see if they can get the test covered. 

Chapter 5:  Revisiting the Aide Situation

In September my aide quit.  Awesome.  It'll be sooooo easy to find a replacement.  (spoiler alert...I haven't yet found a replacement).  A week after my aide quit we had a meet and greet with an aide.  Again...she showed up.  Again...I wanted to proceed.  I took the day off on her first day to go over stuff with her.  She didn't show up to get Lily off the bus.  Thank god I was there.

It was probably for the best anyway, because it turns out, an aide can't legally give Lily any medication...including the emergency seizure med already in my house (for a seizure lasting longer than five minutes).  So even though she'd have been covering Lily...once the med was prescribed she would have had to get replaced by a nurse.

I had to reach back out to the doc for a NEW letter of medical necessity including the NEW diagnosES so that the insurance could review and approve (they did...and did) a NURSE in place of an aide. 

Soooooo...currently looking into the nurse situation.  To date...One nurse interested in a meet and greet...failed to show up.  In her defense...the agency indicated she had to go to the hospital.  That was two weeks ago.  She must be REALLY fucking sick.  That agency offered me a male nurse instead.  I politely declined. 

I was super excited to take a half day off today to do a meet an greet with another nurse that was interested!  But they called this morning.  She took someone else's case first. 

If you're keeping score at home that's six no shows.  This morning's no show made me a lot sadder than I expected it to.  I think I got my hopes up (the nurse thing has gotten more bites in less time than the aide thing ever did) but basically I'm still in the position where the one person who actually makes it to an interview and shows up for work...gets the job.  I feel EXTREMELY comfortable with that.  SARCASM!!! 

Meanwhile my parents have been covering the bus drop offs and I've been attempting to work afternoons from home...which actually works pretty well, but does NOT have the blessing necessarily of my boss's boss and I'm worried that at some point it'll come to a head. 

I'm frustrated.  I'm anxious.  I'm worried.  I'm upset.  I'm tired.  I'm standing. 

A friend of mine said this morning when I told her about the latest fucking no-show..."what now?"

And I told her, and I'll tell you...

What now? 

Recover my mood.  Reclaim my patience.  Breathe in.  Breathe out.  Follow up with agencies.  Wait.  Beg favors from family.

Local nurses looking for work?  I can actually guarantee you a job with any of the agencies that staff this shit.  Insurance dictates the pay, but it's work.  Inquire within...

Fin...

Epilogue:  I've been  meaning to write about Rett for a long time.  But the cascade of new appointments and diagnoses all needed followups to understand and unpack.  And each new appointment generated NEW appointments and diagnostic followups, and it never seemed to coalesce into "the big picture". 

So now it has.  I mean...I still have bone density scans and other stuff to do, but basically it's a relatively clear picture at this point.


Emma cut straight past the bullshit to a spectacular question..."So does this mean Lily doesn't have autism?"

For 8 years (seven?) I've been blogging about autism, participating in autism groups, even leading them.  And here we are...not...autism?

The neurologist indicated she is still on the spectrum, officially.  I guess it would be difficult, especially since Lily's Rett is atypical, to separate what is Rett and what is autism.  And certainly the symptoms put her squarely within the DSM's current guidelines.  But Rett IS genetic.  You CAN run a "simple" genetic test and KNOW that your child has it.  There's no grey area.  No refrigerator mom bullshit.  No engineer dad bullshit.  No internet caused it bullshit.  No overweight moms caused it bullshit.  It's just a genetic anomaly...like Down's Syndrome.  

But yeah...Lily is still autistic...

...with Rett, epilepsy, and a chiari malformation, and no fucking nurse.  I'm going to run out of room on my chest for all these awareness ribbons.

Monday, September 11, 2017

Anniversaries

***The first half of this was written a couple weeks after Leslie passed**

I don't know how to do this.  There's too much ground to cover.  Eulogize?  Explain?  Vent?  Maybe all of the above.

My best friend...my wife... passed away on April 7th.  I didn't have a lot of time to prepare for it, but I suppose I had more time than most people do.  She'd been sick for years.  Cancer. 

I know, fuck cancer, but I don't even really hate cancer.  I just hate the circumstances.  This was round three.  The first two times we knew we'd beat it.  But it was like that cat in song that just kept coming back the very next day.  Always a sucker punch away.

It all started with a cat, actually.  We got Emma a cat.  I'm allergic.  Leslie always said, "I'm not allergic to cats, just dogs," but when we brought the cat home, she started coughing and wheezing just like I did.  She didn't like her PCP (primary care physician) so she hated making appointments, but my doc gave me Singulair and I started taking it and I got better.  She finally caved in and got allergy meds too, but she didn't get better.

We finally went to the doc and had an x-ray that showed fluid in the lining outside her lungs.  I can't make this super medical or complicated, or this post will be impossible to read, but where most people inhale and their lungs expand into the empty lining around their lungs...Leslie's lining was slowly filling with fluid that wouldn't allow her lungs to expand into it and she couldn't breathe.

They biopsied the fluid and it was cancer.  "But the cat came back the very next day..."  Metastatic breast cancer.  I made the mistake of googling what 'metastatic' meant.  Leslie didn't.  She didn't like to know the odds against her.

Scans/tests/new chemo...pleural drains/dressing changes...it got worse.  A couple months later she switched chemos and things started to stabilize.  But then they didn't.  And then the other lung couldn't expand.  And it got harder and harder for her to breathe.  And then she was wearing oxygen.  And then we were turning the oxygen up higher.  And higher.

It seems like that process took forever.  It seems like she was on oxygen for years in hindsight.  But she wasn't.  I think I/we were so busy reacting to symptoms that we forgot to tell people she was sick again.  Or maybe we were just tired of giving people the same bad news all over again.

She started working from home when she couldn't climb the stairs at work.  She never made it back.  She worked from home for months.  On good days she'd bring her laptop downstairs and we'd all be in the same room together.  On bad days she'd stay in bed.

I was leaning heavily on family and friends.

