Red Eye Evening

For Halloween tonight my son was a silver ninja.   My husband was a black ninja and my daughter was a candy fairy.   I was a not-quite-yet zombie.  I had been bitten, or blood spatter got in my mouth, or I got blood from another zombie in an open wound or any countless other ways it’s propertied you can become infected.   Regardless, my time was short.  

Because I knew I was going to turn, I dedicated my remaining hours to creating an “antidote” for our neighbors in the hopes the neighborhood could be saved.    I put the antidote (along with some alcohol) in centrifuge test tubes and shared them with all the adults who stopped by our house tonight to trick-or-treat.  

I was friendly.  I was convivial.   I was downright happy.   I told people I was doomed—that any moment I might turn and try to eat their brains, but for now, I’d never felt better.   Oh, and they’d better have one (or two) of these antidotes.

I also had some contact lenses to make my eyes red.   I’ve never worn cosmetic contacts before, but they were comfortable and I forgot they were in shortly after inserting them.  They were fun to wear because the look was so unexpected.  I had a lot of people comment on them, particularly my son wh said, “mom, don’t look at me with your red eyes!”

The Big Boy Update:  Nana and Papa were going to wear surprise costumes tonight for Halloween.   Last evening my son was bothering Nana, saying he wanted to know what they were going to be.   She said she wouldn’t tell him but she would give him one small hint.   She said, “I’m going to jingle.”  He immediately said, “ah, you’re going to be a jester.”   She never mentioned to any of us their costumes.   How did he know?   What connection did he make?   Nana was amazed.

The Tiny Girl Chronicles:  My daughter said to me the other day, “if you say that one more time…”   I was in the middle of being firm with her but when she said that I couldn’t help but laugh.

Fitness Update:  We ran a half-marathon distance run today with sprints every so often.   There was some sort of snafu with the interval training app I use in my phone that caused the intervals of low and high-intensity to not be announced out loud.   We gave up on the app and decided just to call out sprints of varying times/distances when we thought it was time for one.   We ran the half-marathon distance at 10:30 minute miles, which is a significant improvement for us.   If we keep up the pace running for a few more weeks before the marathon, hopefully we’ll have no troubles meeting the time cutoff for the Las Vegas Rock and Roll Marathon.

Cow Girl

We went to “Movie Night” at a friend’s house tonight.   My children, husband and I had a great time. We left early because both children were tired and we had plans to go to a costume party once they were asleep.  

On the way home I tried to figure out what I was going to go as.   I had a costume for Halloween proper, but that costume involved a set up at our front door and wouldn’t make sense alone.   I fretted and then I figured out I could go as a cow girl.

I had boots a friend had given me.   I had a hat I wore once each year.  I could put on jeans and a leather belt and I could tuck in a button-down shirt.   I could also affect an attitude and a swagger.   I was going to be a cow girl.

I’m glad we went to the party.   We saw some of our neighbors and had fun conversations about the holiday tomorrow and the costumes we were wearing.    Tomorrow, I’m going to be infected.   Don’t worry though, I’ll be handing out “antidotes” in alcohol form to the adults during trick or treat time.

The Big Boy Update:  My son was struggling with control issues this morning.   He didn’t want the vitamin on his plate.  He wanted it back in the pantry and then brought out to him.   My husband picked up the vitamin and did an “invisible” returning of the vitamin to the pantry and back to my son’s plate.   He was having none of it though.   He grabbed the vitamin and said angrily, “I’m gonna do it the old fashioned way” and headed to the pantry to return his vitamin to the bottle.

The Tiny Girl Chronicles:  The corners of my daughter’s lips are cracked.   This afternoon she said to me, “mom, can you give me the chop sticks?”  It took a bit to figure out she was asking for ‘Chapstick’.

Fitness Update:  I ran two miles today in a fun way.  I was substituting at school and I’d heard it was eighteen laps around the school yard for one mile of distance.   I turned on the running app and told the after school children to join me if they wanted to run a mile.   We had fun counting laps and figuring out how close we were to a mile.  I had several students make the mile with me.   I had two other students ask if we could run again a short while later.   The three of us ran a second mile.   It turns out my watch and phone think fifteen laps is a mile instead of eighteen.

First Sleepover

My children had their first sleepover this past weekend.   It was with their good friend, Gavin, who was in town visiting with his family.   His one sister had a birthday party sleepover to attend and his other sister and parents were going to a wedding.   He, however, was available and we were all very excited to have him stay over.

We had fun during the day and sushi for dinner and all three children were excited about the new 3D Mario World and Mario Maker games on the Wii U.   Conveniently enough, the Wii U was in the bonus room where the three of them were going to sleep.    Gavin has his sleeping bag with him but my children didn’t have one themselves…only they did, because I had gotten them “indoor sleeping bags” for lack of a better name because they’re just glorified blankets that zip up.

They were both pretty darned excited about those sleeping bags.   We got them into the room at a reasonably late hour, hoping they would settle down quickly (they did not) and that they would then sleep late (of course they did not.)

But they had a great time.   They weren’t worried in the least that the room was different or they weren’t in their own beds.   In fact, they loved the sleeping bags so much they slept on the floor in their room the next night so they could sleep in them again.  

Thanks to Mimi for letting me give an early present to them as those sleeping bags were from her and Gramps.

The Big Boy Update:  My son carved a pumpkin tonight.   He had selected his own, small pumpkin at the patch we buy them from each year and when he saw my husband carving his, he wanted to be involved.   He described what he wanted the face to look like and my husband drew some samples on a scrap of paper until he understood what my son was looking for (angry with fangs).   Then, my son used the mini saws to help cut out the triangle eyes, nose and help with the jagged mouth and fangs.   The pumpkin is lit now on the porch and looks pretty good for a four-year-old’s work.

The Tiny Girl Chronicles:  The prednisone is at a quarter of what it was initially, but the IV solumedrol steroid and small dose of oral is still having an impact on her weight.   She’s not raging hungry anymore, but she eats well.   She’s gained over four pounds since her eye situation started.   That’s four pounds onto her not quite thirty-pound body in two months.   It’s a lot of weight for her size, but we’re hoping her eyes will benefit from the medication and the weight won’t matter long-term.

Fitness Update:  I did four miles of run/walk/weight running today.   I wonder if I’ll be as sore tomorrow as I was last time I ran with weights?

The “Other People’s Children” Quote

I was at a parenting support group meeting tonight.   This is done a few times during the school year at our school.   It’s hosted by one of the parent families and attended by one or more staff/teachers.   Tonight’s event was hosted by friends of ours who live in our neighborhood.    The event was well-attended and our hosts were gracious, as always in their food, wine and hospitality.

I had failed though.  I hadn’t read the book.   I got there to find out there was no book this time, but a TED talk instead.   And as a bonus, we were going to watch the TED video after some social time before we had our group discussion.   Score!

The video was appropriate to our group in many ways and our discussion was robust.   But one of the comments from a teacher has been present in my mind all night.   She tells the story and says as a preamble that this particular story she’s told countless times.

She was at one of the first teacher support meetings after being hired by our school.   She had made the comment—one I’ve said myself many times—that it’s easy to remain calm when dealing with children in the classroom and yet it’s so challenging to keep your calm when dealing with your own child.    It was at this point a teacher who had been teaching for many years said something she’ll never forget.   She said, “other people’s children aren’t a reflection of you.”

That just about sums it up, explains it all and helps makes me understand in one short sentence.

The Big Boy Update:  He was the bad guy.    At the parenting book club meeting tonight I talked to another mother and mentioned my son talked about her child.   She said her son talks about my son too and how he’s “the bad guy.”   For the longest time my son insisted on other people being the bad guy but apparently he’s not the self-appointed bad guy on the playground—or so her son tells it.

