Tuesday, July 17, 2018

127

My daughter has been going to Detroit with either my husband or me fairly regularly since 2015.   We’ve only stayed at one hotel ever since that very first visit.  It’s about a twelve minute drive to get to the hospital and Dr. Trese’s office and there are probably closer options, but this particular Mariott Courtyard works for us.

For a long time we had one night manager we would see evert time named Susan.   She loved my daughter and my daughter loved her.   Susan would have candy and little things for my daughter and she knew where we liked to stay in the hotel.   It’s not the same without Susan.  

But we still like to stat in the same hotel room.   When we arrive either my husband or I will ask if room 127 is available.   It’s right by one of the external entrances which makes getting in and out of the building easier and it’s on the first floor.   But more importantly, it’s right beside the pool.   And that’s the most important thing to my daughter.  

When we arrived on Sunday I asked about room 127.   The person at the front desk remembered us  and even though it wasn’t quite ready, she was able to get us into the room, saying it was coincidentally the only room on the first floor still available as they were sold out for the night.  Room 127 is almost like home to us when we’re in Detroit.

My daughter loves the food at the cafe in the hotel, which my husband and I aren’t that keen on.   This time it had been several months since we’d been and there was a potentially catastrophic change at the hotel—the Cafe had changed all their food.   That meant the rather meh pizza my daughter loves was no longer available.   And the chocolate chip muffin she looks forward to for breakfast wasn’t served anymore.  

I rather liked the food changes, but I was afraid she would take exception to her favorite foods being gone.   But she rolled with it, having a cheeseburger for dinner and some banana nut bread for breakfast.   And since she rarely finishes anything, this worked for me as I had something to eat that I didn’t consume just to keep from wasting food.  

We’ve left Detroit now without a known return date, but we’ll go even sometime in the future I’m sure given the state of my daughter’s eyes.

The Big Boy Update: After dinner tonight my son said to me, “this is how I throw a baseball”. And then he showed me a great baseball throw from stance to follow-through.  He’s been to one baseball game, but he picked it up without ease.   We might need to look into getting him onto a team if he keeps up this level of interest.

The Tiny Girl Chronicles:  My daughter has been very understanding about the new drops we have to do six times a day.   As I’m wriiting this I’m realizing we’re a round of drops behind.   Her new grey drops are yellow and viscous but apparently they don’t sting because she’s not bothered by then at all.

Monday, July 16, 2018

Edema

My daughter didn’t have eye surgery today, which I suppose is a good thing.  Less surgeries on the eyes as a whole is a better thing.  But something is causing her to lose more vision.   She’s got very little and she is losing a decent portion of what she’s got left.

Recently her pressure was checked in the OR and it was high, which is highly unusual for her because maintaining pressure has always been her problem.   With it now high it would indicate her ciliary bodies have regenerated and are producing fluid, but we didn’t know what was causing the high pressure, and if that pressure was also causing the vision loss—and most importantly, if the vision loss was permanent.

Over the past several months we’ve decreased the steroid drops my daughter’s been using for close to three years now.  At one point it was up to twelve drops per day.   With the new high pressure we moved forward with reducing and then stopping the steroid drops.   The good news is we’d already been dropping the frequency of drops for a number of months.  We finished the steroid drops last week.

Dr. Trese had a suspicion that my daughter had edema (swelling) in her left eye.   He did a dye test to see if dye accumulated in her eye later in the retina and macula, which it did.   This swelling in the macula can be treated with drops…only they’re the drops we just got off of.  The drops that may be contributing to the high pressure.  

There is another option: an NSAID drop that will hopefully reduce the swelling over a period of weeks.   But it isn’t covered by insurance.   And it’s—are you ready for this—expensive.    But we got the drops and are using them more then the recommended maximum times per day because there is some evidence that may help more, Dr. Trese said, and we’re not ones to miss an opportunity for a possible better outcome.

On the good news side, the pressure in both eyes is normal now.   We’re going to keep her on the two pressure reducing drops for now and check back in the future.   We name the drops at our house.   We’ve had Pink and Red for years.   We recently added Blue and Purple for pressure and as of today, VEG, or Very Expensive Grey.

