Turn and Swallow

I’m taking a day off writing about my daughter’s eyes.   I don’t have any substantially new information to report but when I do, I’ll report here in detail.  For tonight, let’s talk about my esophagus.

I’ve had two spinal fusions from C5-C7, the first one anterior in which a butterfly plate was put in the front area of my spine and the second posterior, which consists of two metal bars in the back of my spine.   All this extra metal including the accompanying screws is behind my esophagus, resulting in that same area being pushed forward a bit more than the rest.

For years (the fusions were in 2005 and 2006) there was no noticeable side effects but in the last few I’ve had swallowing issues.   I was concerned there was something wrong and ultimately had a scope done to verify.  The good news is there’s nothing wrong.   The interesting news is your esophagus doesn’t have to be straight to function.    And mine has a hitch in it.

That irregularity has left a shelf on which food gets stuck.   The number one thing being apple—and I eat a lot of apples.   Getting something unstuck has been an ongoing research project with no definitive results yet in.   It’s too far down to cough back up so I end up moving my throat around, swallowing hard, drinking liquids, making myself cough from the discomfort not to mention other unpleasant sounds.   But so far nothing is consistent.

Then yesterday I was looking to the extreme right (or as far as I can turn right with my fused neck) and when I swallowed the food unlodged and went down.   Could the solution be that simple?   I can’t get things stuck on demand, so it’s going to take some time to verify if I do have an easy out in the future.   But I’m hopeful.

The Big Boy Update:  We ate at our new favorite Mexican restaurant tonight.   My son informed us, “salsa and guacamole together are super powerful.”

The Tiny Girl Chronicles:  My daughter was at a park today, attending two birthday parties.   I was pushing her on the tire swing when she sighed and said, “my oh my it’s a wonderful day.”  I agreed.  It was.

Family Day Trip

We drove an hour-and-a-half today to visit my cousin (whom we call “Aunt” to our children) and her family.   My children love their Aunt Rebecca, Uncle Dale and Cousin Olivia.   My parents went with us and we had a smooth drive, excepting some bickering from the small ones in the third row.    We had been scheduling this get-together for several months, had last-minute cancellation due to illness (my daughter) but today was the day.

It also happened to be Uncle Dale’s birthday, which everyone was glad to celebrate with pizza and ice cream sandwiches.   My children’s favorite part I think was playing with Olivia on her Floof pillow.  Think of it as a memory foam version of a bean bag chair that fits three people.   They took trip after trip to find stuffed animals and brought them down to the basement for the Floof-based games they were playing.

The adults all had a chance to catch up and see their new house, which looks like it was made for them.  We got to see Olivia’s swimming medals and trophies and her new Venice-styled bedroom which is pretty much my kind of style.  

We left with two tired children, both happily eating a bag of snacks Aunt Rebecca gave them.   They were asleep before we got on the highway, something that hasn’t happened for a long time.   I told Aunt Rebecca, Uncle Dale and Olivia we’d like to come back, and since the children had such a fun time, we’d be glad to leave them there for a weekend…

The Big Boy Update:  My son was talking to Aunt Rebecca today who is four years my senior and a person I always looked up to as we grew up.    My son said, “why do you look so young?”  Aunt Rebecca told him that made her feel very happy and that ladies always liked hearing comments like that.   But my son wasn’t done.  Next he said, “why do you look younger than my mom?”  

The Tiny Girl Chronicles:  Vocabulary lesson tonight.   My daughter is “aphakic”.   This means she has no natural lenses in her eyes.   Having no lenses doesn’t mean you can’t see, it just means you need glasses or contacts with a significant prescription.

Refractionless

I don’t think that’s a word, “refractionless”, but I don’t particularly feel like being a slave to the English language right now, so I’m using it.  Today we took my daughter for a follow-up visit to see how things were going after the surgery.  You might remember from last week my daughter being completely unwilling to open her eyes, even with four of us holding her down, just so the doctor could get a quick look in to ensure there was nothing amiss after surgery.

I’d talked to my daughter about today, telling her she was going to look into a little machine that would have a red light to stare at and we were hoping she could do it so we could get her more accurate glasses.  She seemed happy to be going to the eye doctor, but for some reason when Dr. Grace came in, she suddenly got shy.  

There was some whining, a lot of wanting to hide her face and touch her eyes and mostly not a lot of looking so the doctor could see.   She wasn’t able to get an accurate pressure on either eye which she was hoping to do because she’d added Healon to both eyes to increase their pressure.   She touched them with her fingers on her closed lid and said they didn’t feel that firm, but she was probably okay.

If you want to do the test she did on your own eye, it’s easy and safe to do.  Just close your eyelid and gently press on your eyeball with your finger.   It should feel like a very firm, crisp grape.    That’s because the pressure in your eyes is normal.   The pressure is holding up the internal structures of your eye.   Eyes need some pressure.   Too much pressure can cause damage to the eye as well, as many people with Glaucoma well know.    My daughter’s eyes don’t feel like a firm grape, they feel like an old grape that’s gone a bit soft after being left in the back of the refrigerator for too long.   That’s what low pressure feels like.

There was also the refraction we were hoping to get.   Dr. Grace was able to get enough of a look at her eyes to not have any concerns, but she couldn’t get a steady enough look to get an idea what prescription she actually has for her eyes.

We’re coming back in two weeks and hope to try again.

The Big Boy Update:  My son told his teacher he wanted to invent a time machine.   She asked him where he would go on his first trip?   He said without hesitation, “1977, so I can see dad as a baby.”

The Tiny Girl Chronicles:  Can my daughter see faces?   I can’t really tell yet.   There is a lot of her vision that’s still a mystery.   I would love it if she could see what we look like.

To See or Not to See

My daughter can see—her eye is open post-surgery, but that doesn’t mean she can see like the rest of us can see.   I’ve been getting updates from her Visual Impairment teacher and it’s not great news.   That doesn’t mean it won’t be better news when we get her lenses that match her actual refraction, but for now it’s not great.

She isn’t able to discern letters on a page, even at 48 point font.   She cried today (a first) when she worked with Raffaella and is sad because she can’t see what she could even in a clouded visual state before the necessary surgery.   But we’re still hopeful.

She prefers the “blue glasses” but I’m not sure those are the best prescription for her.   We think she likes them because the frames are blue.   But we have to go with what she likes for now.  

Tomorrow we have a slight chance of getting a refraction at her post-op follow-up appointment.  Maybe, maybe we’ll know more then.   For now, she’s working with what she has and we’re trying to help her through her limited sighted world as best we can.

The Big Boy Update:  We were talking about favorite colors in the car on the way home from school today.   My daughter’s favorite color for as long as she’s had a preference has been green.   For some reason today my son switched from blue an orange to green.    I asked them if they knew what my favorite color was, knowing they’d been told many times how I liked orange.   My son, with complete confidence informed me, “I know what your favorite color is mom, it’s tan”.

The Tiny Girl Chronicles:  There was a brief period tonight when my daughter had her iPad.  The television show she wanted wasn’t playing for some reason.  I told her I couldn’t help as I was in the middle of something else.   A few minutes later she called out from the other room, “I know what the problem is, mom––the internet has gone crazy”  

Cleaning the Glasses

This morning my daughter came downstairs and got on the bed.   Yesterday when she first opened her eyes she was on our bed and after looking at me and giggling, she looked down at the patterned comforter and told me she could see some of the patterns and started tracing lines with her finger.   This morning she said sadly, “mom, I can only see white on the bed today.”  

I was groggy, but this concerned me so I told her her eyes might not be awake yet and to give it a minute.   As I rolled over she suddenly said, “oh, I was looking in the wrong place.”   She had been looking at the white sheet instead of the dark comforter.   So good news she could still see, but do you get a little understanding here that while she can see some things, there is a heck of a lot she’s not visually able to discern.

Next she told me there was, “some gloop” in her eye and when I told her to be gentle with her eyes (she’s still post-surgical and healing) she decided to dab some water in her eyes to clear them up.   And then she said something she’s never said before, “I think it’s time to clean my glasses. they’re a little dirty.”

