Anxious

I’m not eagerly looking forward to tomorrow.  The word ‘eager’ indicates positive anticipation.   I am decidedly anxious, which is the negative sister to eager.

Tomorrow I will be anxiously awaiting the results of my daughter’s EUA in the morning.   She will have both eyes look edat under anesthesia and she may have something injected into her left eye.  

I’m anxious because we want to hear that things are improving in the right eye, even though she’s not really able to use it yet.   I’m anxious because I want to hear the lens capsule hasn’t opacified from the foreign solutions in her eyes to help them have side-effects.   I’m anxious to find out how her left eye looks and if the large retinal tear he suspected is confirmed.    I’m anxious because I hope they can get a refraction done on her right eye so we can try and get a corrective lens, even though it may be too early to make sense or even help.

And above all, I’m anxious because I don’t want to hear more bad news.   Tomorrow, we’ll know.

The Big Boy Update:  My mother was talking to my son today.  She talked about being cute.   He said, “I might have been cute when I was one-year-old; I don’t know if I’m cute now.”

The Tiny Girl Chronicles:   While we were on the road a bad smell came into the car.   We all asked it was the other person but as the smell persisted we decided it must be coming from outside the car.   My daughter said, “maybe it was from a tractor?”

Fitness Update:  I forgot about the workout I did at the fitness room yesterday.  I lost track of time and ended up doing a whole lot of different things over two-and-a-hours.   Today I am doing nothing as we drive to Detroit for my daughter’s EUA tomorrow but I am busy being sore.

Music Therapy

We had a music therapist meet our daughter today.  My thanks go out to my mother who helped find us someone who could help.   What we were looking for was simple in goal: something that could be my daughter’s personal “activity” like soccer, gymnastics, Tae Kwon Do or other childhood formalized pursuit that would engage her and make her happy.   The catch was it needed to be something she was capable of doing with her vision impairment while also meeting the requirements of her imposed restrictions due to the PFO in her right eye.

I had spoken with Chelsea on the phone and thought we would have a good match personality-wise as well as approach-wise.   My daughter was happy to hear she had a “new friend” coming to play with her that would teach her about singing and dancing and playing the piano and guitar and that the lesson was going to be just for her.   When I told her Chelsea had arrived, she went out on the front porch to meet her.   She became quite cross with me when I opened the door to come see as well, saying I should go back inside.

She was engaged with Chelsea for the entire half-hour she spent with her in the introductory/evaluation meeting and was sad when the lesson was over.    We’re planning to have a weekly session (meeting/play date) with a more defined plan.   Chelsea said the “therapy” part of music therapy is very important and there may be things that come out in their sessions.   She thinks my daughter will do well with some structure in which they spend time singing, dancing and playing the piano.  

We’re just excited she has her own special activity that’s just for her.   I am very excited about hearing her sing new songs and dance in the future.

The Big Boy Update:  Tonight my son was playing some game on his iPad and had convinced Mimi she needed to watch him while dad made dinner.   She came over to me shortly later and told me he was doing well, successfully completing three levels in a row.   She said after the third level he looked up at her and said, “I’m happy with myself.”

The Tiny Girl Chronicles:  Tonight at the dinner table my daughter asked me, “who made mommies and daddies?”  I told her she grew in my tummy and I grew in Mimi’s tummy.  She looked at me and said in an incredulous tone, “are you kidding me?”

Her Mind is 20/20

My daughter has had her Visually Impaired specialist assigned to her as a result of the IEP we completed last week.   Today, we had an opportunity to meet Raffaella and introduce her to our daughter.   Raffaella has a daughter who was born with a significant visual impairment. Her daughter is seventeen now and has gone through a lot of challenges but strives to be successfu in spite of her disability.

We talked about how she can help my daughter in her classroom and what she is capable of now.  At the end of our conversation we went over to my daughter’s classroom and walked around, discussing the materials (“work”) and which ones my caught had had a lesson on and what type of things she did.

We also talked about the limitations she has positionally right now with the PFO in her right eye.   We showed the easel she had reserved for her so she could do upright work where possible.   We also talked about how she moved the chair out from any work she did at a desk so she could work on her knees, thus moving her head lower to the table and reducing the need to peer over.  

Raffaella was very positive about the whole situation.   She said my daughter’s mind was 20/20, even if her vision wasn’t.    We’re looking forward to hearing about Raffaella’s time in the classroom in the future.

