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.

The Biggest Burden?

I had a conversation with a friend the other week about my daughter’s needs and how we hoped she would still be able to function and be successful in her classroom for now while she goes through the multiple surgeries she’s likely to have to hopefully improve her vision.  

We don’t know what her ultimate vision will be and it seems like her vision is declining more and more as we take steps to help her.  At the very least, it is going to be a while longer until we see improvements given what her doctor is thinking may need to be done to correct the low pressure and retinal detachments.

So with that said, I had a concern about what kind of burden my daughter would be in her classroom for her teachers.   We are less concerned about her educational advancement at this time and hope for her to have meaningful and happy time in the classroom with her peers and friends.   We want that time to be something that is low stress for her that occupies her mind and stimulates her intellectually, in whatever way she is currently able.

What worried me was the thought she would be too difficult to deal with in the classroom for her teachers and that she would take too much time as a single student.    When I spoke to my friend, who has several children at our school, one of whom is a special needs child, she told me something I hadn’t thought about.

She said, “you substitute in the classrooms.   Think about which children take up more of your time.   It’s not the ones that need help, it’s the behavioral problems.”   As she and I talked about it, it made me feel a lot better.   She was right.   It’s not the child who is interested in working but needs some guidance or help, it’s the children who don’t want to work, who want to bother you again and again for the same thing because they don’t like their choices.   It’s the child who doesn’t listen and has to be redirected twenty times in a morning to go back to their place and continue with their work.

There are a lot of reasons a child might need more than their share of attention in a classroom.   Many of those reasons aren’t ones my daughter has.   She likes to work and when she’s working she is usually well-focused.  She understands the routine and cleans up after any given work.   She listens and enjoys being part of the classroom routine.  

So yes, she is requiring more help now because of her visual impairment.   And yes, it may be that our school may ultimately not be the best place for her.   But for now, I’m less worried about how much of a burden she may be simply from a vision standpoint alone.

The Big Boy Update:  Stupid is done.   My son has been using the word ’stupid’ a lot lately.   Commonly it is about a thing he doesn’t like and sometimes it’s about a person.   Today he was told the word ’stupid’ was no longer allowed in our house.   If he uses it again he will be sent to his room and there may be additional consequences (snack, screen time, etc.).  I’ll keep you posted on how this one goes down.

The Tiny Girl Chronicles:  I played the keyboard with my daughter last night.   She sat on my lap nd told me she was making up a song.   Because she doesn’t know how to play the piano mostly everything sounds off key, minor, un-harmonic and even sad.   She said to me, “this song is called ‘Sad to Life’”   I tried to get out of her what the song meant because I wondered if it had anything to do with how she was feeling but I couldn’t get more than it had to do with having someone to be with when someone was sad.  

The Tea Party Process

I had said I was going to give some positive thoughts about my daughter’s vision today—or did I say that yesterday?   Either way, the list of things, thoughts, observations and information about my daughter seem to happen faster than I can put them down here at the end of each night.   Tonight I’m going to try and do a catch up on multiple topics about my daughter and her vision.

The Tea Party Process
My daughter got a tea set for her birthday.   She was ambivalent about it for a while but of late it’s all the rage.   She wants to play tea party with you and pour you tea (water).   She wants to serve you food (Cheerios) and have a conversation all about the process of having tea.   Tonight I had tea with her and watched her, as a blind person, serve tea.   She carefully lined up the cup and then poured some water into it.   She didn’t know how much, if any, water came out so she put her finger into the cup to check.   If there wasn’t enough, she’d repeat the process until you had enough tea or cream or sugar.   I’m not sure how much of the tea party was visual-based, other than the colors which she can tell.  As long as you don’t mind a finger in your tea you are welcome to come over and join us.

The Hide and Seek Observation
This also happened tonight.  My daughter wanted to play hide and seek.   She’s pretty good at hiding, although she likes to call out to you as soon as you’re done counting because she wants to make sure you have help finding her.   When it was my turn I went out into the hall and hid one pace off the main hall in the direction of the guest room.   My daughter came out and ran up and down the fairly dark hall and had no idea I was there.   She called out and I didn’t answer.   She asked my husband and son if they had seen me go down the hall, but since they were on the floor below, they didn’t have helpful information.   She called out to me again and when I didn’t answer she said, “daddy, I’m scared.”  (This being scared is new.)  I whistled to her and she came towards me but walked by.   I whistled again and she opened the linen closet door three feet from me and didn’t see me.   I whistled a few more times and she ended up standing two feet from me listening, but not seeing or trying to look for me.   I whistled again and she found me then.   We played a second game where I told her I’d be in her bedroom.   She came to find me after counting and immediately turned on the lights.   She walked past me twice before noticing me.  She didn’t seem scared this time because I told her where I’d be hiding.

I Didn’t Feel It
Her wording is changing.  My daughter asked me this evening if I knew where the scooter was.   I told her it was probably in the corner in the dining room where it usually is parked.    She replied, “No, it’s not there.  I didn’t feel it.”

Fold or Tear?
We saw my daughter’s pediatric ophthalmologist and had an opportunity to talk to her about what we all thought the future of my daughter’s vision was going to be.   No one knows, but I did take solace in some of the things she mentioned through the course of our conversation.  When Dr. Trese did his initial EUA on my daughter he showed us a picture of what he thought was a large retinal tear in the left eye.   Torn retina means permanent cell death and no vision in that area of the retina.  Dr. Grace said he had told her he was going back and forth about that particular thing and had wondered if it was part of the folding process and not a tear.   Dr. Grace said in all the EUA’s using contrast they did on my daughter they never saw any indications of tearing.   So we’re hopeful about what we’ll learn at her EUA on February 1st.

Spherophakia?
Dr. Trese measured many things about my daughter’s eyes, one of which indicated she had spherophakic lenses, meaning they are more spheroid instead of lens-shaped.   Dr. Grace said there is a possibility her lens is less-spheric when her eye is at normal pressure and isn’s so shrunken due to the low pressure.   We’re hoping if Dr. Trese can increase the pressure in her left eye in February that her lens will stretch back out in small part and won’t need to be removed.

Two Inches of Paperwork
Jane, the visual impairment specialist received a copy of all the medical paperwork associated with my daughter’s care by her doctors at Duke.   She said it is about two inches thick and goes through all the things they worked through to eliminate and investigate in trying to find a diagnosis.    She said she would be glad to hand over the paperwork to us now as she no longer needs is but we should be warned, it’s not light reading.

When Do We Correct the Right Eye?
I can’t get an answer on this question.  It’s mostly because there’s not a known answer but I’m anxious and I want a plan so I keep asking in different directions.   My daughter has no natural lens in her right eye.   The hope is the retina is seeing things and healing, but without a lens, she can’t make sense of them.  Getting a refraction could be changing based on how the retina has laid down (if it has) and the silicone oil in her eye will make getting an accurate refraction difficult.   Dr. Grace also said her non-dominant eye (right) is not going to be seeing much with the left eye functioning as the primary visual input because of how the brain works.   But we’re worried about amblyopia and we also want to know how we’ll know if the right eye can see if we don’t get some sort of correction on her eye?   I’ve even asked the questions saying, “can we get in the right direction with glasses?”   My thought being that less-fuzzy would be better than wildly fuzzy.   At some point we need to find out how and if she’s seeing in the right eye, but when and how?   I don’t understand that part yet.    On an up note though, she seems to be bothered by bright lights in the right eye.   It seems to be a change.   This could be a good sign.

