My Eyes

This post is about eyes, but not my daughter’s for a change.   I’ve had a lot done to my eyes, interestingly enough some of the same things my daughter has had done to hers, only in my case it was elective, done to improve my vision.

In 2013 I looked into improving my vision with LASIK but found out I wasn’t a good candidate because my corneas were too flat.   What could be done was something called a “Clear Lens Exchange” that would not only improve my vision, it would arrest the progressing need for reading glasses due to hardening lenses we experience as adults, known as presbyopia.

The surgery involved removing my natural lenses and replacing them with artificial ones.   It’s a very common surgery but most people know it by a different name—cataract surgery.   A cataract isn’t something you grow, it’s something that becomes.   It’s your natural lens but over time it’s clouded and the term used to describe the lens at that point is a cataract.   In my case, I didn’t have clouded lenses so instead of cataract surgery (by name), I had “Clear Lens Exchange” surgery, which is the exact same surgery, only my lenses were fine other than the hardening, making it more difficult for me to focus and see some near and far distances.

The surgery on the left and right eyes were successful although some tweaks had to be done afterwards.   The left lens is great for close vision but isn’t perfect at distance.   The right lens is stellar at distance but can be annoying close up.  And all that means my brain has to deal with one fuzzy image and one clear image when I’m looking at things close up.   For distance my brain relies more on my right eye and uses the left eye for depth perception.

In the adjustments following surgery I had AK (to correct for the astigmatism in both eyes) LASIK in my right eye to fine tune the visual range and PRK in my left eye to adjust my focal length because the artificial lens didn’t settle in the position the doctor had targeted.

So both my daughter and I have had our natural lenses removed.   She doesn’t have artificial ones implanted for a number of reasons due to her age and the complexity and state of her eyes.  Next I had something done called a YAG Capsulotomy.   The lens capsule that holds the natural lens in place  in the eye is thin and crumples somewhat like cellophane once the artificial lens is implanted—artificial lenses being small, mechanical devices that take up far less space in the lens capsule than the natural lens.

The YAG capsulotomy is simply a laser that targets the lens capsule in the area of your field of vision and blows a hole in the capsule, affording you a clear, unobstructed or obscured line of sight.   It’s an easy procedure in the office that takes five minutes with no discomfort.   I literally only heard the laser pop and felt nothing.

My daughter has also had her lens capsules opened in both the front and the back.   Her openings have been due to the lens removal and subsequent scar tissue removal in one eye.   So we’re the same there.   The only difference is I can see well without glasses and she can’t see at all.

And I’m enormously thankful for the vision I have, but it did seem to be getting to be a worse offset with the left and right.  I noticed it most when reading to the children at night before bed.  Since it had been over four years, I thought it might be time to go for a reevaluation with my eye surgeon.

And here’s what I found out.   I have 20/15 distance vision, which is pretty nice—I had no complaints there.   But my near vision was still 20/30, with the right eye being somewhat better were it not dragged down by the left.    The near vision can be corrected, but there’s a catch—I would have to sacrifice the distance vision to bring the near vision in line with the other eye, that’s just how it works, the lenses can only do so much.

The doctor told me I had achieved optimal results but I had another option (one I had known about and had been doing for a bit before the appointment).   I could work on the muscles of my left eye.    Once the artificial lens in in place, there is no time limit on when you can work and develop the eye muscles.  Just like you can get in shape by exercising in general at any age. There’s a chance I can bring the left eye closer in line with the right, mitigating some of the uncomfortableness reading and doing closeup work.

All I have to do is patch the right eye (or keep it shut) and do something that will push the limits of the focal capabilities of the left eye.  So I’ve been working on it a bit each day.   Hopefully I’ll see some improvement soon.   For instance, as I type this I’m using only my left eye and while I can read everything, it’s not crisp.   But I can tell my eye muscles are trying like fury to bring it into focus.

So if you see me looking like a pirate or think I’m doing a really long wink at you, I’m probably just working on my vision.

The Big Boy Update:  At dinner my son declared, “I’m a dad that hasn’t had children yet.”

The Tiny Girl Chronicles:  My daughter wanted to make a birthday present for our adult friend, Nitin, tonight as we’re celebrating his birthday at Movie Night.   She didn’t tell me her plan and I think it evolved as we worked but she taped two pieces of paper together, drew a lot of things on it and had me write a birthday message to Nitin.   Then she wanted to roll the two sheets into a cylinder and tape it.   Her next idea was to cut a circle and tape it to the bottom of the cylinder.   So I had to find my circle cutter because I can’t handle inaccurate cutting, but my OCD on things like that would be best addressed in another blog post.   Anyway, circle cutter found and we had a red paper circle the same diameter as her cylinder.   We taped it on and then she went to the candy bowl and put candy in it for Nitin.   I’m not entirely sure how Nitin will be able to read his card, but it’s a pretty creative present from a five-year-old.

The Most Joyous Thing

I think I may have mentioned before we have a purple yoga ball in the house.   I don’t do yoga.   That’s not to say I haven’t tried, it wasn’t for me, too much holding still.  And here’s the think about holding still—it’s hard.   Especially in the positions the yoga instructor tells us we’re suppose to be in.   At any rate, my children love the purple ball.  

It was an afterthought of a Christmas present from Santa on account of Santa only brings the children one gift a piece and the ones my children were getting this past Christmas were rather small in size.   So throw in a five dollar yoga ball from China, blown up large beside the tree and surely it would be a happy Christmas morning.  

Today, six months later, I don’t remember what they got as presents from Santa but that purple ball is still a big item in our house.   It has a “home” beside the couch in the living room although it makes its rounds across all three floors of our house.   My daughter is the ball’s biggest fan, having learned to do some impressive bouncing routines on it utilizing other pieces of furniture and scaring most adults in the vicinity who watch her when she does.

My husband sent me a text two days ago with the words, “I think the purple ball is the most joyous thing in the house” referring to my daughter’s infatuation with the ball.  

Only now there is trouble brewing because my son has recently decided he wants to have time with the purple ball too.   Mind you, he’s never cared about it before, but perhaps since it looks so very fun with my daughter launching her feet into the air, he wants a turn too.    And this has lowered the overall joy of the purple ball, mostly because squabbling has arisen around it.

This may well be the next iteration of “the favorite seat”.   My husband and I are already working on ideas to help the children come up with ways to manage time with the purple ball that doesn’t involve hitting, yelling or crying.    We’ll see how well we’ve fared in a week after we count the bruises.

The Big Boy Update:  My son got a card from one of his teachers thanking him for his end of year gift.   As he opened the laser cut, multi-colored card he exclaimed, “what a work of art!”

The Tiny Girl Chronicles:  At dinner last night my daughter asked, “who’s at the head of the table” since she couldn’t see who was sitting where.   Her following question was a surprise but I suppose followed logically, “well, then who’s the armpit of the table?”   My husband explained that he and I were sitting across from each other so he supposed we’d be the armpits.   My son was a step ahead though and said, “no, daddy and mommy would be the arms of the table.   The armpits would be the next level down.”

So Happy To Swim

My daughter hasn’t been able to get her head (well eyes) wet for weeks now due to the surgeries she’s had on both eyes.   She’s been better about keeping her eyes dry more so than we have.   On the few incidences where she got wet, for instance in our friend’s pool in Maryland, she burst into tears and got out of the pool because she was so upset.

In the bath she’s been the same little diligent child she always is.   Recently she’s wanted to wash her own hair and has gotten pretty good at it.   As she was leaning back in the tub to rinse last night I told her, “you didn’t get the very top part near your forehead”.   I was surprised when she said, “but I can’t get my eyes wet.”

I told her there was good news, she could now get her head wet and could even go under water.   There was this serenely happy look that came over her face—the face of my child who loves nothing more than spending time underwater in the pool.    She asked me again to make sure she’d heard me right and then asked again if it was okay to go under in the tub.   “Go ahead”, I said, and she dove under without another word.

Getting her out of the tub after that was a challenge because she wanted to stay under water and see how many seconds she could last and could we please count again to see if she could beat her record. Today our sitter was picking up the children and I suggested the pool because we were cleared for swimming.  

My daughter was at the pool until well past dinner time, happily swimming and going under water as much as she pleased.    It’s almost the end of June, she’s waited a long time to swim, hopefully she can make up for missed time in the next few weeks before we go back to Detroit for potentially more surgery.

The Big Boy Update:  My son and his friend set up some NinjaGo Lego characters in a certain configuration.   It looked like a little Ninja army aligned for battle.   My son asked me to come in and take some pictures.   Then he wanted dad to see.   But when we came downstairs instead of suggesting I show the picture he said to his father instead, “we have a picture but I’d rather you see it in person.   Those pictures are just to remember it.”

The Tiny Girl Chronicles:  My daughter had lost one of her arm muffs the other day.  She had all four in her hands when she was going up the stairs but at the top, only three remained.   I told her I’d help her find the missing muff, heading back in the direction we’d come.   She yelled out in a very worried voice, “go look everywhere!”