Leslie and I used to say that we'd never been tested.  Despite perceptions about what Lily's diagnosis meant for our family, with a few hiccups here or there, she never really tested our capacity to care for her.  As Leslie's ability to help around the house dwindled, I picked more up.  I had the room.  It's amazing to realize how much your wife does when she's not longer physically capable of doing it.  I picked up more and more things as she was able to do less and less, and STILL I thought..."I've got this." But it was only because my in-laws and parents were picking the kids up every day after school.  Leslie had lost the ability to walk to the bus stop to pick up Lily.  I started feeling tested.  I started to wonder just how any single parent could do that day in and day out without support. 

I'm very supported by friends and family.  But I know not everyone is.  I tried to imagine how I'd do it without support but couldn't.  I was getting to work late so I could drop kids off before leaving for work, but at least I was able to work a little later because grandparents were there to get my kids off the bus for me.  Sometimes they'd start cooking so that I didn't have to when I got home.  Sometimes they'd make the kids lunches for me.

Leslie was guilt-ridden.  She felt like she was abandoning the family.  She felt like she was failing me.  She felt like she was a burden.  I tried to tell her that caring for her was my greatest honor.   I struggled through tears to tell her every time, but I did..."Caring for you is a privilege.  I feel like I finally have a chance to pay you back for all the care you've given our family."

We finally went to the hospital when the oxygen concentrator at home pegged out at 5 lpm and Leslie still couldn't get enough to breathe.  She was having panic attacks in the middle of the night.  Sometimes three or four of them.  She'd wake me to help calm her down, fetch medicine to help her, turn up the oxygen...but then there was no place to go.  We needed help. 

We went to the hospital for a tune-up.  Get the meds under control.  Get the breathing under control.  Get the anxiety under control.  Her parents were worried.  It was their 50th anniversary and they'd arranged a cruise.  Leslie begged them to go.  Told them she was fine.  The day after she went to the hospital she was like a new person.  I emailed her folks to tell them how much better Leslie was doing.  But that was the high mark of her visit.  It went down from there. 

A few days later she was still in the hospital.  She had some close friends visiting and the physician's assistant pulled me out into the hall to talk to me.  "I'm telling you this because I think it's the right thing to do."  They told me that the cancer in her lung had progressed beyond their ability to treat it.  They gave me the option:  make her comfortable or keep fighting.  She had chemo scheduled the following week.  I asked how long they thought she had...sucker punch...absolute best case scenario, "months"...worst case..."today".

So I pretended I knew nothing while I went back in to smile and chat with Leslie and her friends and inside I was thinking..."Jesus, this can't be happening.  How did this happen?  How could we not have known?"  I think I spent the night that night.  The staff met with me the following day and I told them I needed to find out whether Leslie wanted to know.  It's something she typically wouldn't want to know.  I had them ask her hypotheticals about what if THIS doesn't work, or what would you like us to try if THAT doesn't work.  I knew that if I asked, she'd know. 

They got to a point where she told them she wanted to know and they told her, and then I went to see her and we just sat there and cried and held each other and I felt like somebody had just put a big hourglass on her bedside and the sand was running out.

We told each other so many nice things.  Every day from the day I learned, I resolved never to leave anything unsaid.  I told her how much I loved her and how much I respected her and how much she'd changed me and what a great mother she'd been and how much I'd miss her.  And we knew we had to tell Emma.

I talked to a social worker and a grief counselor and googled things and by the next day I'd made notes on what to tell her.  There is nothing I have ever had to do that is harder than having to tell Emma that her mom was going to die.  Nothing. 

So here are the notes...I more or less memorized them for our talk with Emma, but these are them:

"Some doctors think that the cancer on Mommy's lungs is too far along to stop. They don't think they can make it go away. And that Mommy's breathing will continue to get worse and not better, and that all they can really do is to try to make her more comfortable as it gets worse, not cure her.

We just found out about this. We didn't know how much damage to her lungs the disease had done. As soon as we found out we started talking to people about the best way to tell you. We don't want you to think we've been keeping it from you.  We just didn't know.

1) Doctors don't know everything. Mommy's cancer doctor still wants to treat her. They can guess. They can estimate. But every one is different. We just know that it makes sense to make the most of our time with mommy right now while we know that we can.

2) Your mom is a fighter. She is not giving up on treatment and neither should you.

3) God is with us always. God has provided mom soooo much comfort throughout this struggle. This isn't God's fault. Lean on God. Pray for comfort. Pray for guidance. Know that mommy loves God and that God loves us all.

4) No matter what, mommy will always be with us. Her love, her guidance. We want her to live with us as long as she can, but if she has to go, just know that her spirit will never EVER be gone from our lives.

5) We need to love each other and be here for each other. This is the hardest thing we will probably ever have to do. But we can do it because we are a strong family with a lot of love."

Leslie's three biggest worries...that Emma would hate God, that Emma would think she was giving up without a fight, and that Emma would think we'd hidden how sick mommy was from her.

And she took it very well.  She just sort of slumped slowly against Leslie in her hospital bed and Leslie stroked her hair, and she cried and buried her face in bed.   She spent the day with us in the hospital just being with her mom.

When Emma finally went home (staying there was too traumatic with the panic attacks) Leslie and I talked again.  About how much time she had.  And Leslie said, "I just want to see Emma get married," and I just shook my head and we cried.  And then she said, "Then I want to see her recital," and I knew there was no way, but I just said, "Let's get to chemo and then work on getting to the recital."

****

This is as far as I made it two years ago when I first attempted to write about Leslie's final time with us.  I decided to write about other things.  Good memories.  The stuff we've missed together already...the stuff she'll miss in the future...that stuff is just too hard.  Too sad.  Too unfair.  And ultimately...not a healthy way to approach this loss.  I eventually wrote more about it here...One to Make You Cry...but that day I just couldn't.

It's 9/11 today, and while most people are thinking about the lives lost in the Twin Towers and the Pentagon, and in Somerset...I'm thinking about my wedding anniversary, and the woman I lost.  The woman I married 18 years ago. 