The Tiny Girl Chronicles:  My daughter’s appetite has abated and is back to a relatively normal amount, even though she’s still taking oral steroids daily.   She has gained over four pounds though, which for a thirty-pound child is not a small amount of weight.   She doesn’t seem to mind weighing more though.

Blocked

I had a swallowing problem I talked about a few times here in the past six months.   I noticed over the past year that things were getting stuck when I swallowed.   I had some imaging and a swallow test done and the resulting diagnosis was, “the hardware from your spinal fusions has caused your esophagus to move forward, try not to get things stuck.”  

That was pretty much it.   Apparently, esophagus’s don’t have to be straight.   It’s okay that there is extra tissue in this pill-catching spot in the middle of my neck.   Have you thought about calling it a “feature?”   That’s what they do in the world of software when something is broken but they don’t want to fix it.  

After all of this evaluation work—which was useful in that I found out it wasn’t tumorous or cancerous and there wasn’t a constriction—I discovered my father-in-law had had a similar thing going for years.    Apparently I’m in good company when it comes to throats and swallowing.

Today was the first time I’ve ever had a real issue with it.   I was at our state museum of art.   I was eating in the posh little cafe near the gift shop.   I had a white cloth napkin in my lap and I was eating a very meaty pot pie.    I swallowed a piece of beef and it got stuck.

It didn’t get stuck mildly, it got stuck badly.     This spot where things get stuck is lower than you can make the retching noise and kick it up from the back of your throat.    I swallowed and the food just bounced in my throat.  I hard swallowed (I just made that phrase up) and the food bounced again.    I tried multiple times but the food was just not going to go down.   Bt them my eyes were watering and I was starting to gag.  I began to cough (which only made it worse since my trachea was the unobstructed channel) I grabbed the white napkin and held it to my mouth.   Food came up.   Food came out.

It was all contained within the napkin and thankfully, I didn’t vomit, but it wasn’t pretty I’m sure (I didn’t check.)   Food had gone up into my sinuses, which was fun for about another half-hour.    Other than that, it was a great lunch.

The Big Boy Update:  Peanut oil!   My son is allergic to peanuts.   My husband had heard that he would likely be fine with peanut oil, so he fried some french fries in partial peanut oil tonight.   My son ate every one on his plate and had no idea he was eating had anything related to peanuts on it.    That’s great news because it’s one less thing to worry about from an allergy standpoint.

The Tiny Girl Chronicles:   I played a game called Zingo with my daughter tonight.   It’s bingo with pictures.   She was having a bad vision day.   I took some videos of her picking up the chip and then putting her eye one inch from the card and scanning the sixteen pictures on it to see if she had the shoe or the book or the sun.   She never complained about not being able to see.  

Fitness Update:  I went to the fitness room with my friend this morning.   She had a deposition to go to and we spent time lifting free weights and talking about questions she might be asked at the deposition.   She was there a long time today, I’m sure it was more exhausting than the workout we did this morning.

Stress Related Behavior

Today we have our first session with Dhruti, a play therapist who has a skill set and experience that seems to be a perfect match to help with what our daughter is going through with her eyes.  Before my daughter met with her, she did a half-hour intake session with my husband and me (with my daughter not there yet) to understand her background.   I learned more in that half-hour than I expected to.  

Through our conversation she helped us understand that children are born with three types of temperaments.   These are nature, not nurture temperaments and we have the temperaments throughout our lives.   Our personality is our temperaments modified by our experiences.    The three types of personalities are (in general terms): Easy Going, Fearful and Feisty.   These are broad generalizations of detailed, well-defined types, but we immediately answered that my daughter was Easy Going and oh, yes, without a doubt my son was Feisty.  (It may be notable at this point to mention my husband and I agreed that I was Feisty and he was Easy Going.)

She said that a trauma or significant change in life situation can cause a child’s temperament to change as they cope with what’s happening in their lives.   The easy going child will have fearful behavior surface as they cope.    As we mentioned things we’ve seen her doing since her vision loss, she said they’re all fearful-based behaviors.   Some of what we mentioned included:

- Making faces, including tongue sticking out
- Licking people
- Hitting people when upset
- Making animal or non-verbal sounds
- Acting like an animal
- Becoming more shy in situations she normally would be outgoing
- Focusing on memory, “Mom, do you remember when…” and telling stories
- Becoming angry more easily and remaining upset for longer
- Attempting to be even more independent than she was before, to prove she’s not dependent

The last one in that list we spent some time talking about.   I had told a story of how my daughter had gotten up, dressed herself, asked what she could have for breakfast, had gotten the plate and cup down by herself and selected the granola bar she wanted.   She brought the granola bar to me (I was still asleep in the bed) to ask me if that was the one she liked?   Dhruti said that that last step, the one where she realizes she’s lost something because she can’t tell which granola bar it is, will cause her to work even harder to be more independent.

With that comment, I told a follow-up story of how she suddenly decided to make our bed, throw pillows and all, the other day.   We were impressed (I really was) and I’m sure we told her how happy we were and proud we were she had done it all by herself.   What Dhruti said was that in these cases, it may sound counter-intuitive, but you don’t want to over-praise.   You want to tell her thank you and acknowledge her work, but you don’t want to make it sound like it was anything other than a job well done.   She said you don’t want to encourage her to overcompensate for what she’s lost.   This will help keep her in better balance.

At about that time my daughter had arrived with Uncle Jonathan and after about two minutes of shy introductions, happily went back to play with her, “new friend, Dhruti who wanted to have a play date with her.”   She apparently had a great time.   We have an appointment next week in which we will learn more.   While my daughter was going to the bathroom Dhruti quietly said, “I see what you’re talking about with the stress.   We’ll talk more when we meet again.”   And because we didn’t want to talk about it in front of my daughter, that’s how we left it for today.

The Big Boy Update:  My son had the best time playing with the toys at Dhruti’s office today.   He isn’t in particular need of help from her, but I think he’d be glad to go and play with her toys any time.

The Tiny Girl Chronicles:  My daughter had her first appointment with a play therapist today.   Read above for more details.    She quite liked Dhruti from what I can tell.   She told me all about the toys they played with in the play room.   We heard a lot of laughter through the walls as well while they were playing together.

The Crippled Exponential Progression

In some things I’m a curmudgeon.   For one, I don’t like Valentine’s Day.  I don’t have any problem with anyone else liking it.   If it’s your thing to make sure your loved one knows you love them in a super special, overly-commercialized and crowded restaurant kind of way, then go for it.   I’d just rather do something nice for my husband at a time that makes sense to me, not when society tells me it’s the day to do so.  

So there’s this Boo thing that happens in neighborhoods.  I don’t know if you’ve experienced it, but it’s cute.   But for some reason I can’t get into it.   I’m not sure why I can’t, because it’s not at all like Valentine’s day, but it seems like another thing to get people to buy stuff to celebrate a holiday before the holiday has even arrived.

Here’s how it works: you get a piece of paper with a picture of a ghost on it.   You have a second piece of paper that says, “You’ve been Boo’d!  Copy these pages two times and boo two of your neighbors by tomorrow.”    You get some sort of Halloween treat or item and deliver that along with the papers to someone’s doorstep.  You knock or ring the doorbell and then you run.    You have just successfully Boo’d your neighbor.

If you have children, they love this.  They want to know what it is and can they eat it right now, even though it’s past bedtime.   If you’re an adult you suddenly have been given a job to do that you didn’t sign up for.   Quick though, put that Boo picture up on your front door so you won’t get Boo’d again, because that’s just greedy.

This year the whole boo thing seems to have gotten out of control though.   Some time back it was a little plate of three cookies.   Now it’s these nice containers with multiple things inside that, again, my kids are super excited about.

I call it a crippled exponential progression though because if everyone followed the next day rules and boo’d two people, a large neighborhood would be fully boo’d by the seventh or eighth day.  In practice, some people don’t get around to making their boo baskets quickly or at all and then every house has a ghost on the door.