She has glasses cleaner and a special pincer cleaning tool she can use and be successful with all by herself and she remembered where it was in the drawer in the bathroom.   She took about five minutes, making sure her glasses were completely clean and then decided she most definitely needed breakfast.

She went to school today and worked with one of her Visual Impairment (VI) teachers.   I had alerted her that we’d be sending in all three pair of her glasses and if she could help us on what my daughter was seeing or which pair of glasses worked best to please let us know.

When I picked the children up my daughter seemed largely unfazed about her return to school.   When I asked her though it did turn out she and Raffaella had been testing out the glasses.   She said the blue pair (+22) were good for reading and the new pink pair (+17) were good for other stuff.   She wasn’t sure, but the old pink pair (+12) might be good for playing outside, only it was too sunny so she had to wear her old sunglasses (+4.5) and did the best she could with those.

The Big Boy Update:  My son got into an argument with his sister while my mother was over today.   I wasn’t sure, but I thought it might be because Mimi was paying a lot of attention to his sister, and less to him.   The fact that Mimi was protecting and watching out for my daughter due to her lack of vision and recent surgery wasn’t something I think he realized.   When we figured that out we had him ask Mimi if she would play with him when she was available.   Of course she said she would love to and in short order she came inside and had a nice, quiet play time just with him.

The Tiny Girl Chronicles:  When my daughter got in the car to come home from school, was she excited about going back to school and seeing her friends?  No, not really.   She wanted to tell me about the new braille book she borrowed about a circle.   She was going to “read” it to us tonight at bedtime and then she had to take it back to school tomorrow because she could only borrow it for one day.

I Can See Everything

This is a good post.   I’d even call it a breakthrough day.   I was ecstatic, but honestly now I’m cautiously optimistic.    The good news is my daughter has opened her eye and she can see things.   She’s not fully sighted, but she can certainly see more than she could with her eye closed and we think she has the potential to see a lot more than she did pre-surgery.    But let me go back a bit first…

We’ve been trying to get her to open her eye since surgery last Wednesday.   She has been resistant, saying her eye was stinging and everything was infernally bright.   The brightness seemed to abate over time but the stinging persisted.   We were hoping to get a refraction done at her follow-up visit on Friday but in order to do so she would have to look into a machine and look at the red dot, keeping her eye still enough for the machine to take her measurements.

This morning I took her into our pantry, shut the door and in the complete dark shined a little red toy light on the floor and wall, asking her to look for it.   I got screams and cries of, “it stings!”   She was resistant to the point I gave up after a while.    I messaged Dr. Grace and she sent back that it would be understandable if her eye stung because there was a stitch they put in that she might be feeling.   The stitch would dissolve in short order and not to worry too much about complaints of stinging.

There was another sad thing that happened as well.   My husband was talking to her, saying it was important to try and look so she could see which glasses helped more.   My daughter didn’t want to look, saying, “I can’t see anything.   This is what happened to my right eye.”

That comment gave me chills.  That was my daughter effectively saying she thought the surgery had taken away her vision and she was watching it disappear just like her right eye had.   I called her therapist with a rather urgent, “we need some guidance now” message.   Then, just a few hours later, I’d suggested my daughter use the iPad and try to “peek” whenever she could.   No pressure, I was sitting beside her working on the bed.   And that’s when it happened.

Suddenly my daughter said, “when I go further away the iPad is smaller”.  I looked up and she had her eye open.   Completely open.   I asked her if she could see and she was quite excited and said she could.   We hugged, and then she started looking around on the bed.   She could see the pattern in the comforter, she looked off the bed and said, “I see the laundry basket”.   She then followed up with, “I see the clothes in the laundry basket, I’ve never seen that before.”    She looked across the room and said, “I see the light switch.  I see the wall through the door.”    She was seeing at a distance, with apparently some level of clarity.   And then the best comment of the day—she said, “I can see everything!”

I sent a franticly excited text to the play therapist saying, “Ignore last message, her eye is open and she can see!”  I sent similar messages to her doctor, my husband and best friend.   At this point I’m so used to bad news I think I was in shock and didn’t quite know how to take it.  I think I should have been crying but I was in awe, watching her move around, watching her actually look at things at a distance.

 My husband called and my daughter wanted to hold the phone and explain what she was seeing.   She’s known there was a red hangup button on the phone before but today she said, “what are those other buttons on the phone?”   She could see the small white outline buttons for mute, speakerphone, add call, FaceTime, etc.   I explained each one and then asked if she wanted to FaceTime dad.   She did and when his picture came up she said, “I can see your face!”

For the remainder of the day we’ve been having her try on the various glasses to see which prescription works best.   That is still up in the air, but she seems to like the +17 pair the best.   To put things in perspective though, while she can see, she’s not back to normal vision.   She’s still quite visually impaired, but this is a very big improvement from what we can tell so far.

The Big Boy Update:  My son explained to me, “I’m afraid of the water…because it’s wet.”

The Tiny Girl Chronicles:  Her left eye is open and she can see.   She’s excited about it and so are we.   I’m not sure the day could have been any better for her and us.

Peanut

We are encouraging my daughter to open her eye.   She doesn’t like it.  She says it stings.  She says it’s bright.  She tells us she can only see yellow, or nothing, or black spots.   The black spots one makes sense because she has a steroid injected into her eye that might present as black blobs for a bit.      Whatever the reason, she’s not jumping back into the sighted world yet.

We wanted to get her out of the house today and decided to take her to lunch and then the pet store.  Lunch went well with her ordering “just meatballs” and my husband and me questioning the judgement of, “yucky!” once the food arrived, but she liked her meal.   The pet store next was a questionable adventure, one my husband thought I was a little misguided for suggesting.

I knew there would be fish (which she couldn’t see).  I didn’t think there would be dogs, because that’s usually on adoption days on the weekend.   I wasn’t sure what else they’d have but I was guessing some members of the rodent and avian families.   There were gerbils, mice and hamsters but they were all asleep.   There were birds, which flew around the cages quickly.  My daughter asked me to take a picture of them so she could see up close.  I did, only to have her barely glance at the phone, realizing she couldn’t see anything discernible with the changed vision in the bright light and her over-sensitive eyes.   So we moved on.

Then we found the cats against the wall in the glass cages.   She likes cats.  Her brother is allergic, but she was interested in seeing them.   There was one cat who wasn’t lounging.   This cat was so interested in seeing her, he would follow her hand back and forth in front of the cage and wanted her to pet her something fierce.  

My husband looked and the cat’s name was, Peanut, another thing my son is allergic to.  My daughter thought this was the perfect name and wanted to meet Peanut.  She wanted to play with Peanut and take Peanut home (of course).    We read the documentation beside the cages which said, “interested in meeting one of our cats?  Volunteers are here on Sunday, just go online, fill out this form and we’ll schedule a time for you to meet your potential new family member.  

So we didn’t get to play with Peanut, but my daughter is still talking about her.   She says we’re going to go back on Sunday so we can play with Peanut.  We’ll see about that…

The Big Boy Tiny Girl Play Doh Update:  We pulled down the play doh this afternoon when my son was home from school because it was something they could both be successful with.   My husband and I tried not to worry too much about the mess and left the room as they were dumping the entire bin out.   My son announced, “watch how I can make a mess!” which only furthered my prediction on the percentage of play doh on the floor versus table when they were done.   They did indeed make a glorious mess, but they had a great time, bringing food item after food item for my husband and me to pretend eat for the next hour.  On the whole, the mess was worth it.

Little Lost Girl

My daughter’s eyes remain closed today, day four, after her cataract surgery.   She’s told us lots of things, most of them conflicting about what she can or can’t see.  We’re tying to be patient, but it’s getting more difficult to do so, knowing she’s building habits (which she is prone to do) that will be hard to break the longer they go on unchecked.

This morning she wanted to go next door to see if Madison was available.  She got dressed and then went to knock on their door.  After she left I heard from my husband that their family was upstairs watching a movie in their movie room.   I expected to hear my daughter coming back in a few minutes but it was longer and then we heard the doorbell ring instead.  

It turned out she didn’t get an answer and apparently got turned around on the way home, heading instead down the street (it’s a safe cul-de-sac) and was lost.   One of our neighbors brought her home, scared and crying.  