I Should Have Known Better

I made a mistake with my son today.   I didn’t realize it until it was too late at which point I was doing damage control and apologizing to my husband for the error in judgement.  In hindsight, knowing my son’s temperament it should have been obvious, but that’s what hindsight is all about, isn’t it?

My son has been in need of new shoes for a while.   We weren’t really paying attention to them mostly because he wasn’t complaining and also because children wear out shoes so quickly it seemed like we’d just bought him his last pair only a few months before.   He has two pair of shoes, one pair was older and had a velcro detachment problem in which the velcro was separating from the backing, causing the shoe not to remain closed—on both feet.

The other, newer pair was having a sole problem.   Sections of the sole kept coming off, which wasn’t a real problem because he wasn’t going to wear out the shoes to the point he couldn’t wear them before he grew out of them, but it was getting a bit extreme and my husband decided to bring out the gorilla glue and duct tape yesterday to try and fix them temporarily until we could get him to the store to be measured and new shoes bought.

Today after camp while I was with my daughter at her Orientation and Mobility session with Jane, my husband took my son to the shoe store.   When we got home my son smiled and asked if I could tell what was different about him.   I pretended it was his hair, maybe his shirt, wait a minute—did he have on new blue and grey shoes?  

He was happy running around in his shoes for the next few hours and that’s when I made the mistake.   I asked him if he wanted to throw away the shoes that were frustrating him because they wouldn’t velcro closed?  He wasn’t sure but decided the best thing to do was put them in the very large trash bin in the garage.  

Great, shoes in the trash, my son participated and that’s when it all went wrong.  My son realized something he loved was now gone.   GONE.   He was upset.  He wanted them back.   He was in the garage trying to climb into the dirty trash bin with the lid over his head to get them back.   He was crying; he was angry; he was bereft.    And we told him in the kindest of terms (and then in more firm terms) he wasn’t going to be pulling them out of the trash can and neither were we.  

He might be over it now, but that’s only because he’s asleep.   He was so mad at one point he was throwing his new shoes around, saying he hated them.   I hope he’s okay in the morning and has forgotten about his old, beat up, non-functional shoes.

The Big Boy Tiny Girl Boat Conversation:   This morning in the car my son asked his sister, “do all boats go on water?”   She thought for a second and replied, “I think so, unless they’re parked on land.”   He refined his question to see if he could trick her by asking, “but do all boats move on water?”  She thought about this and told him, “said sailboats need wind to move.”   This was apparently the right answer because he told her, “you’re correct.”

Eating With a Fork

My daughter is lost in a land of near blindness, which is a change from what she was able to see two months ago.   She’s regained a small fraction of the small fraction of sight she had and we’re grateful for that because she doesn’t bump into things as much as she did before, but it’s still hard for her to get around.  

One of the things she started doing that was new when she lost complete sight was rebelling when eating her food.   She couldn’t see anything, including where the bowl was.   When she found the bowl she couldn’t figure out where the food was in the bowl or how much was on her spoon or fork.   To sum up, it was hard to get the food in her mouth.

Her play therapist told us to put constraints on her, to exert control on her environment because she was feeling so out of control.  Instead of this being a punishment, this would help her.   We were told to tell her if she wasn’t willing to use the fork to eat her food (eating with her hands not allowed) then we could either feed her or she could wait to eat until she was ready.  

I thought this would be tough for her, but it was the right advice because she understood it, even if she didn’t like it.   It’s made her more willing to listen to us as we give her advice on how to use a fork (a tricker thing to do than you might think since you’ve been doing it for so long).   Stabbing just doesn’t capture the food.  You need to stab and then push in an arc against the bottom of the bowl into the side to make sure you get good purchase on the food.

My daughter still doesn’t want to always eat with a fork, but since we starting requiring her to use one correctly, she’s gotten a lot better at it.

The Big Boy Update:  My son found a lightbulb my husband had sitting out on the counter to be replaced this morning.   He put it over the top of his head and said, “if you see a lightbulb, do this and say, ‘I have an idea’”.

The Tiny Girl Chronicles:  I bought some little arm muffs from China and when they arrived in the mail I gave them to my daughter.   They’re basically loose furry wrist bands, two in black and two in white.   A lot of times things you think will be exciting to you child turn out to not be and then things you think they won’t care about they can’t put down.   I had those little furry muffs for several months and didn’t give them to her until last week.   She’s worn them around all day and even to bed, loving them and being particularly interested in only wearing the white on her wrists and the black on her ankles.   I only wish she could tell the colors herself when she’s putting them on.

Club Champion

My husband just won the member club championship today at the golf club we’re members of.   My husband’s played golf since he was quite small.  He’s quite good, even though he plays much less than he has in years past.   We’ve been a member of a club in our area for three years now and has been in the club championship tournament all three years.

The past two years have been interestingly almost exactly the same.   He was in the championship flight of the tournament and played well, but so did Austin, one of the other members.   He and Austin came into the eighteenth hole and finished tied for first place, went into sudden death and my husband lost several holes later—both years.

This year he’s been playing well and went into the tournament hoping to beat Austin, whom he says is was closest competition in the tournament.   Yesterday he finished the round two under par, but due to course conditions due to recent weather he was in first place.   But everyone was coming in with higher scores so his lead was significant at six strokes above the second place person.

Austin wasn’t playing well, but this was due in significant part to his clubs being lost by an airline the night before the tournament started on Saturday, causing him to play with an old set of clubs.   Today my husband told me he’d message me if he was still playing well and if so, perhaps I’d like to come out and see him finish?   I said I’d like that.   He followed it up with, “unless I’m not playing well, in which case I won’t message you.”

But he did message me after the fifteenth hole, saying he had a significant lead so I headed out and watched him finish his round.   I didn’t know what his score was but I have to tell you I was excited to hear that not only did he win, he won by eleven strokes.  

I think there’s some crystal vase or something we’re going to have to find a spot for on a shelf for the next year now…

The Big Boy Update:  My son wanted to have a party today.   I said okay and I’d be out after getting ready in a little bit.   When I came out of the bedroom I was surprised to see every mug, cup, plastic plate and bowl on the counter, many of them filled with all the snacks we have in the pantry.   He was writing names in sharpie on the cups and mugs for his friends and then had me look to see how he’d put all the ice packs in the fruit in the refrigerator in preparation of the party.    As the sitter arrived I told him to have a good party (there were already seven children at our house from our street) he asked me, “mom, can you invite all my friends from school too?”

The Tiny Girl Chronicles:  My daughter is obsessed with the large purple yoga ball we have that Santa gave them (that I got from China).   She bounces on it seemingly all day long.   She can’t participate in activities as easily as her brother and friends and when there isn’t much for her to do, she masters her balancing and bouncing skills.   It’s scary to watch but she’s in a lot of control just because she’s gotten so much practice in.

Kayaking

Did I mention we have the best sitter ever?  Nanny?  Sitter?  You pick the term, but you can’t have her, she’s ours.   Well, she’s half ours—we share her with my best friend and running buddy, but while she’s at home from college for the summer we’re happy she’s available to spend time with our children.

Today before coming over to get the children at eleven o’clock, I got a message asking if the children would like to go kayaking?  I asked them and my son was excited while my daughter insisted she was never leaving the house again.   It works that way here—only one child is ever for anything while the other child is vehemently of the opposite opinion.

Seeing as my children are five- and six-years-old, they didn’t have a lot of say so in the matter so I filled out the online waivers and packed a bag with snacks, towels and sunscreen.   They donned swim suits and when Morgan arrived were marginally ready to go, lacking only in lunch.

Two hours later the pictures started coming in of my children in kayaks, my son with our sitter’s mother (also a friend) and my daughter with Morgan herself.    And they were both paddling—something they’d insisted they wouldn’t possibly be able to do because it was too hard.

They both had such a nice time.    They’re always excited to hear that Morgan’s coming over to spend time with them.  

The Big Boy Update:  After today’s kayak trip my son arrived home asleep.   He paddled a lot apparently.   When I walked in the door Morgan was trying to get his swimsuit off his limp body so he could go back to sleep on the couch.  

The Tiny Girl Chronicles:   Before getting in the bath today my daughter, naked, pointed to herself and said, “what’s this little button?”  I said, “that’s your clitoris.”  She replied, “do boys have a clitoris?”  After telling her no, that boys had a penis instead she turned back to herself and said, “hello, clitoris.”  I swear folks, we can’t make this stuff up, it doesn’t get any better than a child’s unadulterated view on the world.

Capable

My daughter is getting minimal vision back but it’s not stopping her.   Sometimes you have to give her a chance to really see what she’s capable of.   Sometimes she gets frustrated but other times she has a steadfast will to figure things out and not give up.   Today was one of those days.

I asked her if she wanted to help me fold the laundry and she said yes.  I let her dump the entire load on the living room floor and told her there were two large sheets and three pillow cases, could she find them and put them on the chair?

