Tuesday, September 30, 2014

Feeling Poorly.....

No headaches for a couple of days is good news.  Having a cold and a belly ache is not so much good news.

Babygirl's last headache was Thursday, I think. The new medication helped, and that was nice.  She woke up Friday so stuffy she couldn't breathe and missed school anyway.  Saturday was a cough-and-sneeze fest, Sunday a bit better.  She went to school yesterday and left early with abdominal pain.  By dinner time she was throwing up, and the medications were problematic, but we managed.  This morning her stomach still hurts and she's coughing.  The meds are in, her temp is 99.2, and I feel like I'm sitting on a ticking time bomb.

Hubby isn't working today, so he can keep an eye on her.



Monday, September 29, 2014


Babygirl hasn't been the only one with struggles.  Hubby's had back problems for years.  He's always been a hard worker, and always worked hard jobs.  Last year when he had his appendicitis, the emergency room doctor asked him, "What do you take for your back problems?"  It seemed like an odd question for a guy groaning on a gurney with a bellyache, but apparently the CT scan note not only his diseased appendix, but the severe arthritis in his spine. 

From then until early this past summer the back pain went from bearable to intolerable.  A visit to the family doc resulted in a visit to a neurosurgeon.  His news was less than hopeful.  Hubby does, indeed, need back surgery - someday.  The arthritis is putting pressure on the nerves to his legs, and eventually that pressure will need to be relieved or his legs will weaken.  But that surgery will do nothing to relieve the pain in his back. 

So....Monday evening we returned to the doctor for the first of what will likely be several epidural injections.  It was, from my perspective, a spectacular success.  Hubby walked to the car, sat down and closed the door - without having to manually lift his leg in and then spend a few more minutes struggling to reach the door handle.  He's been able to walk, exercise and work with FAR less pain. 

I don't know how long it will last.  But it's been wonderful to see.


Saturday, September 27, 2014

Proud Moments......

Curlygirl finished her cosmetology program last fall, but her school held graduation for all its graduates from all programs for the entire year last night.  I was please and proud to see her walk for her diploma, and even more pleased an proud that she got an honor roll cord and certificate! 

It's very nice to switch to tears of joy for a change!


Thursday, September 25, 2014

Headache Regress.....

I'm beginning to feel as if we are rewinding the fall of 2012.  Babygirl's headaches are merciless. 

Tuesday I called Neurology again to report a couple of things:  1) In the 11 days since they said they would check with Nephrology, they hadn't - but I had, and the new medication had been approved. 2) That on the second and third day of the steroids Babygirl was doing great, but since then she was having headaches at least every other day, including weekends, and is now back to daily. 3) In the 8 days since I had requested to speak to an office manager, I had yet to receive a call back.

The young lady on the phone was fairly sure she had given me the manager's name and number.  I asked her name, and she wasn't even the young lady I'd spoken to (lucky for her LOL) 8 days earlier, but she did go hunt down the manager for me and we had a lovely chat.  The office manager began by apologizing for not returning my call, and admitting that THAT, at least, was entirely her fault.  I outlined my concerns:  No one called me to tell me they were doing nothing and I had to ask for help from the on-call doctor, which delayed Babygirl's treatment, and her front desk staff told me (in a sense) how lucky I was to get a call back at all on a Friday afternoon.  The office manager agreed that this was not handled at all well from either perspective but did tell me that I had been sent an email about it all (!).  (I don't really check my email much - I later searched among 266 emails and found one with no title that I would have assumed was another Ethiopian Lottery offer.  It was a cc telling a nurse that they would have to ask nephrology about the new medication - nothing AT ALL about the ones that didn't get phoned in, and nothing addressed specifically to me except that the nurse was to ask whether or not Babygirl takes her allergy medication every day or not). 

The nurse called me back and asked all the same questions from the week before:  Has she had IV treatment, how long has she had the headaches, what else has been tried....." Ugh.  I updated her on the week.  Gave her the dates of current treatment and headache pattern.  Lists of what she's taken.  Noted that she actually called from school because she needed a ride home because of a headache (first time in two years). 