So it was time to talk about opening her eye and figuring out which glasses were the ones that were closest to her prescription.   I’d like to tell you it was an easy day for her and us, but it wasn’t.   We tried to take it in steps but ultimately I had to be more firm with her than I liked, telling her she couldn’t hold her eye open and had to absolutely stop touching her eyes.  

We’ve been holding off on the iPad in the hopes she’d miss it and want to open her eyes to try and see it but that wasn’t working either.   I finally got some traction tonight by making her sit in her usual watching position with the iPad on her knees, close to her face and found out (we think) that the +17 prescription glasses were the closest fit with her saying the +12 and +22 lenses made things more blurry.

Before and after dinner she watched (maybe) Transformers Rescue Bots and I think was looking out of her eye barely squinted open.  I think she can see something, so does my husband, but we’re getting “I can’t see ANYTHING!” to “I see nothing but rainbow” to “I can only see brown” at other times, mostly earlier in the time before the iPad this evening.

Tomorrow she’s said she would like to keep watching the iPad and would be willing to keep her eye open, which I think is a good sign.   Hopefully she is seeing something more than the dire reports we’re getting from her.   It’s still very hard for us to tell as I’m not able to see her track anything with her eye and she’s not overly positive about what she is seeing—a reasonable thing given her vision has been completely disrupted with the surgery.

The Big Boy Update:  My son informed us at dinner, “I think orange should be the last of the rainbow…then purple moves in”.

The Tiny Girl Chronicles:  My daughter wanted to know what a blood vessel was tonight when I was drying her hair.   I explained how blood brought nutrients to the body and she wanted to know what parts.   When we got to the brain she wanted to know how her brain stayed on top of her body and I knocked on her head and told her her skull protected her brain and her spine kept her body upright along with her skeleton.   She told me she knew what a skeleton was, saying, “a skeleton is a person who’s only made out of bones.”

It Looks Different

My daughter still hasn’t opened her eye after surgery, or at least she says she hasn’t.   She is making progress though.    Instead of insisting all the blinds be shut and a black blanket over her head, my daughter is spending the day with her night eye patch on, not looking.

We need to get her into glasses that will correct for her vision, but we don’t know which glasses work better for her until we know more about what she can see.   Today my husband asked her if she didn’t wasn’t to lock because it was too bright.   Instead of saying yes, my daughter said she didn’t want to look because things looked different.   This means she’s been peeking at least, which I’ll take as a good sign.

I got her most sever correction lenses on this afternoon.   I don’t know if she looked a bit through them, but she wore them until bedtime.   We’re still on hold to see if she can see, but we’re getting closer to finding out if she can.

The Big Boy Update:  My son wants new Legos.  Not only is he selecting toys he wants to sell at a yard sale, he’s counting his piggy bank money as well.   He’s not close in saved money that he needs to be to buy the Lego set he wants.   We told him he could earn extra money for chores.

The Tiny Girl Chronicles:  My daughter was talking to dad, asking him to so something.   He didn’t do exactly as she had requested so she critically said back to him, “I don’t think you heard a word I said.”

Still Closed

My daughter still insists on keeping her left eye closed after surgery.   There isn’t anything wrong with this and from those we’ve talked to who’ve had cataract or other eye surgery, the light sensitivity post-surgery can be very dramatic and even painful.

I called Dhruti, our children’s Play Therapist, for some advice and she gave us good information on what to expect and how to work with the situation instead of against it.   First, she reminded me that our daughter is of feisty temperament.   She isn’t going to wait that long before she will adventure into opening her eye on her own, but we can facilitate matters.

We shouldn’t try to cajole or demand her to get her to open her eye, this will backfire.   We should tell her the doctors made her eye better and we know she can see, but she’s going to have to open her eyes to find out.    Don’t push her, tell her things like, “whenever you’re ready, you’ll open your eyes and see for yourself”.

My child needs to have something in it for her, some motivation to get something she wants.   We’ve been letting her listen to shows on her iPad without looking at it (something she’s never wanted to do without trying to look before).   The message now is, “if you want to use the iPad you need to open your eyes.  If you don’t want to open your eyes, that’s okay, you can use the audio book reader or listen to music on the iPod or find something else to do.”   Basically make her a little bored.

The terrible stinging from the drops six times a day is diminished significantly and light sensitivity has already changed a little.   Yesterday she had to have the eye covered with a hand at all times, even with the eye shut.   Today she’s wearing her sunglasses and has been okay with the blinds open some of the time (when we can sneak them in and the sun isn’t blaring directly in).  She’s sitting up and eating and can manage to have the sunglasses off while we do the drops.

The most interesting thing from the day was this morning when she asked my husband, “why am I getting so much light, even with my eyes closed?”   Her doctor messaged me today asking how things were going and agreed, the question about light through her eyelid was a good sign.

The Big Boy Update:  My son’s teacher at school had to leave unexpectedly for the remainder of the school year.   He gets told on Monday she won’t be returning.   I’m not sure how he’s going to take it but we’re planning on having him see Dhruti, our Play Therapist, after he finds out to see if she can get a read on how he’s faring.

The Tiny Girl Chronicles:  while talking with dad at dinner, my daughter had a conversation about how people age.   She said, “first you’re a toddler, and then kid, and then teenager, and then grown up, and then Mimi, and then dead maybe, and then maybe Gramps’s father and then I don’t know what.”

Lack of Data

I’d like to say I have good news today with regards to my daughter’s vision, but I don’t.   That’s not to say I have bad news either—it’s more of a lack of information.    To sum up before I get started, we don’t know if or what she can see yet.

This morning we went very early for her post-op follow-up.   We knew she hadn’t been opening the left eye yesterday because it had been stinging and since she had a metal shield over it (with small holes so she could see out) we didn’t think she was really trying to see.   She had spent the day lying on the chair and our bed resting.  

At the appointment this morning after taking the shield off we and ultimately four other staff members tried to get a look into both eyes, mostly without success.   There was a lot of screaming and holding her down because trying to cajole and compliment and bribe her hadn’t worked and her doctor needed to get a look in to see if everything looked good.

My daughter is a master at rolling her eyes upwards beyond the point you can even see the edge of her irises.  Dr. Prakalapakorn got a few glimpses, saw the “orange reflex” and a few other things that made it look like there weren’t any problems and then sent us home to come back in a week.

Some distressing things my daughter said (or whined about or screamed about) was that she saw “nothing”.   But nothing made no sense as there was nothing done to the retina or any area of her eye that would result in loss of vision.   The orange reflex showed an attached retina so there were no worries there.    What we did find out was when a bright light is shined on her eyelid, she responds by screaming and covering her eye with her hand.   So she can see light—she’s just highly sensitive.

Remember she has no pupillary function because her pupils are scarred and can’t dilate down, meaning any and all light comes in.   Her left eye after surgery can have lots and lots more light let in and the combination of the two was just too much for her.

So we’re waiting.   We had hoped today she would try and see something but mostly she lay in a fetal position with a black blanket over here, complaining miserably when it was drops time all six times today because post-surgery every drop stings badly.    We gave her her sunglasses later in the day and that helped some in that she wouldn’t always cover the eye with her hand, but it’s just tough going for now.

Some things that could contribute to her vision in the short term is an air bubble added from the surgery that obstructs vision but should dissipate out in the next two days and an injectable steroid added to her eye that behaves like large “floaters” that will take a month to be absorbed.    But neither of those should affect her overall vision.

Tomorrow we’ll see if she will try and look out of the eye some.   If she would try and look at the iPad under the black blanket on dim brightness we could tell which prescription glasses is a closer fit and, hopefully, that she can see.  I hope I’ll have positive news to report when I get back to the computer to write tomorrow’s post, because I sure would like to have some good ocular news to report about my daughter’s vision improving.

The Big Boy Update:  My son asked me if I remembered that big race I ran in.   I told him I wasn’t sure which race he was talking about.   He asked me if I knew who won.   I told him I didn’t know who won.   He said, “you know, the race with Hillary Clinton and Donald Trump”.  

The Tiny Girl Chronicles:  My daughter asked, “daddy, why are the chocolate chips in ice cream flat while the chocolate chips in the other things round?