I walked away and when I came back she’d gotten all the sheets on the chair and had moved on to the white cloths.   She’d found all of them and had put them in a very neat stack (something she’s been working on that’s harder than it seems when you can’t see how cloths under the top one get moved around).  

She moved on to the clothes and identified shorts, shirts and pajamas mostly by feel.   Sometimes she’d call out to ask if something was hers or her brothers and then put it in the proper pile.  

Then she worked on the socks.  Most of them were different dimensions/sizes so she could match them up and then she invented a way to pair them by putting one sock inside the other, leaving a bit sticking out of the top so you could easily separate them.

Some of the clothes were inside out but she didn’t have any trouble fixing them when I told her which ones.   Then she moved on to the pajamas and folded them into pairs, matching pants with tops.

She did all of this and didn’t think much of it, she just wanted to help.   It’s very humbling, watching her work with and not ever complain about her inability to see.

The Big Boy Update:  My son is having a fantastic day.   Uncle Jonathan brought his Nintendo Switch over to play with him and they’ve been in the bonus room for hours.   It’s going to be hard to top that for the next week in fun, I’m sure.

The Tiny Girl Chronicles:  My daughter came up with a different way to fold socks today.   She wanted to show me and called me over.   She said, “watch and learn, mommy.”

Neuralgia

At some point in my life we think, but aren’t sure, that I broke my neck.   Something happened though because from my teen years I remember being an avid neck cracker.   It made great noises and seemed to make me less uncomfortable.   I wouldn’t say I was in pain as a teenager because I don’t remember more than uncomfortable.  

By the time I got to my twenties and was working it had gotten worse.   At my job at IBM I spent a reasonable amount of time  on the phone and I was grateful when someone found an attachment that went on the back of the handset so I could more easily hold the phone on my shoulder while working on the computer at the same time.

One of my managers at IBM suggested I go to a Chiropractor, who did give me some relief.   I remember the first day after taking X-rays she looked at them and told me, “your neck is straight, it doesn’t have the proper curve to it.   I’m not sure why, but if you come for another six months I think we can make some progress on it.”

I didn’t listen to her or believe her perhaps but more to the point I wasn’t in a position with medical insurance to go to her more than a few times.    In the years following the pain in my neck got worse. I saw my general practitioner who said I had “cervical strain” and was prescribed anti-inflammatories and muscle relaxants.  

In my thirties a friend suggested I try seeing her Chiropractor to see if they could help me.   They did an X-ray and I remember trying not to cry in the office when Dr. Kubasko told me the state of some of my vertebra and discs.   The chiropractors in that office—the office I still go to today—helped me some but a few months later I went back to my general practitioner and said I needed to really have it looked at in more depth.

MRIs were done, I was referred to a spine clinic and fusion was recommended.  I had a second fusion a year later and a few years after that, multiple pain clinics and lots of medication, I was in a better state pain-wise.

There is lasting nerve damage I’ll never be able to get rid of and over time it has been progressing.   When I got married, my husband and I decided it would be best for me to get of all medications so that I could be as safe as possible for the pregnancies and children we planned on having.    At that time I was on so much medication I had a notebook that tracked when and what I took.

It took a while but I did successfully get of everything and had two children medication-free.   But the pain hasn’t gone away.   In the last several years the nerve pain has increased from the spinal cord damage.   I had another MRI and saw two Orthopedic Neurosurgeons who said I wasn’t in a state that needed an additional fusion (something I may have to have in the future to fuse additional vertebra).

So I opted for the medication route and started taking Lyrica.   The Lyrica has helped tremendously with the nerve pain but it still continues to increase.   The nerve pain causes myalgia, or muscle pain and keeping it all under control is a continual battle helped by my Chiropractor and the nerve and anti-inflammatory medications I take as needed.

But I don’t like the trend.   I’m hoping it’s just temporary, but it’s hard to tell.   I’ll know more in time.

The Big Boy Update:  My son said at breakfast, “can I please be adopted?”  I asked, “who do you want to adopt you?”  He happily cried out, “Hobby Kids!”   Ahh, now I get it.   He’s been watching a YouTube channel of this family and children who do fun things with toys.   Apparently their family is more fun than ours.

The Tiny Girl Chronicles:  I have an orchid given to me by my best friend for driving her to her colonoscopy.   I’ve written about it before.  I’ve named it my “Stick” because I just can’t seem to get it to flower.   The latest advice from my mother-in-law was to cut the stick off and do some treatments to the orchid and wait for another stick to grow and eventually flower.  My daughter told me yesterday, “mom, I’m sorry your big stick on your plant is gone.”

Something is There

My daughter we think went through a period where she was almost completely blind due to the hematoma in her left and only functional eye.  It’s been a rocky month or so trying to keep her safe, occupied, not bored and entertained.   It’s been more work than we’ve had to do with her before because she needs more help.   We’ve also been trying to take care of her mental state as she coped with the new changes (or loss) of vision.

But I think she’s getting some vision back.   I don’t think it’s a lot, but if she can just see enough to not run into things I would feel so much better.   But we have something going on, which is better than nothing.

I have a baby app on the iPad that has big circles that bounce around the screen.   A baby tries to coordinate their motor skills enough to tap the circle, which then splits into two circles.    For my daughter, it’s a matter of seeing the circles in the first place.    I pulled it up yesterday and she not only saw the circle, she was tracking it with her left eye.   She was off consistently, tapping a bit lower than the circle, but she adjusted when she realized it.  

She seems to see other things too, but it’s inconsistent, unpredictable and minimal.   But some is better than none and we’re hoping for more.   We’re always hoping for more vision to be returned.

The Big Boy Update:  My son wanted to pop an old balloon just before bed.   He wanted to pop it with his four foot staff he made with his father.   I told him he could take it out on the deck to pop it.   About three minutes later after hearing lots of whacking sounds my son opened the door and exclaimed, “this balloon is invincible!”  He showed us how every time he hit it bounced away.  After a few more minutes of trying the ball bounced off the deck and he gave up.

The Tiny Girl Chronicles:  My daughter’s hearing translates into more accurate information for her than it would some of us.   For instance, she had no idea Uncle Jonathan was coming over this morning.   She heard someone come in the house who said, “hi” to her.   She said back, “hi daddy!”  Uncle Jonathan replied, “No” and with that one extra word my daughter replied, “Uncle Jon!  Silly me.   You and daddy sound the same.”

The OR Spirit

My daughter likes going to Detroit for eye surgery.   We’re not sure how we managed this feat but it has worked in our favor for a while now.   She knows she can’t eat the morning of surgery and is patient about food, knowing she’ll have popsicles and graham crackers in the recovery area.

She’s well known on the surgical floor with nurses and other staff coming in to say hello and other, “weren’t you just here?” friendly welcoming comments.   My daughter knows where the kitchenette play set is in the check-in area and spends her time making us food and drinks with plastic food until she’s called back to the pre-op room.  Once there, she asks for the bin of Paw Patrol characters to play with.   This time when we went back they knew already and the bin was already waiting for her on the bed.  

She knows the process well, understand that everyone who interacts with her has to ask her birthday and scan her arm band she got at check-in.   She knows we’re going to go over the “what medications is she currently taking?  Does she have a cold or has she been sick recently? Does she have any allergies?” questions multiple times with each person we talk to.

She doesn’t like, but still will help by leaning her head back and pulling her lids down, the three rounds of very stinging drops she has to endure before she can go back to surgery.   And every time she does this she gets amazed compliments from the nurse or other staff member about how helpful she is—apparently doing drops without a fight or crying.

And her birthday always, always, always gets comments.   When confirming her identity everyone asks her name and birthday.  My daughter was born on 11/11/11, which is a fun day to have as a birthday.   People will exclaim, “what a fun birthday” or some similar comment and I always respond, “it was a great day, that’s for sure.”   It’s happened so much that I’ve tried to see if I can say her birthday in a way people won’t make the connection like, “November eleventh, 2011” but  people still notice.   The interesting thing is my daughter has heard comments again and again but she’s never once made a comment back.

Sometimes she has someone come from the support group that helps keep children happy and entertained.  This time she play with Emily for over an hour and Emily enthusiastically played her Paw Patrol imagination games.   My daughter was very happy the entire time which brings us to the next part—going back for surgery.

They have been understanding that my daughter doesn’t want to wear their gown or their sticky socks that don’t fit.    They let her go back in her clothes and she knows when it’s time to go back because (she told me yesterday), “I don’t go back until they all come in at once.   And she’s right.   Typically the nurse, anesthesiologist, surgical staff and doctor come in individually before she goes back for surgery and it’s one of the reasons we have an arrival time an hour-and-a-half before surgery time.

When the team arrives to take her back we’ve learned something from doing this so many times.   They just ask her to go with them and she’ll walk back on her own, happily chatting with them about whatever they ask her.

Yesterday when Dr. Trese was talking to me after surgery he told me with a very endearing smile, “she is such a nice child.   She raises the spirit of the OR when she comes in.”