A friend asked me if today is hard for me.  It's not.  I don't know why it isn't...but it isn't.  When I think of our anniversary I'm not thinking of hospital beds and labored breathing.  I'm not thinking of future anniversaries uncelebrated.  I do try to take some time to think back on a pretty happy, mostly successful marriage that...yes...ended before it should have.  It IS still sad to me.  When I allow myself to think too much about it, it's so very sad.  And honestly, I know that the hearts of the people who love me are in the right place when they reach out on our anniversary to give a little extra love or tell me to hang in there...but...ironically...this isn't hard for me unless I'm deliberately thinking about it, which those messages invariably force me to do. 

And please...if you're one of those people, don't stop doing you.  I know you're supporting me, and thinking about it, though sad, is worth my time.  It's worth it to remember something special.  Always. 

But...apart from snot-nosed blubbering from rereading what I wrote two years ago...this is still a happy day for me.  I made the right decision 18 years ago.  All the branched paths that our decisions took us on together led me here.  My family is doing alright.  Our children are such a joy to me.  The house we picked together continues to grow and change (for the better I hope) and I continue to remind Emma and Lily of all the little ways that their mom's love and life brought us joy.  Just as they remind me daily of how blessed I was in having children with her.


I thought I'd written about our wedding day and put it in drafts, but I didn't.  I kept inching up to it incrementally and then not writing it.  I thought maybe I'd  write about it for our anniversary, but there's too much.
 
*long breath in...hold it a few beats...long breath out*

I feel like I'm pretty mentally healthy.  But there's some weird stuff going on in my head space (heart space?).  As I move forward in my life and try to find "ME".  Not me without Leslie...just me...I'm encountering some residual fear and anxiety about relationships and opening up that may or may not have something to do with losing her.  It's nothing earth-shaking.  But it's something that I see is...NOT healthy.  Or MIGHT not be healthy.  So anyway, despite basically badmouthing the therapy industry my entire adult life, I'm making plans to see someone to just talk about it.  See if there are things I can think about...homework maybe...that will help me keep moving forward. 

Anyway, I feel like that's something people should know.  Not necessarily about me, but about life.  Sometimes you need help.  Sometimes you don't "got it".  And then you get help.  Sometimes going into the woods and breathing the clean air doesn't "fix it".  Sometimes "pulling yourself up by the bootstraps" doesn't "fix it".  Sometimes compartmentalizing doesn't "fix it".  There may be no fixing it at all, in fact.  There may just be "adapting to it". 

I'm happy.  I really am.  This is just something I need to address to be happier.  HappiEST. 

In conclusion...thank you for all your thoughts/prayers/hugs.  Please don't stop sending them when you think of it.  But also, just know...every day is just like every other day.  I honestly don't feel any sadder on the anniversary of the day Leslie passed than I do on the day we were married.  I don't measure time that way (maybe that's a good/bad thing...not sure).  You won't see yearly posts about THIS being the Xth anniversary of the day Leslie died (That day isn't something I care to commemorate.  I'd rather celebrate her life) or THAT would have been our Zth Anniversary.   

But...I'm fine.  I'm happy.  And when you ask me how I'm doing because today is X...it makes me sad but only because it takes it all out of the compartments I have carefully set up for it and dusts them off and makes me look at it.  But it's worth doing.  It's worth remembering.  It's worth being sad.  And then remember happier times together, celebrating them, and moving forward.







Tuesday, August 22, 2017

A Touch of Lace

Lily has been growing like a proverbial weed.  She's sprung up almost overnight, finally cracking the "growth chart" she's loitered below for so many years.  Every time I take her to a doctor's appointment...and that is "many"...I note her measurements.  You know that baby book you keep for like the first 18 months of your baby's life and then forget where it is?  That's going on in my iphone right now.

See attached chart below:
I like charts.
She's gained almost 30 pounds in less than two years.  It's pretty amazing.  So much of my "autism narrative"...so much of how Leslie and I reacted to Lily's behaviors was overridden by a desire...a NEED to get her weight into a more healthy range.  Now though...game on.  The kid's killin' it at the dinner table.  Now I don't feel so...threatened by her loss of patience when she eats.  Now I don't feel like it's imperative that she get SOMETHING in her, so why bother with working on her self feeding.  Time to refocus.  Kid's got some wiggle room (no wiggle-related pun intended).

So anyway...growth spurt.  Her feet apparently also grow.  Sometimes I forget that.  My parents noticed her toes might be stretching the fabric of her current footwear and took her shoe shopping.  Mom sent me a picture.  Lily's favorites were the powder blue ones, but I liked both.  She refers to colors by their corresponding wiggle.  The powder blue were "Blue Anthony Shoes". 
Side by side comparison of blue anthony shoes and also...blue anthony shoes

It will become more complicated when she wears the red and navy blue ones.  All blue shoes are blue anthony shoes...so... pointing may be involved. 

At Lily's current shoe size...(Big kid size 1) the velcro options are dwindling.  I reached out to fellow autism parent, blossoming autism blogger, and AC of PA staff member, Jen for suggestions on clickable shoe closures.  I knew her son had them because she had initially struggled getting them on his shoes.  She pointed me to Zubits website.  I then went to Amazon and found a pair of knockoffs (Aircity) at half the price.  I bought white because I thought they'd look sharp with the shoes, but also look decent with ANY athletic shoe.  But they have tons of colors.

In a nutshell...they are powerful magnetic closures that you lace your shoelaces through then use the magnet to open and close them.  They look like this...


The magnets are STRONG, but you can get varying strengths for bigger (or smaller) people up through active adults using them for running shoes.  I Amazon Primed them and a couple days later I followed the simple directions and within a couple minutes (like seriously, Jen, what the hell was your problem?) had them on her blue anthony (not the other blue anthony, they have velcro) shoes.  I was pretty excited. 

She's been wearing the powder blue ones pretty much, but when I picked clothes out for her first day of school I thought the darker shoes would be a better contrast and not too "one note". 