Left Eye Cataract Surgery Day

Today my daughter had first major surgery on her left eye—the eye that provides her with almost all her vision.   In 2015 if I had heard what was about to happen today to my daughters eyes, I would be panicked, frantic and depressed.   But today I was advocating for more things to be done to her eyes and was not only accepting of the dramatic irreversible steps being taken to her eye, I was relieved the surgery was finally happening.

What was planned was:

• Checking of the pressure in both eyes to make sure it hasn’t dropped to a dangerously low level
• Evaluation of the vascular system to see if blood flow is functioning normally (or as normally as possible given my daughter’s abnormal vessels)
• An in-depth scan with an Optical Coherence Tomography (OCT) machine to get cross sections of her retinas for both Duke and her Dr. Trese’s information for future procedures
• Removal of her left eye’s natural lens, now a cataract
• A possible vitrectomy (removing some of the vitreous in the eye) to facilitate the lens removal
• Possibly opening up the lens capsule in front or back or both if clouded, to let a clear image through her eye to the retina

That was the plan.   The entire surgery was estimated at ninety minutes.

The surgery didn’t go as planned.   She was in the OR for a bit over four hours.   But don’t panic, there really isn’t any bad news.  Overall it’s good news.   There were just complications that tookk more time.

The first one was the pressure in both eyes.   If you remember, there is damage to the ciliary bodies which produce fluid in the eye and keep it at pressure.   Due to the original insult to her eyes (which is still a mystery) her don’t produce enough, or any, aqueous flow so over time her pressure drops.   We don’t know what that time frame is so we have to watch it regularly since she doesn’t or can’t tell us how her vision is changing.

From a pressure standpoint, her left eye was six and the right eye was four, which is very low.   Dr. Prakalapakorn called Dr. Trese in Detroit to get his recommendation since the next time my daughter will be going under anesthesia will be when she sees him next in June.   He said to inject Healon into both eyes to return them to normal pressure (approximately twenty).

Then they began work on removing the cataract.   In the picture below note the “Lens” area.   That’s what they removed.   The lens has a capsule around it like the shell on an M&M that remains, but the insides, now clouded, had to come out.

Dr. Prakalapakorn told us at the end of the surgery that they’ve learned if there’s one thing to expect, it’s that almost nothing is as expected with my daughter and that her eyes have their own rules.

Typically a cataract in an adult is harder and needs to be cut up to be removed.  The lens of a child is very soft and can be easily extracted, but my daughter’s lens was unexpectedly firm.   They had to use multiple tools to remove it.   But before they could get to the lens they had to remove scar tissue and then multiple laters of membrane growth on the lens capsule, also unexpected.  These clouded layers were removed and then they cut out some of the front of her lens capsule so she could see through it clearly.  They got to the back of the lens and decided to make an opening in the posterior portion of the lens capsule as well as it was also clouded.  And all of this took time to do right.

So where are we now?   We have a child with a metal shield on her eye until tomorrow morning’s follow-up visit.   She can see through holes in the shield but without glasses to correct for the dramatic prescription she’s likely to have, she can’t see much.   She’s also very unhappy because things are stingy and doesn’t want to open her eyes.

Tomorrow the patch comes off and we get to try out the glasses we had made for her.   Hopefully she’ll be able to see some or more than she could before surgery today.   Her surgeons said they didn’t know how she was seeing through the left eye before today there was so much visual obstruction in the way.

More updates tomorrow.   We’re hoping for some improved vision.   We’re always hoping for improved vision here.

The Big Boy Update:  My son walked into the house this evening with a deer skull, including antlers.   We live with woods behind us so I wasn’t completely surprised, although no one had ever found animal remains before.   My husband asked him, “where did you find it?”  My son replied, “I didn’t”. My husband tried again saying, “where did you pick it up?” to which he got back, “I didn’t…Whitaker has some of the teeth.”  My husband tried one more time asking, “where was it when you grabbed it?:   This time we got information, finding out he got it in our neighbor’s front yard.   We suggested he take it back to them and see what they planned on doing with it since clearly their children had found it and put it on the grass in their front yard.   We also told my son he had to thoroughly wash his hands.

The Tiny Girl Chronicles:  My daughter was amazing today.   She is home and can’t see and hasn’t complained or cried once.   She is asking for help getting around, but it’s like the huge change in vision with a shield over her eye isn’t even phasing her.   I am continually humbled by her ability to accept things.

Cataract Surgery Pre-op Post

Tomorrow is a big day for my daughter’s vision.   We’ve played it off as not a big thing, but it is.   Her one functional eye (for all intents and purposes) is her left.   The only thing that’s been done to it in the last year is to  artificially increase the pressure with Healon to keep it functioning as normally as possible.  Tomorrow morning she will have more dramatic surgery.

Her natural lens has developed (or become) a cataract.  It’s clouded and is making it harder and harder for her to see.  The process of removing her lens is fairly easy.   There is an option to add an artificial lens back into the eye, something that happens all the time to anyone you likely know who’s had cataract surgery, only in her case they’re opting not to.  

Adding an artificial lens into her eye is a more involved and invasive surgery and has potential side effects that aren’t worth the risk.    The solution is to give her glasses that will match whatever refraction index she has for her eye.

But there’s a problem: what’s her refraction (prescription)?  We don’t know now and won’t know tomorrow.  We won’t know until early June when she has another EUA and her eye has adjusted to the cataract removal surgery.   And that means my daughter will wake up with the only vision she had, dramatically—and I mean dramatically—changed.

But we made a plan.  We had a discussion with her doctor and went with a plan to have three pair of lenses made, all at very significant prescriptions, so that upon waking up, she can put on each of the three glasses (+12, +17 and +22 prescription) and see which she can see more with.   And folks, I can tell you right now I am hoping like hell one of those three is reasonably close.

Today after school I told my daughter her new glasses were in and would she like to try them on?  She did and her response was interesting.   First of all she loved having three new pair of glasses (in three colors) with color-coordinated plastic cases.  

She tried on the +12 (the least severe of the three prescriptions) and said, “woah!  Things are in the wrong place!!”   She walked around, trying to find the dining room table edge and then the stairs.   She thought it was fun.   She had just as much fun with the +17 pair.    But her favorite was the +22, lenses we had trouble getting made because the prescription is so extreme.   She didn’t want to take them off because it modified her world so much.   She would come close to me and say, “you’re so giant!”  She’d back up a bit, lift up the lens on her left eye and tell me I looked normal and then do it again.  

Tomorrow we’ll find out if the glasses help and hope for the best possible outcome from the surgery.   As far as my daughter is concerned, it’s not a big thing, she does eye surgery all the time.   For the rest of us, we’re holding on tightly to our anxiety until we know.

The Big Boy Update:  My son wanted to get a new Lego set today.  I told him he had lots of Legos and no, there wasn’t a plan to get him any more any time soon.   He wanted to know when his birthday was and then when the next time someone in the family would get a present.   We got into Father’s day and Mother’s day and then he said, “why can’t there be a Brother’s day?”  

The Tiny Girl Chronicles:  There was a see saw incident today.   My daughter just didn’t see it—at all—in the back yard because it’s green and the grass is green and it wasn’t where it was suppose to be.   She ran into the corner of the seat directly on her pelvic bone.   She cried for a very long time and is still in pain now.   I hope it will feel better tomorrow.

Regular Radio

My children live in an on-demand world.   When they want to watch a show they don’t have to wait for it to come on a particular channel at a specific time—they can just select and stream the episode of choice from their iPads.  

When we want to listen to music we don’t have to put on a record or tape cassette, we just pull up the iPhone and start the song, or better yet, we ask Alexa or the car to play the song and it starts immediately.  

When we were in Palm Springs we had a rental car that, alas, didn’t have the high-tech fanglie danglie options.   We had FM and AM.   We found a station that played pop music and left it on for the trip.    The children were initially disappointed they couldn’t request songs.  The most interesting part was explaining how traditional radio works.   My husband is great at making things complicated like this understandable to children so I let him do the talking.

The Big Boy Update:  My son was being warned about a potential consequence if he chose to do something.   He replied, “I don’t care what’s in the future.   I don’t care what I do.   I just do what I do.   And the future is in the future.”

