Girls Day / Boys Day

We split up today into groups of girls and boys.   This was mostly due to the fact that my husband, father-in-law and son wanted to go to Lego Land.  (Guess what, Mom. there’s there’s one in Florida after all.)  

My daughter isn’t interested in Legos nearly as much as my son and she has the whole visual impairment thing going on so my mother-in-law and I kept her back with us and planned a “girls day” just for her.  

She stayed at home and helped my mother-in-law feed the squirrels, birds and other animals in their back yard.   She helped to water the plants and refill the peanut container.     Mid-morning we went to one of the local outdoor malls and she rode on the carousel and then the small train that goes through the center area of the mall.

Then she went into the indoor playground area that’s about everything that’s fun for a four-year-old.   My mother-in-law watched her and I did some shopping.   After she had had enough we went to Cheesecake factory and she ate a mound of bread and butter and pasta.     Then, we went to Candy Land.

Candy Land is a store named, “Sugar” that is basically a candy land.   She picked out candy for both her and her brother and then we went home to spend the rest of the afternoon in the pool.   She is now resting on the hammock after over two hours of special pool time and attention from Nana.

I think she had a special day.   I hope she did.   She’s a tough one when it comes to special, what with all the challenges she has in her life right now.   Fortunately, she is also the easiest to please.   She is truly a sweet little girl.

The Big Boy Update:  My son was at Lego Land today.   He was shy about exchanging Lego characters (something you can do with the staff at the park).   Before he left he got into the into the swing of the swaps and traded for some good characters.   He’s tired out from a long day and is glad to be in the car.

The Tiny Girl Chronicles:  We had a girls day today and went to one of our favorite malls for some activities and lunch.   As we walked by one of the fountains my daughter stopped and looked at the water.    We asked her if she could see the water to which she said, “that’s not water…that’s token water!”   She could see the coins in the bottom of the twelve inches of water.    We gave her some more coins to add to the collection.

Science Museum

We went to a local science museum today with some friends of ours who are staying in the area.   They have three children, the youngest of which is three years older than my son.   We knew it would be a fun day, but how fun would it be for my daughter was our big question?

It was a hand-on museum, but most of what you interact with still needs to be seen to understood.   Also, she’s only four-years-old.  We started out approaching the dinosaur exhibit.   My daughter wanted to enter at the railing and black screen area instead of the entrance, which she couldn’t see up ahead.   She could hear the exhibit though, which was precisely through that black curtain area she was standing in front of.   Score one for the ears.

She was able to see the large dinosaurs and got a sense that there was movement, but because she couldn’t see as well as hear, the motors and recorded noises weren’t fun to her and she wanted to move on.    There was an area to do crayon rubbings of dinosaur parts that she tried out and had fun working on, but since she couldn’t discern what she’d rubbed out with the crayons because it wasn’t high-contrast, she lost interest fairly quickly.

My husband spent some time with her in the sea life area where there were large sea animals in multiple aquariums, but again, that’s all visual-based and she wan’t that interested.   He brought her over and told me she kept saying she wanted “to do something”.   I told him I’d have a go with her.

We found the largest light bright board I’d ever seen and because it was colors on black, she had a very good time working on that.    I thought the water area would be interesting as it was about making paths for water by inserting plastic sheets in areas to stop or add water flow.   Unfortunately, she couldn’t see the small insertion points for the parts and couldn’t interact or see the water flow because it was clear.

We found a balance table on which she and a friend placed wooden blocks for a while that she enjoyed.   She stood up and went over to a teenage boy and grabbed his hand, not knowing it wasn’t me.   I gave him the “just a sec” look and rescued her.   He never said a word and I don’t think she knew.

She had an okay day, but ultimately, it wasn’t a “good” vision day for her.   Some days are just like that.    This afternoon at the pool with our friends she had a much better time.

The Big Boy Update: My niece asked my son, “do you want to go to prom with Madison?”   He replied, “no, but I want to go to Tae Kwon Do and have her come with me…oh, okay. I’ll go to prom with her.”

The Tiny Girl Chronicles:  My daughter had an okay time at the science museum today.   One of the things she liked the best was the plastic pin wall.   It’s a large surface of adjacent plastic pins.   You can press your hand or face into the pins and they push out towards the other side.   On the other side were other children pushing the pins back.   She spent a lot of time pushing and watching.