The Big Boy Update:  We didn’t get my son a Lego on this trip to Detroit.  He got one from Nana yesterday so we got him an Avengers swimsuit.   We hope he likes it.

The Tiny Girl Chronicles:  My daughter is very energetic and she loves to climb on anything.   She was raising and lowering the chair in Dr. Trese’s office this morning and then jumping up and balancing on the chair arm.   I tried to calm here but she was so happy and she was making all his fellows smile as well.   Dr. Trese said, “you’re just trying to torture me, aren’t you?”   I told him we were looking at investing in a padded room for her and he laughed and said he could see why.

So There’s Good News and There’s Bad News…

I’ll start tonight’s blog post out with a comment from my daughter tonight while I was at the hotel pool in Detroit with her.  She said to me, “so there’s good news and there’s bad news.   The good news is, I don’t have boogums (what she calls boogers).   The bad news is, we’re out of tomatoes.”

Today my daughter went under anesthesia again with Dr. Trese to see if and what action needed to be taken on her left eye.   If he elected to do something, it would likely be a vitrectomy, an irreversible procedure that would be done if he deemed it necessary and would benefit her long-term, but nonetheless, it’s changing her natural eye by replacing parts with artificial substances.    A vitrectomy has already been done on her right eye, back in December 2015 and she’s done quite well with it since that time.   But it’s always better to have your eye (or any body part for that matter) in its original state and in working order over artificial means.

Dr. Trese said her left eye looked better in comparison to two weeks ago and better still than two weeks before that.   The hematoma has largely resolved although she still has some debris in her eye. Some of that could be blood and some he said might be particulate mater from the lens and lens capsule removal.

He said the retinal folds in her left eye are less.   There were six or eight folds several weeks ago and now there are only two folds remaining.   The retina is attached around the optic nerve with an area surrounding it also attached.   Since this is the main field of vision, this is a good thing, if the retina is functioning.

Her pressure was low in the left eye so he added Healon to return the pressure to normal.   He wants her on steroid drops once per hour if possible to work through the remaining blood and to try and help with the detachment.   One interesting side effect to steroid drops is in many people, it increases ocular pressure.   Apparently, and disappointedly, my daughter doesn’t seem to be one of those people because with all the drops, her pressure still dropped in two weeks.

I asked him what her lifelong prognosis is with eyes that regularly lost pressure due to lack of ciliary bodies were damaged and don’t produce much or possibly any fluids for her eyes.   He said sometimes ciliary bodies recover later and begin producing again but hers are damaged significantly and he’s not sure that will happen.   So will she have to have her eyes artificially inflated for life?   Quite possibly.   We’ll know more as time goes on.

We’ll return in a month and Dr. Trese will decide what to do with her left eye then.  He said he hasn’t ruled out the possibility of a vitrectomy, but he wants to wait a little longer and see how the eye recovers.

I asked Dr. Trese if he thought the hematoma was a possible side effect of the cataract/lens removal or trauma to the eye.   He said he thought it was more likely it was trauma, especially since it didn’t happen until several weeks after the surgery.   He said her eyes are currently in a very delicate state.   She has abnormal vessels in her eyes which are more apt to bleed.

It’s comments like that that make me want to put my daughter in a padded room with a foam helmet and protect her so nothing ever happens to her.   Only then (in the words of Finding Nemo) nothing would ever happen to her.   And she has to live her life.    So we work on a balance and do the best we can.

The Big Boy Update:  My husband told me my son was mad at him because he wasn’t having a big party for his birthday (which is in September).   My husband told him to tell me he wanted to help plan a party for dad and that dad said he wanted Randy’s pizza, a CostCo cake, and a new pinball machine.  My son looked at dad and said, “too expensive” and then walked away.

The Tiny Girl Chronicles:  My daughter hears and remembers very well.   As we were heading to the airport an instrumental song came on and had my son been in the car he would have seen the picture of the album on the screen and known exactly what the song was.   But my daughter couldn’t see it.   I asked her if she knew the song.   She said, “yes, it’s from Big Hero 6”.   And she was right.  It was the song from the credits of the movie too—and she remembered it.

Sighted Guide

My daughter has to be guided around any time we’re out of the house.   It turns out there are ways to do this that are better for the person doing the guiding and the person being guided.   Sighted guiding refers to way in which a visually impaired person and a sighted person can walk together safely, comfortably and efficiently.  I had a lesson with my daughter’s Orientation and Mobility teacher this past week and learned a lot.

The person being guided (my child) should hold your arm just above the wrist and you, the guider, should keep your arm down by your side.   The advantage to this is the child has to choose to be guided, they are making a choice to follow you instead of you forcing the guiding on them by holding their hand and pulling them along.  It effectively puts them in more control.

The other advantage with this method is the child (my child specifically) can’t take advantage of things they can do with a held hand such as jump up and down and pull on the hand, drag you forward or backwards or basically fool around while you’re trying to guide them.   Of all the things I learned, this wrist/arm holding is the one I’m the most pleased about because frankly, I was tired of feeling my arm was going to be jerked off by the ebullience of my energetic daughter.

When you’re guiding the visually impaired person you should be slightly ahead of them.   When you come to an elevation change such as a curb or steps you stop and announce what’s ahead and wait for the person to discover what’s ahead with their feet or cane before you move forward.   When you reach the top or bottom step you announce it and then continue to move forward.

If the pathway becomes narrowed or there’s an obstacle you take your arm and pull it behind you slightly so the child is moved out of the way of the oncoming obstacle.   This works well with my daughter because before when we were holding hands, she liked to move out in front and sometimes even drag me along which made avoiding obstacles sometimes a more jarring experience for the both of us.

We have a cane for her, which is another post entirely because cane work for a young child has to be introduced in a specific manner in order for the child to accept it, trust that it works and use it safely and efficiently.  

So for now, we’re working on sighted guide techniques.  My daughter does this well and without complaint with her Orientation and Mobility teacher but was annoyed at me when I insisted today, hitting me and telling me I was a mean mother.    When she realized it was her only choice she gave in and we navigated through the airport more easily than we’ve ever done before.

The Big Boy Update:  My son has an issue “pausing” whatever he’s doing on his iPad to do things like talk to someone, go to the bathroom, eat, etc.    We’ve had a conversation with him today and he now understand if he’s not able to successfully take a break when requested during those times he’s allowed on his iPad, it will be taken away with an unknown point of return.   He was mad, but he adapted pretty quickly today.   I think it’s going to take a while to break the habit though.

The Tiny Girl Chronicles:  My daughter told me when we found our seats at the airport gate today, “you’re the best mommy in the world.”  Then she qualified it with, “I mean you’re the best mommy in the world I have.   Some people have other mommies.”

The Monster

My daughter is seeing our play therapist regularly.   We know she’s having a hard time dealing with the additional and dramatic vision change and her play therapist has been instrumental in helping both her and us deal with the change.   At a recent session she did something Dhruti said was uncommon and not a good sign.

She was lying down on the floor and told Dhruti, “I  want you to be a monster and eat me.   I want you to put pee and poo on me.”   I don’t understand the psychology behind it, but the words alone are enough to be alarming.   Dhruti is helping her and she’s given us some advice on how to help too.    I wish there was more we could do.

Tomorrow we go back to Detroit (because we just can’t stay away) and we’ll see if Dr. Trese does surgery on her left eye to try to improve/regain some of her vision she most recently lost.

The Big Boy Update:  We made a puff pastry this morning that had creme in the middle and chocolate icing on the top.   We served a piece to my son who, after eating loads of calories on his first breakfast, balked and cried out, “I don’t want to eat it!  I don’t want to get fat!”  After negotiating with him we cut the piece in half so he didn’t have to eat as much.   It was a ploy to avoid eating something he didn’t have any experience with but I told him nonetheless he could eat whatever he wanted because he was too young to get fat.    And with his metabolism, that’s completely true.

The Tiny Girl Chronicles:  My daughter came downstairs the morning and started in on a conversation I felt like I missed the first half of because she said, “I just wish we could do something to contact Optimus Prime.”   After several questions I found out she’d been dreaming about the Transformers and contacting Optimus Prime would have made her dream go a lot smoother.

The Last Day of the Purple Bags

Today was the last day of school for my children.   My son will be returning to the same school next year but in a different classroom.   He’s been in the same Montessori ‘Children’s House’ classroom for the past three years.   He’s been one of the classroom leaders this year and has very much enjoyed helping out the younger students.   He’s got a lot of empathy and he loves little children, sometimes too much when he over hugs them.

My daughter’s last day was also today.   For her, it was the last day at her school, the school she’s attended for four years.   She’s been in the same Children’s House classroom for three years as well.   This year she was one of the older children, but due to her vision impairment she was the one receiving help from the other students.   On the few occasions I was in the classroom, it was heartwarming to see the other children step in to help her find something or complete her work.