The Tiny Girl Chronicles:  My daughter’s hearing is acute and honed given the loss of vision she has.   Today in the midst of conversation in the kitchen she was the next area over in the breakfast nook.   She knew I was making lunches and suddenly announced, “I just heard you zippering the lunch boxes, what did I get for snack?”  She realized when they were zippered I was putting them in the refrigerator for tomorrow and the packing of their lunches was complete.

The Plastic Grass Lesson

Today is Easter Sunday.   We had a fairly low-key day with a few things planned.   My children woke up to an Easter basket at their seats on the bar.  My son woke up first and didn’t notice his for some time because he’s interested in making modifications to one of his Lego sets and was busy watching instructional videos online.   My daughter woke up very late, possibly because she’s on antibiotics or possibly because of the time change coming back from a week on the west coast.   But they did notice them eventually.

I heard them take their baskets upstairs and was going to tell them they had to keep them in the kitchen area since there was candy in them but I got distracted with getting ready for my parents and aunt’s arrival and didn’t go upstairs to remind them food stays in eating areas.

My parents and aunt arrived shortly later to happy sounds and two children wanting to show them what they got in their baskets.   I went upstairs with my mother to get the egg hunt baskets only to find the green and purple plastic easter grass everywhere.   EVERYWHERE.   Or at the time that’s what it looked like.

It was in the hall, down the stairs, in the bathroom and all over the bonus room.   It was like a whirlwind had hit.   I wasn’t kind with my tone of voice or words and they were unhappy but we got it cleaned up thanks to my aunt and mother.  

Next, without taking note of the most recent experience, my mother and I hid easter eggs in the yard. I had filled the hunt baskets with more straw.   Did I think to remove it before they went looking for the eggs?  Of course I didn’t.    My son looked in the front yard while my daughter (with assistance from adults due to vision) looked in the back yard.  

When they came in the house they dumped out their baskets to open their eggs—dumping parts of the grass along with the eggs.    I cleaned up all the grass, bagged it and have stuck it in the attic, vowing to remember this double lesson next year.

The Big Boy Update:   My son had a blast looking for his eggs.  He didn’t want help or anyone in the front yard with him but I told him I was taking pictures.    He kept laughing and saying, “you can’t hide from me!” as he dashed off to get another egg.

The Tiny Girl Chronicles:  My daughter’s vision is growing quite dim.   She needed help getting all her eggs, some only inches away from her hands.   But she loved the entire experience.   She, true to her nature, offered to share a lot of her candy with dad and me.

A Skill You Lose?

I love chewing gum. I would chew it all the time as a child. I remember when a gum ball was a penny from the gum ball machine when I was very young. Later it because a nickel and then it was a quarter for multiple pieces. I also loved bubble gum like Bubbalicious and Hubba Bubba. Those big, fat, soft blocks of gum would last for hours in my mouth. I’d chew them until the gum component would break down and turn into a grainy mess that had to be spit out.

That was then. As I got older I’d chew gum from time to time, mostly the more adult gum like Denteen or Trident. Maybe I’d throw in some Chewlees or Fruit Strip gum for fun from time to time. I could still chew for long periods, but it wasn’t as often I sought out gum when I was a child.

Today I still like gum. I was seduced by a large tub of big, round gum balls about two years ago. I needed over a hundred colorful balls of gum. Simply had to have it. That container of gum is still sitting on a top shelf, maybe a third eaten. But I do have a piece from time to time.

The thing is, I can’t chew gum anymore, and I can’t figure out why. I can chew with great gusto, only in the process of chewing in invariably chew on my lip or cheek. It always happens. When it happens I’m not thinking about the chewing of the gum, i’m just absent-mindedly chewing. I shouldn’t have to pay close attention, should I?

It’s happened so many times I’ve almost sworn off gum. I thought maybe it was me, but in the car last week I happened to mention it to my parents. My father was an avid gum chewer for years but I realized I hadn’t seen his gum wrappers around in a long time. When I mentioned the biting my lip problem my parents bot said they’d experienced the same thing.

Is gum chewing a skill you lose? Is it something you have to practice and are we just out of practice? I’m not sure my mouth can take the beating to get back into shape if so.

The Big Boy Update: My son was in the hot tub with Uncle Bob last night after dinner. They were having a nice conversation and my son was in a questioning mood. He wanted to know from Uncle Bob what it was like forty years ago? This is an interesting question because it shows my son can think of things back in time and understand people had experience before he was born. He also asked Uncle Bob why he wasn’t married and didn’t have children? Uncle Bob helped him understand how people each make their own choices in life and what his choices had been. This apparently satisfied my son who followed up with a new question, asking if it was possible to meditate under water.

The Tiny Girl Chronicles: My daughter was also thinking about family as well. The other day she complained loudly that she didn’t want to be a girl. She wanted to be a boy because she didn’t want to break her tummy when the babies came out. Then she asked how your brain chooses how many babies you have. I let dad answer that one.

Bigger Than, Smaller Than

Sometimes it’s hard to quantify what a child truly understands.   For example, just because my daughter can sing the ABC’s song, it doesn’t mean she has a true grasp of the alphabet.  Numbers are similar too in that children count them and talk about them, but how much do they really understand when it comes to one number in comparison to another?

From time to time we play games in the car.   We each take turns picking a game that takes two or three minutes to play together.   It might be who can name the most animals that begin with the letter ’S’ or I Spy or sing along songs or even some crazy made up game that takes my daughter almost two minutes to describe thus leaving almost no time to play the game before her turn is over.

Today when it was my turn I was right out of ideas so I quickly came up with a number game.   I said this was the the ‘Bigger than/smaller than” game.  I was going to name a number and they were going to tell me a number (any number) higher than my number and then any number lower than my number.

I started out easy with the number six.   My daughter had this: seven was higher than six and five was lower than six.    Good.   She then took a turn picking the number one hundred.   I said three hundred was higher and two was lower.   Next picked one thousand.    My daughter wasn’t bothered by this, saying three thousand was larger than one thousand and ten was lower.    (And I was impressed).

We continued the game, getting all the way into the millions and my daughter wasn’t confused even once.   She chose on about the fifth round the number zero as the “smaller than” number and I told her that was a great choice.

Then she asked me a question: what number was lower than zero?  She didn’t seem dismayed at all by an answer of “any number that starts with ‘negative’ like ’negative three'”.   She asked what numbers were larger than zero and I told her any number that didn’t have ‘negative’ in front of it was larger than zero.

I was surprised that my children had a much better grasp of numbers than I expected them to have at this age, especially since they have no idea how much money it takes to buy dinner, an apple or a ride on the merry-go-round.

The Big Boy Update:   Uncle Bob has been collecting updates for my son this week and just came around the corner to tell me this one.   Before bed tonight my husband put on Mickey Mouse Clubhouse—a show the children haven’t seen in a long time.   My son sat down on the couch in front of the television, smiled and said, “this is a great show, it has no guns or violence.”

The Tiny Girl Chronicles:  My daughter may have a bladder infection.   Today’s trip up the mountain was ended early for half of us because she only wanted to squat, go to the bathroom repeatedly, complain about stinging and grab her crotch.   Thanks to Nana’s collection of “just in case” antibiotics and my best friend’s doctor advice on what to give my daughter, she's feeling much better tonight.   We’re treating for both yeast infection and bladder infection but the good news is one or both are working and my daughter is in much less discomfort.

Hamburger Cheeseburger Hamburger Cheeseburger

My daughter likes cheeseburgers; my son likes hamburgers.   My husband likes hamburgers or more specifically hates cheeseburgers; I don’t really like hamburgers or cheeseburgers but if I’m going to have one I’d rather have the cheese-laden variety.   When we’re out ordering food my son will rarely choose a hamburger, opting more for the corndog, chicken nuggets or steak options.   My daughter, when she isn’t interested in mac-n-cheese, likes cheeseburgers for the most part.

But my daughter also likes to do what other people are doing.   She might pick lemonade for dinner but upon hearing her friend wants water or milk, will change her mind.   She might not want a particular food item but when she finds out her brother is having that item (and they’re currently not fighting) she’ll want that item too.