I’m fundamentally lazy and I don’t like to be told what to do, which I think is where the whole Boo rub comes in for me.   I was going to be a little lazy for a day or two and see if maybe we were at the end of the booing craze.   But my husband couldn’t manage it; he was compelled to get our boo duty done.    And he did do a nice job.   I don’t remember who he boo’d, but I liked the packages he made up.

And if you’re reading this, thanks for the Boo stuff.   It’s been fun.

The Big Boy Update:  My son has been playing Mario Maker and the Mario game.   This was a conversation he had with Gavin earlier today.  Gavin, “Peach is beautiful when she’s in cat mode.”  My son, “I love Peach.  Peach is beautiful when she doesn’t have fire power too.”   Then, tonight when he was playing and my husband and I were in the room he said, “Peach is beautiful.”  Here is a picture of the beautiful Princess Peach:

The Tiny Girl Chronicles:  We are running out of driveway.   My daughter has covered it all with her drawings.   She’s doing stick figures more and more now.   She told dad this afternoon that one of them was her brother.   I came back and looked at them with here later in the day and she knew exactly which one of her drawings he was.

Fitness Update:  We ran eighteen miles today and did sprints for twenty seconds every five minutes.   It dropped our pace by over a minute.   My legs are tired, but cardio-wise it was a regular run.   So fun to be able to add a little speed with a push every five miles.

What She Can Do

The Tiny Girl Can Do Chronicles:
That title should have been read with a heavy accent on the word ‘can’.  I’ve been writing things here that aren’t always the most uplifting lately, what with the eye revolt going on in her body.   Tonight I’m going to write about some things she can do, and do well, despite her current visual impairment.

Cutting Paper - She is a whiz at cutting paper.   She likes to cut with the paper cutter as well as scissors and because she understands they are both tools that need to be treated with respect, I’m fine with her using both.   Of late she’s been cutting small strips of paper and then turning them into “books” with some tape.  She likes to take scissors after cutting some of the pieces and do more detailed work on the smaller parts.    Yesterday she cut a strip and brought it over to me to ask if I could help her tape it to her wrist.   She wanted to make a hospital band like the ones she’s gotten so many times of late.   I helped her tape it on and then she had a lot of fun tearing it off.   I told her she should put one on dad and me as well and maybe her brother since he didn’t get to go to the hospital with her.

Reading Books - She can’t read, but she can see pictures (in books with large drawings right now) and from those pictures she can tell a story.   We went to the library yesterday and on the way home she told a page by page story of what happened with Curious George.   When she was done though, she asked where Curious George was because she couldn’t see him and didn’t see him even when her brother and I told her where he was, but she could tell a story, that’s for sure.

Finger Snapping - She can snap her fingers.   I don’t know how old I was when I learned, but I don’t think it was three.    She can snap them and make a cute, little girl finger snapping sound.    She’s shown me several times now.

Grid Counting - I don’t know how to title this so let me just explain.   We went to an indoor trampoline place today and had been jumping on the main area of trampolines for a while.   She and I decided to go over to the area for younger children that had smaller trampolines set up in a four-by-four grid.    I told her I was too tall to jump on them but could she tell me how many trampolines there were?    She hopped from one trampoline to the second, then the third and then the fourth trampoline in the back left corner.   She turned and jumped across the back, counting up to seven.    She turned ninety degrees again and headed towards the front, counting to ten.   At this point she made a quarter turn and headed back to me and I wondered what she would do, because the one closest to me was the first trampoline on which she jumped.    Would she get spatially confused?   But no, she got to the one before the start and did another ninety-degree turn.   She continued in an inward spiral until she got to the sixteenth and final trampoline.    I cheered and told her she had jumped on them all.   I didn’t know she would have the developmental skill to map that out at her age and I was impressed.

The Big Boy Update:  My son’s friend, Gavin, is back in town today.   Gavin is staying over tonight and is having a sleep over in our bonus room with both of my children.   My daughter adores him, but my son is buddies with him.   He and Gavin have had the best time today doing serious boy stuff.    Don’t get me wrong, my daughter can jump on the bounce house and play with Transformers too, but the two guys just seem to speak the same language when they play together.    My son is going to be so sad when Gavin heads back out of town.

Social Stressers

The Tiny Girl Stressful Chronicles:  
We had our parent teacher conferences yesterday to talk about how our children are doing in their respective classrooms.    They both got very positive reviews on basically all fronts.   They have things they’re each working on, but that will continue and is expected.  

We talked about my daughter and her ability to function with her significant vision loss at this time.   All of the teachers were amazed at how well she is managing, including still working on learning tasks, pushing herself to new skill levels and requesting more and more challenging work.    We were very pleased to hear how she was managing.

We talked about her stress reactions and they’re seeing the same thing in the classroom we’re seeing at home: putting her fingers in her mouth and making exaggerated facial expressions, making peeping or animal-like squeaking sounds and actions and shutting down completely, refusing to talk about the stressful thing.

I saw her today in a situation that made me sad.   Her best friend from the first year she was in school invited her and her brother over for a play date (well, the mother did.)  They separated my daughter and Jacob two years ago and during that time he and my son have become more friends.    Today my son and Jacob immediately started playing with toys while my daughter struggled to fit in.  

She tried to hug him aggressively, but he didn’t want prolonged physical interactions.   She brought toys over to him but her exaggerated facial expressions and non-verbal requests to play didn’t go over well when he was already engaged with her brother.    She couldn’t see the toys all over the floor and was trying to play with them together, but was having a lot of difficulty.    She did some drawing on a piece of paper for a while but after being rebuffed a few times she went around the corner and I found her singing to herself in a darkened garage entry hall.  When I asked her if she was okay she made the stress face and refused to talk to me.

She got frustrated and angry enough at one point that I had to pull her off Jacob and take her outside, where she hit me to get out her feelings.   She desperately wanted to play with her friend, but it just wasn’t working out today.

The mother is a very nice person, but there is a language and cultural barrier that made it difficult to discuss my daughter’s situation in front of her in “code” before she had to go to a meeting.   She said it must be awful and she would be losing her mind if it was her child.   I told her I felt like that some days but since she was on a healing path, we’re treating this like needing a wheelchair because you have a broken leg, knowing you won’t always need the wheelchair.

The Big Boy Update:  In the car today out of the blue my son said, “are you thinkin’ what I’m thinkin’?”  My daughter immediately replied, “I’m thinking about marshmallows.”   We never found out what my son was thinking about though.

What the Hell?

It’s that time again.   It’s wish list updating time.    My children have their birthdays in November and December so right about now I start to scramble to figure out what I can put on their online lists so that family members will have an idea what they might like.

My son is easy.   He’s easy in that he likes so much and such a varied amount of “boy things” you can’t really go wrong with him.   Today I had him sit down at the computer with me and asked him, “so what are you really interested in lately?   Weren’t you watching some show on your iPad?”   He told me about Ninjago, which is a lego-based thing from what I can tell and Power Rangers.   I’m glad I asked, because apparently some of the things he was into mere months ago aren’t the current draw.

I went to Amazon.com and started searching for toys under those two shows and lots of things popped up.    My son was an easy mark for this kind of information-based manipulation.   He would ask me to click on one of the items to see what it was.   I had added several things to his wish list already when I changed to the second page of suggestions by Amazon.   That’s when he leaned towards the monitor and said, “what the hell?” in perfect intonation.  

I told him, “you can say, ‘what the heck?’” and left it at that.   He decided to practice saying it once and then he was far more interested in the toy to think much more about it.   We correct them on pronunciation and grammar all the time so I went with the not making a big deal about it route and left it at that.  

His wish list has some good stuff on it now, too.

The Big Boy Update:  My son knows his way around videos apparently.   He saw one of the toys online today and said to me, “play the video.”   There were several pictures, but one of the pictures had the ‘play’ arrow symbol over it.   He knew exactly what that meant.   After seeing the video he decided he most definitely was interested in having the toy added to his wish list.

