The Doctor Grace Call

We saw my daughter’s pediatric ophthalmologist last Friday.   She looked at what she could and evaluated what she could get my daughter to sit still for—surprisingly much as my daughter was in a helpful mood.   Dr. Grace planned on calling Dr. Trese and coordinating their plan for the cataract and how to proceed.   She said she’d call me when she had had a chance to talk with him.

Today I got that call and as has happened multiple times with my daughter’s eyes, things from a, “this is what we’re planning to do” direction have changed.    This is okay, this is fine, the more thinking we have going on about what would be the best path for the crazy, un-named condition my daughter has, the better.    Here’s where we are now:

The cataract may not be over the central vision portion of my daughter’s left eye.   If it doesn’t progress further inwards, they will leave the lens in place.   The clouding of her lens may also be not cataract specifically, but those little vessels she had from birth, something they called, “Persistent Fetal Vasculation”.  If that’s the case, the lens will stay in.     Basically, they don’t want to remove the lens unless they have to because it could cause—get this—retinal detachment.

It’s not a high chance, but given all that’s happened to my daughter’s eyes and taking into account their rather delicate nature, it’s better not to risk it unless necessary to maintain her vision.   It can also cause ocular pressure to drop—something the left eye has recovered from and is measuring a low normal.    So the doctors don’t want to mess with her left eye if they don’t have to.

I asked about the cataract though, specifically what might cause it in such a young child.   Two things are top candidates, both of which my daughter had.   The first is inflammation.   The original incident, unknown in nature, caused dramatic inflammation in my daughter’s eyes.    How have we been combating the inflammation?   Steroid drops, the second culprit in the cataract realm.   Most people aren’t on steroid drops for prolonged periods like my daughter.   But she needed the drops.  The eye needed to be calm and not inflamed so the retinas and everything else could heal as best as possible.   Even on our call today, Dr. Grace believed the value of continuing the steroid drops far outweighed the potential of cataract development.

Next steps:  We have an EUA with Dr. Trese on November 7th.   At that time he will make his next recommendation for future plans.   He told Dr. Grace there is a tool they have at Duke their specialists use that he doesn’t have.  Their handheld Optical Coherence Tomography machine would be able to get a better view of my daughter’s retinas in some ways.   Additional information would be good to have.   We’ll have to see later this year.

The Big Boy Update:  Did I mention my son thinks the pompoms he gets for being gracious and courteous come from my armpit?   It was an accident when it first happened and loath as I am to lie to him, I haven’t bothered to tell him he’s not exactly correct when he tells his friends where his pompoms come from.   I gave a pompom to his sister yesterday (based on his suggestion) and I showed him how I put the pompom under my arm and then let it fall down when his sister asked where it was.   He thought that was funny but didn’t make the connection that they weren’t produced under my arm in general.

The Tiny Girl Chronicles:  My daughter came downstairs crying early this morning.   She had a dream the pompoms had all spilled out on the ground.   I told her they were safe and then she fell back asleep.

The No Longer Favorite Seat

We have two bar-height seats facing the sink in our kitchen.   Our two children have sat at these seats since they’ve been out of high chairs.   My son sat in the left seat and my daughter sat in the right seat.   Then, several months ago, something changed.

One of the seats (my daughter’s) was named, “The Favorite Seat” by my children and was the place to be.   It was worth fighting over, getting in trouble for and even losing privileges for.  It was just that important.   We didn’t know why it was important or what caused it to suddenly be important, but we had to do something to cause the seat madness to end.

A schedule was made and each child had certain days The Favorite Seat was theirs.   This made things manageable.    Order was restored and meals could be had in relative calm.  

But times change.   It’s been I’d guess two months now since either of my children really cared about The Favorite Seat.   I’ve been keeping on the refrigerator the orange sticky that had the weekly schedule but it hasn’t been referred to in a long time so today I took it down.

We don’t have a current battle over something adults would find silly while children think the thing is worth fighting over but ten to one something will pop up soon as the next “Favorite” thing.

The Big Boy Update:  My husband got a drone.   It was bound to happen sooner or later.  He had it in pieces on the table and before he even had the propellers on it my son realized what it was.   My son is interested to see it flying

The Tiny Girl Chronicles:    My daughter seems very verbal to me.   She does talk a lot, but her music therapist said she might be a non-verbal processor.   This would mean she needs to process things like her vision impairment, difficult situations, etc., non-verbally as opposed to talking them out.  More on this when I understand it.

What I Did To Exercise Today:  I’ve grown tired of the section title, “Fitness Update”.  I need to come up with something I like better.   At any rate, I ran seven miles this morning.

And On A More Upbeat Note…

Yesterday’s post was a downer, sorry about that folks.  Let’s talk about today and how it was a better, happier day all around.    It was the first day of school for our children.    It’s the fifth year we’ve been at this school and we are very happy to not only have our children there, but to be involved in many other aspects of the school itself.

I was at a welcome session this morning and talked to new families.   We had a staggered start which involved dropping off my daughter at one time, picking her up later while dropping of my son and then coming back to get my son.   It’s going to be like that tomorrow as well as the teachers welcome the new students into their classrooms in smaller group settings.    Its fine with me because my children liked the quick, short day and I got to speak to many new parents as we stood around.

We had three orientation meetings tonight, one for each of our children’s main classes and a third one for the after school hours my daughter attends while my son finishes the “kindergarten” hours Montessori schools call, “Extended Day”.

Everyone was happy and friendly.   We have new families I was pleased to meet and look forward to seeing at events and at school as the year goes on.     We have a very happy, positive and friendly school.   The children seem to like going there as much as we like having them there.  

The Big Boy Update:   My son wants to take Spinjitsu classes.    I told him I wasn’t sure the Martial Art moves they do in his cartoon called, “Spinjitsu” was thought around here.    I don’t think it is…I haven’t checked?  I wonder if it’s a real thing?

The Tiny Girl Chronicles:   We went to school in “The Flying Car” this morning to drop my daughter off.   The car is white but she explained, “I want this car to be gold when I grow up…and when I get my driving license.”

Monocular

We took my daughter to her pediatric ophthalmologist on Friday.   Typically their office runs behind schedule and we weren’t disappointed Friday to find ourselves waiting two hours after our appointment time.   The good news was my daughter made friends with three other little girls and I’m not sure I could have coordinated a more fun play date for her if I tried.    The bad news was my husband had to leave before we went back to see the doctor.

The title of this post is largely me feeling all down and sad about something I read in the doctor’s notes after our visit.   Medical notes are entered at the time of the appointment and/or afterwards and then I get an email letting me know notes have been added to my daughter’s file.

In this case, most of the notes were things I told them regarding changes since our last visit, current medications and the latest Dr. Trese status from our conversations with him.    What threw me off was my daughter being described as “monocular”.    But it’s true—she can only see with one eye.   I haven’t accepted it will be her ultimate vision though—I haven’t given up on the right eye, even though it can see light and shadow, a few colors, and minimal motion.    I just wasn’t ready to think of my daughter as having only one functioning eye.

That’s only part of what has me down right now though.   It’s a fearful kind of down—the kind you get when you don’t know if something is going to make things better or worse.    In this case, it’s about my daughter’s one functioning eye.  

It has a cataract.   This isn’t what we wanted, but hell, we didn’t want any of the other crap that’s gone on in her eyes so far—this is just the next thing.    Her lens is malformed, being round like a marble.   That’s not great, but at least it had been clear.   Now it’s clouding.   The clouding of a lens turns the lens into a cataract.   To correct the issue so the person will be able to see again requires removing the cataract (clouded lens).    Older people do this electively all the time as well as anyone of any age who has cataract surgery.

My daughter’s one good (functioning) eye will need to have the lens removed.   Dr. Grace and Dr. Trese are going to coordinate to pick the best time.   Here’s the trouble—it has to be done or my daughter will lose more vision.   But when it’s done, it could stir things up within her eye.   A low probability, but something to consider.   The other thing that will absolutely happen is my daughter’s vision will go from being refracted through a lens to something different.    I don’t know what that different vision will be, but it will be something she’ll need a different prescription for.