Final Thoughts
Dr. Grace was very kind to answer all of our questions.   She seemed to have high hopes for how things were going and said we were in the right place with Dr. Trese.  She also said as we left that children had an amazing way of recovering from things from her experience.    We are hoping my daughter is going to be another one of those amazing children.

The Big Boy Update:   I don’t know where my son heard it, but he’s been saying, “epic!” when something happens that he likes.  

The Tiny Girl Chronicles:  My daughter was with my mother on Friday while we took my son to see the eye doctor.   She asked where Gramps was and my mother explained he had to take his car to the shop because the battery wasn’t working.   My daughter thought about it and then asked, “if his car won’t work, how did he get it to the shop?”

Wintery Mix Excitement

I’m not particularly excited about the sleet/freezing rain combination we’ve been having all day, but my children are.   We had a fun day with neighbors including an impromptu dinner at one of our friend’s houses with drinks, pizza, lasagna and conversation for the adults.

It was fun for everyone, including the children and the puppy who was the center of attention for a lot of the nigh.   We walked home half-way across the neighborhood in the freezing rain and my children are still not tired.  

Tomorrow will bring more frozen precipitation to our area.

The Big Boy Update:  My son can make himself at home in anyone’s home.   He had a great time tonight making new friends.

The Tiny Girl Chronicles:  My daughter loves to make new friends but she’s lately’ been impeded by her visual impairment.   She was shy and introverted for the first half of tonight and then she blossomed out and became he normal, friendly and happy self.   What a difference vision makes.

An External Evaluation

We have gotten a lot of help and information from the county system that has helped put my daughter’s Individualized Education Program (IEP) in place.   Some of the information has been very helpful to us as parents as well.   I have spoken multiple times about Jane, the visual impairment specialist, who did all of the observation and was behind the majority of the recommendations.   Jane has an understanding of how visually impaired people function in an environment that as a sighted and inexperienced person, I don’t.  

Below are some of her notes from her observation of my daughter in her classroom setting two days ago.   And while this does sound sad and dire, tomorrow I’m going to write about some more positive comments her pediatric ophthalmologist told us about the resilience of young children and their vision.   So even though my daughter is functioning as a “severely blind person” (Jane’s words) today, we are still hopeful that won’t be her final vision outcome.

Reese was led to a workstation with work that included geometric shapes which she then tried to identify.  Although she held materials within one inch of her left eye, she could not identify them. She worked on returning materials to their correct location on the shelf instead. After a while she chose to lay on the floor and rest. She went back to sorting things on the shelf for a while longer. Then she stood up and walked a few steps. She didn’t seem to know how to move to another location. When she heard her teacher speaking with another student, she went to the sound of her teacher’s voice. She navigated around a shelf to do so. She waited until her teacher could speak to her. 

Next she attempted to put together a snack. Her teacher helped her look at cards that indicated how many cucumber slices and crackers to get. She could see the number of dots that indicated the number of slices, by holding the card 1 inch from her eye. She was assisted in orienting the card with the numbers/dots for her. She was able to use tongs to pick up cucumber slices, crackers and raisons. While it did take her a little longer to do so without vision, she did persevere. Carrying her own snack plate, she was able to find and move to the snack table independently. She appeared to use a combination of visual and tactile clues - the sunlit window, the shelf to her left, the dark carpet runner, and her memory to independently move to the snack table.

The children at the snack table talked about the construction going on outside the window. She said the large yellow tracker outside was too far to see. It was about twelve feet away. She did say said she could see people walking past the window. Next she independently cleared her table, brought things to the trash can, washed the table and then folded her napkin and placed it in a slot. She felt with her hands to see if there was an empty place to put her napkin. She bumped into a table when returning her water glass.

She was able to use a tactile, rather than a visual approach, to a number of tasks. For example, she worked on screwing some nails into a wooden board using a tactile approach. She was calm and focused throughout the observation.

The Big Boy Update:  My son had an eye exam today in preparation for his EUA on Monday to make sure he doesn’t exhibit any of the congenital issues his sister has.   He sees fine and we are all of similar mind from the completion of the exam that Monday’s evaluation will likely show normal eyes.  My son has had a bit of an unexpected benefit from the day though because his eyes were dilated.  He explained multiple times how things were fuzzy and how it was harder to see.   We helped him understand that his sister had very fuzzy vision all day, every day and that was why she couldn’t see well.   I think he understood.

The Tiny Girl Chronicles:  My daughter has decided reading glasses are a good thing.   She picked them out at a variety store for some strange reason, having no idea what they were.   She put them on and decided she liked them.   They are +2.5 magnification reading glasses.   She really likes them and has been wearing them, including wearing them to school today.    We mentioned it to her eye doctor today when she was seeing her brother for an eye exam and she said the magnification may be helpful for her left eye.   I don’t know how it’s helping at distance though, but she seems to like it.   We don’t know that her non-dominant (right) eye is able to benefit from them either, but if she likes them, that’s works for us.

IEP

Today marked the final meeting to finalize my daughter’s eligibility for an Individualized Education Program (IEP).   It’s a long and arduous process with the county to determine if a child qualifies for specialized educational help and if so, how that help will be given.  

I wish I knew nothing at all about this whole process but since we do have a child who is currently well beyond the definition of legally blind today with an ultimate visual outcome unknown, we are going to need help.   We’re going to need help from people who know how to help a visually impaired child so that my daughter can continue to be challenged mentally and be ultimately successful and happy in life.

We have been working with some very kind people who have spent lots of time trying to make the best recommendations for our daughter.   There has been a lot of questions because of the continued change in her vision and the unknown future of her sight.   The recommendation they came up with was for a pre-school for the blind.   This is a good school, a great school in fact with a 1:3 teacher to student ratio.  It is quite close to us and there are many advantages to moving my daughter to this school.  

In weighing all the aspects of my daughter’s life including he mental well being, community and “home” at her current school we didn’t think the school for the blind was the best choice for her right now.   We had many conversations with her teachers and administration at our school because we wanted their input as well and their thoughts on if and how she could be successful at our current school.

To say we were touched by all we have heard from those at our school would be an understatement.   We have always been exceptionally partial to the stellar teachers and staff at our school and their willingness to help out my daughter through this challenging time both mentally and physically, has truly moved us.  We all have an open dialog going forward because with additional surgeries, healing and the overall unknowns with her eyes, we don’t know what will ultimately be the best place for her; but for now, we are warmed by the thought she will remain in her school “home” surrounded by all her friends and favorite teachers.

From an IEP standpoint, we discussed today what other services would be provided to my daughter given our choice of schools.   Starting in a few weeks, she will have two one-hour sessions in her classroom with a visual impairment specialist.   She will have one hour each with with an Orientation and Mobility specialist to help her navigate her environment and help her understand how to move safely.

We are so grateful to the team helped bring this process through to it’s culmination today.   We all agreed the IEP needs to be open for reassessment at any point due to the potential changing of her vision based on future surgeries, healing, correction with lenses, etc.  