The Big Boy Update:  We went to my son’s Bring Your Parent’s to School day this afternoon.   We went when the “Extended Day” children did their afternoon work cycle.   My son took apart a map of the countries of North America without names or lines and got it back together.   He worked on some letters in his journal and did several activities with geometric solids and shapes.   He was so happy to have us in the classroom.

The Tiny Girl Chronicles:  We went to Bring Your Parents to School day today.  My husband and I were so impressed with our daughter.   She was confident yet careful moving around her classroom, even though there were about thirty extra parents in the room at the time.   She selected work to do that was challenging to even a sighted person, but she persevered and acted like it was only normal to stick your hand into the pitcher to find out if it was empty since you couldn’t see otherwise.   My favorite “work” she did was “gloving work” in which she pulled gloves out of a basket and matched them up into pairs.   It was a good exercise for someone with low vision skills.   

The Place to Play

We are fortunate to have several families close to us that have similarly-aged children to ours.  Our children have gotten old enough now that we can leave them alone for periods of time both inside and outside without worrying overly much.    We also don’t worry if they disappear because they’re usually at one of the houses on either side of us.   Typically, as parents we keep in touch via text message, letting the other know we have their children.

I’ve noticed recently that it seems we have children playing at our house more than we have our children playing at their friend’s houses.   I’ve wondered about it some.   Is it because we have the coolest house with the best toys and the most delicious snacks?   I don’t think it is.  

I think it’s in part because one of the neighbor’s daughters is older and she has the initiative to come and find our children when she’s done with her homework.   My children haven’t quite gotten to that point yet where they think through options for an afternoon and then take action.  

We’ve been encouraging them to go and see if their friends want to play when they’re not sure what they want to do or seem bored.   Regardless though, it has been very nice having lots of little children romping around the house, laughing and playing.

The Big Boy Update:  My son said to me today, “Mom, can you put the Lady Gaga radio station on Alexa?”   We have an Amazon Echo in our kitchen.  You can ask questions starting with “Alexa…”.  My son knows Alexa can play music.   Sometimes it’s Elvis Presley’s Blue Suede Shoes.   Today he was apparently in the mood for some Lady Gaga though.

The Tiny Girl Chronicles:  I was at the dollar store today and noticed they had a whole rack of reading glasses.   To do an experiment, I got my daughter some +2.0 reading glasses and some +3.25 ones.   I told my daughter I had two pair of glasses for her to try.   She tried the +3.25 ones and said I looked bigger.   Then she tried the +2.0 ones and immediately liked them better.   She wore them for the rest of the night.   I have no idea what we’re on to, but magnification does help her it would seem.

Petrification

I am not a lover of plants…in my house.   I think plants are simply fantastic…outside, where nature or other people are taking care of them.   I think it’s mostly because I have fear of killing them, or just being a bad plant parent.   What if I give it too much water? (Done it.)   What if I give it too little sunlight?  (Done it.)   What if I give it too much sunlight?  (Definitely done it.)   I don’t like to hurt or kill things and since a plant doesn’t talk to me in ways I understand, I try to avoid them being under my personal care.

And yet I have plants in my house I was given by other people.   There was the terrarium-type-thing given to me for being a room parent one year.   It’s this little pitiful strand of something that seems to barely hang on.   I water it, I’ve given it more soil and I’ve tried various sun situations but it seems to hardly be making it.     There is also the stick I was given by my friend for taking her to her colonoscopy.   It was an orchid plant for a few months but then it turned into a stick.   It eventually produced more flowers but now I’m back to taking care of a stick for an unknown number of months.

I’ve been told, “just throw them out” but I can’t seem to be able to commit planticide so I just worry along and hope plants don’t understand negligence through lack of knowledge.  

There is one other plant I own though that was of my choosing.   I decided to adopt it and I’ve been dutifully watering it every day since sometime in the summer.   It has been doing well, seeming to be fine with the amount of water and sunlight I’ve been giving it.   I’ve been rather proud of myself until the other day.

It was back in the summer sometime that my son came home with a very small branch off a conifer from the neighbor’s yard.   It had interesting form in the short branch and I had the perfect little centerpiece to put it in.   I stabbed the end of the branch into the spikes and put it up at the bar in the sunlight.   I filled it with water and was happy anytime someone mentioned my “bonsai” that was in reality just a branch.  

The other day a small piece fell off and when I picked it up the needles were so sharp more than one stuck in my finger and fell off the piece.   I pulled them out and then investigated the rest because it wasn’t originally so dangerous a plant to interact with.   And that’s when I found out…the reason the plant was doing so well was it wasn’t thriving, it had died.   It had dehydrated and had kept the green color somehow.  