I’m scared though.   We have to do this surgery at some point, but what happens when my daughter wakes up?   The vision she uses to see her entire world is going to be changed.   We don’t know how it will change and what she will and won’t be able to see—at least at first.     The plan is to get her bifocal glasses so she can see both near and far better, but day one, post-surgery, who knows what she’s going to see.

I don’t want her to panic.   I don’t want her not to be able to see.   I’m worried, but I know it has to be done.   There is a possibility it’s a good step in getting her more functional vision, but today I’m just worried.   I have confidence in our doctors, it’s the situation that makes this so difficult.

The Big Boy Update:  My daughter really gets upset for no reason sometime.   I heard my daughter complaining the other day as she and her brother were getting dressed upstairs.   My son said to her, “you’re just trying to get me in trouble.”   I didn’t know he had figured out that was something she might try to do.

The Tiny Girl Chronicles:  My daughter’s overreactions to things is something we’re trying to get a better handle on.  Our music therapist suggested we focus on positive touch with her since she seems to get upset by the simplest of touches from her brother, or wall, or friend, etc.   I think it’s been making a bit of difference, we’re going to need more time to really evaluate it more though.

Poink

Children mishear or create words all the time.   Typically and most commonly we help them by letting them know the word they’re trying to say.   At this point my children are mostly confusing tenses in their sentences saying things like, “I throwed it to him”.   They’re fairly receptive to suggestions of word changes—children actually like to learn things and don’t get upset when they’re corrected.

Sometimes we hear a word that’s just funny or different and we can’t help but use it instead of the actual word.   My son loved motorcycles when he was tiny but for some reason pronounced the word, “mackamuck”.   My daughter called her diaper a “bah pooh” and pacifiers were shortened to “fassire” to name a few examples.

My daughter has a new word lately that seems to encompass a lot of things.  “Poink” means anything sharp that might her her.   It could be a needle for an injection or IV line, tweezers to get a splinter out or anything else remotely pointy and possibly painful.  

So we’ve adopted the word.  I told her yesterday when she went to the eye doctor, “there will be no poinks, she’s just going to look at your eyes.”   That calmed my daughter and she was happy the entire time we were at the doctor’s.   She doesn’t like poinks.

The Big Boy Update:  I asked my son where he got the Pokemon cards with dad the other day.   He said, “what’s that store with the red circle and dot?”   Ah, “that’s Target” I told him.

The Tiny Girl Chronicles:  My daughter has been sleeping without diapers for some time now.   She is prone to accidents if she’s not awakened once per night to go to the bathroom.    Tonight before going to bed she went into the bathroom and sat on the toilet.   She said, “what if I just sleep on the toilet?  Then I could just go whenever I wanted to.”  

Fitness Update:  We ran eighteen miles today.   We probably walked about a mile of the total because it was seventy-nine percent humidity and eighty-five-ish degrees.  The sun was beating down on us and even though we drank as much water as we could and ate Gu packets at every stop, it was a taxing run.

Bigger Than My Body

Something happened the other night in the middle of the night that reminded me of my childhood.   I had woken up around four in the morning and had nerve pain.  Some days are good, other days are bad.   As I lay there in bed, my arms had a burning feeling like a high-pitched, almost inaudible burn. I can’t explain it any other way.   The sensation isn’t stabbing, it’s not jarring, it’s not sharp.   The only way I can get close to explaining it is to compare the feeling to a high-pitched sound.   Crazy, no?

Crazy as it may be, that’s what it feels like and it’s irritating to deal with because it’s prevalent enough that I’m not going to be able to ignore it to go back to sleep.   I took some Lyrica—a medication that helps, is a non-addictive non-narcotic, non-side effect medication that really helps me a lot—and I lay there in bed, waiting for it to work.

As I lay there, not being able to get back to sleep I suddenly felt like my arms were huge.   They were enormous in my mind.   Perhaps this was because the amount of mental energy I had on them made them take a large portion of my focus.   It wasn’t scary or strange, it’s like when you stub your toe and for the life of you, the only thing your brain can see (and scream about) is that one little toe.

But back to this “bigger than my body” feeling.   I had a flashback from my childhood.  I think I must have been fairly young, under ten perhaps, when this would happen to me every so often at night.  Suddenly I would feel like my body was huge, swallowing me in its enormousness.   It was an overwhelming feeling and I didn’t know what to do about it.   I remember getting out of bed one time and meeting my mother in the hallway.   Explaining to her what was happening didn’t go over well, mostly because I didn’t know how to explain it and my mother didn’t know what I’d experienced.

She took me back to the bed and by that time the simple act of getting out of bed and focusing on something else had caused the sensation to go away.    I lay back down, told her thanks for helping and went on to sleep.

Today, I can’t explain it any better than I could when I was a child.   It’s fascinating though how a sensation forty years later can trigger sensations and memories from your past.

The Big Boy Update:  During music therapy today my son liked two songs which are sad.   He seemed to be connecting with them so Chelsea played them again.   They were “Bad Day” by Daniel Powter and “Horse With No Name” by America.  We’re going to play them on Alexa to see if he wants to hear them some more.

The Tiny Girl Chronicles:  During music therapy today my daughter noticed something different about Chelsea.   Typically, Chelsea keeps her hair up but she had her long hair down.   My daughter said to her, “you look different; can you put your hair back where it goes?”

Special Needs

No one wants to have a child with, “special needs”.   As parents I can tell you I’d love nothing more than two children who were “average” and “normal”.    What you want isn’t always what you get though.  

My daughter’s vision impairment has functional implications due to her lack of signs.  She has related psychological issues as she copes with the change in her vision and her the medical procedures she continues to have to endure.

My son is developmentally normal, but—and this is just my opinion—our reaction as parents to my daughter’s eye situation had repercussions with our son, mostly in how we treated and reacted to him.   Regardless of the reason, we’ve been doing some, “corrective maneuvers” to get him back on track to well-adjusted and that, “normal” word again.

My son’s personality factored into what he’s been going through and how he’s reacted to everything, but as parents, it’s hard to have the excuse, “I just didn’t know…”   Not that that’s not a great excuse, because it is, except as parents we kick ourselves for not knowing everything if it turns out something we didn’t know meant our children suffered.  

So we’re kicking ourselves in part for how we’ve handled things and we’re sad for the other parts we’ve not been able to control.   Regardless though, we’re dealing with what we have and we’re fortunate to have some wonderful people to help us.   Our children’s school has been tremendous.   They are continually willing to rise to the challenge of helping both educate us as well as provide the best possible learning environment for out children.

Our play therapist has been there to both help our children through things from their perspective and she’s been there for us so we can understand how to understand our children and what to do to help them.    Our therapist, teachers and curriculum coordinator are working together to provide the best environment and setting for our children to succeed.

We are grateful, very much so, for our friends, family and teacher who pointed out a need our children had so that we could help address it.   These same people who helped us see that need are also the ones helping us work towards solutions.    

And solutions we will have—and by solutions, I mean happy, well-adjusted children who enjoy being themselves.

The Big Boy Update:  Pokemon cards.  My son has some Pokemon cards.   He can’t read them yet, but he can remember them.   We got him another pack today, which you’d think he’d be happy about, but he wasn’t.   He was upset because the additional cards would be too much and he wouldn’t be able to fit them all into the old, leather wallet dad gave him.

The Tiny Girl Chronicles:  Our play therapist said today, “I was wrong” when we were talking about my daughter.   She is over-reacting to lots of things and we don’t understand why.   Dhruti agrees something is weighing down on her mind, she said it’s like worrying there’s a sword over your head and you’re not sure if it’s going to drop on you.   Dhruti is going to help us figure it out so we can help my daughter work through it.

New Grill

Tonight we went to our neighborhood pool to grill out.   This is something that’s been in the works for some time and today was the day.  

My husband is on the Board of Directors for our neighborhood.   They’ve been working on the details of getting gas grills installed at our pool for several months.  There were bids, legal advice, what to buy, where to put it, contractor scheduling, safety timers installed and permitting to be approved.   All of this took far longer than it would for you or me to go to Lowes, get a gas grill and a tank and stick it on our porch.  

Once the permitting was done this afternoon, my husband said we’d go confirm everything was working as expected so that an announcement could be sent to the neighborhood tomorrow.  

Good news, everything works.   Better news, the hamburgers, corn and grilled vegetables were great.