Today was a first step.  I would like to say we won’t be needing help permanently but that’s something only time will tell.

The Big Boy Update:  Earlier tonight I said, “you already have that one.”  My son said, “no I don’t.  I’ve been waiting for it for years.”

The Tiny Girl Chronicles:  I think my daughter got wedged into the car seat somehow with her jacket this morning.   Imagine the following sentence said in a mildly exasperated tone and you’ll understand why I couldn’t help but laugh in the front seat.   She said, “perfect…I got my bottom stuck to my butt!”

Cold

I don’t  have one, it is.   It’s cold.   It’s cold outside and I have small children that don’t seem to understand that the warmth inside a building doesn’t extend to the outside of a building.   My son got put out on the front porch without socks today so he could get a better understanding of why I said he had to wear socks to school.    He put the socks on after about two minutes.   Then he walked around to the back door, thinking it would still be unlocked for the dog.   He didn’t argue about socks for the rest of the day after that.

Then we had the jacket discussions.   You have to wear them to go out when it’s in the twenties.   This proved to be a highly complex concept for my children to understand today and I don’t know why.   They were happy about jackets at the start of the season.  

And don’t get me started about gloves and hats.   I’m hoping they will have several “I’m cold!!!!” experiences in the coming weeks to start to believe us when we tell them to get ready to go out.   For now, I’m going to finish this post and go put a few more strips of paper in the yelling bowl from today.

The Big Boy Update:  My son was throwing a whining tantrum the other morning.   I told him I wasn’t going to listen to him any more and shut the door to the bedroom.   This infuriated him because he no longer had an audience.    About two minutes later I had to go back to the kitchen to get something (probably my coffee).   I overheard him complaining to his sister in the same whining voice about how I was in the bedroom and I had shut the door and wouldn’t let him <insert whatever it was he was upset about>.

The Tiny Girl Chronicles:    My husband was getting the children ready to go to the car.  He had asked my daughter to put the lunch boxes into their school bags.   She had gotten one in successfully but was getting tripped up on the second one.   He asked her if she needed help and she said, “sometimes I just can’t see things.”  This is the first time I’ve ever heard her say anything like that.   We all know it’s true, it’s just hard to hear her say it.

The Bouncy Ball Observation

My husband and I go back and forth between being hopeful and being dismally depressed at my daughter’s vision situation, outlook, future, etc.   I can go into all the unknowns and variables at this point which boil down to somewhere between, “completely blind” and “will never have perfect vision.”

When we see signs and behaviors to indicate things are worsening on a daily basis it’s hard to keep hopeful, even though we know what’s happening in the right eye might be improving but can’t yet be taken advantage of.    Suffice it to say, roller coaster—you get my meaning. 

We have been thinking positive things like, “what if the right eye is capable of seeing things somewhat okay, but what if the lack of lens makes it hard to tell what the retina is seeing?”   That’s a positive thought.   That’s a hopeful thought.   Tonight my husband had a different thought and I wish he’d never had it because now I can’t stop thinking about it. 

We found a bouncy ball when cleaning up.   It was clear with glitter sparkles in it.    He said, “put it as close to your eye as you can.”   Folks, I couldn’t see anything.   I could tell my eye was open, but the information coming through wasn’t useful in any way at all.   I wouldn’t have been able to navigate around an elephant in front of me and I couldn’t discern a green shirt versus a white one.    

Then my husband said, “but look directly towards the celling light.   Can you tell it’s brighter?  Yes, I could easily tell where the light was and it was much, much brighter.   Then he waved his hand in front of me and said, “can you see me waving?”   I could barely tell, but I was definitely able to see movement.  

He said, “what if that’s what her vision looks like?”   Those are the things she can do now, but what if that’s what she’s actually seeing?  We just don’t know because she can’t tell us at this age.  I hope it’s better than that.   Tomorrow marks one month from when Dr. Trese performed surgery on her right eye.   Hopefully things are healing and vision is returning.   For now though, we just don’t know. 

The Big Boy Update:   My son got upset because my husband made breakfast for him this morning instead of me.   This is typical morning for him: the smallest thing can set him off.    He was fuming though as he said to me in a cross voice, “can you get me a pen and write a sign that says this is the door that dad needs to go out so he can no longer be a member of our family?”

The Tiny Girl Chronicles:  My daughter has been listening to audio books at school during rest time.   We thought she wasn’t going to take to it well, but from talking to her after school teacher today she seems to be enjoying it.   She asked to listen to the “Gingerbread Man” story again today.  

The Flat Footed Findings

We’ve had an unintentional experiment underway in our household for quite a while now.   It all relates to foot pain and shoes.   It started with my husband saying his feet were sore and my suggestion for him to look into getting fitted for shoes that addressed the shape of his feet.   He went to my favorite running store with me and was told he had very flat feet.   This much we knew because there was no arch to be seen when he wasn’t wearing shoes.   He selected the same shoe he had been wearing already, but this version of the shoe gave him more support.

He liked the shoes.   They made his feet hurt less.   They were comfortable.    Good news there.    That was two or three pair of shoes back.    Hold on that story for a minute though and let me side track to my story.    I have fairly easy, happy feet.    I had to figure out which running shoes worked best for me, but otherwise, I can wear any type of shoe and be comfortable in them (aside from high heels, which are the scourge of womanhood if you ask me).

My husband and I were going along just fine when—and this is something we’ve pieced together in retrospect now—he started to have foot discomfort when he got up in the mornings.   This continued on and off for some time, mostly in the mornings when he got up as tightness in his feet.   It presented like the beginnings of plantar fasciitis, which was odd and unexpected.    It got a little worse over time and got mildly annoying to him and worrisome because was it going to get worse, and if so, how?

Back to my story, which took a turn when I got a really neat-o pair of shoes from the company Hoka. These shoes are great running shoes and tout a big, comfy support base on which to run.   I jokingly said it was like running on a marshmallow.   I liked the shoes a lot but they caused me mild shin splints when I ran so I stopped running with them, favoring my other shoes.   What I did do was wear them around all the time because if they were comfortable to run in, imagine how comfortable they’d be to walk in all day long?

And then something strange happened, that I didn’t expect.   I started having tightness pains in my feet when I got up in the morning.   It took a while to come on (months) and it was not that big of an issue because it only lasted for a short while; but like my husband, I wondered why was it happening at all.

After a few more months I started noticing a pattern though: wearing the Hokas more seemed to ramp up the morning tightness.   Could it be?  I was seriously skeptical because I loved my Hokas, but I felt it was worthwhile stopping wearing them for a while to get a good test sample.   Two months later and the discomfort was almost non-existent.   Then, I transitioned to winter boots instead of sneakers, which have absolutely no support, and the morning tightness went completely and quickly away.

My husband and I had been in conversations about our observations and had figured out that while his feet weren’t sore at the end of the day as much any more, he did think the shoes with more support may have been the start of the early signs of plantar fasciitis in his feet.    As a test, several weeks ago he stopped wearing his the sneakers with the specific support for his flat feet and went back to footwear he’s had for many years that had little or no arch support.   And guess what?  His feet are feeling better and better.