Note shoes. 
Yeah...I um...didn't try them on Lily before I fully tightened the laces into the closure and snipped the ends.  I tightened them so much they wouldn't fit over her feet and then close.  I um...can't fix them because I already clipped the ends of the shoe laces so there's no flexibility to loosen the laces and start again (so...sorry Jen). 

So...today I'm shoelace shopping.  We'll try again tomorrow.

Thursday, August 10, 2017

Conversational English

I was telling my friend Bec that "I'm well" in response to her question asking me how I was doing the other day. I told her that's my new default instead of "good thanks", and told her this story.

My boss's boss's boss is named John. That's not super relevant to the story but I figured John would be easier to type than "my boss's boss's boss". Anyway, John has the corner office on our floor and he's super nice and outgoing and every time he sees me he says, "Hey, Jim, how are you doing?"

And I say, "I'm good thanks, how are you?"

And without fail he says, "I'm doing really well, thanks." And I immediately think...you sonofabitch...did you just fucking subtly correct my grammar??

So I'm like...god dammit...this is my boss's boss's boss. I will be damned if I'm going to allow this shit.

I'm doing well...I'm doing well...I'm doing well...I practice it in my head. It's so informal and "Montana" to say "I'm good, thanks". It's ingrained.

I'm doing well...I'm doing well...I'm doing well...

So the next time I see that son of a bitch I'm all prepped and ready.

And he says, "Hi Jim, how are you doing today?"

And I reply..."Good, thanks, how are you?" ( GOD DAMMIT )

More practice...

The NEXT next time I see him I'm fucking ready. He says, "Hi Jim, everything going alright?"

What. The. Fuck. He flipped the script. Well...i have no response to THIS. we didn't prep for THIS. Who can answer something like that off the cuff?

"Doing good thanks" (FUCK!)

The NEXT next next time I landed it, but stammered a bit, (.5 deduct)...

I used his own words back at him. "I'm doing really well, thanks," but it tripped over my tongue. Wasn't "natural".

And I realized that for some reason I OFTEN say, "I'm well" to people. But...for some OTHER reason...never in response to John. So...now when people ask me how I'm doing...it's "I'm well". And I'll keep fucking saying it until it's so ingrained in my head that when that friendly sonofabitch asks me it'll flow as smooth as McDonald's soft-serve ice cream..."I'm well, John, how are you?" I'll say. See how he likes THAT!

Meanwhile...he has no idea that I'm hostile about what is probably not a subtle grammar correction, but just the same thing he says to everyone.

UPDATE:

So today, he sees me in the hall, and basically now I have a brain block around John. I start breaking out in a cold sweat whenever I see him. I've got the conversational yips. So I see him walking toward me and he says, "What's the word?"

And I froze like a deer in the headlights...because­ who the fuck EVER knows how to answer that question, and also...because I was still all "I'm well, thank you, how are you?" like I'm just learning to speak English and think everything anyone says is "how are you". Couldn't get my high powered brain to just go on autopilot the way it's supposed to with conversational niceties.

So instead, I just totally ignored his comment and gave him mine "I'm well, thank you, how are you" and then he said, "Doing okay, how about you?"

"Good thanks"

DAMMIT!
 

Monday, July 17, 2017

Reminders

This weekend I finally marked "complete" in my phone reminder to "Add polymeric sand to patio".  I think I put that reminder in my list while Leslie was still alive, if that tells you how long you can ignore a daily reminder.  The first week you're like..."RIGHT!  I have to get that started."  That continues off and on for a few months.  After that you realize you're not doing it, so you turn off the notify thing, but you're still thinking..."I'll get to it," so you don't actually delete it.  After about a year you just don't even actually see the reminder.  I think I stubbed my toe on the polymeric sand in my garage getting out of the minivan and that got me thinking I should complete it this year.  That, and I've been actually using my reminders more consistently as a tool to combat my continuously-decaying short term memory.  (Highly recommend this)

Last year I ALMOST did it.  The job has more to it than just "add sand" though.  I had weeds growing through my patio cracks pretty much...everywhere.  And the sand fills the cracks like grout would.  It's super simple but...

First I needed to kill the weeds.  Roundup.  Fine.  I did that last year.  Then waited a couple days...did it again for the ones that lived.  Then pulled them.  Then stalled out before I could reach the next phase...

Pressure wash patio.  I almost stalled out on that again this year.  It seems the $100 pressure washer I bought 15 years ago is no longer getting up to pressure.  I thought maybe my hose was too long (ba dum bum) and almost stalled out again holding up the project until I got a shorter hose.  But after pressure washing it a few times (my dad loaned me his pressure washer and even took a turn pressure washing it before I got to it) and then pulling any remaining weeds not already dead or dying, I finally got past that stage. 

When the patio was originally installed...seven years ago maybe?...they had me fill the cracks with polymeric sand, and it probably lasted three or four years without any weeds poking through before each subsequent year stared getting worse.  It looked horrible.  Finally had enough.

Anyway..."completed."  Thanks for the reminders.
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I've been having some great successes lately with cooking.  I'll share some of those on the blog at some point.  But this weekend I had a couple "setbacks".

Yesterday was National Ice Cream Day (I guess).  I recently bartered for my friend Kate's unused Cuisinart ICE-21.  I've always wanted an ice cream maker.  For Emma's birthday in March I actually made "no churn" ice cream that turned out amazingly well (and was super easy), but I was eager to try "the real thing".

I talked to Emma about it and we decided to start out simply before doing anything crazy.  We decided on vanilla.  Kate gave me a couple pointers (put the inner tub in the freezer for at least 24 hours before starting, chill your ingredients as much as possible before starting, and don't run the machine more than about 15 minutes unless you want to burn out the motor).

I needed a recipe and asked her for one, but she was on the road and just told me to google cuisinart recipes, which I dutifully did.

Except.  Except I didn't pay attention to WHICH cuisinart ice cream maker I was getting the recipe for, and ended up making about twice as much as the ICE-21 can fit.