When I Was…

The Big Boy Tiny Girl Age Comparison Conversations:
My children have an understanding of numbers in certain ways.    Tonight on the way home from dinner my daughter had a long conversation where she explained to her cousin, Nicole, the following:

When I was one-years-old, Greyson was two-years-old.  When I was two-years-old, Greyson was three-years old.   When I was three-years-old, Greyson was four-years-old. When I was five-years-old, wait, did I miss one?    <starts over>

My son waited very patiently until his sister was done and then asked if he could tell Coco a story now.    Here was his story:

When I was zero-years-old, Reese wasn’t even born yet.  When I was one-years-old, Reese was zero-years old.   When I was two-years-old, Reese was one-years-old. When I was three-years-old, Reese was two-years-old,

He went on for some time, going into the future.   What was interesting was when they got into future ages such as seven and eight, they would change to future tense instead of past tense.

If I Were Eighteen

We had a great day today; we spent time in the hot tub as well as the cool pool in Florida at my in-laws;    Our friends from North Carolina were visiting and we had a delightful day spending time with their children and their family.   Suffice it to say it was a great day with both friends and family.

Tonight I have to say I have an issue with my nephew.   He was playing great music—he always plays great music.   He’s one of those people who can pull a playlist out of nowhere that perfectly matches with the mood of the evening.   Tonight he was doing just that—only he was skipping to the next song before the current song was over.   

I finally told him I would be all over him (as in girlfriend) if I was only eighteen years old.   I didn’t think much about it until later when he told me he’d heard back from his girlfriend, Madison, who had said I’d have to fight it out over him if I was serious,  

Since my son has serious intentions on Madison, I didn’t want to mess anything up and did some immediate concessions on my part.    

The Big Boy Update: “Last one in is a rotten Nina”

The Tiny Girl Chronicles: My daughter can own a shadow.   She knows what is shadow and what’s people.   She has made good friends with shadows lately.  

Don’t Look Down

My daughter has done a more than commendable job in not looking down since December 19th.   At that point a heavy substance was added into the back of her eye which would, in hope, massage the retina down and help it reattach.   As she lay back, the fluid would roll back onto the retinal folds and help them lie flat.    The only trick was keeping the substance in the posterior portion of her eye.

I think I must have said, “don’t look down” or “look up” or “you have to lie on your back” or other related comments a hundred times since December 19th.   My has almost always been understanding and has compiled every time, even if she didn’t want to.

For the first two-and-a-half months we were a little over-worried about it.   We learned later that there was a low chance of migration as there was only a small hole in the top back of her lens capsule.   The doctor said good work on the laying flat and positional restraint my daughter had shown.   He then opened up the majority of the back of her lens capsule and added a new, large hole in the front half of the capsule.   Now, there was a full path the heavy substance could migrate from the back to the front—and we really don’t wan that.

But there was some tempering comments from her surgeon, firstly about some perimeter cellular growth around the lens capsule of lens cells that is complicated and I don’t fully understand but it boils down to a ridge that helps as a barrier.    The second thing he said was the heavy fluid moves slowly, so it’s not going to rush around immediately.   Also, he said the amount was very small and there weren’t problems short-term if it did migrate out.  

So more time with positional restrictions.   More things my daughter has to do and not do that other children don’t have to do.    I had told her Dr. Trese was probably going to take the heavy substance out of her eye (he had said as much) and then she could do as many flips and headstands as she wanted.    It turned out he didn’t.

One of the saddest points recently with my daughter’s eyes was on the ride home from her surgery, she is sick from some virus that incidentally hit at the same time, vomiting in the car.   We hadn’t told her yet he didn’t remove the PFO and that it would be at least two more months until he did.    She quietly asked at one point, “mom, can I look down now?”   I tried not to cry as I told her not yet.   She took it very well.

Tonight, weeks later, we’re walking in Florida in the evening weather.   My daughter’s holding two of our hands and is jumping up between the two adults doing that walk/gliding thing children love to do.   My niece asked if she wanted to flip over (something she can easily do) and I was touched to hear my daughter say she couldn’t because of her eye surgery.    I swooped in and told her if she flipped fast, it would be okay and did she want to try?   She said she did and we had fun doing flips for the remainder of the walk.

The Big Boy Update:   My son was wanting some candy or other high-value food this morning.   When asked if he wanted to finish his muffin he replied, “no, I don’t prefer it.”    How polite.

The Tiny Girl Chronicles:  Just before bed my husband and I were talking.   My daughter came in and asked if she could have her iPad, to which we said yes.   She then told us, “I’m going to play on my iPad in my bed…so I don’t interrupt you…since you’re talking.”

Fitness Update:   I walked five miles today, four in flip flops, around the neighborhood here at my in-law’s house.   The calories I burned in no way were enough to offset the amount of chocolate, food and dessert I ate for Easter Sunday however.