The Big Boy Update:  My son didn’t want to do something this morning.   I had explained to him it wasn’t a choice and that he could have the snack he was asking for as soon as he completed <typical trivial task children blow all out of proportion>.   He wasn’t giving up though and continued to whine saying, “can’t I just have some protein first?”

The Tiny Girl Chronicles:   Special Time, Music Edition.  My daughter likes music, dancing and singing.   She’s wanted to do Special Time lately and play the keyboard, trying out all sorts of songs, beats and sounds.   She likes to know what you think about her creations.   I tell her the truth, saying I like that part a little bit better than the last thing or that what she’s playing now sounds like a marching song, etc.   She loves trying out all sorts of things and is getting pretty good at variety.

Unwind Before Bedtime

Sometimes sleep becomes harder to achieve easily as we get older.   I’ve been fortunate so far in that it’s typically harder for me to stay awake than it is to go to sleep come bedtime but I know that’s not the case for many people.   My mother sent me a list of sleep behavior best practices today and when I read through it one of the tips caught my eye, because it’s basically my favorite time of the day each day.

It’s not that I don’t love getting up early in the morning to go for a run, or enjoy spending time with my children or savor eating a delicious dinner, because I like all those things (excepting that 5:15AM alarm), but there is one thing I look forward to each and every day—the last hour before I go to bed.

I’ve called it my, “wind down” time but I like the title they used in the list of, “unwind before bedtime” too.   My day goes something like this: get up, do day things, put the children to bed, do the things that need to get done after the children are asleep and then wind down.    It’s that last part of my day that’s sort of the reward for getting everything accomplished in the day.

Before I can start my end of night routine the children need to be asleep and I have to take care of my, “paperwork” or more correctly named today as, “electronic work”.   That involves handling emails and anything associated with it such as paying bills, filling out paperwork or surveys for school, scheduling sitters, coordinating calendars and of course, writing a blog post.    Once everything is done, then and only then can I go upstairs, run a hot bath and relax, saying a mental, “ahh” before getting into bed.

Sometimes I listen to an audio book.  Other times I do things on my iPad.  Commonly I do both at the same time, three things at the same time if you count that I do them while in the tub.   After I’m good and well relaxed, I get into bed and am almost sad that the day is over because once the lights are out (including the glowing light of my iPad), I can’t stay awake for more than a few minutes.

I’m glad I don’t have problems falling to sleep, at least at this point in my life.

The Big Boy Update:  My son has an ear infection.   He came downstairs last night and I gave him some Tylenol and this morning he went to the doctor’s for confirmation and some antibiotic.   In the bed last night he wanted to know if he could have a pretzel to put in his ear.   I think he thought he could make it feel better by employing a pretzel stick because a cotton swab might not be as helpful.

The Tiny Girl Chronicles:   My daughter wanted to confirm school was starting next week.   She got the red marker and went over to our calendar on the refrigerator so she could mark off yesterday and count the days until next Monday.   She sometimes does an X to mark off the day, sometimes she does an asterisk pattern and then other times—and I’m not sure why she does this—she marks off completed days by drawing a banana.

The Lucy Tree

My in-laws came into town today to help us plant what our children have named, “The Lucy Tree” in honor of our dog, Lucy, who recently died.   My Mother-in-law thought it would be nice to have Lucy cremated and then buried in the back yard.   My husband and I thought we should get something sizable enough to plant/place where we were burying the ashes so that it wouldn’t get overgrown by the wild growth in our natural area or cut down by accident by our yard crew when they cleared out the natural area from time to time.

Last week we went to a garden and plant store in the area and my son, for an unknown reason, honed in on a fir-type tree, hidden behind some larger trees, in the back of one of the rows.  He was decisive, he was confident—this was Lucy’s tree.   My daughter decided to hug the tree.   She hugged the prickly branches and decided she agreed with my son.    As for me—I loved the tree.

It wasn’t a typical tree.  It had grown with a curved trunk.   It was a fir tree, but it looked welcoming and friendly.   It was also a dwarf tree, only growing to six feet or so, which I think is rather appropriate for a long-haired Chihuahua who never weighed more than eleven pounds.

We brought the tree home with instructions on hole digging dimensions and some bags of soil to mix in with the clay we knew we’d be digging in.   We watered the tree and then waited until today to plant and bury ashes.

We all agreed on a spot just behind the play structure because any time the children were out swinging or playing, Lucy was always sitting in the shade under the structure, watching them and enjoying the outside.

The hole took a while to dig as the dirt had been well packed down by the heavy machine that did the final grading of our yard.   The dirt had mostly been from where our basement was dug out, having been pushed backwards to make our yard flat.   To keep it flat and reduce erosion, the ground had been packed down to a level of firmness I’d like to call “mean hard” after trying to dig in it today.

The hole eventually was dug and the tree was ready.   We let the children pour Lucy’s ashes in the bottom the hole and then stir them in with some soil using a trowel.   We planted the tree and talked about how much Lucy would be in our thoughts and how she was in a happy place now.   We said a little prayer and then everyone helped to fill in the dirt around the tree.   I love knowing Lucy will be with us in our back yard for years to come.

The Big Boy Update:  After the tree was planted and everyone was gone to get ready for lunch, I got this picture of my son, who didn’t want to leave yet.   He loved Lucy and he is a sensitive little guy, but there was also a trowel and a big pile of red clay.   I think he’d still be putting scoops of dirt on the tree right now if I hadn’t told him he had tom come in.

 
The Tiny Girl Chronicles:  My daughter was interested in the whole Lucy Tree process, but she didn’t really want to participate.   She delicately touched the ashes in the hole and was quite thoughtful throughout the entire time.

Rainbow

We’re getting the children back on a school schedule, having them go to bed at eight o’clock instead of later, whenever they’re tired.   We have one more week to go before the beginning of the school year and they’re adjusting without any complaints.     Tonight, after bath but before brushing their teeth my husband said, “hey, everyone, come outside to the front yard.”

The sun was setting but some impending rain clouds had caused the sky to turn a fierce shade or orange, making it seem like we were standing outside with heavily tinted sunglasses on.   There was a vague rain happening, that felt nice in the warm, summer evening.  As we looked around, we saw clouds of all different shades in different directions.    To the North was a band of clear, cloudless sky, to the South were dark purple clouds and above and around us were varying cloud formations from honey yellow to orange and pink in color.

As we looked backwards to the West we saw a rainbow crossing over the house.   My son and daughter were excited to see it.    We’re pretty sure my daughter saw it, but her visual confirmations are always up for debate—at any rate, she seemed to have seen it.

After my husband took a picture, we went back inside to brush teeth and head up to bed.   My children lay in their beds talking about what happens when rainbows are made.   And just so we’re all clear on this, my son is confident he made the rainbow.

The Big Boy Update:  My son told me today, “my favorite show is Cosmos.”  I asked him why and he said, “I like Cosmos because I can learn about outer space and people who are dead.”   (Most of the scientists talked about in the show are in fact dead, he’s right on that point.)

The Tiny Girl Chronicles:   I was talking to my children tonight while they were in the tub, asking them what they’d like to have in their narrative for the school family album.   I asked them where they lived, what food they liked, what their parent’s names were, etc.   When I asked my daughter if she wanted to tell her friends about me she said, “Mommy does work…um…Mommy decided everything.”

Fitness Update:  On our girls weekend out of town we decided to go for a walk this morning before having brunch.   We strolled over four miles as a group, talking and looking at the old houses around us before going back to the hotel to dive into our big meal of the day.

Girls Weekend

I’m leaving for a girls weekend out of town in five minutes so I have to make this quick.   We worked on finding a weekend that would work for four of us months ago and our weekend has finally arrived.   There will be a massage (which I’m looking forward to after a long run this morning), lots of chatting with my three good friends, a fun dinner out and—my favorite—a big brunch tomorrow morning.

The main part I’m looking forward to is spending some time with my girlfriends.   My thanks go to my husband for staying home and watching the children all weekend.

The Big Boy Update:  My son told me the other day, “I’m thinking of a rectri.”  I asked him what that meant and he said, “it’s a rectangle and a triangle.”