I followed the recipe.  It said 30-35 minutes in the machine.  I thought about Kate's warning...but it was the Cuisinart recipe...how could that be wrong?

I discovered my error about 35 minutes later when my mixture was still soup.  I reread the recipe book and saw that the filename of the Ibook was ICE-35 recipes.  uhhhhhh...

The bright side is...the mixture isn't wasted.  And I didn't burn out the motor.

So Kate advised me to just split the mixture in half and try again the next day.  (That's today, by the way).  So...my mixture is in the fridge chillin', my tub is in the freezer, freezin', and hopefully tonight I'll be making ice cream.  Happy belated National Ice Cream Day!
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Meanwhile...I decided to make a roasted red pepper for hamburgers.  I thought...roasted red pepper, avocado, and provolone would be a nice burger combination.  So I took the red peppers out to the grill and started them cooking.  Once I got back in the house I changed my mind about the burger, deciding we'd had them too recently, and decided on spaghetti instead.

I remember thinking...maybe I should set a timer for the pepper so I don't forget them.  But I decided I wouldn't.

This morning I woke up and looked out at the patio...it's so bare with all the furniture still off in the grass, and it looks so nice with all the cracks filled with the hardened sand/grout and not a weed in sight.  I glanced at the grill (which I'd rolled back the previous night to roast the red peppers) and froze.  The red peppers!

They were done.  The gas was gone.  They were done and sitting on the grill, black as pitch but perfectly in shape.  I picked one up.  It was paper light.  I squeezed and it cracked, crumbling to powder under the pressure of my fingers.

I should have set the timer.
Delicious..."blackened" roasted red pepper...patio with polymeric sand in the background.

video

Thursday, June 29, 2017

Easy Shrubs

The first time I'd ever heard of a shrub I was trying desperately to decode Smallman Galley's cocktail menu.  In general, the whackier the cocktail, the more I want to try it.  Smallman Galley (a local "chef incubator" has a bar menu filled with whackiness.

I didn't actually even TRY the drink with the shrub in it...just noted it on the menu as I tried to make sense out of ANY of their offerings.

The cocktail in question, "Here and Now" was a solution of "Market Alley" gin, dry curacoa (don't know how to make the little tail on my c), summer berry shrub, and lemon.  The one I tried instead was Vilified.  I found its contents more exotic.  BUT...I noted the term "shrub".  And learned that it was a way of preserving fruit juices/syrups in a vinegar solution.  It sounded kinda gross if we're being honest.
each ingredient less likely than the last

Except, a month or so later, at a Yelp Elite event at Muddy Waters (an amazing local oyster joint (probably they wouldn't appreciate that appellation, but here we are)), Boyd and Blair Vodka gave a two station presentation...1)  Making a shrub, and 2)  Creating a holiday punch from said shrub.  I tried the shrub.  The shrub was delicious.  I took pictures. 
the shrub

the punch

Right then  and there I vowed to make a shrub.  It was easy!  I would make a holiday punch for thanksgiving from the shrub I'd made (I didn't) or maybe Christmas (I didn't).  But the thought was there.  And I did make a shrub that November.  I just...I just kept forgetting to buy cheesecloth to strain it when I was done.

For months that shrub sat in a 32 ounce mason jar in my refrigerator, and two days after I finally pushed the button on my amazon app purchasing cheesecloth, it arrived on my doorstep (on a Sunday...god bless you, Amazon).  I strained.  I invited my sister over later that week.  And we got to work. Drinking.

Okay...

Apparently the idea of the shrub dates back to colonial days.  Seasonal fruit was preserved using vinegar and sugar, jarred and stored until needed/wanted, straining the fruit through cheesecloth left a mildly vinegar-tasting fruit syrup, or shrub.  Mixed with club soda, or carbonated water, you basically have shrub sodas, or drinking vinegars.  Mixed with spirits...you have excellence. 

Boyd and Blair's original recipe (they handed them out on printed cards at the Yelp event) was holiday-esque, it was spicey and wintery and delicious, and although I wanted to replicate it, I was missing some of the fancier ingredients. 
I still have this card in my recipe box.

Couldn't find it on their website, but they have some awesome drink recipes WITH shrubs.
http://boydandblair.com/recipes/

But you can basically make a shrub out of any fruit/vegetable that's juicy.  The more fibrous fruits/vegetables don't work as well.  I loved the idea of strawberries and basil.  I got a package of strawberries and some fresh basil along with unfiltered cider vinegar and some mason jars and a fruit masher and a canning funnel (that delivered months before I realized I needed to place my cheesecloth order).

There are several ways to make shrubs.  Two main ways...hot or cold.  There are several great posts on the merits of each (easily searchable..."how to make a shrub"), but broken down into very basic terms...cold keeps the brightness of the fruit better, hot minimizes the tang of the vinegar better.  Why I use the cold method, however, is because it's suuuuuuuuper easy.  And I'm a single dad raising two kids, one of whom is autistic.  I like things easy.  Easy is my jam.

Okay...Cold method...there are a couple approaches to this as well:

1)  mash fruit, mix/mash with sugar, let sit a few days, add vinegar, mix, let sit a couple weeks.
2)  mash fruit, mix/mash with sugar, add the vinegar, let sit a couple weeks. 

I picked the easier method of...just throw all the shit together and mash it up and then let the vinegar and sugar do its work. (method 2)

If you look at the Boyd and Blair recipe, there are some decimal places there that I thought were too complicated.  I simplified my own version to be...in essence this:

1)  1 1/2 cups of mashed fruit (take a bunch of cut fruit, toss it in the mason jar and mash the shit out of it until it's down to 1 1/2 cups.  Add more fruit until you get 1 1/2 cups mashed.
2)  1 1/2 cups of sugar (I then take the fruit muddler/masher and mash the shit out of the fruit with the sugar until it's all one big syrupy mulch)
3)  1 1/2 cups of unfiltered cider vinegar (or however much room you have left in the 32 oz mason jar)

Easy.  Close the lid, shake all up until the sugar granules are all fully dissolved (if they weren't already) and put it in the fridge.  I labeled my jar with the date since you're supposed to wait a couple weeks.  Every day I'd grab the jar, mix it all around, and put it back in the fridge.  Until...I didn't anymore.  Because it was months before I had cheesecloth.