Today when we were discussing with the children what lunch options were available at the pool bar, my mother-in-law mentioned hamburgers, cheeseburgers and grilled cheese sandwiches.   My son immediately said, “hamburger”.   My daughter followed up with, “I want a hamburger too”.   And this was unusual because she never wants just a hamburger.

My mother-in-law asked if she wasn’t sure she wanted a cheeseburger instead, but my daughter was firm.   Then Nana tried another route, not wanting to have a meal arrive to be immediately followed by the phrase, “yucky!” and a battle over eating what was ordered.  The new tactic Nana tried was asking if she wanted “a hamburger that had cheese on it?”   My daughter wasn’t fooled by this ruse and said, “no, I want a hamburger!”

She and my son got their hamburgers and they both ate a good bit of their lunch before jumping into the pool.

The Big Boy Update:  My son said today, “Nana, I think my friends from school would like you.”  Nana looked over at him sitting on the edge of the pool and said, “why is that?”  My son replied, “because you’re a nice girl”.   Nana told him for a seventy-one-year-old lady, she thought that was quite a compliment.

The Tiny Girl Chronicles:  The dishwasher in our condo had a problem Nana discovered—when both trays were pulled out and full, the whole washer tipped forward out from under the cabinet.   Nana was talking about calling maintenance to have it fixed when my daughter questioned the whole situation by saying, “maybe it’s designed that way?”   Thirty minutes later with two screws added by the maintenance man the washer stayed in place once again.

The Weight Gain Vacation:  Isn’t it the way?  I have no idea how much I’ve put on while on vacation but I imagine it’s a lot.   Nothing but excess food and lack of exercise.   Still, fabulous fun on vacation.  I’ll pay pound penance when I get home.

Heading Towards the Mountains

We’ve been spending the week with family in Palm Springs, California this week.  The children and I have never been here before but my husband and most of his family have been here before.  My son was disappointed in that the desert didn’t look like Sahara sand dunes.  It took some explaining that the desert was a qualification based on annual rainfall and not so much quantity of sand and even then, I’m not sure he believes us.

Visually to me, from the hardscape to the flora, it does look like a desert for the most part.   Only it’s a desert stuck in a valley, surrounded by mountains.   And the mountains are omnipresent.

I thought on the first day I had an idea where we were going because we left from the Marriott site and headed “directly towards the mountains”.   We went a certain distance and got to our dinner location.    The second day we repeated this procedure to head for our morning activity, only things didn’t look familiar as we headed towards those mountains.  

It was then that I realized we were surrounded by mountains in virtually all directions.   You couldn’t see how this was the case from where we were staying but after a few trips in different directions (that felt like a single direction) I figured it out.

Later in the week we’re heading up into the mountains, maybe then I’ll get to see how much of the area is truly surrounded and figure out which direction we need to go if we plan on escaping to head back home.

The Big Boy Update:  We were at The Living Desert zoo this morning.   It was hot.  It was sunny.   My son was cranky.   He was so unhappy at one point he complained loudly, “I’m hot.  I’m going to heat to death.”

The Tiny Girl Chronicles:  My daughter’s vision is getting worse.  Fortunately she’s having cataract surgery in a week (more information to follow) but for now we’re just working with her through it.   Today she did say something that surprised both my husband and me because she’s never given any indication she even notices if her glasses are clean or filthy dirty.   She said at lunch, “I can’t see; my glasses are so foggy.”

I Shouldn’t Have Said She Was Blind

We went on a tour of the desert and the San Andreas Fault area yesterday.   We took two red jeeps, circa 1988,  and had two tour guides give us a nice rundown on everything remotely related to the area including agriculture, misspellings of map names and types of dirt nicknamed “mashed potatoes”.  

We spent over three hours on the tour and saw and learned lots of interesting things.   We had made several stops and it (to me) was apparent our daughter wasn’t able to see well because she couldn’t see the step stool to get in and out of the back of the jeep, amongst many other things that should have been a red flag to anyone paying attention.  

At one point when I’d just watched my daughter piling sand over her legs instead of looking at the things the other people were paying attention to because they were things you needed to be able to see, I made a comment to our guide and jeep driver.   I told him she didn’t have much sight but it didn’t seem to bother her because she always found something to entertain her.  

It is always a judgement call if I tell people about my daughter’s vision impairment.   It is almost always not necessary, but sometimes against my better judgement I do say something.  In these cases the person I’m telling is always interested, always sad to hear the story and usually wants to know with hopeful questions if there is a way she will get her vision back.  

It’s after that that I find out if I should have said anything or if I could have done without.   Yesterday I wished I hadn’t said anything.   People who aren’t familiar with a vision impairment get concerned with the capabilities (or limitations) of a child who can’t see.   It’s hard to imagine a world with limited sight if you’ve never tried.  

Yesterday I heard the tour guide pull another one of the group over to tell her to watch out for my daughter because she was blind.   The other person had already figured something was going on, she said.    It was a kindness, something they were doing to try and help, but I did wish I hadn’t said anything.   I’m always proud of my daughter for not needing help and being able to navigate successfully in a sighted world.

The Big Boy Update:  Not only was my son interested in writing our dog’s name last night, he was particularly interested in drawing the Japanese characters he saw on the dinner menu on a piece of paper with his chop stick.   He didn’t want to let his menu go with the server so I took pictures of the Kanji characters and let him keep copying from my phone onto his paper.

The Tiny Girl Chronicles:  My daughter notices things the rest of us don’t pay attention to.   I’d like to say it’s because she’s so observant, but I think it’s really because she absorbs the input she gets from her environment and that amount of information is more limited considering she’s not seeing full scenes all day long.   Tonight she came into our room in the condo and told me our door locked with a handle and a button in the middle of the handle.   She followed that statement by saying Uncle Bob and Uncle Brian’s door had a bolt lock (demonstrating how the lock was turned) and there was a flat plate on the other side of their door.    Their door separates one half of the condo from the other and she was completely correct on how the two doors locked differently.

Loosee

From time to time the children miss our dog, Lucy, who died at the end of last summer.   Lucy comes up in conversation sometimes and tonight at dinner I found myself talking to Uncle Bob and Uncle Brian about our thoughts about getting another dog (no plans) and how the children missed Lucy but remembered her from the tree they planted in the back yard.

This is one of those times as an adult when you don’t think the children are paying any attention to you at all while you and the other adults have conversations while the children are doing something right beside you.  It is common however that your child or children is in fact listening to some degree to the words you’re saying, even if they’re not able to get the whole conversation.

Tonight my son was working with a piece of origami paper and some chopsticks.   We didn’t have a pencil or pen available so he was drawing on the paper with the wooden chopstick which yielded surprisingly better results than I would have thought it would.  After talking for a bit about dogs, I looked over to see my son had written this on his piece of black origami paper:

You may remember that my son has been having difficulty writing and has been in occupational therapy this school year but you can see very clearly he wrote, “loosee”.   His writing is getting better every week.   Second, he is learning how to both read and write and he all on his own figured out how to phonetically spell ‘Lucy’.   And third, he’s gotten from his teachers that sometimes you need a double letter to make the sound you want to make such as the ‘oo’ and ‘ee’.  

He wanted to keep the sheet with the marks on it from above when we left for dinner.  I told him he absolutely could.   I’m going to stick this little piece of paper in his scrapbook folder I’m so proud of it.

The Big Boy Update:  We went on a jeep tour of the desert today, including visiting the San Andreas Fault.  There were six of us in our jeep, my children, husband and me and a couple, Milo and Dina who were teachers with three older children who didn’t come along for the tour.   My son for some reason without saying anything decided he liked Milo.  He would lean up against him and even tried to take a nap on him as we got towards the latter part of the trip.   Milo seemed to like my son too and said he didn’t mind.

The Tiny Girl Chronicles:  During our jeep ride to the San Andreas Fault my daughter did her best to listen to what the driver was saying, although most of it was interesting to adults more than children.   She couldn’t see what was happening outside the jeep but when we got to the various stops she would get down on the ground and play with the sand/dirt/gravel to try and experience the desert as best she could.   Even though she couldn’t see much, she seemed to enjoy the day.   We helped her feel whatever she could including plants, some of which smelled interesting.