The Tiny Girl Chronicles:  My daughter likes it when our car goes, “super zoom”.   She asked dad the other day, “do you think you could surprise us with super zoom?”  My husband said, “very possibly”.   She replied, “what does that mean?”   He said back, “it means ‘yes’”.

Fitness Update:  In training for our marathon in November we ran sixteen miles this morning, starting early, so we could head out for our girls weekend.  I’m tired, but since I’m not driving I have a nice ride to recover followed by a massage, which is going to be very welcomed.

Food Color Fail

I have a complaint.  I know, I’ve said it before and I try very hard not to make this blog an avenue for venting, complaining or ranting, but I’m perplexed and I have to talk about it.    This is about food coloring.

I’ve used food coloring as long as I can remember to color all sorts of things from baking to science experiments.   When I was little we had a small, rectangular box with four tiny bottles with red, blue, yellow and green food coloring.   We would get a new box every few years when we’d run out or low of one or more of the colors.  

Today, in my pantry, I have one of those very same food coloring boxes with the same four colors inside.   What I’m frustrated about is the packaging.   The lids on the bottles narrow to a point at the top and are subsequently hard to get out of the box.   If you can get one bottle out, the rest are easy, but since I typically only want to use one or two of the colors, I don’t just dump the box.   That, and I’ve had lid accidents and spilled food coloring is no fun to clean up.

Once you have two or more of the bottles out, getting them back into the container is another trick.   They used to be completely round (I think) but now they have truncated sides so the only way to get them all into the box is by rotating them so the sides touch.   Then there’s the problem of one falling over and laying down into the box while you’re trying to get them aligned—which necessitates starting the whole alignment process over again.

With all the innovative advancements in packaging that’s happened in the forty-some years since I’ve been using those little food coloring jars, why hasn’t something been done to make them a joy to use instead of a frustrating experience?  

The Big Boy Update:  My daughter has taken to naming her stuffed animals.   For a long time my son didn’t like stuffed animals at all, but of late he likes to collect them and have them piled in his bed.   The other night we had a sleepover with Gavin, my son and my daughter all sleeping in sleeping bags in the bonus room.   My son said he needed to go get some stuffed animals and ran into the bedroom. I followed him, telling him he could only have five.   As he made his selections, he called out their names—names he must have given them—which I hadn’t heard before.   He chose, “Syrup” the brown dog, “Blackout” the monkey, and “Pedipaws” the lemur to bring back to his sleeping bag.

The Tiny Girl Chronicles:  My daughter likes to get the mail.  I asked her if we got any bills when she brought the mail inside and she said, “what are bills?”   I said, “things you have to pay money for.”   She firmly said back, “that’s boring.”  

Tea Parties and Guns

There are some things that just seem to be nature and have nothing to do with nurture.   Having a boy and a girl brings this point home again and again, regardless of what we do or don’t do.    My daughter likes to engage socially, play games, have conversations, make connections.    My son likes sticks, projectiles, weapons and fighting.    We don’t encourage either of them in one direction nor have we tried to unnecessarily squash their natural tendencies.

As someone who never was into fighting or weapons, I don’t get it personally, but I remember the friends from my neighborhood who were boys from my childhood.   I never understood why Rob was so excited about getting the whale harpoon to hang on his wall or the lure of throwing shurikens into the wall of the garden shed was such an exciting thing for the boys, but they all seemed to love it.

My son and daughter get along well—until they don’t.   They seem to genuinely care for each other most of the time unless they’re in the middle of a disagreement.   The other day they each had a friend over to visit, my daughter, another girl from her class, and my son, his friend Gavin, who came to spend the night.    During that time the girls were off doing things that made them happy—which involved a lot of giggling.   The boys were busy being loud and jumping around, yelling and brandishing weapons at each other, declaring super powers and proclaiming domination over the other.

Later in the day when their friends had left to go home I came up to find a tea party set out on the bonus room table.   It would appear from the picture below, one of the boys had attended the tea party I’d seen the girls setting up earlier.   See if you can guess which seat he sat at:

The Big Boy Update:  At bedtime last night my son got into his bed, pulled the cover up to his neck and said to me, “do you know why I have tears in my eyes?”  I told him I didn’t know, was he feeling sad?   He said, “because I’m bored because Gavin isn’t here anymore.”   Gavin is a fun friend to have around (and at nine, my son looks up to him quite a bit).   I told him there was good news: Gavin was coming back in two days to visit again.

The Tiny Girl Chronicles:  My daughter and I were playing a game this morning for “Special Time”.   We’d spin a spinner and have to count the spaces until we reached the next cow or pig or tractor, etc.   I’ve noticed before she gets off with the numbers, but I thought it was her inability to see the board well.   This morning though she was always consistently one off, starting at the beginning of the counting.   I realized she was counting the space the piece was already on.   I tried explaining how you didn’t count that spot, you started with the next space.   She didn’t seem to get that explanation, which I thought was fairly straightforward, so I tried a different tactic.  I told her if she wanted to count the current position, she could start with zero and then one, two, etc.   That, she got and had not problem understanding.   The remainder of the game she counted every move correctly.

Ding, Ding, Ding…Kah-dunk

Have you ever had sounds you don’t realize you appreciate until they’re not there anymore?   The general hum of your house air-conditioner blower running…until it breaks down.   There is a sound our refrigerator makes I never really noticed until the power was down for a day over the winter.    Then there are other sounds you come to rely on—this post is about one of those sounds.

We have an alarm system in the house which has the “external door chime” feature turned on.   This means whenever anyone comes in via a door from the outside, we hear three quick dings.   It’s helpful because you can be anywhere in the house and know someone has just gone in or out one of the doors, even if you’re on the second floor and the door in question was in the basement mechanical room.

If the only one home was my husband, this might mean he’s headed off to work.   If we were expecting my parents to arrive, it probably means they’ve come to the front door and have come on in.   It’s just three beeps, but it tells a lot of information.   We had to turn the chime feature off for a week at one point while a faulty sensor was replaced and I felt lost, not knowing if people were coming in our out of the house.

Now that we have children, there is another sound I listen for, especially in this hot weather.   I hear the, “ding, ding, ding” and then I listen for a, “kah-dunk” that means the child or children have shut the door behind them.  Lack of this sound could mean air-conditioned air hemorrhaging out the door for what could be hours if no one was near that particular door.

Only this afternoon my daughter and her friend decided to tie a single blanket around their waists so they would be connected.   They navigated down two flights of stairs carefully into the basement to go outside—because when you’re connected together the logical thing to do is go swinging.   I heard the ding, ding, ding but no subsequent kah-dunk.   Sure enough, the door was wide open when I looked down.  

My children are great about closing the door, as are all the neighbors’ children because we constantly remind them, but there are the exceptions.   In this case, they couldn’t figure out how to turn around together.

The Big Boy Tiny Girl Lucy The Dog Update:   As I was putting the children to bed my son asked me when we were going to bury Lucy’s ashes.   We’ve decided we need to mark the spot with a larger  bush or sapling so the yard crew won’t cut it down during the “semi-annual backyard natural area beat back”.  Tomorrow we’re going to go to one of the garden stores and see what we can find.

Sleepover

We have some friends from out of town visiting the area for a month.   They’re from here, but have taken to traveling on the road as a family for both work, school and general enjoyment.   We’re always happy to hear when our friends and their home on wheels is due to stop in for a while.

Today we got together for dinner and a movie.   The movie was seen by the two husband’s while the dinner was had by my the rest of our two families.   My children grew up playing with our friend’s children and whenever they come around, even though their three older children have grown and matured since we last saw them, everyone seems to pick up where they left off and gets along well playing.

Their son, Gavin, is spending the night with us tonight.   My son may well be Gavin’s number one fan, but my daughter thinks Gavin’s pretty great as well.   For bedtime we decided to put the three of them into the bonus room in sleeping bags.   We tried this some months ago when my daughter vision impairment was relatively new and it was hard for her—she wanted to interact with Gavin in one, very physical and less-mature way while my son wanted to be cool and do the things Gavin wanted to do.

This time (so far) things are going quite well.   Teeth have been brushed, sleeping bags have been agreed upon and sleeping arrangements weren’t argued over (Gavin in the middle, of course).   They’re not nearly asleep yet, but barring overly-tired children conflicts, I suspect they’ll fall asleep within the hour.  I hope they’ll fall asleep within the hour?