When you start at our school the toddlers are given a purple bag that has their name on it.   It’s a nice canvas bag that fits their small height.   They carry things like a water bottle, their lunch box, spare cloths and work they’ve completed to bring home in their bag.    When they start they can barely hold  the bags and sometimes drag them along behind them but by the end of the first year they won’t let you even help them because they want to be independent.

Here’s a picture of my daughter on her first day of school.   She’s two days before her first birthday in a fluffy jacket, carrying her purple bag.

My son and daughter have carried their bags for almost five years to school every day.   The dragging that happens has worn holes in the bottoms and the things they like to put in them (like rocks and mulch) have taken their toll on the purple color, making it a little more dirt purple, but the bag still works.

Next year we’ll have backpacks for each of them and a new chapter of school with start for both of them.    For today, they’re just glad it’s summer and school’s out.

The Big Boy Update:  My husband is in a golf tournament out of town.   If he plays well, he’ll make the cut and stay out of town for two more days.  My son misses his father apparently because when I told him he chanted out loud, “please don’t be good, please don’t be good.”

The Tiny Girl Chronicles:  After noon dismissal the entire school met at a park to celebrate with pizza  and Italian ice.   My daughter did a good job of holding the hand of a friend when she needed to move around or sitting closely to someone at the table when she was eating.   I was nervous the whole time she was going to hurt herself, heat injury in particular, but she had fun and the event went off without incident.   Color me relieved.

The Did You Know This Fact:  My husband texted me today saying, “5oz of Broccoli has more vitamin C than 2.5 lbs of oranges”.   I love broccoli.   I think I may well love it even more now.

The Help From Jane

I contacted my daughter’s Orientation and Mobility teacher to see if she could recommend a private services company to help over the summer with my daughter.   We desperately need some help for her so she can navigate around both successfully and carefully.   Because the school year has ended, the services we were getting from the public school system have ended, but the timing is poor because my daughter’s vision has just taken a significant downturn which has affected her ability to move around and be safe in her environment.

Some people complain about the school system’s Individualized Education Program (IEP) process, saying they don’t believe they get the services they need.  Some have said they have to fight to get help and it’s been a struggle the entire way.   Parents have had to aggressively advocate for their child just to get help, I’ve heard.   Our experience is anything but that.

Jane, who has seen my daughter’s change in vision firsthand, emailed me saying she thought we needed to expand the services to include year round (over the summer) support because my daughter had a clearly demonstrated need.   She quickly set up an IEP meeting for today.   This, in and of itself, was impressive.   The first IEP meeting we had took four months to get scheduled.  

The meeting happened quickly over the phone today with the result that my daughter will have not one as before, but two O&M sessions each week until the start of school in August.    My husband and I are so grateful for their help.   We’re so impressed with the care and initiative our teachers have shown in helping our child.    We are very grateful.

Today, after the meeting, Jane came to our house to walk me through some things we can do to help my daughter with her cane.   Bottom line: she’s not ready for a cane yet, but we can do some things to continue to introduce it and build skills with my daughter.   I have some materials to read and Jane left me with a list of additional things we can do to try and entertain my easily bored, recently blind child through the summer.   I told her I couldn’t thank her enough as she left.

The Big Boy Update:  As I unpacked my son’s purple bag from school today I realized tomorrow would be the last time he would take his now five-year-old purple bag to school as next year he’ll take a backpack.  

The Tiny Girl Chronicles:  Today I looked at my daughter’s purple bag and realized it would be the last time she’d take it to school as she’s going to a new school next year.   It’s a bit sad.

Some Distressing News

Our children’s school went through a significant capital campaign over the last several years, culminating in the purchase of land and the building of a new school.   The location the school had resided at for the first thirteen years of operation was a small, old site on eight-tenths of an acre that was rented.   To give you an idea of how old the school buildings were, when I was a child, I attended preschool there forty-four years ago.

The school’s old location was put up for sale and purchased by a Goddard school who just recently tore down the buildings to build a new school.   My husband told my son and daughter this morning on the way to school the news about their old school buildings being demolished.   My son took the news harder than we anticipated.

This afternoon was my son’s end of year graduation celebration in which parents were welcomed into the classroom, the students performed songs they’d made up played on bells and an invitation to join the students having bread and butter they’d made in preparation of the celebration.   It was very Montessori and very special to the children as they politely invited us to have a seat and then served us food and engaged in conversation with the group.

In preparation, the students had made name cards for their parents so they’d know where to sit for the music presentation and then later at the tables for the snack.   Here are my son’s place cards, with his explanation of the drawings he added to each:

This is me with a remote control and dynamite blowing up the new school buildings they’re building.

This is me crying and a wrecking ball crane tearing down the new school buildings they’re building. 

I spoke with one of his teachers about how he was feeling and she said he’d told her this morning, after crying some (which is unlike him), “I’m really sad.   I haven’t felt this sad since my dog died.”

The Big Boy Update:  My son had an entirely different drawing on my name card for today’s graduation celebration.  He said, “that’s you with a double shot of coffee.”

  

The Tiny Girl Chronicles:  My daughter can see almost nothing, and then sometimes she can see something we don’t expect.   Yesterday we walked over to a bench and she said, “the bench is green”.  It was a dark shade of green I didn’t expect her to be able to discern.   She told me she saw the bench from far away.   I hope she did.

More Detachment

This post isn’t about my daughter, but about her Uncle Bob.  He had a sudden loss of vision in one of his eyes and on the recommendation of his ophthalmologist flew home last night.  This morning he was evaluated with a partially detached retina with a few tears.   Recommendation: surgery this afternoon.

Uncle Bob is doing well now.  He has a gas in his eye and has to lie on his stomach forty-five minutes out of every hour for the next day in order to have the gas rise and put pressure on the section of the retina the doctors worked on reattaching.   This is the exact opposite from what my daughter had done.   They added a heavy liquid substance to her eye and she had to lie on her back to get it to try and lay down her retina.

My son and daughter were very interested and concerned to hear about Uncle Bob’s eye as we are all very eye injury-aware here in this household.  Uncle Bob messaged us a short while ago saying he way laying over the edge of the bed, looking down at his phone to message us his status.  

I asked my daughter if she wanted to tell him anything and she said this, "I love you so much.  I hope you feel better.  I hope you'll be fine. And I wish we’ll get to see you soon at your house with zipper.”  Zipper is the cat my daughter very much wants to meet.

The Big Boy Update:  We were having smoothies this afternoon when my son got up off the bench and dashed almost to the street.   We almost got concerned but realized what he was doing when he picked up a stray shopping bag, held it up and said, “litter” while heading over to the trash can.

The Tiny Girl Chronicles:  We went to visit my daughter’s new school today.  My son went with us.   We met the other visually impaired student that will be in her class and her new VI and Orientation and Mobility teachers.   We got a tour of the school targeted at the two girls.    I think my daughter is going to like going to the new school.   She’s certainly excited about having a new friend who reads braille and uses a cane—the girls have already asked to have a play date together.

It’s No Longer Toast

Remember the saying about toast always landing butter side down?   Seems like the Mythbuster guys proved that one either true or false, I can’t remember but regardless, I have one that’s over and above worse percentage-wise.

USB plugs.   There are two little squares on the “top” (if there is such a thing as a top, I’m not sure) and two slightly different squares on the “bottom” side of the plugs.   The ports don’t seem to have any consistency across plugs and devices on which way they expect to be mated from a top or bottom preference.    But regardless, it feels like eight in ten tries I get it wrong, regardless of how many times I’ve mated the particular plug or device to it’s fellow USB partner.  

I like Lightning plugs, I don’t have to be smart OR observant to get them to work on the first try—every time.

The Big Boy Update:  While we were on vacation my son ate at a restaurant and got hives.   When it happens it’s not pretty.   His face gets red all around his mouth and large white bumps appear.  Sometimes there’s a secondary location, like the back of his knee, which happened the other night.   My son didn’t have anything we knew he was allergic to, dinner being an inconspicuous hamburger.   If we’re with our car we have Benadryl in the back but in this case we were a boat ride away from the vehicle.   He managed well with a bag of ice from the waitress and by the time we got back across the bay he’d gotten over it.    We’ve had some allergy tests run but not a complete workup, mostly nuts.  Fortunately reactions like the one the other day are uncommon.

The Tiny Girl Chronicles:  We ordered a blind cane for my daughter just like the one she uses with her Orientation and Mobility teacher.   She is going to have some extra sessions over the summer to help continue to build her skills until she starts school in the fall.

Imaginary Friends

My children were playing together in the car today.   Some of the playing is friendly, some of it is definitely not.   My son is still working on collaborative play instead of his preferred, “let me boss you around” play.    His sister tolerates this for a while and then decides she doesn’t want to play anymore.

They do a combination of imaginative play using characters and ideas mixed together in interesting ways.  For example, my son waved around a pipe cleaner (acting as a magic wand) and used the spall “alohomora” from Harry Potter (the unlocking spell) and proclaimed the Paw Patrol stuffed animal  had become a zombie.  To a five- and six-year-old this all makes perfect sense.