The Tiny Girl Chronicles:  I was on the phone with my husband today and a pneumatic nail gun came up in conversation.   I said, “I’ll call dad and ask him if he has one.”   When I hung up my daughter, who had been in the room for the conversation, said, “mom, why do you call Gramps, ‘dad’?”

The Vision Confusion

The Tiny Girl I Can and Can’t See Chronicles:
I would like to tell you my daughter’s vision is getting better.   I would like to give you amazing stories of her threading a needle (something she used to do in school) and how her needlepoint won unprecedented awards for accuracy at the state fair, but alas, I cannot.   I can, however, tell you conflicting stories of visual feats and you can make your own judgements.

Today after school I came home and my daughter didn’t know I’d gotten home.   I made the “shhh” motion to my husband (that’s the bit where you put your index finger over your mouth) and went up to my daughter.   I held up the bottle of drops.    She asked, “mommy?”   I picked her up and kissed her.   She said, “mommy, is that you?”  I did hug-type maneuvers I typically do with her and she asked again if I was mom.   I held up the bottle of drops and she turned away.   Then, she said, “mom, did you change your hair color?”

And YES, I had just come home from having my hair lightened.   My son didn’t notice at all  (he is a man after all) but my daughter with her gimpy vision did notice.   So could she see me all along?

This morning she came up to me before school and asked if her fingernails were still painted.   Our neighbor, Bryna, had painted them orange and then had put little black dots with a paint brush on each one on Saturday night.   My daughter effectively had ten pumpkin fingernails, but she couldn’t tell if they were orange and black or not colored at all.   I asked her if she could tell and she did the stress behavior she does where she sticks her tongue out and pulls her mouth apart with her fingers.   She avoided my questions very aggressively twice more and then said, sadly, she couldn’t tell if they were painted or not.

And finally, tonight when we were getting ready for bed she asked me if I was going to sign her up for gymnastics at the place we went to before.   I asked her why she had thought of that place and she told me it was because of the shirt she picked out today to wear (which was the gymnastics shirt from the place we went to before.)

So can she see or can she not see?  That is the question.

The Big Boy Update:  My son took streaking his pants to new heights today, leaving such a large “streak” in his pants it fell out the bottom of his pants leg and he stepped on it in our master bedroom.   I was out getting my hair colored but I heard stories of the legendary anger of dad and his carpet cleaning tirade that happened afterwards.   I hope he struck some fear in my son, who was too busy looking at a screen to bother going to the bathroom.

The Tangina Effect

I loved the movie Poltergeist when I was younger,   I still love it, as well as the second and third movies, but the first was always the most frightening and intense to me.   It’s my kind of movie.   It’s horror but there’s sciency stuff that goes on as the paranormal investigators try and determine what’s happening in the house.    There is goo (you have to love a movie with goo) and a strange, short, clairvoyant lady that helps to save the day.

That little lady’s name was Tangina.   She was colorful character, to say the least.   She was strange and yet comforting and motherly to the family, suffering the loss of their youngest child who was trapped inside the television.    There’s a point later on in the movie when the little girl is saved from “the other side” and everyone in the house is reeling from the paranormal experience they just lived through.   It’s at that point that Tangina, with her bunned hair in complete disarray, says, “this house is clean” with a large, self-satisfied smile.

I like to have the house cleaned up before going to bed at night.  I like to put everything back in order and have things prepared for the following day.   It is only when I’ve gotten the house “cleaned” that I can truly relax, get in the tub and then head to bed.    Some days when it’s taken a lot to get the house back into its clean tidied and clean state I think, “this house is clean” and head off to the tub, thinking of Tangina.

(And as a post script for those Poltergeist fans out there, the house really wasn’t cleaned at all, was it?   Hopefully our house will never implode on itself after we get everything orderly at the end of each day.)

The Big Boy Update:  We went to the State Fair this weekend.  My son wanted to see the map of the fairgrounds my father-in-law was holding.   He looked at it for a bit and then asked Grandpa, “can you show me where step one is?”

The Tiny Girl Chronicles:  My daughter made our bed this morning.   She can’t see well, but she can function in many ways far better than you’d expect her to.   She pulled the sheet up and then pulled the comforter over the top of it.   She pulled our pillows up to the back of the bed and rested them on the headboard.   Then, she went over to the chair and got each of the pillow shams and placed them in front of our pillows.   She called for us to come and see.   I was honestly impressed at how well she did.

Fitness Update:  Six miles running this morning in thirty-six degree weather.   I had to find my hat and gloves.

Not Sleeping On Stripes

Do you remember the post I wrote some time back about the tragedy (yes, tragedy) occurring in our house with the tear in our sheets?   The sheets that were twenty-years-old I couldn’t bear to part with?   The sheets that provided such supreme softness and coolness to the touch I couldn’t imagine any new sheets meeting the grade.     Well, I’ve been proven wrong—and I’m glad about it.

Uncle Bob came to town a few weeks ago with a gift of sheets for the bed in the guest room.   When he realized the bed was queen-sized and not king-sized he told me we could use the sheets for our bed.   I put them away and planned to not use them.    Then, only two weeks later when Uncle Bob returned, he brought another set of those same sheets, only this time in queen size.    I helped put the sheets on their bed and I was suddenly interested in the sheets for our bed.   They were soft.   They were amazingly soft and smooth and cool.   I needed to put them on our bed that night and try them out.

The next day I shamelessly messaged Uncle Bob, asking if he could bring a second set of the sheets in king size for his next visit.    I have officially retired the old, striped sheets.

Thank you, Uncle Bob!

The Big Boy Update:  Coming home from school today my son was thirsty.  I suggested he drink some water from the water bottle that goes to and from school with him.   He told me, “my water bottle is low on batteries.”   I told him we’d refill it when we got home.

The Tiny Girl Chronicles:   We have had solar panels installed on our roof in the back of our house.  We’re waiting for final approvals before the system is turned on, but even before the system is operational, my daughter has a good grasp of how they worked.   When someone asked her about the solar panels the other day she said, “the workers put them up.  They take power from the sun.”

"Powerful”

I saw a commercial yesterday.   There’s a very attractive lady holding a microphone on a stand.    They back up and you can see she’s standing at the rear of a car.    She takes the microphone and leans it over until it’s at the rear exhaust pipe and then the car revs.   “Powerful” is the word that comes next as we hear how very loud this car can get and they say, “Introducing the new Mustang.”

My reaction was entirely different today than it would have been before we owned an electric car.    The thing about an electric car—any electric car or hybrid—is that they don’t need to make noise to accelerate.   Loud is in fact a negative attribute for an electric car.    So instead of being impressed by the commercial I was repulsed.  

Time change, attitudes change along with them.   I’m so glad to see more and more electric cars on the roads and more people talking about hybrids and all-electric options than ever before.

The Big Boy Update:  After dinner tonight my children were eating their fortune cookies in the car.   My son handed his fortune back to me so I could read it to him.   I told him his said, “Greyson, you will receive a surprising gift very soon.”   My son paused for a second and then said, “wait, they know my name?”

The Tiny Girl Chronicles:  My daughter’s fortune tonight read, “your love of life can carry you through any circumstance.”   I thought it was appropriate given her eye situation.    For a second story, in the middle of the night last night she came down to ask for help.  As my husband took her upstairs he heard her stomach rumble.   She said to him, “that was my tummy snoring.”    Then, because I have a lot of cute sayings from my daughter lately, I’ll end on what she told me at the fair today.   As we were coming through the gates in the cool, cloudless morning’s sunlight she said, “I smell the sun.”

Fitness Update:  We went to the state fair today and I walked part-way home for four miles of walking distance.   My neighbor, her husband and I then went running.   He joined us for four miles and then we continued for another seven miles to make eleven miles on the trails.    I was tired afterwards.   Maybe I needed to eat more junk at the fair before I came home to run?