The Big Boy Update:  My son has been a lot more gracious and courteous of late.   We were at an indoor arcade/family fun center with Uncle Bob and Uncle Brian and as we were leaving there were a lot of people moving rapidly around the front entrance.   I looked back to see my son reach out to grab his sister’s hand so he could escort her safely through the crowd.  We have never once asked him to do this before and I was so proud of him for thinking of her.

The Tiny Girl Chronicles:  There is a possibility my daughter has a specific distance at which she can see better than others.   We’ve noticed she is able to tell a lot more about certain things (say what’s on the television) from a medium far distance like at the back of the room, than at other ranges.   We’re not sure if this is accurate intel or not, but we’re continuing to collect data.   If there is one distance, possibly we can correct with glasses to increase the range in which she can see with something like trifocals or progressive lenses.

Fitness Update:  I ran five miles today, barring the bit where we had to walk for what was not technical or injury-based reasons.   There were neighbors that needed talking to and dogs that needed to be said hello to and several other things that made it less than a full five-mile run.   We intended on seven miles but gave up when we ran out of time.    That being said, it was good to see some of the neighbors I hadn’t had a chance to catch up with in a while.

Allergies

My son is allergic to peanuts.   He was allergic to lots of things when he was very young, so many things in fact our pediatrician just told us what to avoid more than other things because avoiding everything would have been quite difficult.

My son grew out of almost everyone of the allergies with the exception of cats (which my mother and I have) and peanuts.   He doesn’t have difficulty breathing, he just gets very itchy and in bad cases, breaks out in hives.     Tonight was one of those bad cases.

We were at dinner at a Japanese restaurant—my children’s favorite—for my father’s eightieth birthday.  My husband ordered Satay Chicken and it apparently looked good because my son reached out and asked if he could have one of the skewers.   He didn’t have an immediate reaction, but fifteen minutes later the arm that reached for the chicken (and likely touched the peanut sauce bowl in the process) was getting itchy.   It got hives and he was transferring the itch to his neck and other hand.   Benadryl and Calagel was called in from the car and we headed home for a thorough bath.

He’s fine now, and was fine all along, other than being very itchy for a period of time.   On the way home my children talked about it in the car.   My daughter said, “I know you have allergies, but I don’t know what that means.  I know it means you can’t eat peanuts.”  My son replied, “it means something bad happens.  I touched something and I got bumps.”

The Big Boy Update:  We were at a restaurant the other day that served calamari.   Several of us were asking Papa if he was thinking about ordering some as we all were going to help him finish it if so.   My son, who has a newly discovered love of calamari said to the table, “I only like the kind of calamari in New Jersey…and everywhere else.”

The Tiny Girl Chronicles:  Before going to dinner tonight my mother suggested everyone go to the potty first.   She went to one of the bathrooms and my daughter followed her.   Shortly later I heard her calling out for a wipe.   As I came in she said, “Mimi can wipe herself.  I like it when people wipe me, though.”

He Feels Like He’s Being Understood

My son’s behavior has begun to change fairly drastically.   He’s saying nice things, he’s sharing, and he’s not trying to attack people when it’s not appropriate or wanted.  I’ve said it before, but I think it’s more and more how we interact with him as opposed to things we’re expecting him to change.

As we use different phrases than we had in the past when addressing a negative behavior, we’re seeing a change in how he responds.  He is remembering our advice such as, “If I came over to someone’s house and they closed the door in my face, saying, ‘I don’t like you, go away’, I would be sad.  I wouldn’t want to be friends with someone who said that to me.”   He’s remembering that and changing what he might say to a friend when they come to visit—even if he was busy with something else and didn’t really want to play at that time.

The changes are both subtle and significant.   My son is turning into a kind little guy.    We still have work to do, but I am continually impressed with the difference we’re seeing in such a short period.

The Big Boy Update:  I have mentioned my son’s first love, Madison, who is also the girlfriend of my nephew, Kyle, who is a freshman in college.    Madison and Kyle are visiting overnight on their way to Florida for the start of the school year.   My son came over to me and whispered, “I want to brush and floss my teeth so my breath doesn’t smell bad for Madison.”

The Tiny Girl Chronicles:  My daughter came over to dad after having her dinner served to her and told him, “dad, I really like the chicken, but I don’t care for the rice.”

Fitness Update:  My best friend and I ran in the park today in ninety-four degree weather.   We ran for fourteen miles.   We drank and drank and drank at each water stop and I still lost three pounds in water weight over the course of the run.

Annual School Pictures

We had a photo session this evening with our photographer to get family pictures before the start of the school year.   We met in what seemed like an unlikely location: beside an abandoned white building and shed in tall grass near trees—at 6:30PM.  

My children were cleaned, their hair was done and my husband and I had even gotten into more than our typical summer casual clothes.   We met our photographer and her assistant and trudged through the tall grass to a partially cut section where we sat down and “got close” for the first set of pictures.

My daughter got upset about three minutes later because her legs started itching and she was highly agitated.   Calagel was applied and she calmed down once her shoes were off.   I was afraid she had some sort of allergy but I think now it was just the grass tickling and irritating the heat rash she already had on her legs.

We did several other photo configurations and then I got bit by something black and small that held on and looked ant-like.    I got several bites before I could dislodge it, mostly because my daughter was hanging on my leg at the time and my first two swings missed.     We moved locations and after doing another three or four group and single settings, we finished up and headed to dinner.

It looks like the pictures are going to turn out better than I’d hoped they would.   Getting my daughter to do a natural smile has been tough because she has learned to present the fake, “cheese!” smile when asked.    Deanna, our photographer, had some tricks that got her real smile out.

My son was very natural and photogenic today.   He doesn’t mind pictures, but he doesn’t play to the camera like he did today.   I’m looking forward to seeing the pictures in a few weeks.  

The Big Boy Update:   My daughter was cold at dinner.   For some unknown reason, in the ninety-four degree weather today, my son wanted to wear his San Francisco hoodie Aunt A gave him.    He was wearing it at dinner and when he realized his sister was cold he offered to let her wear it.   He helped her put it on and even helped her zip it.    What a guy…

The Tiny Girl Chronicles:  We were packing up to go to the pool this afternoon, getting ready to leave in short order.   My daughter thought she must have missed a departure call because she said to me with a sad note in her voice, “oh no, they forgot to bring me to the pool.”

Music Lessons All Around

The Big Boy Music Therapy Update:  
My son had his first music therapy session today.   He has been offered the opportunity before but hasn’t shown much interest.   Last time Chelsea was here he wanted to be involved with his sister’s session and said he would be interested, yes, now that he thought about it.

Today was his first session, following his sister’s.   Shortly before I reminded him about it to find out he was absolutely, positively not interested in singing songs.   No way.  No how.   He told me, “I’m interested in science.”   I suggested they could sing a song about the planets or maybe he could play the guitar and learn how the different strings made different sounds.   He didn’t buy it at the time, but when it was his turn, he came upstairs and shyly sat on the floor in front of Chelsea.

When they were done, Chelsea told us how things went.  He, unlike my daughter, is very interested in talking about his feelings.   He said he wanted to do a sad song because he had been feeling sad since Lucy had died.   They sang a sad song and my son told Chelsea about all the things Lucy did in our family.  He told her about how we had Lucy’s ashes (in a box he wasn’t allowed to open) that we were going to plant to grow a new Lucy.    Then, they moved on to other songs, including I believe a dinosaur-themed song.

My son and daughter both handle their feelings differently, my daughter not easily sharing hers, with my son ready to tell how he feels if you ask in just the right way.

The Tiny Girl Chronicles:  As we arrived home from the pool this afternoon I told her I saw Edna’s car in the driveway and that she must be here cleaning.   My daughter said, “Edna is so annoying!”  I said in a hurt tone, “oh dear, that doesn’t sound like a kind thing to say about Edna.”   My daughter, seeming to complete her initial thought, said, “when she does the vacuuming and makes all that noise.”