I was just happy they weren’t kicking and swinging at each other as I drifted off in the front seat when I heard them talk about Gigi and Ghadi, Palmer and Chainer.   These four characters were their imaginary friends for some time but have been abandoned for older pursuits in the past few years.

The Big Boy Update:   My son had his hand in his pants this morning and said, “my penis doesn’t have any balls…oh, there’s one…oh, there’s the other.”   Mystery solved.

The Tiny Girl Chronicles:  If this is any indication of how little to none my daughter can see at this point, she asked me today, “I want to listen to Peppa Pig on the iPad”.   She puts her face down or curls into a ball and just listens to the iPad.   She doesn’t even try to look anymore.   What surprised me was she changed from ‘look’ to ‘listen’ in her request.

The Elevator Activity

Finding meaningful things for my daughter to do to entertain her has been difficult in her most recent fully blind state.   She needs a lot of supervision, especially in surroundings she’s unfamiliar with but for the most part, continues to be positive and upbeat.

Today she discovered something that occupied her for hours—an elevator.   Our friend’s house has the living areas (kitchen, living room, dining room, deck etc.) on the second floor, overlooking the Chesapeake Bay and the owners decided to add in an elevator when they did an expansion some years ago.

My daughter learned how to find the call button, open the outside door, inside door and then find the floor she wanted to travel to when she got inside.  She would close the outer door, inner door and then  press the floor button—all in the dark because she didn’t care if the light was turned on.

She found out there was a front door for the second floor (marked floor three) and the same front door was used for the main floor (marked floor two) and then there was a back door for floor one, which was about two feet below the first floor providing ground level ramp access under the deck for anyone needing wheelchair access.  Floor one was particularly exciting because it opened out to the outside.

She would go up and down on the elevator and then take the stairs to let us know she’d travelled down and had walked back up again.  After a while she came out and told us she’d found braille in the elevator.

Here’s the thing, no one knew there was braille in the elevator, but she was correct.   My husband went in and she showed it to him and he told her it said ‘phone’.   She took me in later and I asked her if she’d opened up the door where it said ‘phone’ and she said she hadn’t and was surprised to find a phone with a dial tone inside.  

Just now before bedtime she wanted me to ride in the elevator with her.   She deftly found the call button, opened the doors, shut the doors and in complete dark found the button for the third floor immediately and knew exactly what to listen for to indicate when we’d arrived and she could open the doors to exit.

Being blind has got to be hard on her, but she learns some things so quickly it still amazes me.  

The Big Boy Update:  My son likes spending time on his iPad when it’s the weekend and he’s allowed.   This weekend the house we’re staying at is in a very small town and the owners, our good friends, don’t have wifi as this is a vacation home.  This morning my son came in and told me resolutely, “they don’t have wifi here, I don’t like this house.”

The Tiny Girl Chronicles:  We went to dinner tonight at a restaurant across the Chesapeake Bay.  We were in the boat about twenty minutes each way and my daughter wanted to drive.   Richard, our captain, gave my daughter instructions on when to turn left or right and how much to turn each tine (a little bit, a lot, etc.).  My daughter loved it and was dedicated to the job the entire trip.    She got the title of First Mate for her diligent work.

No Swimming

My daughter has a lot of things going on with her vision.   She’s lost her sight, which is burden and stress enough for any one person, but she’s got other things to contend with beyond that that make her life even more frustrating on top of the main vision loss issue.

She has to sleep propped up because of the hematoma in her eye.   She’s doing fairly well with this, but it’s not something she likes to do.   She’s very compliant and has been trying to help as best she can, even though she changes position while she sleeps at night.

She has to do drops up to twelve times each day, sometimes only two drops and sometimes five drops across both eyes.   They sting, they interrupt her play time and she doesn’t like doing them.   She has to have her glasses cleaned regularly because she touches her glasses and gets all sorts of things on them—she’s trying to keep from touching them but it’s something hard for her not to do apparently.

She can’t be hit in the eye, which means lots of things she finds fun, like swinging on the swings with her friends is a highly hazardous situation.   If she could see and could avoid the large, heavy, fast moving objects it would be one thing but she’s operating completely blind right now, not even able to tell colors accurately, which means she’s a very big danger around swings.

And she can’t swim.   This is temporary because of the recent surgery, but it’s not fun for her because she loves to swim.   We’re visiting friends on the Chesapeake Bay this weekend and they have a pool, but she can’t get her head wet.     Again, she’s working with the limitations, but it’s sad and frustrating for her.

She is also bored.   She can’t do so many things other, sighted children can do and what she can and wants to do she needs help to do much of the time.   It’s hard as a parent to limit her while trying to keep her entertained and occupied at the same time.   Hopefully she’ll regain some of her vision and freedom soon, but for now she’s dealing with it the best she can—and somehow keeping a positive attitude throughout.

The Big Boy Update:  My son still likes to keep his headphones on a lot of the time, even when they’re not producing sound for him.   It’s a sensory deprivation thing that he sometimes likes, even when he’s eating or when other people are around and talking.  

The Tiny Girl Chronicles:  We were on our friend’s boat today and went under a bridge on the way to dinner.   This particular bridge makes very interesting sounds when cars go over it.   Our friend went back under it a second time and stopped so we could all hear the cars going overhead.   My daughter liked listening to the different pitches of the cars, made by vehicles going over the bridge at different speeds.

Guide Dog Discussions

My daughter is having trouble coping with this most recent loss of vision.   To sum up, she is almost completely blind right now.   Hopefully some of the vision will be returned to her left eye, but for now she’s operating without sight.    This is hard for her because she doesn’t have all the skills she needs to move around without sight.

She’s been working with her teacher on learning cane skills, but she isn’t ready to have one on her own unassisted yet.    That was fine with her partial vision, but we’re getting her a cane to help right now and are hoping to get some additional instruction over the summer on appropriate cane use.   The trick with a cane at this age is bad habits are quick to be made and hard to break and as sighted adults, we have no idea what’s appropriate or inappropriate use.

We’ve had many people suggest a guide dog which sounds like an enticing option.   What we found out is a guide dog works on commands only.   The dog needs to be directed by the blind person, who knows where they want to go and how to get there.   The user must be in control at all times and give the dog appropriate commands and directions.   This means the user must be not only competent in Orientation and Mobility skills, they must have experience navigating around their world.

What a guide dog does is responsible for guiding the user around obstacles and indicating the location of steps and curbs.   Guide dogs are colorblind and can’t tell when a it’s safe to cross a street, the user indicates to the dog when it’s safe to cross based on crosswalk audio signals.

Should we as parents look into getting a guide dog for our daughter.   The answer we’re getting from the experts is absolutely not.  Most schools won’t accept an applicant under the age of sixteen to be trained and paired with one of their dogs.  Another decision is the child’s travel experience.   At sixteen, many blind children haven’t had enough travel experience to make an informed decision weather or not to use a guide dog.

Canes are very useful, give the user information about their surroundings, collapse and can be stored easily, are inexpensive and don’t require daily maintenance such as feeding.   The advice we’ve been given is placing a guide dog in the hands of a child is a disservice to both the animal and the child.

So for now we’re working on strengthening my daughter’s cane work and overall orientation and mobility.   Maybe when she’s older she’ll want a guide dog, we’ve got some time to find out.   Hopefully more than anything though she’ll have some of her vision returned so she won’t have a need.

The Big Boy Update:  We were in stopped traffic going to Maryland today.   In the middle of inching along my son said this about one of his classmates, “Benton had traffic like this one time, but worse.”

The Tiny Girl Chronicles:  My daughter is having a hard time of things lately, something I don’t blame her for at all, but we’re still going to have to place boundaries on her for appropriate behavior. She was mad at me yesterday and called me ‘stupid’.   I told her there would be consequences if she used that word to describe anyone again.    She thought about it and then told me, “and mom, you don’t look good.”  

The Pressure is Back

There is more information about my daughter’s vision but as none of it is urgent, I thought I’d take a day off and talk about something else, something mundane, something like water pressure.

My husband and I have had a water mystery ongoing in our house for some time now.   In retrospect it was fairly straightforward, but the order in which events occurred and things were changed caused the facts to be misleading and we were tracking down a problem that wasn’t the problem we thought it was.

We moved into our house in 2010 and at some point in the first year or so bumped up the water pressure in the house higher than average because it was nice getting water faster and harder when you wanted it.

Things went well and without incident for a number of years until we had our annual plumbing wellness check done.   A very thorough technician told us somehow the water pressure was at 120 PSI, or city full pressure.   This was bad, this wouldn’t do, we were going to blow things out if we kept it at that pressure.

So he dropped the pressure.    We also decided to put in a whole house water conditioner at the time because technology had advanced where the system was much less expensive and the consumable cartridges were long-lived and low-cost.   House water now cleaner and milder pressure-wise we also de-scaled the on-demand hot water heaters and ultimately got an imaginary certificate of healthy water and pipes from our plumbing company.