Another call.  Same story.  But I'm getting better at this.  "I know you have to discuss this with the doctor, but here is what you need to ask:  Can we start the triptans to treat the headaches?  Our insurance for sure pays for Imitrex.  And, what are we changing to prevent them?"

So the triptans have been started.  Prevention is being re-evaluated.  If the triptans don't work, we will be going in for nerve blocks to break the cycle, and then Botox.

Going to check the emergency bag contents.


Saturday, September 20, 2014

The Unmistakable Scent.....

As I was leaving the office the other evening I caught a whiff of it.  It isn't something at all definable, and it is so very, very ephemeral;  but there is no mistaking it once you've learned what it means.  It's the smell of Fall.

In writing letters to our Compassion children, I find myself regularly trying to describe things that they never have seen.  Snow and fall foliage are first among them.  Trying to describe walking on ice to a child who considers 70 degrees a chilly day?  Not a simple thing, and it's easier to describe what we see than what we smell.

Smell is embedded in our memories in a special way.  One cannot describe the smell of skunk, but has no need to do so to one who has already made its acquaintance.


As soon as I said it, all of you who know the smell smelled it in your heads.  It's the forewarning of frost on a warm, clear evening; a foretaste of fallen leaves while surrounded by green; and some yet-to-be-put-into-words breath of the shortening days.

The next morning I pulled out a sweater.  There is no point in arguing that fall didn't really start until today.


Thursday, September 18, 2014

Headache Progress...

Babygirl started a run of high-dose steroids with a taper on Saturday. By Sunday she was feeling very well, and Monday and Tuesday she caught up on things at school.  The missed days at school gave her advisor an idea of why I was so proactive with her the first week.  She has eliminated one of Babygirl's unwanted elective classes to give her a daily study hall at the end of the day.  Her math teacher is meeting with her at lunchtime to help her.  Things appear to be progressing there.

Less encouraging was the headache that she had on Wednesday, while still on the steroid taper.  I took her for her routine kidney blood work on Monday morning, and when the nurse called me with the results in the afternoon, I asked about whether or not she had heard from neurology about the need for a medication change.  She checked the chart and told me there was no message from Neuro. 

I called Neurology on Monday and spoke to the receptionist. I told her that I wanted to speak to someone about: 1) The fact that they said they were going to phone in medications and didn't, and 2) They didn't call me to tell me that they weren't going to do it.  After some back-and-forth, and my usual "Look, I know you aren't the person responsible or at fault but I'd like to talk to THAT person" she informed me (politely and without a trace of malice) that no one was likely responsible or at fault.  After all, I had called Friday at nearly 1 PM and they had returned my call on the same day!  Calls that late frequently aren't returned until Monday!

I don't know about you, but when your kid is suffering, and someone tells you something like that, what you hear is:  "We don't give a flying rats arse about what you and your kid are going through on a Friday. Next time pick a better day for her to get sick, you moron."

At this point I asked for her name, and asked to speak to her manager.  The manager was 'in a meeting' so I left a message for him/her to please call me.  It's Thursday morning now and I've heard nothing.  Oh, and I've heard nothing from Neurology about what they plan to do for Babygirl's headaches.  I left a message with Nephrology late yesterday to let me know if Neuro has gotten around to chatting with them yet.

So, to sum up:  Out of 12 days of school so far, Babygirl has missed four, roughly par for the course for her compared to last year.  Yippee. I have some more phone calls to make.


Wednesday, September 17, 2014

Casual Obscenities.....

As I was walking to my car last night I could hear loud male braggadocio coming from around the corner ahead.  One voice clearly belonged to the leader, and he was proudly proclaiming, "You are my Niggah!" to the less than pleased protests of the rest.  It's a common enough phrase among young black men, and I heard it at home once in a while among the foster kids (which I quickly forbade - the word feels utterly inappropriate to me and appears alarmingly dangerous for a white child to be throwing around, frankly). 