So what is going on here?   I don’t know about everyone else out there, I only have a test bed of two subjects, but it seems at our age the there is such a thing as too much foot support.   Whatever the case may be, I’m not arguing with less foot pain.

The Big Boy Update:  My son was very excitedly playing with my neighbor’s children tonight at dinner.   I think he was trying to impress one of their girls but I’m not sure he was going in the right direction when he said, “I’ve bit my brain before.”

The Tiny Girl Chronicles:  My husband and I notice a continued decline in my daughter’s vision.  Weather or not the right eye is healing/improving is not something she can take advantage of visually yet because she has no corrective lens in her eye.   That means what she’s getting from the left eye is what she’s getting and that seems to be less and less.   What scares us more is how her personality seems to be changing, how she seems to be more shy, more introverted, more focused on playing games with herself because she can’t interact with her peers as easily now.    We are hoping for some good information on February 1st and likely surgery on the left eye to bolster it and return some of that vision while the right eye continues to heal.

Fitness Update:  We ran two-ish miles this morning until it began to do some rainy sleety thing so we went to the fitness room.   My thighs are in a world of pain after the trail runs yesterday.   My neighbor seems to be less-affected, but she does a lot of additional training to support that kind of run with the trainer I haven’t been going to in some time.

Lost in the Woods

The title of this post is a literal one.   We got lost in the woods today.   We run in a large natural park that abuts our neighborhood and over the past four years we’ve put in a lot of time running, walking and biking in the park.    What we’ve done though is almost exclusively on the “bike and bridle” trails which are graveled, groomed and large enough for the park vehicles to travel on.

Today, we branched out to do some single track trails.   We’ve been thinking about doing the marathon held in the park by the running group that got me started running for a few years now but it just hasn’t worked out.   This year we signed up and now we’re training up for this race, which is going to be different for us.

The part that will be nice is it’s our “home course” if you will.   We’ve run marathon distances in the park before as we’ve trained for other races.   What we haven’t done is run a lot of the areas we’ll be running for the marathon though.   There’s a particular section of trails I nicknamed “The Hateful Route” back before I’d run my first 5K.   It’s full of steep hills and switchbacks.    For the marathon, we’ll be running The Hateful Route not once, but twice as it’s the final stretch before the turnaround.

There are also over six miles of single track trails.   We decided to try them out today as well as check out the start/finish line.    It was about five miles of running to get to the starting point.  We then went to the first of three trail offshoots.   These narrow trails turned out to be beautiful.   They ran by streams some of the time and the canopy of forest was enchanting.  But they were a test of our ability to remain upright due to roots, rocks and muddy areas from the recent rainfall.    If you didn’t look down and focus on where your feet were going next, you could get in trouble easily.

We came out of the first side trail and I got us to the second side trail with only a small hitch.    About two miles later we exited the second trail and were thinking about getting home.   We realized we were near a parking lot and decided it was worth the detour to see if there was water there.   We passed a biker who confirmed our water thoughts and a short while later things were looking better on the running front from a body aches perspective.

This running on single track trails is far different on the muscles needed for running.   We were both sore and tired.   I took us to the third and final trail entrance and about a mile or so later we knew we were in the wrong place.   The problem was, what place were we in?   The maps showed two branches for the trail name we had been running on.   I didn’t realize there was more than one option because the marathon trail map only showed the trails we’d be running, not the other ones near them.

So it wasn’t a complete disaster, but we ended up doing several miles of additional trail running.   We were also close to fifteen miles into the run and our legs were so tired we both stumbled multiple times.    We emerged finally, coming out near the far entrance to The Hateful Route.   I don’t think I’ve ever been so happy to see The Hateful Route before.  

Four miles later we got home.   I’m glad we ran the small trails today.   I think we’re going to need to do it again before the race.    I’m a little worried how sore I’m going to be in the morning though.

The Big Boy Update:  My son got his first belt in Tae Kwon Do last night.  He was in a large room without a single student he knew from his class.   He was also the smallest child in the room.   He stood there, listened to the master and followed all the moves.   He got his high white belt before any of the others at his level.    He was very excited when the master called him up to get his belt first.

The Tiny Girl Chronicles:   This morning my daughter came down to our room and said, “we forgot to put the patch on my eye last night.”   I told her that it was probably okay.    She said, “it’s okay, I was being saftely.”

The Paper From 1969

I stopped by my parent’s house a few days ago to drop my daughter off for a play date with my mother.   I had heard my father was doing one of his periodic basement clean outs when I talked to my mother the day before.   My father is a collector of things.   His collections tend to be interesting, valuable or just unusual.   The basement was always an interesting place to go as a child because it was filled with so many strange and unknown items.

As collectors go, my father is one of the most interesting people I know.  He dabbles in lots of things.  And when he dabbles, he dabbles well.  He’s great at taking things apart and fixing them, or coming up with a solution to a problem no one else would have though of.    It was always fun to see what he was doing in the basement, although I wasn’t always welcome.   I am sure it had absolutely nothing to do with me being a rambunctious, pester-some child.

For my whole life there was a dark room in the basement in the corner of the unfinished area.   When I was very young I have recollections of my father doing film developing in the room.   I remember the smells and the warning to not open the curtain while he was inside.   He took a lot of pictures and many of them ended up on the walls of our house.   There was one of my toes, a marble and a crayon that stayed up for years.

After a while though my father moved on to other hobby pursuits.   The dark room became a storage room.   It was crammed full of things and since it was dark to begin with, I never really knew what was in there.  I seem to remember beakers and other glassware in one corner and a small jar or mercury I was told to never, ever get near because if it spilled it would be all hell to clean up.

My father has decided to clean out the dark room now.   When I stopped by the other day to drop off my daughter he told me he had gotten to the bottom of one of the shelves to find the newspaper lining the bottom.   The date on the paper was 1969, the year before I was born.

I wonder what he’ll do with the little darkened room when he gets it all cleared out?

The Big Boy Update:  My son was playing a Lego video game today.  There was a little bar over the player’s head indicating how much health or life they had left.   My son said, “my guy’s running out of battery.”  He knows what the battery bar looks like for his iPad and his little character’s bar pretty much looked the same to him.

The Tiny Girl Chronicles:  My husband said he thought it wasn’t a good day for her vision.   When we say things like that it may well be our observations make us think it’s a bad day, but it’s no different in her world of vision than it is any other day.   It’s so hard for us to tell.   We did take a flash light and shined it into her right eye, which annoyed her to no end.   Dr. Trese said there is some research with bright lights to stimulate the retinal cells.   I don’t know if it was good or bad, but we do know she can see out of that eye and she can see light fairly strongly.    I sure wish we knew what she could see though.

When Seventy Isn’t Seventy

I have been cold.   I have been unexpectedly cold lately.   I’m cold right now in the basement as I write this.   I know it’s been more winter-like lately and the temperature outside has dropped well into the double layer jackets stage, but I’m inside right now and it’s not cold in here.

When I first started feeling cold I would go over to the new thermostat to check out how cold it had become.   I would discover the temperature wasn’t cold at all in the house, it was in fact right within the temperature range we had configured.   It was positively clement in the house.   After this happened a few times I thought I’d better check again because maybe it was the humidity instead that was causing all the not-cold cold feelings I was having.  But that wasn’t it either; our house was right in the middle of the “most comfortable range of humidity”.