The high pressure may be a result of all the debris she has in the front of her eyes called ectropion uveae.   It’s the presence of pigment cells from the iris.   Her irises had a massive damage done to them with the initial infection that precipitated her vision loss.   All of that debris can block the drainage within the eye.   There are things that can be done to help this, but for now drops make the most sense until we find out more.

In other positive news, Dr. Trese said if there was anything that was going to go wrong, this was about the best “wrong” we could have.   So there’s that.

As Dr. Trese was leaving to go back to the OR he said, “her eyes are so complex and unique I think if someone were to understand everything going on in them they shouldn’t have to do their fellowship.”   That’s saying a lot.

The Big Boy Update:  My son went to a baseball game last night.   He had a good time and today decided he wanted his own baseball jersey.   So he got his brand new, Imagine Dragons white t-shirt and a black sharpie and added some vertical stripes.    My husband wasn’t thrilled.   I thought it was sort of creative, but if I’d been home when it happened I might have felt differently.

The Tiny Girl Chronicles:  On the way back to the hotel from the hospital today, my daughter asked me when it was that she could see out of her right eye.   I told her before she was four.   She said she didn’t remember it at all.   The she said she wanted to go back to one or two or three.   I asked her why, thinking it would be because she could see more, but she gave the answer I realized her play therapist wouldn’t have been surprised at all about.   She said, “back when there were no doctors or hospitals.”

Sunday, July 15, 2018

The Twenty-Five Year Thank You

I got a text tonight from an unknown number.   It was a picture of a shoe bag with the logo from my college on it and the message, “a long overdue thank you for a gift that still gets used twenty-five years later.”  

I didn’t recognize the bag and I didn’t remember giving anyone a shoe bag from my college so I hedged on my response.   Then I got back, “not even a guess who this is?   That LaRose etiquette.”   Well, LaRose is my mother’s name, so the person knew my mother, but I still had no idea on who it was until he told me it was Jason.  

And I was floored.  It was an old boyfriend from when I was in my twenties.   He and I had kept up for a few years after parting ways but had lost touch as he’d moved away for a different job.   Once I realized who it was we started a flurry of texting, asking each other how things were going in each other’s lives.   He mentioned a few minutes he had discovered he had a degenerative eye issue.   I said I had eye issues on this end as well.

Deciding it was too much to type through, we got on the phone.   Same voice.  Same laugh.   It was like no time had past.  He was always a happy person and still was, despite having a rare, possibly unique retinal issue he regularly traveled around the country to have checked by experts in the field (sound familiar?).

He and I talked all about vision, discussing his situation and my daughter’s and their similarities.  We got into braille and how he had considered learning it as he will eventually be blind but that he was dissuaded from doing so because of the technology available.  

I told him all about my children and husband.   He told me about his wife who is now his ex-wife and his current girlfriend.   We both asked about each other’s parents, whom we’d gotten to know well when we had dated.   We caught up on friends we had had in common when we were together.   He has a grown daughter now and some of our mutual friends have children in college.   Has it been that long?   Has that much time really passed?

What was the most striking to me was our general outlooks on life.   We were young when we dated, but we both seem to have evolved to the same place in thinking about life.   He said something that was singular to me, because it’s the same thing I believe and say to people:  we all have our things.   In my case, I have a bad spine and a blind child, everything else in my life I can’t complain about.   When he found out he was going to be blind in the future he said it knocked him back for about three weeks but he got over it and moved forward.   It reminded me of what it felt like when  my daughter’s vision loss happened.   It was awful at first and remains ever present, but it’s not insurmountable.   And there is more to life to be happy about.

We laughed so many times on the phone I can’t count.    I think we could have caught up for several more hours but it was getting late and I had to put my daughter to bed.   He said he comes to our area for basketball games.   We planned to get together at some point in the future, perforable before more than twenty-five years passes again again.

The Big Boy Update:  My son came downstairs this morning and said, “I made this for you, mom.”  He’s made many things with the Tubation tubes before, mostly in the gun and sword vein.   This is the first time he’s made a heart.  


The Tiny Girl Chronicles:  My daughter and I are in Detroit today for an EUA with her retina surgeon tomorrow.   She and I had a nice day traveling, eating chocolate and ending the night having Krispy Kreme donuts at 9:30 at night before she had to stop eating due to the upcoming procedure.   She likes coming to Detroit, maybe it’s because of all the sugar.