When I finally had the cheesecloth...I strained the syrupy mashed fruit mix through it into another jar and I had my shrub.  It smelled amazing...strawberries and basil...and yes, a hint of vinegar.


I encourage anyone who wants to try a shrub to start with strawberries and basil.  It's amazing...

My sister and I collected some mixers together and made the following:
1)  Strawberry basil shrub mule (with ginger beer, vodka and a bit of lime juice)
2)  Strawberry basil shrub old fashioned (bitters, bourbon, teaspoon of sugar)
3)  Strawberry basil shrub with rum and lime juice
4)  Strawberry basil shrub margarita (tequila, cointreau, lime) (not pictured below)




They were ALL.  UH.  MAY.  ZING.  Seriously, I would have thought at least one of those things would have sucked a little.  None did.  None sucked.  They kicked ass.  No sucking.  All kicking.

So...I made more...blueberry ginger, cherry, grilled pineapple with jalapeno, and, in honor of Donald Trump...peach mint!  mmmmmpeachmint.  All soooo good.
peach/mint...skins...no skins...no worries!

blueberry ginger

cherry

And then I was at another Yelp Event at Tres Rios where they served a roasted red pepper margarita.  "Nobody else in the city is making this margarita," they said...NOT.  SO.  FAST, Tres Rios...I roasted red peppers and jalapenos...I mashed, I mixed...and right this very minute there is a roasted red pepper/jalapeno shrub aging in my refrigerator waiting for its turn in the margarita merry-go-round.  It smells soooooo good.


It's gotten a bit out of hand, I'm not going to lie.  The other day, Emma tried to put something away in the fridge and she said, "Dad, can we move all your 'special juices' to the basement fridge?  There's no room for food."  And she's...she's sort of right.

I'm taking a brief break from shrub-making and transitioning over the fourth of July holiday to shrub DRINKING.  But there will be more.  So many more.

If you decide to shrub here's the equipment you'll need:

1)  32 oz mason jar
2)  Fruit masher
3)  cheesecloth
4)  canning funnel (optional...but it's less messy)

The recipe is constrained only by your imagination and budget.  Healthy people are drinking unfiltered active yeast vinegars these days, and while I can't speak specifically to any health benefits I'm observing...I did feel pretty amazing after my sister and I finished our cocktails.

Despite the health benefits of the unfiltered cider vinegar, nothing is holding you to it.  Use champagne vinegar, red wine vinegar, balsamic vinegar...whatever you think.  The same is true of the fruit the sugar and any spice you use.  The recipe amounts to:

1)  fruit or vegetable you want to preserve/shrub
2)  spice (optional) you want to mix with it (I recommend basil/mint/jalapeno...it cuts the vinegar smell and taste and if you pick well, pairs really nicely with your fruit)
3)  sugar (this can be any sugar...cane sugar, raw sugar, maple syrup...whatever you think would be a nice mix with the fruit/veggie you selected)
4)  vinegar (again...any vinegar will do, but I highly recommend the unfiltered cider vinegar)

and that's it...1 1/2 cups of mashed fruit veggie of choice with spice of choice, 1 1/2 cups of your sugar of choice, 1 1/2 cups of  your vinegar of choice....mash/mix...refrigerate two weeks, mixing daily.  Strain and mix in cocktails or carbonated water.
mash up your fruit

add sugar

mash it all up

add vinegar

label with the date (if you're forgetful...like me)

refrigerate two weeks, mix every day or so
strain a couple weeks later!  voila!

Experiment with how much you want to use.  With cocktails we basically used 1:1...1 shot of shrub with 1 shot of liquor.  With carbonated water, there weren't any other flavors so 2 shots of shrub made a nice fruity flavorful summer ...shroda (props to Kate for the portmanteau name).
cherry shroda!

Great for summer bbqs.  Kids or adults...

Drink responsibly.

Monday, June 26, 2017

Dance Recital

We also...and I promise...shrubs, but later.  We also had a dance recital.  Dance has been rough this year.  Emma's high school schedule has been more demanding of her time.  Whether it was school work, the play (Cyrano de Bergerac) or the musical (Les Miserables), Emma just always had somewhere to be and something to do, and although people stepped in to give rides to and from where needed...I often felt like I was just sort of being carried along like parental schedule flotsam.

But...we made it.  And Emma and Lily both had their recital and both did great (Lily even went as far as to audibly proclaim "nice job everyone" before being escorted from the stage by her new TSS (who seems very nice).

And just like that...we're here.  We're in that place where kids start narrowing their foci.  Where Emma must also.  Gone are the days of soccer, lacrosse, softball, and dance...trying things out just to try them.  There's no more time.  She has work.  She has schoolwork.  She has dance.  There's not much (if any) room left. 

I'd love to give her opportunities to try new things.  But...if she juggles that ball, another will fall from her grasp.  It's a milestone.  She can't do it all.  Some day she'll probably regret not...trying out for the lacrosse team...or something.  But she can't.  There's no more room.

As it is, I've told her she can pare down her dance schedule, focusing on the dances she loves and leaving those that she...doesn't love...behind. 

Leslie always wanted her to continue with ballet.  Her reasoning was that all the other movements were derived from that sort of basic balletic movement.  And she was probably right.  And I'd love to bounce this decision off her...but I think ballet has to go. I think she'd get it. 

Emma told me, "I'm not going to be a professional dancer," and I agree.  She is a beautiful dancer, emotes in a way that I don't think can be taught...but lacks some of the skills and flexibility of some of her peers.  She'll continue to dance.  She'll get stronger and more skilled.  But...it's not going to be her job.