The temperature we keep the house at during the cold months is slightly cooler than what we keep it during the hot months, but it shouldn’t account for how cold I’ve been feeling.   I’m wearing more clothing now so even a few degrees shouldn’t make me feel so cold I want to huddle around a hot cup of tea and then take a steaming bath to get un-chilled.

Wait a minute, could it be the windows?   Could I be cold from being near windows?   No, can’t be.   My bed is in the middle of the room and I’m under covers there.   I spend a lot of time in the middle of rooms or walking around rooms or holding on to hot cups of tea as I move from room to room in my boots, sweaters and vests.    The air seems to flow about a reasonable bit because I can walk around and not feel a drop in temperature as I go from place to place.

So I don’t know what’s going on.   Maybe if I do a search on the World Wide Web I might find some answers.   I will say though that I’m not the only one having problems; although it seems not all of our problems are the same.  My husband told me last night, “did you change the thermostat settings?  I have been hot a lot lately.”

The Big Boy Update:  My son had his five-year-old wellness check today.   At the end they gave him two immunization shots.   He was fine throughout the quick process but he was angry at the end.   He told the nurse angrily as she left, “I’m gonna go to another doctor! … To get that blood back!”

The Tiny Girl Chronicles:  My daughter likes to play on our keyboard.  It’s old and it’s big and it’s big trick is the “DEMO” button that plays a very fancy acoustic version of Paula Abdul’s “The Way That You Love Me”  which was all the rage when I bought the keyboard at least twenty years ago.   My daughter went to Mimi’s house not long ago and they did some playing on Mimi’s piano.   When they were done, my daughter looked around and then asked Mimi, “how do you turn it off?”

I’m Going to be Sad…But Only For This Song

This post is about my daughter and how she’s been handling her sadness in her own way.    She’s sad and scared about her vision loss, we know that.   What we can’t tell is how sad and how scared.   It seems to come in short bursts that she gets over very quickly.    I think it’s the adults who are having the harder time being happy because we understand so much more.

Today after school the children’s good friend, Keira, came over.   She and my two children were running around, having fun and laughing.   They were doing things young children do and I was so happy she was over because there were no conflicts and everyone was busy doing imaginative things, laughing and getting some much-needed energy burned while I cleaned up lunch boxes and got things ready before my husband and I went out to dinner later.

I came around the corner to find three children in the living room, two of them upside down on the sofa.   They were so excited about this.   My son and Keira were jumping up onto the sofa into a headstand and kicking their legs over the back of the sofa.   They were laughing.   My daughter wanted to do the same thing.   She can easily do this.   She could probably do it faster and more effortlessly than the other two and I wouldn’t have been surprised if she’d even taught it to them—she loves flipping about.

She popped up and over and we had three laughing, smiling upside-down children on the sofa.   It was great.   I was laughing with them.   And then I realized what she was doing.   Upside down might not be so bad, but she was flipping forwards to get there.    Was she in danger of swinging the PFO substance into the anterior portion of her right eye?   Should I panic?    I watched in frozen horror and delight, unsure how I should react to the whole thing.  

I erred on the side of safety and told her she couldn’t do it any more.    I told a four-year-old child she couldn’t have fun doing something easy and exciting to her.   She got quiet and nodded when I told her why and then she got on her scooter and rode off into our bedroom.

I followed her a few seconds later and heard the door to our closet being shut.   She doesn’t do this.   She doesn’t hid in our closet unless it’s for hide-and-go-seek.   I opened the doors to find her sitting on her scooter, looking away, off towards my husband’s shirts, with her hands on her knees.

I came up to her and squatted down.    She said quietly, “I want to be alone.”   I tried to talk to her and she told me firmly, “I want to be alone.”   I said something else and she screamed at me, “I WANT TO BE ALONE!”

I sat beside her quietly and then said, “do you want to help me organize the new beads I got for making necklaces?”   She looked up and said, “okay” and took my hand and walked out of the closet with me.

So I distracted her from her sadness and she was definitely not sad as she helped put colored stringing beads into a container, but did she have a chance to process her sadness?   I don’t know.     It reminds me though of what she told my husband yesterday though.    They were in the car when Enya’s song, “Watermark” came on the radio.   She said to my husband, “this song looks like it’s sad.”  My husband agreed it did sound like a sad song.   She thought about it and then said, “I’m going to be sad, but only for this song.”

The Big Boy Update:  My son’s Tae Kwon Do teacher asked him last not how he felt after doing one-hundred kicks in a row.   He looked thoughtful and then replied out loud to the whole class, “I feel happy, happy, happy!”

The Tiny Girl Chronicles:  My daughter found a chocolate coin in a party favor bag from a birthday party this weekend.   She said, “I got a chocolate coin, just like I love!”   (She absolutely loves chocolate coins.)

First Day of School

It’s an odd time of year for the first day of school, but today was the first day of school here on several fronts, each of which we are proud.  

First, it was the first day of school at our newly-constructed school.   It has been, I think, a nine-year process to get from original plans for our children’s school to buy and/or build their own school until today, the final opening day.

Many opportunities were evaluated and over the course of seven years, no decision was made because nothing was quite right.   The day I joined the board of Trustees was the day two final proposals were given to the board and a vote was agonized over and our current site was finally (a week later) selected.

There were multiple delays from our original opening date, the details of which are long, complicated, frustrating and out of our control for much of the time.   The school’s staff, trustees and many other people did so very much to get us to today, our first day of school.

My two children had an hour’s orientation yesterday to see where their new classrooms were.   Today, I assisted during morning drop off and I was very happy to see so many children who knew just where to go to find their new classrooms.

It’s another “first day of school” for my son today because he starts what is the Montessori equivalent of Kindergarten.   Prior to now he’s been in school until noon and after noon he goes to an after school room for lunch, activities, rest and outdoor time.   As of today, he is in something called “Extended Day”.  

Becoming an, “Extended-dayer” is a big deal for Montessori children.   They continue in their main classroom with the five- and six-year-olds after the younger students have left.   They each lunch together and then do another work cycle in the afternoon.   There are field trips and a lot more education during the day than he had in his half-day class before now.

As a trustee, I am very pleased to see the new school finally open.   As a parent, I was very proud of my two children as they walked off to their classrooms this morning, happy to be returning to school to see their friends they’d missed over the long holiday.

The Big Boy Update:  My son was telling me a story on the way to dinner after Tai Kwon Do tonight.   He said, “I can be inside your brain right now.   All objects, everything, are mine.”    I told him he had some serious super powers.

The Tiny Girl Chronicles:  Right form vision?   Well, we don’t really know, but we think my daughter may have some small amount of form vision in her right eye.   Being able to test for this without causing her extreme anxiety has been tough, but she’s gotten less scared recently.   We patched her left eye tonight and turned all the lights on around the house.   We asked her to find some things like the fireplace, the sofa, chair, Scout (the green dog) on the floor.   She was able to do so.    This is tricky though, because she remembers how the room is laid out.    She is bad though at rotation amounts, so when she rotated until she found the chair ahead, I think that may have been real.   When she saw Scout on the floor in the corner, that might also have been valid.     I did another test, telling her to find me in the foyer.   She went to the back door—on her scooter, with socks on her hands—to open the door for the dog who wanted in.   Then, she ran into something and fell down.  After that, it looked like she was feeling for walls and furniture and not trying (or perhaps she was trying too hard.)   So we’re not completely sure things are improving, but it’s been less than a month since surgery so we’re taking this potential progress as a good sign.