She “Saw” The Movie

We went to a movie yesterday.   My daughter was not interested in The Secret Life of Pets and didn’t want to go.   We thought it was mostly because she couldn’t see the screen and knew it wasn’t going to be fun for her so she was declining the invitation.    After lunch with friends we did take her and I had hopes she would be able to listen to the movie, supplemented by me whispering what was happening visual-action-wise for parts she couldn’t see.

This plan did not pan out.   We had a large group in a very small theater and our reclining seats took up one full row and portions of two other rows.   My daughter spent the majority of the movie going back and forth between our two seats and dad’s seat, bring popcorn back and forth, getting a new view of the screen, sitting down but being fidgety and basically not watching the movie in any way.   Fortunately, the elevation across the rows of seats made this something she could do without bothering anyone who was actually watching the movie.

About three-fourth’s the way through the movie she told me she had to go to the bathroom and I decided it was time to take her out of the theater for the remainder of the movie.   She didn’t complain, she got in the car with me and we went to BJ’s two buildings down and mostly browsed until the movie was over.

I told my husband we weren’t going to try that again and he agreed.   Then, tonight at dinner with Uncle Bob and Uncle Brian, the movie came up.   Suddenly my daughter started talking about the movie.   She explained about the characters, what had happened, how they went into the sewers and about the big brown dog who was bad.   She didn’t know he turned into a good dog by the end of the movie because she didn’t get to the end.

Was she listening intently the whole time and keeping her body busy by moving around and doing other things?   It certainly seemed like she understood what had been going on.

The Big Boy Update:  My son was sitting at the dining room table working on a Lego model.   It was fairly evident he needed some help a little later when he called out, “calling all dads, calling all dads”.

The Tiny Girl Chronicles:   We don’t really know what my daughter can see far away.   Sure, a movie screen is big, but it’s also distant.   Can she make out much or does she do better with things in close proximity?   She doesn’t seem to particularly enjoy movies at a theater, but she loves watching them on her iPad at very close range.

Fitness Update:  I ran ten miles today—I know, I’m shocked too.   It was a nice run, although slower than even I usually run.   It was humid and hot, even though we started at 5:45AM and I lost a lot of fluids.   To run any further I’d need a water stop or two.

Two Marathons

I signed up for the Las Vegas marathon again this year on account of last year’s being so much fun with family members and friends coming out, some to just be together and others to run races from 5K to marathon in length.  I’m looking forward to November when I’ll be in Las Vegas again for the race.

My running buddy and I decided to run a second marathon—don’t ask me why—as well this fall and at this point we haven’t done any training or running much since the spring.  

Starting tomorrow we’re going to make an effort to see how much training we need to do before November.   We may be able to go out and run eighteen miles right now, but I think it would be more challenging than fun.    Training up shouldn’t be hard, it just takes time.

Tomorrow morning we’re running ten miles to see where we stand fitness-wise.

The Big Boy Update:  My son hit my daughter this evening because she did something he didn’t like. Gavin, his friend about twice his age, hit my son in response.    My son was quite angry, coming downstairs and asking dad, “can you delete all the days that Gavin and his sisters are here?”  

The Tiny Girl Chronicles:   We tried taking my daughter to a movie again today.   It just doesn’t work.   She didn’t really want to go, but we had hopes she could at least try to see the big screen.   She spent half the movie walking back and forth between seats, delivering popcorn to one of the other eleven people with our group.   When she wasn’t doing that, she was playing with the reclining seat buttons or talking to me.   She wasn’t particularly upset, she just wasn’t able to enjoy the movie.

How Are The Kids?

Any time you see or speak with someone after not being in touch for a period of time the typical thing people ask is, “how have you been?”   If you have children the second thing they usually ask is, “how are the kids?”  This is an innocuous question, meant as a general conversation opener that’s open-ended enough to invite any sort of response on what’s been happening since you last spoke.   It’s a good question, but it’s become a question I hate.

For a family with healthy, normal children it’s easy enough to say, “we’ve been doing great” or, “not much has happened around here”.  But when you have a child who’s going through a dramatic, life-changing medical situation such as losing ninety percent of their vision, the question that usually comes next is, “how is your daughter doing?”   Again, a good question.   A question that says the friend or family member cares and wants to know how things are going—a hopeful question for good news or at least progress.    The thing is, I hate that the question needs to be asked.

I never mind telling people the latest status, what the plan is from our doctors, what might or might not get better.  In fact, I like letting people know the latest news if it’s something they’re interested in hearing about.   I’m fairly good at doing a summary speech and then delving into details if the conversation goes in that direction.    But I wish it wasn’t necessary; I wish it didn’t need to be asked; I wish I had two healthy children living medically boring, normal lives.

We don’t always get what we wish for though.  So much as I hate the question, I’m glad people care enough to ask.

The Big Boy Update:  I mentioned a while back that my son loves the show Cosmos.  He was watching it last week, learning all sorts of things about the planets and our solar system.    When we took a break for lunch he asked me, “Can I not go to school or camp any more because I'm watching Cosmos and learning things?"

The Tiny Girl Chronicles:  We may be going broke.   The problem is the fountain at the mall.   When my daughter is in Detroit her favorite thing to do after a procedure or office visit is going to the mall. Once there, she wants to throw coins into the fountain from different spots (it’s a big fountain).   She even drops coins into it from the balcony on the third floor.  I think she could happily throw coins into the fountain for hours on end.   If this keeps up, we’re going to have to invest in a penny farm and hope for a good crop this year.

Post EUA Update

My daughter was scheduled for eye surgery today.   Before taking her in, my husband talked to Dr. Trese who told him his plan was for one of three things which would be based on the pressure in her right eye.   Initially her right eye had been at zero pressure (very bad).  Over time came back to eight or nine (somewhat low, but okay).   For today, if her pressure was normal (or over thirteen), he would remove both the PFO and the Silicon Oil which has been in her eye since December.   If the pressure was almost normal he might only remove the heavy substance (PFO), but if it was low, he was going to leave things as is.

Note that the title of this post isn’t “Eye Surgery” but instead is, “EUA” for “Evaluation Under Anesthesia”.    That’s because when Dr. Trese got into the procedure he found her eye at a stable eight so he left it as is and didn’t do any surgery.    What does this mean?   It doesn’t mean anything bad as far as the substances in her eye as he’s had patients with Silicon Oil in an eye for decades without an issue.   So, on the substances front, we wait again for their removal.

Her eye pressure isn’t increasing, which doesn’t mean it won’t eventually, but it does mean her ciliary bodies aren’t functioning normally—something we knew.   The ciliary bodies produce fluid in the eyes.   Glaucoma is typically when fluid is being produced but isn’t draining properly so fluid increases and pressure goes up.   In my daughter’s case, he suspects that the initial insult to her eyes was damage to these ciliary bodies and that started a cascade of events in her eyes, leading to her current state.

How does the rest of her right eye look though?  The retina is attached, the optic nerve looks good, the eye itself hasn’t changed anatomically in any way for the worse.   But there is the problem of her not being able to see in the eye though.   So, what’s the situation there?

That’s a tough one.   Her retina being attached doesn’t help if there aren’t visual signals being sent from the rods and cones to her optic nerve to her brain.    The regeneration of the rods and cones (if it was happening, another unknown) should have taken place over the course of the first four months.  But it’s how long will it take for those rods and cones to start fire that’s the unknown.  Dr. Trese said we may be early on, citing one case that took years.   The key word there is “may” be early on.   We may have an eye so damaged that fantastic anatomy or not, just isn’t going to ever see more than general light some basic large motions.    But that’s a story that’s not finished yet, so we’re waiting on that front too.

Let’s get to the left eye though, which has marginally good news and some likely bad, although not catastrophic news.   For the good news, yet again, it looks a little bit better.   The pressure in the left eye is fully normal and has been for some time.   The retinal folds are still there but may be slightly less.    Without overt action to flatten them though, they will probably remain as is.

The bad news is she’s developing a cataract in her left eye.   The lens is partially clouded already and Dr. Trese wants us to work with our pediatric ophthalmologist on addressing the cataract.   We have an appointment in two weeks to talk about plan.

What does the cataract mean?   It means her natural lens is clouding.  It happens commonly as we age and many, many people have cataract surgery each year.   The surgery would remove her natural lens, leaving her field of vision clear.   The only problem (and this is my problem, not something the doctor’s have said) is we can’t replace her lenses with artificial lenses because her eyes are congenitally too small and probably won’t become large enough as she grows older as eyes grow very minimally after birth.