Do You Want To Let Me In?

The Tiny Girl Chronicles:   Sometimes cute just takes over and tonight is one of those nights.   My daughter loves her Uncle Brian.   Today she spent a lot of time with him.   She wanted to spend more time with them but I told her he was resting and to not bother him.   She went down to his bedroom door and sang, “Do you want to build a snowman.”   Then she sang, “do you want to let me in?”  

Uncle Brian got the whole thing on video and has shared it with all of us, who have thought it was nothing less than charming.

The Big Boy Update:  My son is content to spend an entire day electronically.   This is new, and only something that we would let happen on weekends with our electronic device rules.   Today, he did a lot of electronic-time.  

The Taste of Glue

Today was Bring Your Parents to School day.   For our children at their ages, this means forty-five minutes in their classroom, being their guest and letting them show us what choose to.   It’s an interesting, if brief, time in which we get a small glimpse of what happens during their school day.

My husband and I took turns with each child and when I joined my daughter she was doing, “gluing work.”   As an aside here, pretty much everything in Montessori school is called “work”.   She was taking a small paint brush and dipping it glue and then rotating it around so the extra glue would drop off the brush.   She would then pick up a piece of small paper she liked (cut up pieces of an old tissue box) and then apply the glue to the back of the piece.   After doing this, she put the paint brush down on a chopsticks holder so she could pick up the piece of paper, turn it over and place it on her sheet.    My daughter was doing this with precision and carefulness and had a nice collection of squares pasted onto her sheet when I got to the room.

I say on my knees watching her and decided to put her hair up.   I told her, “I’m putting your hair up so I can see what you’re doing.”   It was hard to see because with her poor vision right now, she was getting right on top of the work.   She said to me, “mom, I think you’re putting my hair up because you don’t want me to get it in the glue.”   I laughed and told her she was right, but that it did make it easier for me to see as well.

And here’s where I have my personal confession to make to you, my favorite readers.    While I was watching my daughter dip that little brush into the white, Elmer’s-type glue, I could remember what it tasted like.   I remembered as a child pasting things with glue, getting it on my fingers and when it dried, chewing it off with my teeth.    I remembered the texture and flavor of the glue it was wet and how it was stretchy and what it tasted like dry.   I remembered it not tasting all that bad…for glue.

When I was a child, the general story going around from child to child was the glue was made from horses hooves.   I have no idea what that type of glue is made from even now.   I haven’t tasted it since I was much, much younger, but watching my daughter tonight brought back the taste in a vivid fashion I would  never have expected.

The Big Boy Update:  I went to visit my son in his class today.   He had been telling me for a while he wanted to show me, “The Exchange Game.”   I had an idea what it was about but I didn’t fully understand until he had gotten out all the components to physically count numbers up to the thousands and had the two of us rolling ten-sided dice to count out onto our trays.   When we got more than ten of, say, the hundred’s stack, we could “change” the stack into a cube representing one thousand.   Here’s a web page that shows the materials we were using, although their variant requires a teacher present.   In our case, my son was running the game.  The Exchange Game

The Tiny Girl Chronicles:  My daughter’s teacher came over to me during Bring Your Parent to School day and said, “I have an observation to show you.”   She got some cards with polygons on them and said, “she’s been doing sorting work using these two types of guides recently.   One had a heavy border at about a half-centimeter thick, which I would expect she could somewhat see.   The second one had a very thin border and yet her teacher said she could see those shapes as well.   She said she had also watched when my daughter was working with the Spanish teacher this afternoon.   The teacher had printed materials in two different fonts.   My daughter (who can’t yet read) told Ms. Carina, “I can see those words better” and pointed to the cards with the heavier, bolder font.

Vision Variations

My daughter’s vision is perplexing, to say the least.   Part of the challenge is getting information from her about what she can see and what is hard to see.    She really, really doesn’t like talking about her sight if she figures out that’s what you’re driving at with your questions.   Sometimes though, you get this insight she’s seeing well only to have your hopes dashed with observations later in the day.

This morning I woke up to see my daughter standing quietly in our bedroom, looking out the windows.   I’m not sure if my husband originally liked sleeping in a non-darkened room, but he seems to not be bothered by it at all now.  We have four large windows across the side of our bedroom that face directly East, so in the morning we see the sun rise.  

This morning my daughter was standing in the pre-dawn light, looking out our windows at the sun.   I said, “good morning, what are you looking at?”   She told me, “I was just watching the sun wake up.”  She told me she could see the pink clouds and the trees.    She said she didn’t see the blue sky though.   I explained how the sky would remain grey until the sun was up and then it would look blue if there weren’t clouds blocking the sky.

She climbed into bed with me and I told her I liked her outfit.   She gets herself dressed every morning, including putting her nighttime diaper in the kitchen trashcan, her pajamas in the laundry hamper, getting underpants and an outfit on and sometimes, depending on her mood, socks.   This morning I told her I liked her outfit.   She told me there were snowflakes on her shirt.   I looked carefully and her red shirt had small, white stars on it.   It wasn’t snowflakes, but it was close.

So yeah, I was feeling pretty good about her vision this morning.    This afternoon she came home and was helping me in the kitchen when I asked her who her friends were in her class.   There is a piece of paper with pictures of each classmate taped on our refrigerator at her standing height.   She went over and got within an inch of the paper, squinted with the left eye and had trouble figuring out who was who, including which picture was hers.  

Mystery vision continues…

The Big Boy Update:  My son was looking out the windows in our bedroom the other morning as well.   When he realized I was awake he said, “I’m looking at the pink clouds.”    He thought about it for a few seconds and then said, “pink is a girl color.”

The Tiny Girl Chronicles:  My daughter is interested in winter, specifically snow lately.   She’s going to make Olaf when there’s snow.   She told me “we’ll need a giant carrot for the nose and chocolate chips for the eyes.”  She and her brother had a conversation about him and then she decided she also needed five chocolate chips for the buttons and some more chocolate chips for his mouth.   At that point there was a decision that they would need some chocolate chips for their mouths as well…to go in their mouths.

The Envelope

My husband and I received notification from the Internal Revenue Service last month letting us we were being audited on three of the areas of our 2013 federal tax return.   We’ve been working since that time to get proof of everything we claimed for those areas.   This has taken some time, mostly because account statements aren’t available online that far back in many cases and we’ve had to request copies from the various entities.  

Nothing we had to do was particularly difficult, it just required pulling together everything, tallying up the individual amounts, finding cancelled checks or proof of payment and getting it all organized in a nice bundle of paperwork.   And for those of you that know me, you know it was a very nicely organized bundle of paperwork, because I just can’t send in mess.

And when I say, “paperwork” I mean digital paperwork, because we organized everything digitally first, scanning in all items so we can reference any part of the audit if needed.

Today was the day: we made it within the thirty day response window and my husband was about to take it all to the post office to mail it.   That’s when he came over and showed me what the IRS had thoughtfully included for us to mail our audit documentation in with:

The Big Boy Update:  We were talking about what to do for his sister’s birthday party yesterday afternoon.  At the time, my son was naked due to a dirty underpants issue and an ultimatum that he couldn’t play with any toys or do anything until he went and put on more clothing from his bedroom. As he wandered around the table we were sitting at he said, “I want to have a naked birthday party.”  The adults at the table egged him on, asking who he wanted to invite.   He wanted to invite all the boys from his class.

The Tiny Girl Chronicles:  Something strange happened the other morning when I got up to do an early morning run.   We had had a conversation with the children about sleeping in their own beds and that they could come down when it was light outside, but if it was dark it was time to sleep in their beds.    As I was groggily waking up in the dark I could have sworn I heard my daughter come into our room, go to our bathroom to use the toilet and then leave.   When I was about to leave to go run a while later I found her: she was sleeping on the chair in the living room, balled up around the pillow.    She didn’t want to get into bed with daddy, she said she would just like a blanket.    She seemed very happy there as I headed off into the dark for a run.