Saturday, July 14, 2018

Double Packed

I’ve been packing for what seems like days.   It hasn’t been, but it feels like it.   Ultimately, the total amount of things we’re taking on vacation is very small, which was rather the point in the first place. I don’t like over packing.   And I’m not fond of under packing—especially when it means I forgot something I should have known better than to forget.

It’s taken me so long to pack because I can’t keep at it for more than ten minutes without something interrupting me.  Usually this something involves the word, “mom!” and lots of times is followed by, “Greyson just…” That, or one of a dozen other things not child-related.  

I’m packing for a double trip: two days in Detroit with only minimal things, sending the remainder with my husband and son as they drive up to New Jersey for. our summer beach vacation with my brother- and sister-in-law’s family.

I think I’ve got everything about done though.   I’m leaving a list for my husband to do with things that couldn’t be done until just before they leave.   He and my son will have two days together while my daughter and I are in Detroit for an EUA to see what’s happening with her eyes.

The Big Boy Update:  If you’d told me a year ago my son would love dancing, I would have laughed at you.   Only now he does.   But specific dances: those the characters in Fortnite do.   He’s really pretty good at them.   People who know the game recognize what he’s doing.

The Tiny Girl Chronicles: When we were out on the boat at my in-laws over the fourt-of-July, my mother-in-law had asked my husband to lower the boat ladder on the side of the boat.   As he was doing this fairly easy task my daughter called, “that’s my boy!” to dad.   It was so cute.   I don’t know where she got it from.   Do I say that?

Friday, July 13, 2018

Homework

My son is doing a bit of catching up this summer with some homework.   Or rather I’m not certain if it’s catching up or to give him a boost at the start of the school year.   Or maybe it’s not that at all as his teacher said all the students have work they’ve been sent to do over the summer.   Either way, every day he spends a little bit of time doing schoolwork.

He’s being rewarded for his work with stamps, which he can use as currency to buy things.   Depending on the day or his mood, the lure of stamps can be a driving force all the way to negligible.   If my son would sit down and put his mind to the work, he could be done very quickly, but some days it goes more slowly.  

He’s making progress though.   The work is all reading, writing and following directions-based.   He’s able to read much more quickly now and his writing skills have improved where he isn’t tired by  longer amounts of written parts of the assignments.

Yesterday he celebrated finishing the first workbook.   He’s been working on another workbook at the same time and he’s a little over a week from finishing that one as well.   He does feel a nice sense of accomplishment from getting the work completed.   It’s doing it that he’s not so keen on.

His sister is rather the opposite.   She wants to do homework.   Asks for it and then asks for more when she’s completed the first set I’ve given her.   Her braillest prepared more work for her last school year than her class got to, so she sent it home for the summer in case my daughter was interested.

And boy, is she interested.   I’ve had to hide the folders so she doesn’t do them all in one day.   When she’s presented with a lot of work she gets excited about doing it and doesn’t do it thoroughly.   Today she found my hiding place though.  It was in my standard spot on the counter, but she can’t see it so I didn’t expect her to find it.  I suspect she enlisted her brother for help though.   I came into the dining room to find her with two works selected, laid out on the table and the colored pencils ready to  start.

The Big Boy Update:  I asked my son to hand me something from the drawer last night.   He told me, “get your own stuff.  It’s not like I’m your assistant.”   I couldn’t help but laugh.   I told him I liked that phrase and to beware, I was going to be using it on him in the future.

The Tiny Girl Chronicles:  Over the Fourth of July holiday we were visiting my in-laws.   I came into their kitchen and some music was playing from their Amazon Echo speaker.   I told my father-in-law I liked the atmosphere music.   He said my daughter had selected it.   He told me she said, “Alexa, play some nice music.”  Alexa responded with, “Here’a playlist you might like: Classical Folk Music”.

Thursday, July 12, 2018

Blindfolded

My children are at rock climbing camp this week.   My daughter was interested in rock climbing first; it’s movement, which she loves, and she likes anything physical she can do safely.  My daughter has been to week long camps during track-out while her brother was in school.   My son was interested in going after hearing all about it from his sister so we sent them both for one on one of the holiday weekends.   That was so much fun they asked to do more camps this summer.

There has been no complaints from them about camp this week aside from not wanting to leave at the end of the day.   It’s been the only thing that’s worn my daughter out, with her falling asleep two nights this week around dinner time.  