Girlfriend

The Big Boy Girlfriend Update:  
I knew it was going to happen someday, I just wasn’t prepared for it to be so soon, when my son was so young.  He has a girlfriend.   I suppose I’d better back up and explain how it all began…

Three hours ago we were happily enjoying time in my in-law’s backyard pool.   My brother- and sister-in-law were here with their high school aged niece and nephew.   Partway through the afternoon we were joined by my nephew’s girlfriend, Madison.   She introduced herself and then got right into the pool to balance out our water volleyball game.   We had a good time swimming, sliding down the inflatable slide and eating snow cones from my mother-in-law’s new machine.   Everything was going well.

It was at that point that I went inside to clean up and help my daughter.    A short while later I came back to find everyone inside and my son, bursting to tell me something.   Madison, he told me, was his girlfriend.   He was basically claiming her by standing and sitting on her.   There was a lot of laughing from the teenagers and for some inexplicable reason my eighteen-year-old nephew wasn’t threatened at all by this new potential suitor.

My son spent the rest of the afternoon over with the teenagers, being very friendly, sometimes too friendly.   He was sitting by Madison at one point and poked her breast asking, “why is that there?”     I don’t think he got an answer because we all were laughing so much at the question.  Madison was very gracious and resigned herself to having two boyfriends for the day.

The Tiny Girl Chronicles:   My daughter is clearly visually impaired, but sometimes it’s hard to tell what she can and can’t see.   Just now I put a bandage on her finger and she couldn’t see the high-contrast smiley face on the bandage.   But yesterday at the airport she was able to see something I didn’t expect.   I was doing the parental, “hurry up, walk quickly, follow me, we have to go” type of comments as my daughter was trailing behind me by about ten feet.    She said, “I’m coming, don’t look at me!” likely in response to my constant looking back to see if she was still moving along.    Then it got interesting because every time I’d turn my body around as I walked to check on her she’d crankily yell out, “don’t look!”   She saw me turn around every time.   So I tried by just turning my head and she could tell that as well.    So she’s seeing something.

I’m Feeling Shy

Several of us, including my daughter’s teachers have noticed a particular, “shy” behavior she exhibits at times.   It seems to present itself when she realizes there is something she can’t tell/doesn’t know that she would be able to know if her vision wasn’t impaired.   She finds herself in a situation where she has to ask for help from someone who can see normally.   And asking for help is hard.

Especially when you’re an independent young lady who doesn’t want mommy or daddy to do anything to help in any way.   But my daughter does and will need help.    Today, we arrived at my in-law’s house.   After saying our hello’s the children went off to play with the toys.   My son found some Legos immediately and was busy.   My daughter found some stuffed animals.  

A short while later my daughter was upset—she was complaining to me that there weren’t any toys and all she could find were the stuffed animals.   I told her Nana had lots of toys for her and did she want to go ask Nana to help her find them?    I had explained there were toys she hadn’t seen.   It was at this point that the shyness comes in.   My daughter came very close to me and whispered, “I’m feeling a little shy, could you ask Nana where the other toys are?”   She realized she couldn’t see the toys in the room and this lack of ability and need for help translated into her feeling shy.

We walked into the kitchen, found Nana and I asked about the toys.   Nana came right over to my daughter and they got some puzzles for her to do and my daughter was back to being happy once again.

The Big Boy Update:  On the way to school today my son said, “when I grow up I’m going to do everything in the world.”

The Tiny Girl Chronicles:  My daughter said after hearing what her brother wanted to do in his life, “when I grow up I’m going to be the tooth fairy.”

Luminaries

We had a donor recognition event at our school tonight.   My responsibility was luminaries around the Outdoor Learning Environment (the large play area) in the center courtyard of the school.   I’ve done luminaries recently with our neighborhood event so it was an easy thing to sign up for.

The thing that was going to be hard about the event was getting two hundred bags stuffed with sand.   Then, one of my friends and fellow trustees suggested I ask for the help of the after school children.   Her suggestion turned something that would have been hours of work into twenty minutes.

This afternoon I had eight eager helpers steadily filling bags and adding candles into them.   Then, they’d pack them onto a wagon and I’d tote them off to the courtyard.   They made fast work of the entire job—and they were excited about doing it.

Children are amazing things.

The Big Boy Update:  I was running late this morning and running about the house with some sort of frenetic haste, trying to get everything ready to leave.   My son asked me, “momma, why are you walking in your angry mode?”   My husband replied, “mom isn’t angry, she’s just in a hurry.”

The Tiny Girl Chronicles:   My daughter is a “Morning Monster” my husband has decided.  She’s been having trouble with mornings for a while.   My son had this phase too, but he’s mostly over it now.

Survival Mode

I have a friend who’s said to me on more than one occasion that she feels like she’s in “survival mode” all the time.   Yes, our lives are busy, but we should each have a bit of time to ourselves, or with our spouses to reset or just catch our breaths.    To hear that someone feels like that never happens in their life makes me sad.