The Floor Mat Phone Call

I made a phone call today and was yet again, so in awe of the wonderful service Tesla Motors gives to their customers.  

To start off, there was a problem with the floor mats.   It was’t a big problem, in fact it was a problem I’d had with more than one of my BMW cars, but it bothered me.    The mats themselves were fine, it was the way in which they were expected to stay in place that was causing the problem.  

There were four things in play:  the mat, the velcro fuzzy part, the velcro prickly part and some adhesive.   The adhesive was the failure point in the system.   The mat was fine.   The pokey part of the velcro on the bottom of the floor boards was fine as well.   It was the round fuzzy disks that were attached to the bottom of the mats via some adhesive that weren’t holding up over time.    They were sliding and then bending and then sticking to other bits of the fuzzy part and not doing the job they were designed to do.

This wasn’t a problem though, all I needed were new round, fuzzy disks to replace in the spots the old fuzzy disks were on the bottom of the floor mats.   I’d had similar problems with my BMW mats. I called the service center and as I was dialing my husband said, “we need to get the tires rotated too if they can help with that.”  

I got on the phone and was told if I could bring in the car sometime today they’d be glad to rotate the tires.   And about those mats, yes, that was a problem but it was covered under warranty and they’d exchange our mats for new mats the didn’t have that pesky adhesive problem.

New mats?   Because of a little glue issue?   I asked, incredulous, but he said yes, the mats shouldn’t have had the problem and they would be glad to replace them.    By three o’clock in the afternoon we had our tires rotated and completely new mats in the car.

I’m glad I made the phone call.

The Big Boy Update:  My son observed tonight at the dinner table: “you guts are just babysitting me for a very long time.”   Never was a truer statement said from a child to their parents.

The Tiny Girl Chronicles:  My daughter went to the pediatrician today.   We had her persistent butt rash (is that polite to say?) checked.   Our favorite doctor, who is just a delight to see, gave us some direction and medication to hopefully help.   It’s going to be a trick to get rid of the rash because of the immunosuppressant and steroid medications she’s on.   Fortunately, my daughter isn’t bothered by the rash at all, even if it looks frightful.

Back Under Anesthesia

My daughter had an Evaluation Under Anesthesia (EUA) today to see what’s been going on with her eyes.   Frankly, honestly and truthfully, I’ve been having a hard time holding on to my positive attitude because she is just not seeing well.   It wavers and changes and just when you think she’s seeing something sort of okay, you realize she can’t see something pretty darn fundamental.    But that’s my problem, she seems to be coping just fine.    And that was my day yesterday; today I’m in a better frame of mind, mostly because we got good news.

The Good News:

1. The inflammation in her eyes is dramatically better.   When comparing images from the first EUA one of her doctors said it was like looking through a fog.   Today her eyes were clear.
2. The blood flow to her eyes is back to normal
3. The aberrant vessels that had grown in the anterior portion of her eyes has almost gone away as a result of the Avastin injection.

What Else We Found Out:

• Her right eye is still worse than her left eye (we could tell this bit.)
• Her detachments aren’t objectively better.   The detachments in her eyes are a little like a balloon losing fluid which turns into a wrinkly, saggy balloon.   She’s not seeing well at all right now because she’s got sagging retinas that can’t cohesively interpret the images being sent through the lens.  Even though her vision isn’t better yet, the healing that’s taken place is what’s important now.
• Serous detachments are less dire/sever for permanent damage.   Tear-based detachments can lead more easily to permanent damage.    Because the retina maintains its own blood flow, as long as blood flow to the eye is good (which now it is) there is less concern for permanent damage.
• The Atropine is affecting her near vision some, but by far the majority of her visual deficit right now is caused by the detachments.

The Next Plan:

• Reduce the Atropine to once per day.
• Work with Rheumatology for a plan to reduce the oral prednisone
• Come back for an EUA in three weeks to evaluate more

The Big Boy Update:  From the back of the car today my son said, “I hate to tell you this…”  I laughed under my breath because he said it in just the tone an adult would use.    He followed up with, “…my Crock is broken.”   And so it was.   

The Tiny Girl Chronicles:  My daughter got this little bear.   He looks somewhat like Winnie the Pooh, but she named it “Sweet Tomatoes” saying, “Winnie the Pooh is a bear, mom.”   She likes to put it on the pillows on our bed so we’ll have a bear at night.  

Tomorrow’s EUA?

Tomorrow my daughter goes back to Duke for another Evaluation Under Anesthesia (EUA).    We don’t know what they eye doctors will find (several will be in her procedure) but we’re hoping for some good news.

I would like to tell you we’re seeing great signs of improvement, but what we see from day to day, hour to hour even will cause our story to change.   Today, my daughter didn’t know I was standing in front of her.   She couldn’t find any of the group of people she came with to the park because we weren’t talking to let her know which of us were standing where, removing sound from the equation. We watched her as she wandered around, checking where we had been standing before, checking out other people and then moving on.  

Then, other times during the afternoon’s buddy walk event we saw her come right up to us and act like she knew we were there all along.     Coming home she knew we were in our neighborhood.   Did she recognize the turns of the car or could she tell the houses from far away?     I can’t tell you other than to say her vision is a mystery right now.

What I can say is it hasn’t improved markedly or even measurably from what I can tell.   This may be the course of healing that needs to take place, but it’s hard to take some days.    Tomorrow we hope to know more.

The Big Boy Update:  My son got his face painted today.  He was a werwolf or a tarantula or something that involved all black paint on his face.   I wasn’t there when it got done and I couldn’t understand him when he told me what he was (replete with mouth noises and arm action) and I figured if he was happy, then I didn’t really need to know.  

The Tiny Girl Chronicles:  My daughter has been making these strange faces lately.   She puts her fingers in her mouth and stretches out her mouth with her tongue out sometimes, other times she just pulls her mouth in strange configurations.   It is not attractive.   I think today we figured out it’s a stress response though because we saw her do it when she realized she didn’t know where we were in a crowd.    She’s also been twirling her hair a lot as well.   We’ve been working on getting some occupational therapy and guidance for her given the length this is taking to resolve so we should have some advice soon.

Visiting Graduates

I substituted in the Upper Elementary class at our children’s Montessori School for two days this week.   Montessori classrooms are combined ages, with the Upper Elementary classroom being the equivalent of fourth, fifth and sixth grades.  This is the first time I’ve substituted this year and it was nice seeing the students who were in the classroom last year and meeting the new students who started as rising students from last year.

I missed the students who had graduated but I had a surprise when I realized there was a class member who hadn’t been at the school for two years, but was back visiting old friends.    This might have been disruptive in some classes, but these students have spent all of their school years learning how to work independently, or together without being disruptive.   They know how to do time management and they can all work quietly in a room together.    The returning student was on fall break, but she had brought work with her and worked along with her friends through the morning.

The next day when I returned to substitute I found two more friends who had graduated last year that came back to visit for a day.   The class talked during circle time about what their new schools were like, how classes and work compared, were they liking the new school and had they made friends?   Because many of the students will be transitioning to a new school for the first time in their lives in the coming year, this was a good conversation to have.   The returning graduates had positive things to share about their experiences.

Work time began after morning circle and the students and visiting graduates all settled down to work.   About an hour later one of the graduates, Natalie, said, “I’ve got Sanju on now!”   The entire class jumped up and the teacher happily walked over to Natalie’s computer, where Sanju was there via Skype.

Sanju was a fellow student who’s family left to return to India this year.  Everyone was interested in how she was doing in India, what school was like, how her brother had grown and how her parents were doing (they came online for a bit to say hello.)   There were questions about what time it was and what the food was like and if she was coming for a visit any time soon.     It was a very happy twenty-minutes spent catching up with a friend and her family.