The water in the bottom of the dish must have been just evaporating off.   More falls off my branch if I bother it, so for now I’ve just stuck it off to the side and am going to perhaps let it be a “dried bonsai” decoration.    Here it is, cute little thing, isn’t it?

The Big Boy Update:   My son has had on multiple occasions a, well, screaming fit about going to Tae Kwon Do.   He just doesn’t want to go at all, period.    But once we get half-way there in the car he calms down and then has the most fantastic time in class.   They seem to really like him there and now that he has several friends in the same class, he is loving it (once he gets there, that is.)

The Tiny Girl Chronicles:  My daughter asked at bedtime where dad was tonight.   I said, “he’s at trivia.”   She replied, “is that a new island?”

Seeing Through the Blur

We don’t know what my daughter can see and what she can’t.   We don’t know what the right eye is able to discern and if the brain is even paying attention to the signals that eye is sending.   We have no idea if her view is cloudy or blurry or clear.    She can’t tell us and so we’re all doing our best to help her eyes with the information we can tell.

Yesterday while I was in the waiting room during my son’s EUA procedure I was on the phone standing by the large windows.   I hadn’t noticed before, but the windows were occluded by small circles.   I could see the construction, the office building and the parking lot, but it wasn’t “clear”.

The windows looked normal from the waiting room seats across the room, which was interesting with all those dots.   I walked away from the windows and the further I walked backwards, the more clear the outside scape became.    It struck me as interesting how the eyes can make clear images out of things, even when there are visual obstructions in the way.  

Here’s a picture of the dots on the windows,  installed to reduce brightness and glare:

The Big Boy Update:   My son had some strong feelings after Tae Kwon Do tonight.  In the car going home he was so upset he wasn’t getting his ridiculous way he told me, “nobody in the world is being nice to me except Nana and Papa.”   (He hasn’t seen Nana and Papa in a month.)   He got home and his mood and attitude didn’t improve until right at the end of dinner when my husband accidentally spilt a bowl of rice on the floor.   As my husband frantically tried to get the rice away from the dog my son calmly kept telling dad, “I still love you.”

The Tiny Girl Chronicles:  My daughter excels at being the most pleasant, friendly and helpful child when her brother is losing his mind and getting in trouble as a result.   She clearly knows she’s doing it, but it’s hard not to find her charming when she’s being the perfect child just because he’s not.

Fitness Update:   I ran five-ish miles today.   There was some stopping, bandaid delivering and neighborhood tech support that got in-between the last mile, but I think that’s about right.   After the snow and ice, it was just nice to get out.

Completely Normal

I’ve written a lot of posts about my daughter’s eyes over the past months.   Today, for a change, I’m going to write about my son’s eyes.  

Dr. Trese suggested our doctors here check my son’s eyes to see if he presented with any of the congenital malformations shown in my daughter’s eyes.    We were fairly certain there wasn’t anything wrong, but after all that my daughter has, is and will be going through it was prudent to check it out.

Last week he had a pre-op screening and an in-office visit to our pediatric ophthalmologist.   He saw well, he passed tests, his eyes looked great with her in-office equipment and from what we could all guess, he didn’t share in his sister’s eye issues.  

Today he had an EUA to confirm all was normal.   He waited very, very patiently for hours.   There were several other cases that had to go first and even at two-thirty in the afternoon without a thing to eat since dinner the night before, he waited patiently.   He was good with the three rounds of eye drops, even though he didn’t like them and they stung.

When he finally went back he walked with them and breathed in the mask to fall asleep.   Shortly later our retinal surgeon came out and said everything was, “completely normal”.    Can I tell you I’ve never been so happy to hear the words, “completely normal”?

He was similar to his sister on the recovery side, becoming Captain Cranky.   His level of irrational was pretty much off the scale.   With the help of a very kind nurse I got him into the car and thankfully he fell asleep on the way home.   When he awoke, he ate an entire adult meal of nuggets and fries.

So his eyes are fine.   Next, we need to get my daughter’s eyes on an upswing in vision.

The Big Boy Update:  On the way to the hospital today my son was going over numbers.   He told me when he was seven his sister would be six.    He told me when he was twenty, she would be nineteen. He got hung up when he got to one hundred.   He thought about it for a bit and figured out she’d be ninety-nine when he was a hundred years old.

The Tiny Girl Chronicles:  My daughter wanted to do a puzzle today given to her by her cousins.   You put shapes into a bag and as you pull them out you try and match them into an inset matching their shape.   She can do the whole set of twenty by herself, although it takes her longer than a sighted person would take to do it.