I have a happy life with a happy husband and two happy children.   We have an old dog who is sometimes cranky, but she mostly is like that when small hands move rapidly towards her and scare her.    We have a caring and loyal extended family and our friends are second to none.    And, we have time.  

I don’t feel like I’m in survival mode.   Some weeks I feel like there isn’t a break coming for days, what with the way I tend to pack my schedule, but I can see to a point where I’ve got a day in the near future to catch my breath.    I don’t know what it would be like to feel like the work and coordination of our lives as a family was never ending from waking to sleeping day in, day out.

Hopefully my friend will find some relief in the near future.   That phrase “burning the candle at both ends” has always given me a vivid mental image.   It must be hard to live like that.  

The Big Boy Update:  My daughter is going through a serious whining phase.   It’s on and off, but when it’s on it’s on ferociously.   The other day my son said in a calm voice as he headed to the refrigerator, “I’m tired of all this whining”

The Tiny Girl Chronicles:   My daughter had a biopsy today on those pesky bottom bumps.   There was a pre-numbing cream that sat on her dermis for an hour and then she was enthralled with the needle that numbed her.   We had to hold her down to keep her still for the punch biopsy.    She complained loudly, but in the end the only thing that she was upset about afterwards was that one of the assistants was pushing on her tummy.   Tonight she doesn’t even care about the incision other than it itched and when would the stitches come out?

Looking Left

I’ve had neck problems since as far back as I can remember.  I favor certain positions and have issues with posture and alignment based on the original injury I sustained when I was a child to my spine.   I don’t realize sometimes that I do certain things to compensate until I do some inner reflection.

For instance, my left shoulder is about an inch-and-a-half higher than my right shoulder.   I put my purse on my left side because it holds on more easily than my right side.   I cross my legs one way by preference and I lean more easily to the left because it’s more comfortable on my back.

I also prefer to look left over right.   I remember being in junior high school and swinging on the hammock in our back yard.   I would look around the neighborhood for my friends to see if they were coming out on their bicycles to play.   To keep a lookout, I’d always look left and around.  

Tonight I brought my computer up to write this blog post.  My monitor is in the center of my desk and my chair is aligned at the middle of the screen.   It’s one of those wide screen monitors and I saw the browser window was positioned on the right side of the screen.   As I moved the window off to the left, I realized I like looking left even when I’m at the computer.  

Our bodies make unreversable changes as we grow older.    I suppose I’ll always prefer to look left.

The Big Boy Update:  While helping clean out our school’s adopted stream section this weekend my tired son mused, “I want to go home and rethink my life.”

The Tiny Girl Chronicles:  It only takes three days to make a bad habit.   When my daughter was sick recently we let her have a stool at the head of her bed with a water bottle on it.   She would drink water during the night and as a result there was a very wet diaper in the morning.    (She was in underpants until a while back when the eye issues caused a setback and we haven’t been pushing nighttime underwear as a result.)    Tonight I told her she couldn’t have the water bottle because she was well.    A fit ensued.    I was firm.   A tantrum almost happened.   I told her she wouldn’t have the water bottle, regardless of how unhappy she was about it.    I’m wondering how many days it’s going to take to break the water bottle habit.   I told her she wouldn’t be able to wear underpants to bed as long as she drank water at night.   I think that was the deciding factor.   She calmed down and went to sleep after thinking about that.

This Isn’t a Museum Showpiece

You know what it’s like when you get something new and are excited about the newness, the perfectness, the cleanness and unblemished state that new thing is in?    You don’t want anything to happen to it to make it “not new” for instance like getting a scratch on your new watch.  I go through this with every new cell phone I’ve ever had.    I’ve also dealt with it with cars.  And we just got a new car…

…a new car we got that’s our family (read children) vehicle.   Children are notorious for making new things not new in no time.    The last family vehicle we purchased was before my son could walk.   Now we have a four-year-old and a five-year-old who are exceptionally mobile and disastrously messy.   So what do we do?    Well, we’ve mitigated it some by saying we’re not eating in the new car.   This was a decision we should have made some time ago (at least for short trips) because children only get about eighty-percent of their food in their mouths.   What doesn’t fall in the seats, on the floors and into cracks you can’t easily clean stick on their hands which then they smear everywhere while they’re busily being children.

So my mantra I try to keep in mind when the little tykes get into the car is, “this isn’t a museum showpiece” because our new car won’t be new forever.  In fact, with two young children in the family, it’s already fast tracked to being “well-used” in short order.

The Big Boy Update:  My son and daughter were having racing games around the house this evening before bed.   After my daughter had gone off to get her pajamas on my son kept the race going, one time dashing by me and saying to no one visible, “hello, Pahmer, you lose.”   Pahmer hasn’t been around for a while, I’m glad he’s still with us though.