Once the call was done the teacher thanked Natalie for coordinating with Sanju so everyone could say hello and then everyone returned to their tables and went back to work.   I am so impressed with these students and the way in which they manage their time and day.    I have so much respect for what our teachers do to instill good work habits in children from early on.

The Big Boy Update:  After dinner out tonight my son and daughter had too much energy.   I took them out front, telling them they had to stay on the sidewalk.   They went around the corner to a patio area that was empty in the wet weather and my son spied a large tree with a wooden bench around the base.   He told his sister, “we’re doing training exercises!” and then tried to karate kick the tree.    He and she had a great time “training” until everyone else was done eating.

The Tiny Girl Chronicles: My daughter ordered something different for dinner tonight.   When offered choices at the Mexican restaurant, she chose a taco, rice and beans.  Further, she decided on a soft taco.   When her plate arrived I told her to ask when she was ready for the taco because she would need help.   When she was ready she asked me and I got the taco off the plate and showed her how to hold it, letting her know you eat from the end.   She ate a good bit of it and looked like a professional taco-eating three-year-old in the process.

Fitness Update:  I ran a 5K race with three friends today.   The first friend was my neighbor and running buddy.   The second two were friends who have never run a 5K before and decided to train for a race.   It was hard work for them.  I remember how hard it was for me at the time, what with me believing it was impossible to run a 5K, much less anything as crazy as a marathon.   They both did very well, running the whole race.   Congratulations Linda and Jen!!

Seventh Marathon

Guys, guys, guys, I’m tired.   We did a trial run for our upcoming marathon in November today.  If you had asked me five years ago or any time prior to that in my life if I’d ever run a marathon, I’d tell you you were crazy.   To date, I’ve run in three marathon races and have run an additional four marathon-distance runs during my training for the runs.    I can’t believe it when I think about it, and yet, I seem to really like running.


Today’s run was more challenging starting out than I expected, but I worked into running after about ten miles.    My neighbor started having difficulties in her calves and legs from what seemed like a buildup of lactic acid.   We had to stop for about ten minutes so she could drink a lot of water and stretch out her legs.

All in all, I’m tired, but I should be able to run the marathon in a month.

The Big Boy Update:  Did I mention my son can be completely sucked in by anything television?   He is currently watching a princess pony thing on our friend’s daughter’s iPad.

The Tiny Girl Chronicles:    My daughter was waiting in the driveway for me to come home from my run today.   We came by, but we had another mile to go so I told her I’d be back in a little bit.   Sure enough, in the twilight (it was late) my daughter was standing in the yard, waiting for my return.

Fitness Update:  26.4 miles.   Tired.   Going to bed.

Arsenal

The Big Boy is Definitely a Boy Update:  My daughter has had a lot of posts featuring her lately so tonight instead I thought I’d write about my son.  

I don’t have the level of testosterone in my system my little son does.   I don’t know if it’s testosterone or boy genes or brain chemistry but I can tell you this, it is nature, not nurture that makes my son love weapons and fighting and action and aggression, but there is something that makes that, “he’s a boy” statement one of the most simple and understandable things any parent can say by means of an explanation (or excuse.)

My son got a new toy yesterday evening, but he wasn’t allowed to open it on account of there being a “yittle bit of poop in my underpants.”   It was a relatively cheap small toy, but he had to wait until today.    When he did open it he played with it for hours.   He picked it out at a discount store.   It was some sort of opening wall or gate thing.   There was a man on a cart and then there were all these items that looked like little weapons.    I didn’t pay much attention at the time.

What it was was some sort of gate/weapon rack and all those little weapons were in fact little weapons and each could be stored by hooking on to the gate thing.   I didn’t say anything to my son and he didn’t have the instructions, but he didn’t need them because he knew what to do to rack an arsenal of weapons.  

Speaking of arsenal, I told him, “nice arsenal you have there.”  He asked me what ‘arsenal’ meant and I explained.   Next month I’m going to see if I can work ‘panoply’ into his vocabulary.

The Tiny Girl Chronicles:  My daughter’s vision goes from dismal to good to and then back to dismal in a span of ten minutes.   It’s mostly what you’re trying to tell if she can see and what your expectations are of the results.    She can see some things I don’t expect her to see though, like several nights ago when she was in bed and the room was lit only by the night light.   She said, “mom, can you close that door?”  She was pointing to the closet door across the room that was open, with darker area where the opening was.   She was able to discern the different amounts of light in the dark room.

Handwritten

There are things I do well and things I do poorly and things I don’t really care about doing and then there are things that just hurt.   One of the things that hurts is handwriting.   It’s not writing a little not on a scrap of paper saying, “Trash Day” so we don’t forget to put out the trash bins in the morning.   It’s the writing of paragraph-length or longer text that starts to get to me.

It is either one or another thing or a combination of two things.   The first thing is I don’t think I learned how to write well.   I seem to hold a lot of stress in my hand when I write.   Given today’s computer/phone/tablet-based society there isn’t a lot of call for my handwriting muscles to be flexed, so my hand gets tired easily.   The other part that I think is the more limiting factor is my spinal cord injury.

There are things I can do that seem easy to me, like running a marathon.   It’s fun, it’s exhilarating.   It’s not painful in that regular, “you’re going to pay for this” kind of way.   Handwriting little notes at the bottom of formal letters, however, yells out, “stop, this is going to hurt later.  no really, quit now.”

I don’t know why running for hours at a time, swinging my arms the whole way is fine, but sitting with a little, dinky pen in my hand for ten minutes causes me to cramp up.

The Big Boy Update:  My son is totally potty trained.  He however doesn’t seem to be wanting to take a break to go lately because for the last three nights he’s said when it was time to get his pajamas on, “there’s a yiddle bit of poop in my pants.”   And yes, it was a just a ‘yiddle’ but a yiddle is too much.  

The Tiny Girl Chronicles:   My husband and I picked out this dress we really liked in a catalog.   We don’t buy from catalogs much, getting most of my children’s clothing from hand-me-downs or used clothing stores.   But in this case the dress just looked like something she’d love.   It arrived and we were disappointed to discover it was in two layers: an under dress and an over dress, both made from very slippery material.   My daughter did like the dress, but she kept lifting up the top, colorful layer all day.   At some point I just took it off her.   When it was time to get dressed for bed she told me, “mom, my topping’s gone.”

Back Seat Upgrades

My children got an upgrade in their car seats recently.   They have not one, but TWO cup holders each.   They are thrilled.    There’s more to it than that though, because they’re in the next stage of car seats.    These new seats allow them to use the included car seat to strap themselves in.     This is the upgrade I’ve been looking forward to.

They have gotten good at strapping in themselves fairly quickly.   They need to stretch the seat belt out, pull it downwards towards the connector side and then click it into the receptacle that’s down a bit below their sitting position, which is necessarily higher up.  My daughter insists on doing this herself, although her vision is preventing her from doing it quickly as finding the little insert spot takes some steady aim and clear sight.    She’s getting faster at it though.

The other advantage is the car seats aren’t connected directly to the chairs themselves, so we can move them to the back seat (third row) for longer trips or special occasions very easily.   Both children think sitting in the third row is pretty amazing stuff.    We’re going to save it for special occasions and rewards for now.

The Big Boy Update:  My son is becoming a calmer person for a lot of his day.  I believe this is due in large part to the start of the school year.   He understands there are times to be crazy, go crazy and make other people crazy, but he’s also more focused and generally more present a person for more of the day than he’s ever been before.

The Tiny Girl Chronicles:  I mentioned to my children we were going to go to one of their favorite stores and would the like to guess which store I was talking about?   My daughter piped up immediately and said, “I want to go to the place with my butter cups.”  I had to think a bit and ask some follow-on questions to figure out what she was talking about.   It turns out she was wanting to go to Five Below, a store where everything is five dollars and under.   She can pick anything she wants at the store—my son gets a gun-type thing or a transformer-isa toy—but she always ends up picking the ten pieces of candy in a bag for a dollar.   She loves the Reese’s Peanut Butter Cup minis there.   My daughter’s name is Reese.   They’re her “butter cups.”