Why are lenses important?   Because glasses or contacts provide a fixed focal length.   There are tri-focals and progressive lenses that do more than one focal length, but an artificial lens focuses from near to far effortlessly, and there’s just not a solution that’s quite the same.   Again, wanting artificial lenses is my thing, which may be faulty because I’m not an eye doctor of any sort.  

There is one thing to consider though about the removal of her natural lens—it’s sphereo-sphakic, meaning like a marble, like a ball.   Lenses should be almond-shaped.   Think of a flexible almond and how that could be bended by the eye to focus near and far.   It’s a lot harder to focus a marble—it just doesn’t bend as much.    So perhaps removing her lens could be an overall benefit to her vision.  We’ll know more after we see Dr. Grace in two weeks.

And about that left eye’s retina—the one with the folds still in place—what’s the long-term plan there?  Dr. Trese isn’t sure yet.   There’s a possibility that any action taken to the retina will disrupt the vision she has now or it may leave large blank gaps in her vision.   It could also help tremendously, it’s just a huge unknown.

For now we’re going to work on the cataract situation and see Dr. Trese again in three months for another re-assessment and plan update.

The Big Boy Update:  I can’t remember if I wrote about this before, but even if I did, this is something my daughter has randomly and unexpectedly said on more than one occasion: “When I grow up, I want to be a tooth fairy.”

The Tiny Girl Chronicles:  My son and I are home alone for two days while my husband and daughter are in Detroit to see her retina surgeon.   Each time I ask him where he wants to go for lunch or dinner he thinks for a minute and then says, “I think I just want to eat in.”   He clearly takes after his father in this respect.

Surgery Tomorrow

My husband and daughter are in Detroit today for another surgery on her right eye in the morning.   The plan is—if everything looks good—to remove the PFO and Silicon Oil from her eye and replace it with Healon.   The substances they’ll be removing have been in her eye since December and are non-permeable, meaning they don’t leave the eye and would remain there permanently unless removed.   They were there there to help flatten the retina back down, which they’ve done successfully.    The Healon is a permeable substance and will hopefully over time be replaced by her eye’s own naturally occurring fluid.

That’s the plan, but what does it mean for her vision?   Not too much, really.   We’re not going to have a change in vision after tomorrow’s procedure.  What we’re waiting for is to see if her eye will begin to see.   We were told it took up to four months for rods and cones to regenerate, but that time has passed already by a number of months.   What apparently can take longer is those regenerated cells to begin to fire and make visual signals the brain can see.   At this point it seems as if her eye hasn’t regained much, if any, vision yet.

We were told by her surgeon that we’re still early on in the whole process, so we’re holding on to see if the eye will begin to perceive more.    The next question, which we’re asking tomorrow, is what is the plan for her left eye.   So far, nothing has been done to it.   It has returned to normal pressure from effectively zero pressure, but the folds in her retina remain.   We were told the longer we wait to take action on the left eye, the more likely the damage will be permanent.   However, taking action on her left eye has a chance of disrupting the remaining vision she has, which is why the consensus from her doctors has been to wait and see if we can have some of her vision return to the right eye.

Tomorrow I’ll have more information based on what Dr. Trese sees and on Wednesday my husband will have more time to talk to him and ask questions at her post-op office visit.   So don’t change the channel, folks, I’ll be back shortly with more news from Detroit.

The Big Boy Update:  My son brought his iPad over to me this morning and proudly showed me a picture.   I saw a picture of what looked like a bracelet taken on the carpet but I had no idea what it was until he told me.   He had made a bracelet out of the leg portions of Lego men and then gone and gotten his iPad to take a picture because he wanted to show his friends later.   He was so happy about it he took about thirty pictures.

The Tiny Girl Chronicles:  My daughter can’t see things around her, so she has to go on memory for the most part.   She had something the other day and I asked her where she wanted me to put it (it was a bracelet I think) and she said, “mom, I’ll put it in my secret place.”   I didn’t know she had a secret place so I asked her about it.   She told me it was an unused drawer in her dresser and she hid things there because her brother never looked there and wouldn’t find it.   “Smart thinking”, I told her.

The Porcupine

Tonight I was coming down here to write my blog post and I walked past the dog bed we kept for Lucy beside our computer desks.   It’s a small bed she rarely slept on, but it had another job it did well—it was the holder of the porcupine.

Many years ago when Lucy was very young my ex-husband and I went to Las Vegas, something we liked to do with friends frequently, and he bought her a porcupine.    This was no ordinary porcupine—it was from FAO Schwartz.   I’m not sure why my husband wanted to buy this particular item, but it became the one and only toy Lucy was ever passionate about.  

It was a hand puppet.   The entire porcupine was furry, with the porcupine “spikes” longer tufts of some fur-like material.    Over the years I expected the spikes to flatten out or lose their fluff but they remained through washings and years of play.

Lucy only was interested in the porcupine when it came alive—something that required a hand in the puppet.   The minute you got down on the floor and put your hand inside the puppet Lucy would get all animated and excited.   Making the porcupine move around like it was trying to escape from the dog only made her more excited.   She would run forward and bite at the nose, never hard, and then back off, waiting for more.

She knew it needed a person to make it come alive so on a nightly basis she would pick up the porcupine, bring it over behind our desk chairs and look up at us, barking once to let us know she was ready to play.   It was the only request she ever really had to play with any toy, but it was clear her love for the porcupine was strong.

Tonight I’ll take the porcupine upstairs, along with some of her other things and store them in the attic.    She loved the porcupine right up until the end, asking to play even when she wasn’t able to breathe well and got tired quickly.    I don’t think I could get rid of the porcupine, old and worn out as it is.   It’s a happy reminder of the fun we used to have together with Lucy.

The Big Boy Update:  My son has been working through the loss of the dog by telling people.   He saw our neighbor outside today and ran out, telling her, “Lucy died but we’re going to bury her ashes in the back yard.”    When he found out she had died yesterday he wanted to call my mother, Mimi, and tell her himself.   Mimi and Gramps were very kind to him on the phone, saying they understood and knew we would all miss Lucy greatly.

The Tiny Girl Chronicles:  My daughter got her harmonica this morning and was playing on it upstairs when she encountered my father-in-law, Papa.   She said to him, “this is a sad song”, playing it perhaps because of the loss of Lucy.   She played the song for Papa for a bit and then said, “this is a happy song” and played him something else.    She’s also working through her feelings in a way she can make sense of.

Sad Dog Day

We decided to stay one more day on our vacation visiting my husband’s family.   We also got to see my sister-in-law from San Francisco the whole week too, which was very nice as we don’t get an opportunity to see her nearly as much as we’d like to.   During our vacation, my mother- and father-in-law were taking care of our dog, Lucy, and making sure she had the happiest week she could have, given her declining health.

We knew Lucy’s heart was in danger of failing at any point.   We knew the five medications we had her on were prolonging her heart while damaging her kidneys in the process.   We were giving her pain medication to help make her comfortable.    But when your heart has grown out of proportion and you can’t breath because your chest cavity is filled with your heart, there isn’t much to be done other than make the best choice about when it’s time to put her to sleep.

My mother-in-law called us this morning saying Lucy had taken a turn for the worse, rather quickly, and had a very bad night.   She had called our veterinarian and made an appointment for this afternoon to get their advice on her condition.  While we were in the car on our long drive home, we talked to her at length about what was happening with Lucy.    It didn’t sound good.   She sent us a video and Lucy looked awful, unable to lie down and panting rapidly.   She wasn’t eating, she wouldn’t take medicine.

We all agreed it was time.   We wouldn’t get back to town before Lucy was put to sleep, but I felt strongly that this wasn’t about us getting a last chance to see her, this was about making the right choice for the Lucy.

That was the plan: a three-thirty appointment with the veterinarian and a decision to be made while we drove home.   And—and this is the most important thing—a mother-in-law who was willing to do anything and everything for Lucy, including making the difficult decision to put her to sleep and holding her while she died.