The Tiny Girl Chronicles:  My daughter yelled and screamed at me in the car today.   She’s been doing this a lot lately, using a louder and louder voice when she wants something or doesn’t get what she wants.   I ignored her and her yelling in the car today (I gave her fair warning I didn’t respond to yelling and demands) until she calmed down.    I don’t think it will be the last time I’ll have to do this.

Fitness Update:  I had a second swimming lesson today.  My coach gave me some additional pointers on my freestyle stroke which is going to be helpful.   He also gave me some good advice about using breast stroke as a way to navigate while swimming in open water as it’s hard to look up and around while doing freestyle.  If I can get some level of proficiency swimming with the suggestions he’s given me I think I just might do okay in the swimming portion of the triathlon I’m signed up for in May.

St. Patrick’s When?

I look forward to some holidays a great deal.   Other holidays aren’t as much of an interest to me.   For instance, my entire family looks forward to Halloween.   My son talks about costumes and my daughter lets us know her plans for candy collection.   I spend lots of time coming up with an adult drink to hand out in some spooky, creepy or icky way and my husband works on decorations.   Halloween has a mental span of weeks in our family.

Valentine’s day, not so much.   It’s too commercialized and hyped and since I love my husband all of the days of the year, being told there’s one day that’s more important than the others just doesn’t work for me.

Then there’s St. Patrick’s day.   Folks, I am telling you right now I have nothing against the holiday.   I just forget about it.   I know there’s some day coming up in March we’re suppose to wear green.   As adults going out and having green beer with friends is also highly rated.    But this entire holiday is one I keep missing.  

When I was in high school and maybe earlier than that I have memories of coming to school, having no idea it was St. Patrick’s day and wearing not even a hint of green.    I wasn’t particularly bothered by it because my friends weren’t the type to do malicious pinching, but I did on more than one year miss the memo and didn’t realize it was St. Patrick’s day.

As an adult this is still happening to me.   The commercials, internet ad sidebars and general conversation around me let me know St. Patrick’s day is coming up—“I think it might even be this week,” I’d think but I wouldn’t bother to look into it and ultimately I’d miss the day again.

This year was no exception.   I got the kids up and off to school.   I ran errands.   I got work done at the house.   I made phone calls.   I picked the children up, we ate dinner and then got them to bed.   As I sat down at my computer later to read emails I got one from a friend who ended the note with, “and Happy St. Patrick’s day to you.”    That’s when I realized I’d missed St. Patrick’s Day again.

The Big Boy Update:   Today for no particular reason my son said to me, “my true potential is exploding things.”

The Tiny Girl Chronicles:  My daughter’s hair grows exceptional slowly.   My husband put up a picture from our trip to the beach in August of last year.   Her hair hasn’t been cut since then and in seven months it’s grown probably only two inches.    I am still figuratively kicking myself for cutting bangs after her vision problem.   I have been waiting and waiting for the bangs to grow long enough to get them back into a pony tail.   I’ve been doing a small side pull for months the looks a little silly but keeps the hair out of her face.    Yesterday I was able to get her hair into pigtails and most of the now-long bangs stayed in.    Today she has pigtails again, which don’t interfere with her lying on her back.   They look great on her.  

Singing Lesson

I really like to sing.   The amount I like to sing may only be matched by the amount people wish I’d stop singing when I’m around them.   But since people are too polite to tell me to please stop singing I keep at it.   I mostly sing in the car or when a song is on that I like.   I like to sing along to songs and have the volume up because I can’t really tell if I’m missing the notes or sound terrible.

Something I’ve wanted to do for years and years is take singing lessons.   I looked into it once and couldn’t find anything or anyone that fit what I was looking for.   There were a lot of voice teachers but a surprisingly large amount of their web sites indicated they didn’t do casual singing lessons, only serious, committed, “I want to make a career out of this,” kind of people.   I put it on my “someday” list and planned to investigate further at a later date.

My daughter has a music therapist that my daughter enjoys and we like because there are multiple benefits we see from having her own activity that isn’t impeded by her vision impairment as well as helping her learn skills and get out some of her feelings through music.   After one lesson I asked her teacher if she knew of anyone who taught singing lessons for adults that I’d like to find someone.   She told me it wasn’t her specialty but she might know some people who could help.   I explained I wanted to be able to just sing and hold a tune, nothing fancy, I just wanted to learn how to improve my casual, untrained singing skills.   She said, “oh, you mean ‘functional singing’, that I can help you with.”

I didn’t know the term but it was self-explanatory and it was exactly what I was looking for.    We made a plan to have a lesson for me after my daughter’s lesson a few weeks later and today was that lesson.

I won’t go over all the specifics but I can tell you I had a fun time and I learned a lot.   We started with a simple song and I tried my best to sing and she said shortly afterwards, “you sound like you’re a little scared of me.”   I laughed because I was trying very hard, but I agreed it did sound strained and forced.  