I cleared the corner and was slightly surprised by three twenty-something white men, dressed in 'wife beaters', low pants and visible boxers.  A few paces behind, but clearly part of the group, was a well-groomed, neatly dressed young white woman. 

As I entered the car, the 'leader' of this group of young men began addressing this young woman.  "Hey, My Bitch!" etc.  It was clearly part of an ongoing argument.

Here's the polite translation:

"Yo! My Female Dog! Bring your Rude Female Parts over here NOW and apply oral suction to my Big Richard" (Pointing with both hands in case there was any doubt about where this body part was located). 

She turned around and began walking the other way.

"Yo!  Mother Dog!  The Mother Dog I OWN!  If you don't like it I can find some other Female Dog to force intercourse upon!"

She crosses the street, and he and his moronic minions follow.  By this point I am in my car, doors locked, and ready to U-turn toward home.  I'm tempted to run them down.  I refrain.  In executing my turn I lose sight of the girl, and I'm more than a little concerned about her.  I can see where the men are going and realize that she has gone up a side street.  I consider options, drive ahead and circle the block, coming back around as they are coming up the side street.  By this time, she has crossed THAT street to avoid them and is headed back for the main drag.  The Big Chief Idiot has circled to get in front of her, and the minions are some way behind. 

I roll down my windows, express my opinion of the men's behavior, concern for her safety, and offer her a ride.

She's a little startled.  And clearly puzzled.  She smiled, "I'm safe, don't worry."  And she walked toward her harasser.

Sigh.  I know I'm of a different generation, and likely a different socioeconomic class. And  I freely admit that I cuss, considerably more than I should.  But if I thought ANY young man was EVER speaking to one of my daughters in this fashion he'd need to have his Big Richard reconfigured in an ER when I was done with him.  The obscenities weren't the real problem:  It was the sense of disrespectful ownership.  And the fact that she felt 'safe' in that environment made me want to weep.


Monday, September 15, 2014


The inside of my brain is a noisy place.  Thoughts tumble, roll, jumble, jump, bounce, leap, list and tangle all to a vibrant musical sound track that varies from tent revival to Woodstock and Bach again, all backed up by a blow-by-blow vocal narrator who keeps me up to speed on what's at the top of the lineup.  You don't want to know what's in there during the Sunday sermon.  Waking up to silence is a rare, nay, unheard of, thing.

One of the problems I had during the bad migraine period a few years ago was that I lost my soundtrack.  The music simply disappeared for a time, and worse still, I lost my ability to HEAR music correctly.  The hearing came back, the soundtrack resumed intermittently, but at no time did the thoughts or the narrator ever really quiet down.

The other morning I awoke to silence.  Perfectly peaceful internal quiet.  Echoes of it are still in my head.

Maybe this is normal for everybody else, and you all have no idea what I am talking about.  But I've been trying for days to find a way to put it into words and I really can't, because nothing is really ever naturally silent, is it? 

Here's the best I can do:  After spending the day at Knoeble's amusement park with  laughing kids, popcorn, scolding parents, musical rides, footsteps, peppers and onions, motors, game hucksters, popping corn, cotton candy,  screaming, coaster rattling, splashing, eu de hot dog, crying, flashing lights, colors and endless movement you load everybody into the car and drive off into the dark.  One by one they fall asleep.  The radio is off.  There is no traffic.  And you arrive home, crawl into bed and have that last nanosecond of consciousness before you fall asleep.  THAT silence. 
It was that silent inside my head all day.  I went to the gym.  I rode 4 miles on a bike with no narration, swam 20 laps with no storyline or music, went to work, came home.  I reacted to all around me and did what I always do but in a background of such quiet that by the end of the day it felt almost eerie.

It is still pretty quiet in here.  The music is set on low, the narrator is silent, and the thoughts, generally calm.  I'm not sure if I like it or not. 


Sunday, September 14, 2014

Back to Hell.....