Automatic Garage Door Opener

Every now and then I post about something really cool our Tesla Model S does.  Initially, when we first got the car, pretty much everything it did was cool and exciting.   Over time cool and exciting becomes normal and expected but with a Tesla, surprises keep coming.  

This is due to operating system updates that come out from time to time, giving more features to vehicle owners.   In one release, our car was able to accelerate faster because the engineers figured a way to optimize things from the software side.   There have been lots of other updates, some much-awaited, that caused us to huddle in the car together after the update to read the release notes for specifics.

This update we got something called, “Summon”.   Or rather we got part of Summon.  Our car was manufactured before the full Autopilot features were available, and since we don’t have the hardware for the car to be able to navigate itself autonomously, we only get parts of the features.   So while our car can’t come to find us, it can open and shut the garage door itself when it finds itself in range.

So now when we back out of our garage, the car shuts the garage door.   When we come home, the car, detecting we’re in proximity to the house, opens the garage door for us.

My husband and I spent a good bit of time driving up and down our street and in and out of our garage we were so excited about this new little feature.   I have no idea what the neighbors thought.

The Big Boy Update:  My son has his first test for a belt in Tae Kwon Do at the end of the week.   He’s been away from class for over three weeks now and we’re hoping he remembers and can pass the test.   He has two more classes this week to prepare.   We’ll make a decision later in the week if he’s ready.   He really likes the class and the masters.

The Tiny Girl Chronicles:  I had to take my daughter out of Tae Kwon Do classes due to her eye surgery primarily, but also because she was having more and more difficulties in seeing what the instructor was doing.    Her brother went to class with my husband tonight and while she was calmly eating I asked her if she knew where he was.    We hadn’t really talked to her about it and I was worried she was upset.   She said, “he’s at Tai Kwon Do.”   I asked her if she knew why she didn’t go.   She said, “because of the jumping.”   I told her she was right and that her doctor wanted her to choose some other activities for now.   I talked to her about violin lessons and singing classes.    She said she would be interested in them.

The Trinomial Cube

This is about my Christmas present from my husband.   It’s something I’ve had on my Amazon wish list for three years that I suppose didn’t look that interesting.  I was a math major in college, was on the math team in high school and college and am the daughter of a math teacher.   The thing I wanted was a Trinomial Cube.   It looks like this:

It’s a puzzle with lots of little blocks.   The blocks, when put together correctly, make the same pattern on each side.   But there’s more.    The puzzle is a physical representation of the mathematical formula:



The formula shows the area of the whole cube can be expressed by summing the areas of all the prisms that make up the cube.    Here are all the pieces laid out:

This may look and sound very complicated, but when I opened my present at Christmas my five-year-old son said, “hey, we have that work at school.”   I watched him take the puzzle apart and put it back together with no problem.     He doesn’t understand math at all behind it, but he does know the colored sides all touch.   He put the red pieces in so the red sides all touched and then did the same with the blue and then the yellow.    Several years from now when he’s in elementary school, the Trinomial cube will come back and he’ll learn how to express the pieces and the cube as a formula. 

It’s exciting stuff, watching children learn.  

The Big Boy Update:  My son was playing a game where he and my husband were chasing each other around.   I wasn’t paying attention to what was going on until I heard my son call out, “you’re a big giant robot that fires meatballs.”   I couldn’t help but laugh.    My husband played the part, making squishy blop sounds as he shot meatballs out of his hands.

The Tiny Girl Chronicles:  My daughter worked very hard on a drawing for me today.   She told me it was a golf obstacle course.    Then, she affixed it to the refrigerator with a large amount of stickers.   Later she walked by it and noticed it.   She said, “mom, it’s your golf course obstacle drawing.”   I was so glad she saw it.   Or maybe she just remembered she put it there.   It’s so hard to tell these days if she’s seeing or using other input to determine things.

Fitness Update:  I ran fifteen miles today and the first time I’ve run in a month.   It was fun, aside from the first mile in which I questioned if this was a hobby I really liked.   After we got moving though the rest of the run was very enjoyable.

No One Would Ever Have Guessed

We would go out to a restaurant, park, store, etc. with my daughter several months ago and she could navigate an unfamiliar environment easily.  She  was able to participate in things well enough that people didn’t realize she had a vision deficit.   If it came up at all, we would commonly hear, “no one would ever have guessed” because it wasn’t readily apparent at that point.

Things have changed since then and it is now apparent fairly quickly to strangers that something is amiss.   Part of it is a good thing because my daughter has figured out she needs to ask for help.   She will come up to you and ask, “are you mommy?”  Before, she would wander around, making these stressful faces and then make these little peeping sounds when she got near a person in the hopes we’d speak and call out to her.   She will tell you now if she can’t see something or if she needs help, which is a great thing, because we want to help her, but we don’t know when she has a need.

She, sadly to me, also looks like a blind child a lot of the time.   Her eyes don’t track like a sighted person’s does a good part of the time.   She looks at things and tracks things with her eyes, but it’s more of a distant thing and if she’s in conversation with you, she doesn’t even bother to look at you, she sort of disengages her eyes and listens.

With the slow loss of vision that’s continuing to happen, she needs help navigating now too.    We make sure she knows if there’s a curb or steps, just in case she misses them.    In lines or in busy places we have to say things like, “I’m over here, follow my voice” and “walk to the left, you’ll be able to feel the chair in a few more steps.”

Aside from the additional directions and the asking for help, she seems to be fine with her current reality and is coping well.   She does have some stress, but she’s working through it well and adapting.

The Big Boy Update:  On Friday night the fireplace was turned on by someone.   It wasn’t cold enough outside to merit a fire, but it was nice and cozy feeling so we kept it on for a while.   My son remarked, “that fire is so hot I can’t even believe marshmallows are real.”

The Tiny Girl Chronicles:  My daughter got glasses today.   They are clear lenses so no correction, but the glasses will help protect her when she’s playing outside or in an unfamiliar area that could be hazardous (like walking in the woods with lots of small branches she can’t see.)   They are light pink, rubber and have a strap to keep them on.    The vision center we got them was so friendly.   They were able to get the lenses made in a day instead of a week.   My daughter likes her glasses quite a lot, although wearing them for long periods is not yet something she’s decided she likes.

Fitness Update:  That’s right, you read correctly, I did some exercising today.   We tried to run but it was raining so we went to the fitness room and did about ninety minutes of different things.   I worked on sprints on the treadmill and did a lot of upper body.   So glad I didn’t forget how to exercise.

Traveling Hopefully

My mother came over a few days ago and had a newspaper clipping.   She has these a lot, from newspapers, magazines, printed out from a web page, brochure.   She had found something that she said made her think of the situation we’re in with our daughter.

The quote was from Michelle Dockery, one of the actors from Downton Abbey.   She said one of the lines she loved acting the most was, “All we can do is travel hopefully.”