From there we practiced some drills and then she taught me a few basic things that completely changed everything in my singing.   It turned what I’d been doing upside down and made me rethink how I was moving air through my lungs and where the sounds were coming from when they came out of my mouth.   I loved every minute of the lesson.

So much great information—I have a lot of practice before my next lesson.  

The Big Boy Update:  Did I mention my son figured out how to purchase a song on Amazon by talking to Alexa?   It was a song I wanted to buy.   I’d never bought a song from Alexa and I didn’t know how to do it.   I tried a couple of phrases but they didn’t work.   Then I went upstairs to get something and when I came back down the full version of the song was playing.   I asked my son (the only one in the room) if he bought the song.   He told me he did.   I asked him to tell me what he said and how it happened and he just told me he bought it.    They play “Raining Tacos” all the time, so I’m going to write it up as a reasonable use of a dollar.    If only I knew how he did it…

The Tiny Girl Chronicles:  I was eating something in the living room while watching a television show earlier today.   My children know they are only allowed to have food in the kitchen and dining room.   My daughter came by and said, “why are only grownups allowed to eat in here?”   I told her because grownups don’t make as much of a mess as children.   She said, “oh” and walked off.

Females

My husband and I went to vote at the primary on Tuesday.   I’ve said many times now that in our family my husband represents ninety percent of the political opinions and political knowledge in our family.   But the more I think about it I think that number may be low.   At any rate, we happened to arrive at the polling location at the same time and got in line together to get our ballots.

I followed my husband over and stood in the stall next to him.   Some of the candidates I knew about and knew which way I was going to vote, but some of the offices I didn’t know any of the candidates.   I didn’t want to vote simply based on which name I recognized more because that seems like voting based on sineage and commercial prominence and doesn’t strike me as a good way to pick a candidate.

Baring meaningful information I turned to my husband and asked him who he was voting for for some of the offices.   He told me he also didn’t know much about some of the positions.   He said, “I’m going female.  They’re more reasonable usually.”    I laughed and told him he was never, ever going to live that statement down.

The Big Boy Update:  My son was interested in who had “driving licenses” today.   He was asking about some of his friends who were six-years-old.   I told him you had to be a good bit older before you got a drivers license but that very soon his cousin, Olivia, would be getting hers to which he said, “yes, then Olivia can drive us to tennis.”   Folks, we don’t play tennis.  None of us do.

The Tiny Girl Chronicles:  Today we saw my daughter’s pediatric ophthalmologist.  It was challenging to get much information from a light-sensitive, not overly cooperative child, but she and her partner were able to tell a few things.   First, my daughter can see a little more form vision from her left eye than I thought she could.   She was able to identify shapes from three feet away (very large shapes).   This is better than what she could see five months ago.    Dr. Grace also tried to get some sort of idea what kind of prescription she might have for her surgical, right eye.   She and her partner said from what they can tell (mind you, it wasn’t detailed) it looked like the silicon oil in the eye was mitigating lack of lens somewhat and there was a decent chance she would be able to see far distances without any correction.   Her suggestion was to leave things as they are for now and let the eye continue to heal hopefully regenerate rod and cone cells and keep monitoring the situation.

Re-Fevered

My daughter’s fever is back.   She is completely fine aside from a fever.   It’s one of those things that’s “going around” or I think I’d be worried.   I’d be worried if her eye looked bad but it looks fine as well and she has no specific pain or sensitivity in the eye, so all is well.

Today we stayed home and she spent a lot of time on the bed lying on her back with her iPad over her face at two inches away from her eye.   This is a good position for the substances in her eyes and it gives her a chance to rest her other senses as well.    

She is completely happy one hour after Advil is administered and acts like an otherwise healthy child.   Then, as the medication wears off she grows cranky and irrational.   But she’s doing well and she’s not complaining about being at home.

Tomorrow she’ll be home again due to the fever today.   I had a nice time spending time with just her today on the deck when she was feeling better.

The Big Boy Update:  I asked my son what he wanted me to say for him today and he said, “Roger Roger.”   I asked him where it was from and he said, “Star Wars” (Episode I).   I asked who said it and he told me, “Battle Droids.”   He saw the movie a while back, but he’s got a great memory for details.

The Tiny Girl Chronicles:  My daughter told me today she thought our dog was old.   Then she said, “mom, are we going to get a new dog soon?”  I told her no.   She said, “aww, but I want a new dog.”   First child request for a new puppy…I predict it won’t be the last.

Fitness Update:  I went swimming today to train for the olympic triathlon I’m doing in Pinehurst later this spring.   My running partner’s husband and I are doing the race together.   I swam 1500 meters today and practiced the stroke form and flip turn suggestions the coach gave me when I met with him last week.   I got fairly good at the stroke but I have a lot of work to do to get the flip turn working without being terribly awkward.