Telling Signs

This is one of those posts about my daughter’s vision.   It’s been a tough time determining if her vision is improving, degrading of maintaining because my three-year-old isn’t inclined to provide us with insightful information.

What we get is what we can observe.  Today I think I observed some improvements in my daughter’s vision.   We decided to play the road signs game on the way home from one of our errands.   Because my son was in the car and his vision is what we would call, “normal” under regular situation but we might refer to as “exceptionally perceptive” when compared to my daughter, we had to put constraints on the game.

I told them to look for road signs on the side of the card their car seat was on and to let me know when they saw a sign and to tell me what color it was.   For my son, this was child’s play.   If he could read, he would have been calling out street names and block addresses.   For my daughter, getting a “I see green, mommy” for an overhead highway sign would be a big sign of success.

But I was surprised.   My daughter was noticing more signs than I expected.   She was seeing smaller signs than she’s seen in several weeks.    I wouldn’t have guessed she could see so well, given what she saw at the store not one hour before…

We were looking through the toy and holiday isle while we waited for my husband and brother-in-law to get done selecting merchandise.   I asked my daughter if she knew what was on the large boxes in front of her.   They showed pictures of gingerbread houses, something she’s been talking about for the past week or so.   She had no idea.

Maybe it’s the Atropine working close-up though, because her far vision seems to be improving.

The Big Boy Update:  There was a lot of noise in the car this afternoon.   I suggested we play the quiet game.   My son, seeing the situation for what it was, said, “I want to play the whining game.”

The Tiny Girl Chronicles:   My daughter has had my wrath put upon her several times recently.   My big complaint is that she doesn’t need to say, “mommy” at the start of every thought to me.   I have even yelled, “PLEASE STOP CHANTING ‘MOMMY.’”  She’s been working on it too.   Today she said, “You didn’t want me to say ‘mommy’ or ‘Courtney,’ right?   Okay, I’ll try again.”    She did, and she got it right.

Sometimes It Doesn’t All Get Done

I’ve put on the way back machine for tonight’s post.  I was working as a co-op at IBM for several months at this point.   I was still in college, but I had gotten into the swing of doing things within the department and team I was working on.    I didn’t have a good understanding of work in the business world, but that’s what I was there to learn.    I was also there to do any and all of the little jobs the team members could come up with for me to help with.  

There were co-ops that got boring, mundane, time filler and time killer jobs to do but the team I was working with wanted to give me things that I could learn from doing.   As I think back on it now, I was fortunate to be placed with that group because I did indeed learn a lot and I had a good time doing so in the process.  

I struggled with something for a while without telling anyone though.    I had lots of things to do and some of those things were more important to get done than others.   It wasn’t in the prioritizing of the work that I had an issue, it was that some of the things they had asked me to do were just not going to get done at the rate new things came along.   

The types of things I hadn’t had a chance to address were the kinds of long-term, lower priority projects like, “Come up with an organizational strategy for past product builds.”   We were working hard on just getting the builds out, going backwards and tidying up the older builds, which may or may not have been a complete mess, just wasn’t going to get done…unless there was a bored co-op with nothing else to do, in which case it would be staggeringly dull busy work I could fill my days with.

My manager came in one day and asked how it was going and if I had any questions.   I told him I was worried because there were some things I didn’t think I was going to get to with all the other things I had to do.   Also, there weren’t any due dates on these other things and could he help me with that?   Coming from a college environment, there are always due dates.      He said with all seriousness to me, “sometimes, things don’t ever get done—and that’s okay.”   

I wasn’t going to write about this tonight, but I was going through my list of things to do and in so doing, marked several things to archive that I didn’t even start and as of today, don’t think I’ll ever do.   It reminded me of that day with my manager so many years ago.

The Big Boy Update:  My son said to us today, “are you thinking what I’m thinking?”   Without stopping to hear my of my daughter’s answers he said, “I’m thinking about Reese.”   He did not explain what he was thinking though.

The Tiny Girl Chronicles:   Eighty-four questions today about what food could she eat or when was it going to be meal or snack time or what was for dinner or that she was hungry.   Eighty-four times I had to try and distract her and get her to focus on anything else.   I offered healthy foods like carrots and apples but they were mostly rejected.   There were likely more than eighty-four times, but I just started counting after nine o’clock.   May favorite one of the day was, “Mom, is it snack time yet?  Because I ate all the apples.”

Prednisone Reduction

Despite our concerted efforts, my daughter has gained over two pounds in the past two weeks.   We have been fighting the side-effects of the oral steroids, one of the five corticosteroids she is currently on.

I have been diligently dialoging with her rheumatologist about an alternative to the oral prednisone she is on, which is causing behavioral, mood and hunger issues.  As of today we are reducing her dosage by half, and will hopefully remove the oral steroids moving forwards.

The Big Boy Update:  A phrase I find myself using with my son frequently of late is, “the future of XXX depends on your curtesy.”  My son’s courteous response has been a much-repeated topic of conversation of late.

The Tiny Girl Chronicles:    My daughter has been crossing her eyes a lot lately.   I asked her eye doctors about it and they’ve said it’s okay and not hurting anything.   I’ve asked my daughter about it and she says it feels good, so I’m ignoring it for now.  

Teach Them to Cook

My next-door-neighbors have two children we like to have sit for our children from time to time.   Both their son and their daughter are much loved by my children.   I’d go so far as to say they may prefer them over us some days.  

One of the things I have been impressed with since they moved beside us is their ability to cook.   Both of them not only are able to prepare a meal for our children, they both like to make them something to eat.   

When my children are older, I hope they’ll feel comfortable making a meal for themselves and others.    My husband is with me on this, we plan on teaching them to cook from a young age. 

The Big Boy Update:  No reference for this other than to say my son said it unprompted during the middle of the afternoon when he was eating snack:  “when I was in Mommy’s tummy I was jealous.” “Of what,” my husband asks?  “Of her burping.”

The Tiny Girl Chronicles:   My daughter’s vision is getting better.  I think?  I hope?  I think it’s “I think” and not “I hope” but since we’re seeing small improvements, it’s hard to tell.   One thing that broke my confidence today for quite some time is a statement my daughter said after I’d picked her up from school.   I knew one of her teachers wasn’t at school today because she had called and asked if I was available to sub (I wasn’t.)  My daughter said, “There was a different teacher at school today because I didn’t hear Miss Timmie.”

I Feel Like One Big Blob of Worry

I try not to worry about my daughter’s eyes, but it’s very hard some days.   I heard the above saying from an article I was sent and it does sum up how I feel sometimes.  

But not all times.   My daughter seems happy, although we worry she is harboring stress and anxiety she’s not letting us know through avoidance techniques and overall not wanting to talk about the situation.

My day has taken over my night and I’m plain short on time so I’m keeping it short tonight.  And I am fine almost all of the time.   It’s just sometimes when the worry creeps in between the cracks and blows open a wide chasm of worry.   But not today.   Today has been good.

The Big Boy Update:  One of the acoustical songs from the Frozen soundtrack came on the other day.   It was rather ominous sounding.   My son said, “this sounds like a worry song.”   Then, he listened a little more and said, “and a hurting song.”

The Tiny Girl Chronicles:  My daughter is definitely seeing things, although she’s not been focusing on her vision lately because it’s so poor.   But last night just before bed she opened the door to the porch and as she walked outside she said, “Mom, I’m seeing the darkness.”

Fitness Update:   I didn’t think it was going to happen with the dire rain weather predictions.   That, coupled with the scheduling nightmare my friend and I have had trying to get together, but we did get to run today.   We didn’t think we could wedge it in, but we made twenty miles before I had to dash to the school for a little substituting at the end of the day.