It was after that that things get muddled.   That lower pressure turned out to be potentially nice for the pipes but annoyingly slow for everything else involving humans.   My husband got a pressure gauge a few months later and over the course of the next year we futzed with the pressure, increasing it, worrying about it being too high, etc.

At one point recently we wondered if we had a leak somewhere because the pressure was dropping to very low when there was, say, a faucet on and a toilet flushing.  It was about a week later that my husband was testing pressure with the gauge on the hose bib outside, watching it drop to 30PSI just because one faucet was one when he had an idea…how long did that whole house water conditioner filter last?   I told him I thought it was a five year filter.

He checked and no, that five year filter is for the ice maker, the one for the whole house, incidentally installed just over a year ago, was due to be changed—probably had been needing to be changed for two months.     Today the new filter came in and as it turns out, we didn’t have a pressure problem at all.

We ordered two filters so next year when I start complaining about how long it takes to fill the tub up, my husband will be able to fix the issue over lunch.

The Big Boy Update:  Sometimes on the way to school we’ll play Simon Says.   Today my son changed the game to Batman Says.   He would try to trick us by saying things like, “Robin says…” or “Alfred says…”

The Tiny Girl Chronicles:  We were waiting to board the plane yesterday when my daughter said something to me and I have absolutely no idea where she got it from, “mom, when are we going to sit down?  My bunions are sore.”

Blind Defiance

We have a problem with my daughter that my husband and I don’t know how to solve.    We need professional help because we’re just too far out of our level of child development and trauma knowledge.    Here’s what’s happening:

My daughter is almost completely blind right now.   This is a relatively new situation and it’s something she, we think, believes we may have caused because every time a procedure is done, some point in the future her vision gets worse.   As adults we’re terrified and depressed for her and powerless to do more than we’re already doing—everything we can.

What’s happened in the past few days is a level of defiance that’s confusing though.   Let me give an example.    What would you do if your five-year-old child stopped using utensils, played with their food, got a greasy mess on their body, clothes and the surrounding area.    What if they didn’t listen about using their fork, not spilling their drink in the airplane and eating like a child, not a baby?

But, what if the only way your child could find the ketchup was to feel around with her hand and hold it in the ketchup until the other hand found and brought over the french fry to dip it?   What if the only way she could find the napkin or drink cup was to fumble about the table space because they couldn’t see anything on it?

The thing is, these scenarios are both correct in that my daughter has been rebelling and acting inappropriate while eating, reverting to more child-like behaviors.    She is also unable to see and needs to use some of those behaviors to find and eat her food.     But where do we draw the line?    And when we draw the line, is it the right thing to do or do we need to support her more in this time of extreme stress while she’s lost even more of her vision?    

This is where we’re at a loss.   Good thing we’re seeing Dhruti tomorrow.    My husband didn’t understand what I was going through the last few days in Detroit until he was at home tonight at the dinner table and saw the fairly extreme behavioral changes I’d been talking about.    I hate to say it, but I was relieved he lost his temper at my daughter, mostly because I’d been feeling like a terrible parent for doing the same thing multiple times on the trip.

So we’re confused, albeit likely less so than my daughter is right now.   She’s resilient, but I want to be supportive in the best way we can be now and not rely on her ability to recover from our misguided parenting today.  

The Big Boy Update:  My son made Robin’s (of Batman and Robin) staff with my husband while his sister and I were away in Detroit.   It’s got a nice grip and has been painted to match the one Robin actually uses.   It was pretty impressive looking but what I didn’t expect was my son to do—with ease—some of Robin’s moves with the staff when I asked him how it worked.

The Tiny Girl Chronicles:   My daughter made a new friend today, Nash, who was on the same flight we were, coming to the area for some specialty surgery.    He and she played with her Paw Patrol characters and when we boarded and discovered we were on the same row, they say across from each other on the aisle seats and played with modeling clay and talked together for the whole flight.    He is apparently her new best friend, she says.  

UES?

This is going to be a long post.   It’s going to be so long I think I’d better start by dividing it up into sections so I can keep it all straight.    This section, let’s call it The Introduction, is where I say today was one of those Monday Detroit Surgery mornings.   We don’t know what will happen until the day of surgery because if you’ve been following this blog for some time, my daughter’s eyes are anything but predictable.   Today we did have surgery on one of her eyes, we now know more about the other eye and we have a plan on what next steps will likely be.    But let’s start with the easiest topic first:

The Right Eye
To sum up the history of my daughter’s right eye: it was the most damaged in the original incident/injury and has had the most work done to it over time.   It has light and dark perception with some ability to discern colors.    There is a chance it can see more, but so far we haven’t seen much evidence to support additional vision is possible.    However, lately (as in the last four to six months) the eye’s field of vision has been blocked by fibrous growth scar tissue that may have been from an internal bleed from a surgery.   Or it may be unrelated, we don’t know.

Today Dr. Trese elected to do surgery on the right eye, leaving the left for next time.   He opened up an oval section in the scar tissue about 3mm vertical and 2mm horizontal in size.  This isn’t much different than the field of vision we have as normally-sighted people, so if the eye can see, this will give her a good chance.    We’ll know more tomorrow when the bandages come off and she adjusts to the light she may be highly sensitive to.

The Left Eye
Here’s where it gets complicated.   To review recent events: the left eye was pretty much all my daughter’s vision but it had declined due to a progressing cataract.   After the recent cataract removal surgery my daughter seemed to potentially see more (even without an accurate refraction) but then had a sudden drop in vision.    Two weeks ago we found out she’d developed a hematoma blocking most of her field of vision.   Steroid drops were prescribed once per hour (fun) and in two weeks (today) Dr. Trese would see how much things had improved and consider surgical intervention if necessary.

Dr. Trese’s Theory is the left eye lost some pressure after the cataract surgery and got bumped causing the hematoma.   This isn’t likely in most eyes, but my daughter has a perfect ocular storm that makes it more probable.   She has irregular vasculature (blood vessels) and hypotony (low pressure).   That, coupled with the potential side effects from invasive surgery like cataract removal made her more susceptible for hematomas.

At this point 80% of the hematoma has been absorbed.   Dr. Trese can see the retina, optic nerve and…the retinal folds.   And this part is the new part—the new wrinkle, if I’m going to try and be literal about it—the retinal folds are back, and that’s not good.  They appear to be new over the past two weeks because they didn’t show on the ultrasound two weeks ago here in Detroit and didn’t show at the one two weeks before at Duke.

There is another thing they were able to see today via ultrasound and that’s the choroid, the layer directly behind the retina, the thing from which the retina detached, is thickened.   It is upwards of three times as thick as it should be in some areas.    This indicates the choroid has been strained for some time.   And that’s where the title of this blog post comes into play.

Dr. Trese said there’s a possibility my daughter has Uveal Effusion Syndrome (UES).   It’s a very rare  condition characterized by choroidal fluid collections, often in association with serous retinal detachments.    Hold on, did you hear that long-time readers—“serous retinal detachment”?   That’s how this whole thing got started, well, that in conjunction with inflammation and ciliary body damage, but that was the main thing that damaged her vision.

So for now the UES is a question, not necessarily a diagnosis of something my daughter has.   Also, don’t mistake UES as the possible suspect for an overall diagnosis either, there’s not just one overarching thing causing all the havoc in my daughter’s eyes.   Dr. Trese will investigate the possibility of UES further as we move forward.   One thing that would be nice is that UES can potentially be managed medically versus surgically with drops.    Less surgeries would be nice.

And while he didn’t perform surgery on the left eye today, he did add Healon to it to increase the pressure because he said there is a possibility the pressure was artificially reading higher than it actually was due to the blood in her eye.  

Today
My daughter will need to sleep sitting up or propped up for at least a few weeks.   She has to wear shields over both eyes, with tape that in order to keep the patch on overnight, sticks to her hair and tears it out the next day and leaves adhesive residue on her skin, so that’s fun.   We have drops in one eye every hour while she’s awake and three drops I’m not sure how many times per day in the other eye (I’ll find out tomorrow).

Oh and one other thing, Dr. Trese said my daughter is a, “Fibrant Former” which means she forms fibrous scar tissue very easily, hence some of the issues we’ve had in her right eye.   The frequency and regularity of the steroid drops will help prevent this process in her eyes.

Next
We return in two weeks for another surgery in which Dr. Trese hopes to be able to do something more therapeutic to the left eye.   This will likely be a vitrectomy with added silicon oil and possibly PFO, the heavy substance that helped lay down the retina in her right eye.   There is also a second option to address the potential UES.   Surgically he could open some scleral slits to help drain any fluid buildup.

And what about that refraction I keep going on and on about?   Well, things have changed yet again and as Dr. Trese so aptly put it today, “we’re a ways away from a refraction at this point now.”   Those retinal folds make it hard to refract light in a regular manner and you need that in order to get an accurate prescription.    But there might be one small upside to this and that’s the right eye.    Back in 2015 when my daughter had her first eye surgery, they removed the natural lens in her right eye.   Since that time she’s never had a strong enough pair of glasses on her eye to correct for that lack of lens.  