Autopilot

This morning my parents and I went to a junk/scrap place about thirty minutes drive away.   We took the new car and I had a chance to use the autopilot feature I’d been hearing about.    The feature isn’t new with the Model X, it’s been around on the Model S cars for some time but it wasn’t an option when we got our Model S.  

It sounds really amazing and technologically it is, but what it’s doing for you is fairly straightforward.    It holds the car on the road, in the lane, at the speed limit (or five over) and brakes when there are cars in front of you.    Sounds simple, but think about all the information you process as a human to make that happen:

First, you need to know the speed limit and follow it, including any changes in speed limit.    We can read speed limit signs, how does the car know?  It knows from road mapping data but it also reads road signs and adjusts speed limits based on actual road information versus recorded data.

Second, a human needs to see the lane markers, regardless of road conditions and then keep the car within those lane markers.   We do this without thinking the entire time we’re driving.    I think of all the things the car does with autopilot, this is the most intriguing.   I’ve had adaptive cruise control before.   It could maintain a specific requested speed and would brake when a car slowed down in front of it.   That car also had a lane deviation feature which would vibrate the steering wheel when I got on or near the lane marker lines.   What the car couldn’t do for me was follow the road and steer, braking and speeding up as appropriate.  

Third, a human has to react to unexpected changes in “predictable traffic” such as someone walking across the crosswalk when your light is green.    As a human we maintain constant vigilance of our surroundings expanded into the dimensions of our large metal box known as a car.    For a car to be able to autopilot, it has to do that same role and do it successfully in any situation.

What I’d heard about the autopilot feature was it made driving relaxing and more enjoyable.   I’d been in the car not more than twenty minutes with my parents this morning and I’d gained enough level of trust in the autopilot to stop tensely hovering over the steering wheel with both hands.   I began to gesticulate, I used two hands to open my coffee bottle.   It was fairly transformative to go from theory to practice and then complete comfort in less than half-an-hour.

There are limitations to autopilot.  First, you have to be there.   You can’t go into the back seat and have a nap.   Second, you must interact with the steering wheel every so often to indicate you’re not napping in the front seat.  And third, and most important, autopilot is only available on roads where the car has enough information to drive safely.   It won’t work on neighborhood streets or unmarked roads and it won’t turn-by-turn navigate you to your destination.  

And that’s okay.   Totally okay.  

The Big Boy Update:  My son must have been hungry after school.  In the car he asked me if he could have a snack when he got home.   I told him he could pick something for snack.   Then he asked me,  “when I finish my snack can I have another snack?”

The Tiny Girl Chronicles:  My father asked me today if I really thought my daughter’s sense of smell was more pronounced.   I told him it was hard to tell but that she definitely was more interested in smells than her brother.   Just now as I’m writing this she came downstairs and told me she was cold. I got a blanket and put it over her.   She then told me several things about the blanket.   First she said, “this smells like blanket and cucumber.”  I asked her if she thought we needed to wash the blanket and did she think it was dirty?   She then said, “actually, it smells like chicken nuggets and blanket.”   We never decided if the blanket needed to be washed because dad called us up for dinner.

The X Factor

My husband and I decided a long time ago we wanted to go all electric from a car perspective.   Today we took another step in that direction.   We made a reservation to place an order for a Tesla Model X back in 2014.   The release of the model X has been slow and deliberate but it’s been moving forward at a pace commensurate with the technology Tesla Motors decided to put into the car.  

We went to the sales center today to pick up our “storm trooper” white paint with white seats car and found this:

There was paperwork and questions from us and a few things that needed to be looked into but otherwise, this amazing SUV-ish vehicle was ours to take home.     We’ve been enthralled ever since. There are a few “hiccups” as my husband called them but we’re not upset since our car was early on in the production run.   The service center is working to resolve them in the next two days. 

The children are thrilled to be riding in “The Flying Car” so named because of the falcon wing doors that open upwards instead of sideways.    We’re excited about so many features and I’d love to tell you more but I need to finish this blog so I can go mess with our new car.   More tomorrow…

The Big Boy Update:  My children asked us to go fast on the way home from school when we picked them up in “the flying car” for the first time.   The car isn’t really that much faster than our other Tesla, but my son immediately declared, “the Model X is faster than the awesome car.”   Technically, he’s correct.  

The Tiny Girl Chronicles:  We took my daughter back to Tae Kwon Do last week to see if she was able to participate.   She was nervous but did okay.   I think she’s a bit away from being able to meaningfully participate.   Once she has some lenses in her glasses it may be a different story. 

You’re Making Me Stinky!