She loves tap and contemporary...even jazz.  But ballet has been sort of an afterthought for her for years.  And I'm ready to let it go.  Given everything else, I think it makes sense.  She's AMAZING to watch tap.  She can focus on that.  She loves it.  And it's a hobby, basically.  She's getting in shape, part of team, gets to perform...but a hobby.

It's sad that things have to fall out of our schedules, but the demands on these kids' time is incredible.  And she needs time with friends too.  And with her family.








Tuesday, June 20, 2017

I Lied

I told you guys I was going to wax rhapsodic about shrubs, but as I was pulling pictures for the last post, I realized all the shit we haven't talked about that's more important than shrubs (sorry shrubs, but it's true).  Anyway, I lied and I'm sorry, and I'd tell you I'll never lie again, but that would also be a lie, and you see how this kind of stuff can really snowball on you?

Anyway...We had the walk!  It was just after...or maybe before the last post about EEG's and Seizures and stuff.  Not the most recent last post, but the last post before the last post.  The second to last post. I guess that's what they call it.

Anway, we walked, and if you really really feel guilty about not walking (participation was at record lows for the team despite the tshirt kicking significant ass this year) then you can basically catch the whole (almost literally) thing because I Facebook-Lived like...28 minutes of it.  I'm super entertaining.  At least...at least my mom said I am.

Probably you can't link to this if you don't have facebook.  I don't know.  Maybe you can.  Facebook Live: The Walk

Anyway, we had a good day.  Raised some money (though not as much as usual...slackers...) and had a nice walk.
Standing on my tiptoes to appear taller
It's Kenny!  From Kennywood.  I...I think
Finish Line!  Like...like it says in the picture.
Post "race"
Sure...NOW you sleep.

Summer Break

Hi it's me.  Jim.  Jim Walter.  The...guy with the ...hair?  I know, I know, it's been a while.  I've been writing, but the writing I've been doing has been for Healthline and not my blog.

So...to update you.  When last we left our hero, she had a seizure at school and I took her to the ER and stuff.  And since then I've learned...nothing.

I scheduled an EEG.  This was done...jesus...a month ago maybe?  Probably.  I've heard nothing.  I scheduled an MRI.  That's Friday.  Not looking forward to sedated Lily.  It's hard to watch.  But that's Friday.  Then all the doctor visits...geneticists, neurologists, pediatricians, oh my!

But they're so far out that I'm probably going to call someone and ask them to tell me what, if anything, they found prior to the appointments (I think I'm in August for the geneticist).

School is out and Emma got her first job.  It's fucking adorable if we're being honest.  It's a huge pain in the ass getting her there, but my folks have been helping, and friends.  So far so good.  She's been making it to work on time whether it's me sending her or not.  She hasn't gotten paid yet.  I'll be curious what her reaction is.  Honestly I think she'll just be excited.  She's a very laid back kid.  If it had been me, I'd have multiplied hours by rate and been crestfallen when I saw the damage income tax does...but Emma?  She probably doesn't have any idea how many hours she's worked.  Or how much to expect.  She'll just be like..."money!" and run off to the mall to spend it immediately.


Lily is still sleeping like shit.  I'm in phase two of the "fix lily's sleep" plan.  I talked to her doc, and he sent me a great list.  In fact...in fact, let me grab that list and post it for you folks who have kids who struggle with sleep.  He has some great bullet points and pros/cons of different fixes.  Some of you even posted some of the stuff he's got marked on the list as possible things to try.  From his email:

    The options for supporting sleep in children have greatly lessened over the last few years:
  1. Atarax / hydoxyzine-basic science indicates risk of arrhythmia if used nightly.
  2. Benadryl / diphenhydramine-risk of dementia in elderly…risk of neurocognitive dysfunction in children.
  3. Clonidine and Tenex: only last 4 hours, causing awakening. She did poorly on Tenex in past.
  4. Risperidone-may be tried in the next week, must consider side effects of atypical antipsychotic agents.
  5. Remeron-not recommended for young adolescents
  6. Trazadone-may be tried in the next week at 25 mg orally q evening, but many side effects….some overlapping atypical antipsychotic agents.
Plan:
  1. 5-HTP supports serotonin increase, and a 25 mg capsule opened into food ½ hour before bed may be helpful. Kirkman, Thorne, Pure Encapsulations, Metagenics are good companies for this product. Occasional paradoxical nighttime awakening occurs….but worth a try and otherwise benign.
  2. Assure that all nutrients but Magnesium are given in the am or afternoon, and none after 6 pm, as many are activating. Try moving Magnesium 180 mg / ½ tsp to ½ hour before bedtime, as it is often calming.
  3. Turn off any nightlight in the room, if tolerated.
  4. Deep pressure massage of back for 10 minutes prior to bedtime can sometimes increase relaxation (no training necessary).
  5. Decrease any food that she craves greatly, as an IgG antibody to that food can come off the brain in the middle of the night, causing night awakening. This often happen with dairy, wheat, and soy products.
  6. Emerging clinical experience supports the use of a form of essential oil, lavender, a few drops rubbed into the feet, as helpful.
  7. Stop Melatonin SR (which usually works 8 hours, not 4 hours, for my patients). When she awakens in the middle of the night before 4 amMelatonin 1 mg orally can be given.
  8. If no improvement after a week of the above, we will discuss the Risperidone and Trazodone alternatives.
This is one doctor's opinion, and please don't take my list and run with it, because...results may vary...but if you're struggling with your own sleep issues, or your child is...these would be some great talking points to bring up with YOUR doc.

So where I'm at is...I stopped the sustained release melatonin.  I started giving her 1.5 mg (half a 3 mg tablet) when she wakes up in the middle of the night.  I started giving her 5-HTP (though they only sell 100 mg capsules, so it's pretty dicey about exactly how much she's getting.  other people sell 50 mg, but are like twice as much as the kirkman capsules).  I started giving her the Mg supplements at night.  I started turning off her nightlight when I first get her to sleep.