This Isn’t The Desert

I did make it to vacation today.   I was gladly up at four o’clock this morning to head to the airport with my total baggage consisting of my laptop bag with my purse inside.   I got to the airport and had not a single hiccup in the entire day’s travel.   I arrived in Palm Springs at 10:18AM and caught up with everyone shortly thereafter.

I’ve never been here before.   I was told it was, “the desert” by my in-laws.   I see mountains all around but the signs of desert climate are clearly visible.   My son and daughter didn’t find the desert here to be what they were expecting.   I am guessing when they’ve talked about deserts in their class or they’ve seen them on television shows what’s been presented is the completely dry, sand dune type of desert.   That’s the mental image they expected to find when we landed here.

My son made his opinion know as they were driving in from the airport, saying, “this isn’t the desert, there are buildings here.”

My daughter wanted to, “touch the desert”.   The closest thing available was the median in the rental car parking lot which had sand and pebbles.   She rubbed her hands all over it and got dirty, but she was happy feeling some of the desert.

Tomorrow we’re going on a jeep ride to the San Andreas fault during which we’ll have a chance to stop and experience more desert-like areas for the children.

The Big Boy Update:  My son had asked my mother-in-law a question tonight in the car as we were heading to dinner.   She realized she might have missed a turn and stopped to talk to Uncle Bob about  directions.   My son was apparently impatient for Nana to get back to his question because he said to her, “c’mon, speak up.”

The Tiny Girl Chronicles:  My daughter has suddenly started (as in within the last two days) calling everyone poopy and stupid if she doesn’t like what’s happening.  I’m not sure what the impetus is, but the consequences are getting stiffer.

Not According to Plan

Today our family left for vacation.   It did not go as planned.   We got up early, were all packed, got the children in the car and go to the airport.  My husband printed out the baggage check tickets and we went to the check in area and then I reached into my pants pocket where I had put my driver’s license and…it wasn’t there.   Thus ensued panic—on my part.  My husband, true to his nature, was calm.   It was gone though and no matter how many times I checked the pocket, my license wasn’t there.

I retraced my steps to the car, drove with lightning speed home and it wasn’t there, grabbed my passport and still missed the flight.   It’s spring break week for many people and schools so every flight was overbooked and I was on standby for a multiple connection trip, which I didn’t make on the first leg, causing the other, questionable connections to be moot.

This is a long, but well-ended story with one of the staff and their manager getting me confirmed seats on flights that were in standby only for tomorrow morning very, very early (which suited me just fine).   I went home and got a lot of things done without children for the remainder of the day.

Bad morning with me losing my mind, going into hysterics because in all the years I was a business traveller and, even for all my adult life, I’ve never lost my drivers license.   The good news is I did find my license and I am traveling tomorrow, but it wasn’t the plan for the start of our vacation.

Thanks to my husband for taking our children and luggage all the way to California.   I’m looking forward to catching up with family and starting my vacation a day late, but with drivers license intact.

The Big Boy Update:  My son is allergic to cats.  Our friend, Dylan, who is thirteen, likes to wear a cat headband with cat ears.   My son told us he needs to get allergy tested for cats because, “Dylan is part cat”.

The Tiny Girl Chronicles:  My daughter has upcoming cataract surgery on the 19th.   It will change her vision dramatically initially, but we’re hoping it will be for the better.   We’re carefully preparing her for the surgery, not telling her too much because she can’t understand and make concrete the change until she experiences it and we don’t want to put any fear into her mind.   It something we’ve been hoping for, but we know it will be a big change when it happens.   I think she will impress us, like she always does, in how she handles the change.

Spelling Achievement

I’ve never been good at spelling.   It has been to my great advantage that spell checkers and autocorrect were invented and implemented so seamlessly into the technology I use and embrace.

But with all the spelling algorithms and predictive logic out there, there are still some words I just can’t spell.   And that means I can’t get close enough to spelling them for the correct spelling even to be offered.   But this past week I made an advancement in my personal spelling arsenal.

There is a word I just couldn’t get even close to, and yet with two sick children, friends and associates all going down around us with the same stomach virus, I found myself using one word more than I have in a long time—and I learned how to spell it for good as a result: diarrhea.

The word “diarrhea” just makes no spelling sense to me.   But no more, whenever I need to describe this particular undesirable and uncomfortable bodily function in text in the future, I won’t need to rely on spell checkers and autocorrect to sustain me through.

The Big Boy Update:  My son likes Lego Ninjago.   He has some of the Lego characters, there is a game he plays on the iPad and show he watches on the iPad as well.   One of the other things he’s found are YouTube videos relating to the game.  One person uploaded his collection of over one hundred Ninjago Lego characters, arranged on a large Lego board.   My son wanted all one hundred.   We suggested he see which ones he had already because we thought he had a lot.   He went upstairs, got a large Lego board and found (put together) all the characters he had, organizing them the same way as the person from the video had.   He doesn’t have a hundred (he has far, far from it) which means he’s identified more wish list items.

The Tiny Girl Chronicles:  My daughter had something on her neck, possibly food, that my husband wiped off.   As he was wiping a the delicate part of her neck she cried out, “ow, you hurt my blood vessel!”

Ready For a New Dog?

Before anyone goes and gets excited, we do not have a new dog.   Sakes alive no.   We loved our dog and miss her, but our family (mostly meaning my husband and I) don’t want to add another member to our family right now, furry or otherwise.

But my children do think about dogs and would be completely happy adding one to the family, especially as they have no idea what’s involved with taking care of a dog other than petting it and playing with it.  

We had it easy with our last dog.  She didn’t wander off and didn’t go to the bathroom in the house.   A new dog would necessitate either regular walks or having a fence built, neither of which my husband and I are interested in undertaking.

Today though we had a visitor.   Aunt Jo came to town and while she was at an appointment she asked if she could leave her dog with us.   Bailey, she said, could stay in the garage if we preferred.    We thought Bailey might like to be in the sun on the deck, which seemed to work out quite well based on tail wags.  

My son was home recovering from the stomach virus he was battling yesterday.   He was laying on the couch, watching my husband move the dog from the garage to the deck when he spoke up and said, “see, we’re ready for a dog; one just got dropped off.”

The Big Boy Update:  We’re preparing for our spring break trip out of town.  I told my son and daughter they could fill their backpacks half-way up with things because we were filling the rest with some new activities and fun things for the plane ride.   My son came downstairs with a full bag of Lego characters and parts for his half.

The Tiny Girl Chronicles:  My daughter decided to fill her half of her backpack with Paw Patrol vehicles and characters, something she loves to take on her trips to Detroit as well.

Third Member Down

This morning at seven o’clock my son vomited.   He vomited again thirty minutes later and about every thirty minutes after that until close to five o’clock this evening.    He was initially glad to be getting out of school but a short number of hours later he was just glad the floor wasn’t moving out from under him and the bottle of water was still reasonably in reach.

And here’s the thing about my son—he’s been the best sick person in our family yet.   My daughter was very good, missing the trash can a few times and nailing the floor in red splashes galore once, but otherwise she was a calm, non-complaining sick person.   My son was even better.   He would lie wherever, sit up, get as much of the vomit (water and ginger ale) into the trash can, wipe his mouth on a cloth and tell me if he needed a new cloth or anything else.

He was so mentally tired of being sick that at one point he sat up and leaned against the bed.   I asked him if he wanted anything and he said no, all he wanted to do was think.  He did have one request which was to have me stay near him while he lay on the carpet and tried unsuccessfully to sleep.   I stayed in the room and did whatever work I could and helped my son into dry clothes when they got soiled.

Just about dinner time I looked down at my garfield-clad pajama wearing boy and heard him say, “can you take me to bed?”  I carried him up and removed every stuffed animal, extra blanket, sleeping bag and throw pillow from his bed, telling him I didn’t want him to get them dirty if he vomited again.  He said all he needed was a blanket.   I put one on him and he went straight to sleep.

So that’s three of the four members of our family out with this stomach virus.   My husband is using hand sanitizer in epic proportions, in the hopes he’ll miss the bug.