There are challenges they have during the week: certain difficulties in climbing paths, for instance.   And then there’s the blindfolded challenge.   I was picking the children up earlier this week when one child came over and asked to have a bandana wrapped around her eyes.  I asked about it and found out if you climbed to the top blindfolded you met one of the challenges.  

I got to talking to the girl and when she realized I was Reese’s mother she said to me, “I heard Reese is colorblind.”   I told her that was true, but it was more than that, she was actually blind.”   She was interested and asked me a few questions.   I answered them and then said, “it’s hard for her to tell where things are so it’s always nice when people help her.  You can take her by the hand and show her where to go safely.”   She said, “I want to help her; she’s a really good climber.”

This morning as we were getting in the car to go to camp I asked my daughter if she’d done the blindfolded challenge yet.   She replied, “no.  Do you know why?  Because I’m blind!”   She laughed.   And then she said, “I made a joke about it yesterday.”

This is the first time I’ve ever heard her refer to herself as blind.   She wasn’t bothered by it and was even proud of herself for making the joke.   We try to not make her seem different or special, but there are places and times where there is a difference—and I wonder all the time if it bothers her.   In this case it seems like it didn’t.

The Big Boy Update:  My son has made a lot of friends this week at rock climbing camp.   I came in and told him I’d belay him on a few climbs if he wanted me to.   But no, he was busy with his camp friends.   He’s had some socialization issues in the past so it was nice to watch him interacting with the other boys so easily.

The Tiny Girl Chronicles:  My daughter informed us the other day she wanted to be a vegetarian—except for meatballs.  

Wednesday, July 11, 2018

Ubered

Today I did something I’d never done before: I used Uber.   I’ve ridden in, how is it you say it, “an Uber”?  Who knows, at any rate, I’ve been in Uber rides before but I’ve never installed the app or called an Uber ride myself.   Heck, my father, who’s in his eighties, uses Uber.   I just hadn’t gotten around to it.

I was having my car cleaned for our upcoming trip to visit my brother-in-law’s family.   My husband had dropped me off at my next stop but was then busy doing work with a client—a very slow client that takes a long time to look at each house due to the husband having a walker—so there was no relying on him to get me home.   So I installed the app.

I was two miles from home and it was mid-day during a weekday.   I had no idea how long I’d have to wait for a ride to arrive but the six minute prediction was almost faster than I could get out of the store and wait in the parking lot.  

I got home and messaged the shop to find out if my car could be ready early so I could get to a meeting for my son’s school and they said they could swing it.   I had had fun talking to my Uber driver the first time so I called another Uber and was over to pick up the car fifteen minutes later.  

Honestly, why haven’t I don’t Uber before now?

The Big Boy Update:  Uncle Jonathan and Margaret came to visit this afternoon.   My son was very excited to show Uncle Jonathan Fortnite.   Fortunately, Uncle Jonathan had brought his Nintendo Switch with him so the two of them could log in and play together.   They loaded up Playground mode and my son proceeded to tell Uncle Jonathan everything he needed to know about the game (as seem through the eyes of a seven-year-old).   The one thing my son didn’t like was when Uncle Jonathan would shoot him from time to time.   That wasn’t what he was suppose to be doing.   Only then he’d as Uncle Jonathan to stand still as he pulled out his purple sniper rifle so he could shoot him  In the head.  

The Tiny Girl Chronicles:  I had an idea today.   I connected my daughter’s Orbit braille machine to my iPhone.   She’s been wanting to type a lot and I told her maybe she could send text messages.   I brought up the message chain with her Braillest and she typed, “This is Reese.   I want to see you.”   She knew how to backspace and correct errors and how to confirm the line (which was the same thing as pressing send for the message.   Then she wanted to send Nana and Mimi messages.   As she was typing her second message to Nana, my mother-in-law started to respond.   The phone (with Voiceover currently enabled) spoke to her and said, “Nancy is typing”.   My daughter said in an excited voice, “whaaaaaat?!?”   I told her Nana was responding, that that’s how text messages worked sometimes.    She and Nana had a short conversation and then she did the same thing with Mimi.   It was so exciting to watch.   My blind child who can’t see anything at all on the phone was typing messages and responding to people.