About an hour later we got a call.   Lucy was in distress—bad distress.   We said to go now to any local vet in their town because this was the end and there was nothing more we could do other than end her suffering painlessly.    As we were talking, Lucy must have had a heart attack or a seizure or both because she died while we were on the phone.

Her suffering wasn’t long, which is a goodness.    We had discussed taking her to be put to sleep before we left for vacation, but she seemed fine then and could have possibly lived for several more months happily.   Should we have made the decision sooner?  I don’t think so.   I think my mother-in-law did everything she could and made the best decisions on how to take care of Lucy.    We are very grateful Lucy had someone so loving and caring to be with her through the end.

We’ll miss her very much.   We’ve told the children Lucy may not make it and she might die before we get home.    They both got very upset and didn’t want her to die.  They each death with the news in their own way.    Now that Lucy has died, we’re waiting to tell them until we get closer to home.   It’s going to be sad, but Nana has suggested we cremate Lucy and have the children bury the remains in the back yard.   They both liked the idea, even if they hated the thought of Lucy not being with us anymore.

The Big Boy Update:  My son does not want Lucy to die.   He dealt with the news with problem solving suggestions.   He knows her heart is not well.   He suggested cutting a hole in my stomach to remove my heart and then do the same in Lucy, swapping the hearts so Lucy could have a heart that works.    After hearing that wasn’t a workable solution he suggested cutting out Lucy’s heart and burying it in the back yard so we can grow another Lucy.   He was quite sad.

The Tiny Girl Chronicles:  My daughter, upon hearing Lucy might not live through the day, broke into a wailing cry that went on and on for some time.   She was upset, saying she didn’t want Lucy to not come back.   Then, interleaved with all the crying, she would say, “when are we going to get another dog?”   She is going to be very upset to hear Lucy has died.

Hell Hath Frozen Over

It is quite possible hell is freezing over as I type this because I decided to do something today I have not only no interest in doing, I have an big aversion to doing.    To give you a hint, it’s sports-related. I am just not into sports.   If you like sports, have a favorite team and player, you go, I’m all for it.   Following sports teams just never appealed to me.

My nephew has been bothering us for several days to have a family Fantasy Football league.   This is the hell freezing part.   I know nothing about football, which makes picking players on a make-believe team I manage, including players I’ve never heard of a recipe for utter embarrassment and failure.

Not so, says Kyle (and everyone else in the family in the room with him).   It’s easy peasy.   You don’t even have to do anything, it’s all automated and if you don’t pick a player, the ESPN system will make a good selection for you.     After that, for sixteen weeks, you see if your selected players do well during the season and, if so, collect an appropriate amount of points.

There are things you can do, like trading players and shaping players from your roster on and off the bench, but the most important thing—from what I understand—is talking trash to the other people in your league and complaining about the poor performance of your players.

I wasn’t interested at all (as exciting as the trash talking sounded) until I realized something—something important that changed my mind.   I have Uncle Jonathan.   If it’s a sports thing, he knows it.   So I made a call, or rather I sent a text.    Uncle Jonathan said he was in and now we’re partners.  

Tonight is the draft with my team,  Cybertronia Mars Midgets, (so named by my children) against the other members of our family.   I have high confidence in our team.

The Big Boy Update:   My son seemed to be in a pensive mood when I went outside to eat dinner on the porch with him so I asked, “do you want to talk or do you want to eat dinner in silence?”   He thought about it and said,  “silence, because then you can here the birds.”   We ate in silence and listened to the birds.

The Tiny Girl Chronicles:  We were leaving the beach yesterday when we walked by some random people on the way back to the boat.   My daughter said, "I saw them at the beach one time before. They said underwear poop.”

Burned

We got burned today.   Not just me, my daughter and my husband.   My son seems to be immune to getting burned based mostly on his skin tone.   The remainder of us weren’t as lucky, even with more than one application of sunscreen for each of us.

Aloe has been applied and everyone feels fine, even if a little hot on the skin for now.    No one was seriously or significantly burned, it’s just with the sunscreen products available today, getting burned isn’t something that happens as often as it did years ago.  

Sunburn aside, we had a fun day at the beach and with the jet skis and boat.    My children collected shells that are beautiful and wonderful to them even though they look plain and ordinary to the adults.  

The Big Boy Update:  Madison Mania.   My son is in love with his’s cousin’s girlfriend, Madison.   I’ve never seen him so obsessed over someone before like he is with Madison.   He’s written her love letters (with some adult assistance) and wants to hug her and be right next to her all the time.    He’s going to miss her when we leave.  Fortunately, she’s coming down to visit in a week on the way to college.   He’s looking forward to showing her his toys and bedroom.

The Tiny Girl Chronicles:  My daughter stands on her toes.  She folds them under and stands on top of them like on her tip toes, to get as much height as possible when she needs to.    I mentioned to her how I used to do the same when I was a child.   She said, “it’s comfortable”.   I told her I remember it being comfortable too.

Why Is Lola Crying?

I posted the other night how I caused my daughter to cry—because I was crying.   She didn’t understand why I was upset, but it bothered her enough to make her cry.    There was another incident later that night when I was helping my son get ready for bed.    He had gotten his pajamas on and I was giving him a big hug on the bed and I started crying again.   He didn’t understand either and was worried, asking why I was crying.

I was upset because of all the things that had happened during the day, but as I looked at him, I realized I was happy because he had been such a kind child during the day.   We’ve been seeing ore and more progress with him in a short amount of time and as I looked at him it made me smile, even through the tears.    I tried to explain this but he still didn’t understand.

I assured him I was crying because I was happy and as I did, I was reminded of something from my childhood that at the time, I didn’t understand:

We had neighbors who were cat people.  At any given time they typically had one to three cats, typically two.   Their cats were outdoor cats for the most part, coming in only as the whim struck them.    Over the years, the attrition rate for their cats was fairly high given the hazards of outdoor living.   But as cats would meet their demise, new cats would be adopted and brought home to join the family.

There was one time I remembered though when a very beloved cat had died of leukemia and unexpectedly the other cat had been hit by a car, leaving the family cat-less and sad.  

A few days later it was my friend’s mother’s birthday and we went next door to have dinner.  The mood was still somber because of the loss of their cats and then shortly after we got there, one of their friends came in the door with a small, grey, furry kitten.  

My friend’s mother burst into tears.    She was sobbing.   I was confused.   I asked my mother why Lola was crying?  Did she not want the kitten?   Was the kitten the wrong color?   I didn’t understand.   My mother told me she was crying because she was happy.   I still didn’t understand, but my mother assured me not to worry, some day I would.

The Big Boy Update:  I think my son has a fairly good handle on gun violence.   He said to me the other day as we were walking to the car after lunch, “If you were a child and shot someone, that means you’d go to the vegetarium and you’d never come back."

The Tiny Girl Chronicles:  My daughter asked my husband, Aunt A and  me in the car tonight, “why are you guys growing up faster than us?!”  We assured her we were all growing up at the same rate.    This was apparently not the answer she wanted because she fired back, “well, when am I gonna grow up?”

Family Laughs

We’ve been spending time with our family over the past few days.   Some people don’t look forward to being with their family, but for us it’s some of the best times of the year.

We’ve been laughing at each other and because of each other for days.    And I don’t mean the mean kind of “at your expense” kind of laughter, but the fun kind of laughter that means you’re having fun as a group.  

There has been good food, happy children, beer, family members as well as friends.   We’ll be sad when it’s time to leave, which is how we feel every year at the end of our family vacation.

The Big Boy Update:  We went out to dinner tonight to a new restaurant in town.   We arrived fairly early, but by the time we’d gotten around to ordering our meals a good number of other orders had been put in before us.   My son entertained himself very well with some crayons, a cup, some ice cubes and a straw.   After time drew on and our meals hadn’t been delivered my son asked how much longer, saying, “but it’s been a year since we ordered.”

The Tiny Girl Chronicles:  Sometimes my daughter says things that make you think things are going on in her head (or eyes) that may or may not be true.   This is something she told my husband one day at our playground:  “I have some new tricks I can show. I took pictures of them for my eyes. You have cameras, but I can’t show you since they’re kind of locked in a space where I can’t find my keys.”   I don’t know what that means, but does she know she can’t see or make sense of things like she used to, or is it just the type of talk children do?