Annnnnnnd...I don't really know that I've seen any improvement.  Last night she got up at 2 a.m.  By the time I staggered back to bed it was 3:30.  I KNOW I didn't live through anything close to 1 1/2 hours of struggle, so I must have dozed off at some point, but it's hard getting that mid morning wakeup interruption and then dragging ass out of bed at 5:30. 

This is still a work in progress.  

Lily's aide is working out well so far.  SO much less stress worrying about parents and in-laws driving 40 minutes to watch her every day so I can complete my work day.  There's still the issue of Emma's work schedule, which Lily's aide doesn't support, but so far that has been workable.

I've been cooking more.  Shrubs, pies, ceviche, bbq jackfruit for fucksake!, and I enjoy it.  My niche is typically...what can I make ahead and get leftovers of, and I'll probably post a recipe or two in the near future.  Next blog I'll wax poetic about shrubs.  Not the kind Sean Spicer hides behind...the fruit/vegetable syrup that can be used in cocktails or sodas.  They're awesome.
Grilled pineapple and jalapeno shrub margarita
That's it for now.  More later.  I won't promise I'll write more here...because I always seem to go in fits and starts, but I feel like writing more, so it's certainly more likely.

Thursday, April 27, 2017

Rough Patch

Lots to unpack here.  Where to start...

Lily, always a good sleeper, if somewhat more of an early bird than daddy might like, is not a good sleeper anymore.

She goes through these little...streaks or trends or phases, so in the past, when she hasn't been sleeping I sort of chalk it up to a phase, or maybe she's coming down with something.  But at this point...it's been since daylight savings time last October ...I think I'm ready to say, "she's not a good sleeper".
It could be worse of course.  Autism/ADHD and no sleep seem to go hand in hand a lot, and I've certainly had a nice long run of "in bed at 8 and up at 6".  Now we're at "in bed at 9 and up at 3".  That's painful for a guy who can't get to sleep much earlier than 11 on the best of days and usually gets to bed around midnight only to wake up at 5:30 to start my work day.

So to go to bed at 11...or midnight...then wake up at three for the day is...draining.  I wrote a little about what it does to me when I'm sleep deprived >>here<<, but in a nutshell...the patience I need..NEED to deal with some of Lily's challenging behaviors is not in abundance.  Or Emma, honestly.  I snapped at her yesterday for something that I ordinarily would have just laughed about.

So that's the first thing.  I need to find a "solution" to this problem.  I use a monitor in Lily's room.  That way I can tell when she wakes up and get her on the potty. 

I could turn off the monitor.  Except she has been getting out of bed and coming down the hall, or even the stairs lately.  And she is not the best at stairs.  Especially if she's wearing slippery socks on the hard wood steps.

I could install a gate at the top of the stairs.  That might be okay.  I could turn off the monitor without worrying about Lily taking a spill down the stairs.

I could see if there's a sleep aid Lily could take to keep her asleep.  Getting her to sleep is no big deal...KEEPING her asleep is what I need.  Would dosing her with melatonin when she wakes up help?  Maybe.  Not sure.  But melatonin has been pretty ineffective with her in the past.

I could do nothing and hope this...6 month phase passes.

I don't know.
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Help at home.  I got approval from my insurance company for a home health aide for Lily.  She started a week ago.  I was approved at the end of January, but it's taken this long to find a resource.  Now that she's started, it relieves a lot of the burden from grandparents having to drive 40 minutes one way to watch her until I can get home from work.  This is an amazing benefit, and I'm slowly getting comfortable with it.  Right now it still seems very new and I'm still stressed out about it, but hopefully I'll mellow out with time.

--------------------------------------

Lily is growing up.  I won't go into the personals, but she's growing up and I have a plan, and that's basically all I guess anyone needs to know.  Not that anyone NEEDS to know it, but if you were like...what the hell is Jim going to do when Lily goes through puberty...Jim has a plan.

If you don't have a plan, feel free to reach out to me.  I like my plan.  People that need to know stuff know stuff.  And they know what to do.  And I know what to do.  And if you don't know what to do...you should figure that shit out sooner rather than later.

Was any/all of that cryptic enough?  Anyway, if you have a little girl like Lily, and you're considering your options, I'd be happy to discuss it with you "off blog".

--------------------------------------

It bothers me that I'm never sure if my little dashed lines are all the same length.

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Lily had a couple seizures at school the day before yesterday.  We've long suspected seizure-like activity with Lily, but up until Tuesday nobody had ever really witnessed them who had a lot of experience.  The school called me and they sent her to Children's hospital ER in a "princess carriage".  I drove to meet her there.

We learned nothing.  Lily had previously done a sleep-deprived EEG that was inconclusive, and we elected not to do a 24 hour EEG followed by an ambulatory EEG because, to be honest, the first one was so fucking traumatizing that I didn't want to put her through it.  That was...years ago.  >>HERE<<.

In fact...5 and a half years ago.  So I'm doing it again.  I got a script for an MRI and one for an EEG and I'll be doing it this time without Leslie's support, but Lily is in a LOT better place for this kind of thing now.  She'll still have to be sedated for the MRI, which isn't my favorite, but there's is absolutely no way she'll sit still to have her brain scanned for a half hour.

So the "good" thing is someone saw it, and we checked it out and she seemed fine.  And the other "good thing" is that now I can use the scripts to get a better look so that IF something is there...I can get her help for it.
this Lil patient is being so patient

I was at the ER from 1:00-7:00 on Tuesday to get those two prescriptions and that medical buy-in that she was "fine".  And Lily was somewhat stir-crazy, but she was good all things considered (having not really eaten since breakfast, they wouldn't let her eat until she had bloodwork done I think that finished up around 5.  So...that was a bit painful constantly telling her "just a little bit longer".

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Recap:  Lily isn't sleeping much, and is becoming a woman.  In addition, she seems to have had a couple seizures at school.  I need help, but got some for after school if I can just figure out a way to get more sleep.  Doc says there could be a link between her seizure and her coming of age, and that could be scary, but I'm following up.

There!
Unpacked.  For now.