The Big Boy Update:  Early this morning before my son got more ill he wanted to watch Cosmos.   The episode was about continental formation and started with Pangea.   My son looked at me and said, “I want to live on Pangea.”  I told him Pangea was back in time.   He wasn’t bothered by this at all because he’d seen the episode before and knew Pangea would eventually break up and become the continents we know now.   He told me, “but we are on Pangea today!”

The Tiny Girl Chronicles:  My daughter is excited to have our neighbor, Bryna, visit her for special friends day tomorrow.   She’s going to show Bryna the work she does in the classroom.  Tomorrow I’m looking forward to hearing what Bryna thought about her class and the work they do.

I Didn’t See It

This past summer I was dropping off my children at summer camp at their school.   During the school year you drop them off in carpool line, which is nice, because your children are whisked out of your car and you have nothing to do other than wave, say goodbye and drive off when the doors are shut.  Summer camp is a different matter.   You park, walk the children in, wait for them to play on the playground until official camp start and then get stuck in round after round of goodbye hugs once your child realizes it’s a delay tactic from entering the classroom.  

It was during this time I noticed one of the mothers at school talking to one of the teachers.   The two ladies were talking in a friendly way, it was clear they had become friends.   For some reason I got the sense on more than one occasion they wanted to have a personal conversation about something maybe with the mother’s child or the classroom or the camp schedule or something else and I stepped away, not wanting to intrude.   

I didn’t think much more about these two ladies until I got a phone call from the mother a few months later telling me she needed to tell me something.   The something was she was dating someone at the school and they were being very careful who they told about it initially.    I was confused.   There was only one male on the school staff and not only was he married, even if he hadn’t been, I totally couldn’t picture them together.    I knew my friend on the phone had been working through a separation and divorce from her husband, but with all that going on, I still had no idea who it could be, especially at the school.   

Then, she tells me it’s a woman.    Oh.  Oh.  OH!  I’m dumb.   When she told me who it was, I was at first very happy for them both because they just seemed like a good match and heck, I really liked them both and who doesn’t want your friends to be happy?   Her now partner (and soon to be wife) had also been working through a divorce from her husband as well. 

So all that preamble and you’re probably thinking, “what does that have to do with the title to this blog post?”   Here’s what struck me.   In thinking back to how I saw my two friends interacting, If it had been a man and a woman, I would have easily recognized the signs of attraction.    Why didn’t I see it in this case?   Was it because they had both been married to men and I’d put them in heterosexual “boxes” in my mind?   I don’t have any issues with anyone choosing whom they want to love, but maybe I got trapped into seeing behaviors that followed that line of thinking, even so. 

Regardless of what my mind didn’t or should have seen.   I’m happy for my friend’s new found love and I’m hopeful I’ll see love for what it is and not only what I might expect it to be in the future. 

The Big Boy Update:  My son had a play date with one of his classmates this afternoon.   Yesterday he came home, saying he wanted a playdate “tomorrow” so I sent a text and it just worked out it could easily happen.    Some playdates seem to take months to coordinate, I like the easy ones. 

The Tiny Girl Chronicles:  I though my daughter had made a mess on the floor yesterday.   This was one of those, “I can’t believe I thought that, now I feel like crying” moments I have from time to time with a blind child.    My daughter had gotten out a board game, had no one to play with, had put it all over the floor in the hopes of setting it up to find someone to play—and I thought she was just making a mess.   When I realized what she was doing (and that her brother didn’t want to play with her, even though she’d asked repeatedly) I sat down and happily played with her and then helped her get everything back in the box, thanking her for the game. 

Playing In The Rain

We’ve gone out in the rain with the children before but it’s been some time.   It’s likely been about a year ago, when April comes around, bringing warm showers that both tinkle and pummel down with gusting winds that blow umbrellas askew.

Tonight after dinner my daughter was asking if it was raining.   I told her it was raining a little bit and if she wanted to go out in the rain that was fine with me.   I told her when she came back in she could take her wet clothes off and put on her pajamas (or “night nights” as we call them).   She went to talk to my husband about the going out in the rain thing, possibly wondering if she needed a second opinion on the advisability of such action.

She had only just headed out the door when I heard the wind pick up and the rain start to pelt down.  My son heard it too and apparently he was also interested in going outside.   He came running downstairs, yelling for his sister, saying it was raining again and the outside awaited them.

There was some door opening and closings, in and out running and confusion for the next bit because they wanted rain boots, rain coats and definitely, without question they had to have their umbrellas.    Fully geared up. we sent them outside with a stern warning they were not allowed to come inside without waiting for a towel at the door.  

That was about an hour before bedtime.   My husband and I largely forgot about them while we cleaned up the dinner, finished the laundry and re-tidied the house.   Intermittently we’d hear happy screams and laughter from outside, causing us to look out the window and cringe at how muddy they must be getting at the swing set while at the same time smiling at the joy they were experiencing in the simple fact of water landing on their bodies while they played together.

I think they would be out there still, in the dark, laughing in the rain, if we hadn’t brought them in for bedtime.   I miss being a child.

The Big Boy Update:  My son lost his second tooth today.   He didn’t even seem that out of sorts when it came out.  He was in the bonus room before dinner and yelled down the stairs, “my tooth fell out”.  He got a tissue for the blood and we put the tooth in a bag.   There is now a dollar under his pillow (we decided a small, but paper-version of currency would be reasonable for teeth).   He is looking forward to more teeth falling out.

The Tiny Girl Chronicles:  My daughter can spell her name both in cursive (regular class) and in braille (vision impairment work).   She loves to write her name and does it with her finger all the time in the air, on the ground with chalk, etc.   She also has one other word she loves to spell:  rooster.   Her VI teacher says she’s the only preschooler who can spell rooster.   Today she brought home a necklace she made with braille beads that spelled Rooster and a sheet of braille type where she wrote out rooster more than once.   I’m not sure what the obsession is, but she likes roosters a lot.

I Made It Through

I was sick last night.  I got what my daughter had Thursday and Friday.   We found out today that our next door neighbors had it as well, with each of their family members getting it two days offset from the prior person.

Was it bad?  Yes and no.   Because I knew the duration my daughter had gone through with vomiting and then exhaustion I was ready for a rough but manageable night.   I started vomiting at eight o’clock and by three in the morning my stomach had shut down and there was no more bile being aggressively pumped in, causing me to vomit every hour.  

After that was able to rest a little more, excepting the trips to the bathroom due to the other insistent symptom, diarrhea.  (Did I mention this was going to be a graphic post?  Oops.)   The only problem I had now was getting in some sort of pain relief for the body aches and flu-like symptoms.   Symptoms I had, even though I had no fever.

I took Tylenol, but it say in my stomach with the water and ginger ale and turned into a largely unabsorbed acidic mess which ended up coming back up an hour later.  I had better luck with children’s liquid ibuprofen and was in a lot less distress and pain, now twelve hours after onset of symptoms.

The rest of the day I’ve been moving very slowly, mostly resting and just now at close to twenty-four hours after I started to feel sick, I think I’m going to be okay.   We’re all hoping my son and husband don’t get it.

Special thanks to my mother, Mimi, who made us a huge vat of our favorite vegetable soup, bread and a special strawberry cake dessert.   By the time she dropped it off, careful not to set foot in the house of sick, we were all hungry.   I ate two bowls and might go back for a third later.

The Big Boy Update:  I was lying in the bed today recovering from being sick when my son came into the room.   I said, “hey buddy, I love you.”   He looked at me and said back, “I like you.”  I’ll take what I can get.

The Tiny Girl Chronicles:  My daughter was worried about me today.   She went to the outside refrigerator and got a ginger ale—something we save for upset stomachs—and brought it to me.   She also drew me a card and wrote “I love you mommy” on it.

Caught it?

My daughter is better, good news there.  But I think I may have caught the virus.  I’ll let you know tomorrow, for now, I’m getting into bed.

The Big Boy Update:  My son said at the table this morning, “I’m really interested in Ninjago.  How can I get interested in something else?”  We tried to give him ideas of other things to do.  He wasn’t totally happy with our suggestions, but eventually he ran off and found something to do.

The Tiny Girl Chronicles:  My daughter and I spent over and hour on the swings today, swinging and talking.  We had a nice time.