I took off work the first day of school.  There is always paperwork. She needs to have medication dropped off at the nurse's.  And this is a new school, so the nurse doesn't know her.  I know better by this time than to show up at the nurse's office on the first day right when the doors open (let the moms of the diabetic kids have that delightful moment.  They need to be there.  Babygirl isn't going to have a crisis in the first ten minutes).  I let the chaos settle and came in around 10:30 to introduce myself. 

The nurse at the high school is a very nice lady.  She fired off emails to all of Babygirl's teachers to let them know they need to pay attention to her IEP and send her down if she has a headache.  She fired a note to the gym/PE teachers regarding her restrictions and her frequent absences.  It was a productive use of time.  Then I moved on to the guidance office.

The guidance office was a mob scene.  Apparently this is where you go when your schedule is not what you hoped for.  There were at least 15 students waiting, three ahead of me for Babygirl's counselor.  Then I had a thought:  "My daughter has an IEP - perhaps I need to speak to the special education team?"  Bingo.  I was sent to a different office ("Just go upstairs and through the breezeway." Ummmm, really?  Well, I found it eventually LOL).  I spent some time with the lovely folks up there going over what was in her plan, the general unpredictability of her disability, and the need for us to be aggressive about keeping her up on things this year since every single class matters for credit. 

The next day I got a call from her assigned (OhDearLord they have a word for it - last year it was 'consultant teacher' but this year it's something else) ADVISOR (that's it!) and discussed it all again with her. Babygirl's schedule is jam-packed, with absolutely no study halls or room for assistance if she needs it, and she has THREE electives, two of which she didn't select and doesn't like. 

The first week went well enough. Babygirl attended Wednesday (first day) through Tuesday, coming home headachy but functioning.  This past Wednesday she awoke with a can't-lift-my-head-from-the-pillow horror that hadn't abated despite pain medications by Friday morning.

I called the school and left a message for her advisor, asking what the plan would be.  According to her IEP, she should have a home tutor at this point for nearly 3 hours already. 

A few hours later she called and said, "I noticed Babygirl's been missing."  Apparently she didn't get my message - it's a general line at the special education office  Previous teachers have used cell phones.  She said she'd collect homework and drop it off at home.  Um, okay, I guess.  She left it on the porch.  We clearly need to work on this.  I guess being proactive about things only gets you so far.

I also called neurology.  A severe headache for this length of time is not her norm. The person taking the message asks me for a list of what she is taking for headache.  "Tramadol."  "Oh, okay!" "Hold on! That's not all!  Tylenol. Lisinopril.  Keppra."  "All for the headache!??" "Yes."  I got a call back, and the nurse outlined a plan:  She'd talk to the doctor, but they'd likely call in some steroids to break the headache, a triptan to treat the headaches in the future (common treatment that hasn't been done for Babygirl so far) and an increased supply of one of the prevention medication so we could continue ramping that up.  I called Hubby to alert him to go to the pharmacy.  Keep in mind that I fit all of this in while I was working - in the middle of a computer crash, no less.

At ten of six, I called Hubby to see if he had picked up the meds.  He'd gone, but there WERE NO MEDS.  I called the on-call doctor, drove home, sobbed on Hubby's shoulder, called AGAIN 45 minutes later (they had our area code wrong!) and got a call back in five minutes.  She checked the computer. 

Neurology couldn't prescribe a triptan without consulting with nephrology (no surprise.  And no real problem for today - it's not going to work on a three-day-old headache anyway. Trust me. I know).  There's no mention of the ramp-up supplies, and I forget to even ask.  The steroids?  You know, the stuff that will actually STOP the damned headache?? Not mentioned either. 

This nice young doctor is not the person who screwed this up.  I know this.  But I want to lunge through the phone and take her by the throat.  My kid is suffering, and dammit!  I am suffering with her.  They should have CALLED me.  They should have said, hey, screw you, you're on your own with this - or SOMETHING.  I want to tell her this. Loudly, and with multiple obscenities.  I refrain. 

