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.