I’d like to say we might find out what she can see (if anything) when the gauze comes off her eye tomorrow, but I’m going to hold off on that hope for now because she has two small stitches right slam in the front of her eye, just exactly where you personally would least like to have stitches in your eye.   She’ll probably be light sensitive and may, like before, choose not to open the eye for five days or until the stitches start to dissolve.  But I’m patiently hopeful for now.

The Big Boy Update:  My son isn’t getting a present from his sister when we return home tomorrow.   There was nausea after surgery we didn’t know about which culminated in lots of vomit all over the rental car, car seat and my child.  She was still nauseated come dinner time and we just didn’t make it to the store in the mall to get him a present.   When I told him on the phone he was understanding.   When I told him we had a multicolor volcanic rock we’d taken from the Red Robin parking lot for him instead, he was surprisingly chipper, asking if it was heavy and being even more interested when I told him volcanic rocks weighed less than regular rocks.

The Tiny Girl Chronicles:  My daughter was waiting to go into surgery today.   She usually walks back and they give her the gas mask and she goes right to sleep.   I’ve never been there with her before though but I knew what she meant when she said in frustration, “I’m hungry I want to do the smelly nose thing now.”

A Constant Hazard

My daughter and I are in Detroit tonight.   We flew up today so she can be seen by her retina surgeon tomorrow morning.   He may remove the hematoma in her left eye, hopefully giving her the ability to see something again.     He may wait and work on the right eye’s scar tissue or he may do nothing at all.   

I’m personally in favor of him doing something.   My daughter is just a hazard to herself all the time. Her cane training isn’t far enough along for her to keep a cane for general use, although my husband and I are thinking she might need one over the summer and, well, now if her vision stays the way it is.   The reason she doesn’t have one yet is because they are very easy to misuse and once bad habits are made, they’re very hard to break. 

Our travel today involved a lot of holding my hand as we went through the airport, car rental, hotel, swimming pool, restaurant, etc.   I got a better sense of how very bad my daughter’s vision is right now—she will run into anything and everything.   I had to yell, “STOP!” multiple times to prevent her from walking straight into something right in front of her. 

She can’t see colors either—she wanted to play with some of the rocks out in front of Red Robin where we ate diner.   The rocks were volcanic and very vibrant in color but she couldn’t tell a white from a black from a red rock.   

There was one game on her iPad she was able to do reasonably well, Toca Boo, which is a black screen with a white ghost on it.   You control the ghost and try to hide behind furniture in the dark in rooms and scare your family members (you’re really a child wearing a sheet).    She was doing fairly well finding and moving around the white blob on the black screen.   But seeing walls directly in front of her?   That’s another story. 

My daughter is apparently coping well with the loss of vision if her wish as the threw a penny into the airport fountain is any indication.   As she launched the penny high into the air she said, “I wish we could have a pterodactyl right now!”

The Big Boy Update:  We called my son when we got her and the first thing he said is, “what did you get me for my present?”   I explained how that made me sad that he didn’t miss me, all he wanted to know was if we’d gotten him something.   I think he understood, but I know it’s hard when you’re six-years-old.

The Tiny Girl Chronicles:  My daughter told my husband this morning, “okay, dad, you do not look great when you do not have a shower.”   

The Now List

We have two types of children in our house: the one that wants everything and the one that doesn’t really care about anything.   The one that wants everything, my son, has his wish list.   He’s on and off with the wish list mostly because he’s figured out wish list items are for some day, eventually, when someone has a reason to get you something.   Since my son’s birthday is  close to Christmas, most of the year his wish list seems more a “some day eventually, maybe” list.

My daughter doesn’t have anything on her wish list.  She has a few things my husband or I put there because we had an idea something might work well for her or someone suggested something, but other than that, my daughter is happy with whatever she gets.    I don’t know if she’d have more of a wish list if she could see, it’s hard to tell.    I don’t think she’d have the same length of list my son does though.

My son has come up with a new stratagem to get the things he wants.   Today he explained that <insert super hero thing he told me about this morning> was being put on his, “Now List”.   This list, he explained, was for now, not for later.  What that meant, he explained to me, was that I could go right out now and buy it for him.  

The Big Boy Update:   My son had some work he brought home from school that included something he’d written (apparently a song) and a some notes colored in on sheet music on the lower half.   I asked him what the writing was and he read something about snow to me.   Then I asked what the part at the bottom was.   He looked puzzled and then said, “it’s the alphabet that begins with C and ends with C”.   “Musical notes?” I asked.   “That’s it”, he replied.

The Tiny Girl Chronicles:  We had been talking about magnets and electric cars the day before.   The next day my daughter remembered the conversation and kept talking to me about the ‘electromanic’.

Pliers and Cardboard

Children like to bust things up.   They like to knock block towers down, push over someone else’s hard work and definitely, without question, kick over that sand castle another child’s been working on.    I’m not sure why destruction is an important part of child development, but we try to nurture it when we can.

My son has this thing he’s come up with which makes a lot of sense if you’re the parent of a Montessori-educated child.   If you’re not, this might sound like a bad idea, bordering on negligent parenting.    But bear with me because it all turns out okay at the end of the story.

My son likes my pliers.   I’ve done a lot of jewelry making and I have a drawer with over thirty pair of pliers.   They do different functions in the jewelry making world but in general most are pointy or sharp in one or more direction—which is why they’re so enticing to my son.

What my son wants to do is get the pliers and see what he can tear up with them.    After some negotiation a few years back, we settled on cardboard (typically from broken down boxes) for his plier-based attacks.   My son would see just how much carnage he could exact on the cardboard and I would see how much calmer he’d be afterwards.

He’s done this repeatedly, when the need would arise, for a long time now.   Yesterday he brought two other friends into the process, inviting his next-door-neighbors saying, “you can pick three pair of pliers and then get a piece of cardboard from the garage”.

I had the children meet on the front porch and sidewalk, saying they could do whatever they wanted with the piers and cardboard, but the house (including the sidewalk) was to be protected from damage and hey, didn’t the grass look like a great place to do this fun work?

My neighbor’s son, Whitaker, came up with the best plan, putting his cardboard over the doormat and jabbing down again and again into the cardboard, through the standing bristles of the mat, making lots of satisfying holes in his cardboard.

All three children had fun and no one was injured.   I didn’t get arrested because the children were having fun responsibly.   But what if there had been an accident?   Then there would have been an ice pack and a bandage and most importantly a lesson learned in safety from the child.   I’m okay with a little injury to teach a lesson.   We can’t effectively learn without making mistakes.

The Big Boy Update:  My son has been more and more kind to his sister lately.   Don’t get me wrong, he can still be a serious jerk to her, but when he realizes she’s hurting or she’s going to miss out on something because of a poor choice she made, he’ll step in and offer his help or some of his reward.   This is new—very new.   My son is exhibiting signs of empathy, something he didn’t understand until relatively recently.

The Tiny Girl Chronicles:  Not only is my daughter managing her hourly drops schedule, she’s putting in the drops herself some of the time.   She’s not always hitting the eye directly, which is causing a decent bit of wastage with the drops, but heck, I am so not complaining.   My daughter, instead of fighting and crying about the drops that sting and are an annoyance, is helping and doing the job herself.   It is important at this point that I point out she is clearly her father’s child because I would never be so understanding and helpful.

Two Thousand Posts

I pressed the ‘Publish’ button last night and noticed I’d just completed blog post 1999.   I know it’s been a while since I’ve been doing this, namely since my five-and-a-half year old was only a month old, but two thousand posts?   Hard to believe.

I was going back and review some of the posts but I ran out of time today making lunches, doing laundry, facilitating conflict resolution and helping out with pliers and cardboard—something I’ll try to explain in more detail in tomorrow’s post.

Ideally this blog would be mostly about boring things happening in my life here and then a cute little story or words my children said in the lower sections.   But that’s not how it’s netted out recently.   My daughter’s eyes have dominated a lot of this blog for some time.   I don’t mind so much in so far as it’s a good way to communicate what’s happening to friends and family and it’s an excellent way to document over time what’s happening.    But it’s not fun.

So here’s to more fun posts in the next two thousand.   At the rate my children are coming up with things to say and do, I’m fairly sure we’ll have some good stories ahead.

The Big Boy Update:  My daughter took her glasses off to have them cleaned this morning.   My son. who has said this before, said to her, “you look beautiful without your glasses.”   I’m not sure how my daughter takes this.   He means it, but she knows she has to have her glasses to see.    I was happy he had something so kind to say to her though.

The Tiny Girl Chronicles:   My daughter was in the tub doing something unusual.   She had her head pressed up against the side of the tub while it was draining.    She shushed me when I asked, telling me, “I’m hearing the water going through the sewers”.