We discuss options.  She agrees to phone in the steroids.  Our affordable pharmacy has long closed, so we select a more expensive alternative.

While we are waiting for the medication to be filled, Babygirl comes downstairs for dinner.  She can't eat, and she sees the pile of homework that her teacher dropped off and suddenly it's just all too much.  We left the table together and I held her in my arms and we both cried and cried. And then cried some more.



Thursday, September 4, 2014

Old Photos.....

From the moment Squeaker arrived, I knew he looked just like his mom.  His squishy little nose, full cheeks and loose curls are her to a 'T'.  But we don't have any pictures of her in babyhood.  She came to us at age four, and although Squeaker is only two, he is the same size (or possibly somewhat bigger) that she was then. 

A couple of weeks ago Curlygirl spent a lot of time looking through old photo albums (you remember those, right? Made out of paper and full of printed pictures, always available in one physical location to look at?).  And suddenly, it clicked.

She showed a picture to the Squeakmeister.  "Who is this?  Is this you?"  "Ah yes!" 

If I didn't know better, I wouldn't be able to argue with him.  Except for the tan, they are nearly identical.  It's even more noticeable when she is laughing.

  Photo: For everyone who thinks my son is his fathers twin.... Guess who's in the pink on the left? Yeah that's right my spittin image! Lol :) <3#twins#mylife#babyboy#mommy#son#throwbacknothursday#myheart#muah󾌬󾌬󾬕󾬓󾬖󾬔❤️

Adoption is a wonderful way to grow a family.  But for the adoptee, there are always questions and mysteries.  Why?  What happened?  Was it me?  What was the matter with them?? And:  Who do I look like? 

Certainly Curlygirl doesn't look like us.  Giving birth gave her the first biological relative she can remember meeting, and the first relative who looks like her.  It's a little backwards, but it's a connection that the rest of us simply take as granted every day.

She's always, more than anything else, wanted to be a mom.  She had a doll that she carried everywhere for more than a year, including back and forth to daycare, honing her budding mom-skills.  And even then, when she was only eight, I wondered if she was searching for that missing connection somehow.  I don't know.  I don't think she knows.

All I know is that she is an awesome, awesome mom.  Having Squeaker completed something in her, and she is truly content.


Wednesday, September 3, 2014

In Praise of Knoebels......

Everyone who knows me knows that I am an amusement park junkie.  Disney is my favorite (in descending order of preference:  Magic Kingdom, Hollywood Studios, Epcot, Animal Kingdom).  The more well-known parks nearest us are Dorney, Darien Lake, and Hershey.  The locals, though, talk a lot about Sylvan Beach and Knoebels. 

Knoebels (oddly, the k is NOT silent, making this a three-syllable word) is touted as a family-friendly place that is ideal for those with young children.  Many people who live around here speak of it as the place 'we always went when we were kids.'  As a coaster nut, I couldn't see the appeal when I looked at it online.  As a Grandma, I took a second look.

Hubby has long reached the point where trying to stuff his aching back and knee into some tight-fitting ride so he can feel like he wants to barf just doesn't work for him.  And going to a standard amusement park stinks - he pays fifty bucks to walk through the gate and then feels guilty about spending more on a soda or a game. 

And me?  I'm pretty much over the Festival Prices that come with these parks.  Dorney has a Subway restaurant, where a "$5 Footlong" goes for $12.  They check your backpack for food and drink and ask you to throw it out or keep it conveniently located in your car.  Oh, and your car?  $15 to park.

So, hearing that Knoebels isn't like any other park, we decide to chance a change.  We pack up the kids and the grands and head out.