We’re traveling hopefully over here.

The Big Boy Update:  My son was playing with his friend, Dylan tonight.   She’s much older but she is great to our children.   My son told her she was adorable several times.   Later she didn’t let him do something he wanted to do and he said, “Dylan, you’re not adorable anymore.”  Earlier today he also told me, “grownups don’t have brains.”

The Tiny Girl Chronicles:   I found some My Little Pony tattoos tonight.   My daughter wanted to put them on—the full sheet—at once on her stomach.   She lay back and held the wet sponge on the sheet and counted to thirty.   Her stomach is very colorful now.

The Power On Channel

The power on channel on our television is set to Disney Jr.   It’s been set to that for a number of years now because we can turn on the television and whatever comes on isn’t going to be an axe murdered shown on the news or a torrid sex scene from a movie rerun.    It’s not going to be a crocodile tearing the head off a gazelle or people shooting each other in a bloody firefight.    It’s safe.

It’s also the channel most likely to have a show on it my children would want to watch and let’s be serious here, most of the time we turned on the television in the last few years in our living room was to sit the small little members of our family in front of it so we could cook dinner or let the dryer repair man in and answer the questions about why it was broken again or help out a parent with a computer question that needed us to be downstairs.    That, or we just wanted a break as parents.

Regardless the reason, it’s been the power on station for so long I have no idea what channel was default before.   Recently, with my daughter’s inability to watch television because it’s not two inches from her face and my son’s interest in making his own selection on the iPad from PBS Kids, Sprout or Netflix Kids, we haven’t really been using the power on channel.   I tried it the other day.   I turned on the television and walked away.   Zero of our children even came in to see what was on.   Before they would have both dropped anything and sprinted to the living room because television was so high value to them.

I tried and I failed though.    I tried several different channels and then came back over the course of the holidays to turn on the television.   Every time the show was either not appropriate for children or made me question why I selected the network in the first place.    I couldn’t find a channel that worked for me.

So I gave up.   Disney Jr. isn’t a channel for me, but I suppose I’m just used to it by now.   Maybe I’ll try again next year…

The Big Boy Update:  My son worked on his thank you cards for both his birthday presents and Christmas presents while my husband and I took my daughter to Detroit earlier this week.   You may have one coming in the mail.   When it arrives, be forewarned and brace yourself—there may be zombies drawn on your thank you card.   My mother helped him know who each card was for.   She told me on the phone, “he’s been enjoying drawing zombies.”   Thank you zombies: coming to a mailbox near you.

The Tiny Girl Chronicles:  My daughter and I had one of those pronunciation discussions today.   I explained the word was ‘brek-fust’.   She said, “it’s not called that, it’s called ‘breaf-flest’.   I don’t know how she double pronounces the f’s, I can’t say it the way she manages to every time.

My Terrible Bread

I am a bread-making novice.   You’d think it would be easy these days to make bread and get it right, what with all I have at my disposal.   First, there’s the bread making machine my husband got a few years ago.   Second, there’s the bread machine recipe book that gives me exact instructions on how to make bread.    Third, there is the vast and comprehensive resource known as the World Wide Web where I should be able to learn all I need to know about making scrumptious loaves of bread.    And yet, I don’t seem to be getting it totally right yet.

I suppose I’ve been unjust in my title of this post because my breads aren’t really “terrible”—aside from that one loaf with the self-rising instead of the regular flour.   It’s just that I seem to find my loaves largely eaten mostly by me in our household.   I’ve had issues with yeast.   There was the out of date bread flour (or at least that’s what I’m guessing it was) and then there’s the matter of substitutions.   That part I can take full blame for.  Whole wheat flour instead of white flour?  Sure, let’s give it a try.   Don’t have that minor ingredient?  Not to worry, we’ll just leave it out; I read online it wasn’t really necessary.

But no more!  As of this evening I am in possession of the definitive book on making great bread.   Uncle Bob, knowing I was looking for bread-making guidance sent me an early birthday present.

Now as soon as I finish my last loaf (probably by myself) I’m making bread the whole family is going to love.  Thanks, Uncle Bob.

The Big Boy Update:  My parents took my son to his favorite sushi and Thai restaurant last night.   My mother asked him what he wanted to eat and he said, “what I usually get.”   This posed a problem because Mimi didn’t know what his usual order was.   When the waitress arrived my mother talked to her about the children’s options.   When the waitress said, “chicken teriyaki” my son cried out, “that’s it, that’s what my mom orders for me!”

The Tiny Girl Chronicles:   My daughter was tired tonight before bath and bed.   She and her brother were playing in the basement and we heard an altercation.   She cried out and then began to cry very loudly.   We listened and figured she was upset.   My son came up shortly and told us they had bumped and she was upset and that it was an accident that he bumped her.   I went downstairs to find her with a blanket over her head crying.   When I pulled the blanket off I saw blood on her face.   She had gotten a bloody lip and hadn’t come to find us.   We got her an ice pack and she decided she was ready to go back to playing with her brother about two minutes later.     She is pretty tough some days.

26:1

On our way to Detroit yesterday I phoned ahead to say I hadn’t gotten a call for my daughter’s OR time the next morning.  There was some confusion on the line and I got a call back a few minutes later saying that Dr. Trese wasn’t doing surgery tomorrow, he was in surgery today.  Not only that, my daughter wasn’t scheduled at all for either on Monday or Tuesday.  We were close to six hours into our drive, had coordinated child care and had planned an entire trip to find out we had no scheduled appointment for the following day or any day in the future for that matter.

I started crying on the phone to the very nice lady, Cat—which is unlike me, but I suddenly couldn’t handle the stress.   She said to hold on and she’d call me back shortly, she was going to get Dr. Trese between cases in the OR and find out what his plan was.  It was only a few minutes later when my phone rang with Cat saying she’d gotten lucky and caught him between cases.  He said an in-office appointment was fine and to come in at 9:00AM and he’d see us then.

To tell you I was mollified by this and was not upset would be a very large lie.  I was angry.  I was scared.  I’d been watching my daughter’s remaining vision in her left eye dwindle and had yet to see her use the right eye at all.  My husband and I were hoping to get detailed information from an EUA to take back to our doctors at Duke so we could coordinate the overall plan for her vision recovery.

Before we go any further, let me say I think things turned out fine today, but at the time it seemed like we were driving twenty-six hours for a one-hour office visit—an office visit I didn’t think would give us much information.

This morning we did see Dr. Trese and prior to that we saw one of his Fellows, Dr. Thomas, whom my daughter likes a lot.  Dr. Thomas came in to check her vision and talk with us.  He remembered my daughter’s “cool shoes” from last time.  Both Dr. Thomas and Dr. Trese were able to get a good look in her eyes.  We had an opportunity to talk at length with both doctors and they gave us a lot of information on what they can see currently and what we will hopefully see going forward.

We were concerned about how much time my daughter should be lying on her back with the heavy PFO in her right eye. What activities were not okay and what was fine for her to do? Also, did they have tips on keeping a four-year-old calm all the time?  (Good luck there, folks.)

The PFO does move around as she moves and that is a good thing overall, not completely bad.    As it moves over the back part of her eye where the retinal folds are, it is gently working on flattening things out. Taking periods of the day to lie down on her back will help but it’s not necessary to lie flat all day long. And yes, children do move around a lot and are highly active.  The danger of a leak of the Silicone Oil and PFO is low, but lower activity is better where possible.  Getting water into the eyes from a bath is fine, although avoid splashing battles.  No pool for a month post-surgery.

How long will the PFO remain in her eye?  Dr. Trese’s plan is to have it in place for at least three months.  My daughter has gracefully transitioned from a life of sleeping in a ball or on her stomach to sleeping on her back.  I continue to be in awe at her ability to willingly adapt in the face of all her personal challenges.   In relation to the PFO, there are differing opinions on how long it’s safe to remain in the eye.  The specific formulation Dr. Trese put into my daughter’s eye is one that he said is safe to remain for longer periods.

What about the pressure in her right eye?  Is it maintaining?  Has the Healon permeated out?  From a manual inspection (Dr. Trese pressed gently on her right eye) he believes the pressure is maintaining well.  It’s unknown how much of the Healon remains in her eye today as the Healon is clear and even under a microscope is difficult to distinguish.  It is likely still in place as the ciliary body didn’t appear to be functioning well prior to surgery.

Dr. Trese said everything he could see today looked encouraging.   He thinks some of the retinal folds may have flattened out even from when he saw her post-surgery two weeks ago.  He noticed her lens capsule has begun to opacify.  This is okay if it leaves the central part of her vision field clear but is something they will monitor going forward.

We asked about glasses and/or contacts.  He said they won’t be very useful right now while the retina in the right eye is healing.  The retinal detachment caused damage to the outer segments of her rods and cones.  They can regenerate over time, but at only two weeks post-surgery it’s early for her to be showing much visual improvement.  He said at this time it would be challenging to determine a prescription on her eye because they can’t a do retinoscopy or get refraction on the eye well.

We told him about the colored light tests we’d done in the dark. He said the ability to see, track and tell the color of a light is an excellent sign and we should keep working on the eye with bright lights to help the cells as they begin to function. He mentioned looking up Pleoptics which utilizes bright lights while protecting the fovea to stimulate visual pathways.  He said conclusions are unscientifically proven but it might be something we could try.

We discussed her left eye and how we believe the vision is diminishing in it. As a few observational examples, she has begun to be more careful in navigating unfamiliar spaces. She also isn’t able to discern large things around her, such as trucks (or no trucks) beside the car. She loves the pool at our hotel and noticed it immediately every time we walked by it on our last two visits. This time she didn’t notice it the first or even second time we walked by. We had her play the game, “where is dad?” (who was standing ten feet away) and even then, didn’t notice the pool. When we asked her if she saw the pool she looked around and saw the windows and then had to peer in to confirm it was the pool.

Dr. Trese said to monitor her visual ability in the left eye and when he does the EUA on February 1st depending on how things look he will potentially inject Healon behind the lens in the hopes of increasing the pressure. He doesn’t want to do anything terribly invasive until he has a handle on how the right eye is doing.  The injection of Healon may help reduce the retinal folds given that they may be compounded by her low ocular pressure. He said retinal folds from hypotny usually include the choroid but in her case, her choroid wasn’t expanded and didn’t show thickening when they did an ultrasound.  If so, the addition of Healon might help stop the deterioration in her left eye.

So for now we wait for another month and hope the right eye begins to show improvement and the left eye remains stable.  We’re back in the car, another six hours into our drive but this time e’re heading home.  It’s a been a long trip for an hour office visit but I am so grateful for the care my daughter is receiving.  

The Big Boy Update:  My parents are watching my son while we’re away.   This morning he got up and told my mother, “my penis is sticking straight out.”  My mother without even bothering to look down said, “I think that’s a sign you need to go to the potty.”  He turned on his heel and headed off to go find out.

The Tiny Girl Chronicles:  My daughter has been enjoying listening to music with her new headphones from Christmas.   She was asking us about the songs as they came on and getting excited as some of her favorites came around.   Suddenly she said, “this has wack-a-mill-a-cull on it!’   I had to look at which song it was.   It was “Uma Thurman” by Fallout Boy.   There is a line in the chorus that repeats “work a miracle”.   It was apparently the song’s name to her.

I Wish You Were Dead (Number 24)

There is no update on my daughter’s vision as of right now.   She’s in the car seat, reclined totally back, yelling at us because she doesn’t understand how headphones work yet.   She’s asking us about each of the songs playing on the iPad.    Between answering questions about the music selection I added to the playlist I’m going to try and get a blog post written.

I’m in the way back time machine for this post, going all the way back to my sophomore year in high school.   I was taking chemistry from a teacher who was very old.   He was a kindly man, I now can envision, but as a high school student I just thought he was old and strange and fairly out of it.    I don’t think any of us we trying to be mean (well my friends weren’t) but he was not well-liked. 

He had some peculiarities that I think I realized later were accommodations based on his age and memory.   He had us sit in seats in alphabetical order by last name.   When he would take roll for each class he would call out numbers.   I. for example, was number twenty-four.   My last name started with ‘SP’ and was close to the end of the roster and therefore in the back of the classroom. 

When he called out roll he would say the numbers out loudly, hardly looking up from his roster book and if you didn’t answer, “here” or “present” or “yes” he’d call out the number again.   A lack of response twice meant you were marked absent.    

I don’t remember much about the lessons, but I could tell he was passionate about chemistry.    At the end of the class he would say, “next time…” and explain the homework or thing we should expect the following class.   He had gotten caught by the students several times saying, “tomorrow” when it was Friday.   Using the phrase, “next time” got around that challenge.  

He wasn’t in good health, but I didn’t know it at the time.   One day after class he dropped his pill container.   A lot of pills spilled on the floor and I helped him pick them up.   There were a lot of little white pills so thin I thought they were hole punch holes, but they were nitroglycerine pills for his heart I believe.  

One day after possibly an arduous assignment for homework I remember running into my best friend in the hall.   Our teacher was standoffish and could be sometimes grumpy and that day wasn’t a good day I suppose.   My friend said, “I wish he were dead.”   Now she’s not the kind to say that or feel that way, but youth makes us brash.  

The next day (or “next time” as he would have called it) we found out he had had a heart attack and died.    We felt awful.  

I think of him from time to time though because it was from that class that I decided twenty-four was my favorite number.   Not a “lucky number,” a subject on which I won’t share my thoughts about in this post, but the number I liked more than all other numbers.   Mathematically, there are a lot of neat things about twenty-four, some I had no idea about until I went to read about it just now. 

Sometimes I think about my high school chemistry teacher.   I can remember being number twenty-four in his class, I just can’t remember his name.  

The Big Boy Update:  My son was doing some sort of grabbing motion with his hand towards me the other day.   He said, “I’m doing the neck thing.”   I asked him what thing he was talking about.   He said, “the Darth Vader thing!”

The Tiny Girl Chronicles:   As we’re driving to Detroit today my daughter suddenly said, “are we in a tunnel?”  Yes, we were in fact in a tunnel.   Shortly afterwards she asked, “are we out of the tunnel?”  And yes, we had just left.   I wanted to see if she’d tell me it sounded different so I asked her, “how did you know?”   She replied.  “I know everything.   I just know everything.”