One thing we learned on our long vacation was that our GPS has a vivid sense of the absurd.  And it hates us.  I'm pretty sure that wherever this beautiful bridge is, it is NOT on the shortest or most direct rout to Knoebels:

It was a nice detour.  And I leave obsessively early for these things.  We still arrived before the park was officially open.
The 'nice' part of Knoebels started when we pulled in.  There's no parking charge.  We unloaded and walked into the park.  There's no actual entrance - you can come in from almost any direction - the road, the campground, the parking lot - anywhere.  We rented a stroller at half of what it costs to do so at Dorney park, and started to explore the park before the rides opened up.  It's fairly flat, very shady, clean and well-maintained.  Tickets?  Well, you get to pick.  People over 4 feet tall can buy wristbands for unlimited rides that include roller coasters ($44), or for less, excludes them.  People under 4 feet can get wristbands also, for half the adult cost. If you buy them ahead of time online they are all $4 less.  People who don't plan to ride don't need to buy anything.  People who might ride just a little can buy book of tickets and pay-as-you-go.  I paid for bands for kids and grands and bought a $20 book of tickets (on sale for $16 - seriously) for Hubby and I.  Before the day was over I bought another $10 (for $8, that's how they roll here). The pool and waterslides are a separate (reasonable) charge that we did not take advantage of.
We set out to play.  Some disappeared deep into the park to try the two big wooden coasters.  Some hit some intermediate rides, like swings and tilt-a-whirls. I spent a good part of my day in a lovely shaded corner with three hyperactive little people.

We got the full price of the wristbands out of these little biplanes even though neither of the kids ever figured out that if you PULLED the joystick instead of just rattling it around the plane would actually fly.

Squeaker loved the ball pit.

 Boo can apparently walk on them.  She crossed from one side to the other faster than Squeaker could think about it.
Sunshine wasn't so sure. She sank in over her head and was over it.  Done.
Backwards, you say?  Well, okay, as long as I can shoot somebody.
 Squeak'sDaddy, DoodleBug and I went on a 148-foot-high drop ride.  Squeak'sDaddy is no fan of heights, but he (oddly) likes the drop sensation, so he was game to try it.  Most of these rides lift you up, suspend you for a few looooong seconds, and then drop you.  Not this one.  We went up.  Even with the Ferris wheel.  Eye-to-eye with the coaster.  Peering down into the water slides. Way, WAY above the coaster. And the very instant we hit the apex of the lift, we dropped.  Well, apparently those few seconds at the top are necessary for Squeak'sDaddy to collect himself and prepare for the bottom to fall out.  When we got to the bottom (9.8 meters/second squared later), he covered his face, went from dead pale to beet read and literally wept.  They had to hold up the ride for a minute so he could collect himself and get off.  Well, and to give me time to stop laughing at him.  I could barely move, seriously.  Made me cry too, now that I think of it.  DoodleBug and I rode it again.  And again.  And a couple more times.  It's where I used up most of my tickets I think.

I rode the Phoenix with Babygirl.  It was one of the best ever.  It wasn't jarring, like many wooden coasters, and it lifted me out of my seat half a dozen times before it was done.  It may have been the best wooden coaster I have ever been on, bar the Comet.  I was pretty sure DoodleBug was going to achieve full lift-off right in front of me, which added a new dimension of terror to the process.

Hubby snuck off an played a few games here and there.  He and I dumped the kids and rode the sky ride, which had amazing views and did not set off his fear of heights.

Our original plan for this trip was to go down for 3 days and camp, spending one day in the park. My Dad's unexpected arrival (and somewhat longer than expected stay) made that impractical, so we decided to just eat in the park and not worry about packing food, since we weren't sure of the park's rules about that anyway.  It turns out that Knoebels doesn't care what you do.  They want you to come and have a good time.  If you buy food, great.  If you bring food, awesome.  They have picnic pavilions complete with gas grills.  They have a birthday pavilion.  There are hundreds of picnic tables - all well-shaded, clean and welcoming.  They request that you do not have alcohol in the park. 

All-in-all it was a great day.  Perfect weather, good company, limited toddler tantrums (although I can't quite recall when Boo landed her sneaker on my leg - I have the perfect bottom-of-the-shoe print imbedded in the bruise).  Everybody felt like this all day:

And everybody felt like this going home:

And you can't do better than that.