One if the interesting things about having a child who has had a sudden decline in vision is how other senses take a larger role in her perception of the world.    She complains about sound, smells, feelings of things and tastes of things when it suits her—and since she’s a four-year-old, it suits her a lot.

Now there’s a lot to be said about that four-year-old component, don’t get me wrong and don’t overthink this, because trust me, we’ve spent a lot of time doing just that.    It’s so easy to blame the vision impairment for everything.  She’s cranky?  It must be because she’s having a hard time seeing. She’s angry?  It’s probably because of the stress of all the drops and the doctors.   But that’s not entirely true.    We know this because of one simple fact: she has a brother. 

Her brother, eleven months her elder, had some of the same behaviors and reactions—and he sees just fine.   He’s not had any traumatic injury, other than being told he can’t do or have something he wants.    

We try and check ourselves and our logic when we notice behaviors and evaluate if it’s related to the overall eye situation or if it’s just plain old four-year-old drama.    There are some things that do stand out though because her other senses are taking a more forceful role in her life.   I think we’re seeing it most in her sense of smell. 

She talks about how things smell.   The other day she asked me if I could smell something.   I told her I didn’t smell pizza but did she?   She said yes, she definitely did.   When I told her she had a great sense of smell she told me, “see, I told you I’m more smelly than Lucy” (our dog).   

The best though is when things “smell yucky” which happens a lot.   Usually this means she just doesn’t want that particular thing, even if it’s candy on top of ice cream, served in a chocolate bowl with a peppermint spoon.    Sometimes though she really has an issue with how things smell.    

For the last three days the thing my daughter’s had issues with is me.   You know how kids use some phrase like, “OW, YOU’RE HURTING ME!” and when it gets results they use it again and again in the hopes it will continue to get results?   Kids don’t catch on as quickly as adults do and even as adults we don’t always catch on for a while, but this was has had me laughing.   What my daughters been telling me is. “you’re making me stinky!”. 

I swear, I showered.   I’ve definitely showered in the past three days, but my daughter is still of the opinion I’m making her stinky.   Tonight she wanted my husband to put her to bed but because she was pitching such a fit I told her I was going to sit by her bed until she calmed down and if she did, then daddy would come and give her a hug goodnight.    She tried to get out of the bed once and I stopped her by putting my arm out.   My arm touched her shirt and—wait for it—now her shirt was stinky.  My arm made her shirt smell stink and therefore she had to take the shirt off.  

The shirt is off and she’s now asleep topless.   

The Big Boy Update:  My son was eating a strawberry popsicle outside.   He very authoritatively told his friends outside, “fruit flies are going to eat this because it’s made of strawberries.”  My husband yelled down from the deck, “fruit flies are going to eat your shirt because you just used it as a napkin.”

The Tiny Girl Chronicles:  My daughter’s new word is ‘stinky'.   Before stinky it was ‘yucky'.   I wonder what the next negative word will be when she wears out ‘stinky’?

Seventeen Miles

Today my running partner and I ran another marathon.   There was a bit of unexpected back-to-back scheduling and we inadvertently scheduled two marathons one weekend after another.   We weren’t particularly worried about it, but it wasn’t something we set out to do or a goal we had.  

There was a snag though: my neighbor had something bothering her on the top of one of her feet and she wasn’t sure what it was.    We’re in that age bracket where something that might be minor to a younger body could turn into a longer-term injury and neither she nor I wanted her to be out from running just because we’d signed up for the race.

Last night we talked about it and she said she wanted to go out and run at least some of the race.   This morning as we waited in line she told me I was going to have to be rather firm with her because she thought she wasn’t always the best judge of when it was good to say enough is enough.   I told her she knew me and that wouldn’t be a problem at all.

We ran the two miles on roads to the mail trail, which ran along an old train track.   The marathon was mostly running up and back two sections of the track.    We had listened to the announcement at the beginning saying you had to follow the full or half marathon paths and you couldn’t switch based on the amount of registrants they had.   However, they said, if you couldn’t finish the marathon that was okay, all you needed to do was come back to the starting area after completing the first leg of the marathon—about seventeen miles.  

So we went out and I told her we could turn around at any point.   We got to the marathon turn at close to nine miles and she decided at that point that yes, we should head back when we got back to the junction.   I said that was good because she was going to have do some serious convincing to get me to go on.

We turned to go back and realized we were watching some of the early marathon runners pass us to head to the finish line.   It was pretty exciting.    When we got back and ran through the finish gate we initially didn’t think anything of it because our timing chips hadn’t crossed some of the latter sections, thus disqualifying us from the race.   We got some fruit, caught up with Uncle Jonathan and Margaret and then headed home.  

When I got in we started getting messages from Uncle Jonathan: we had come in first and second places in our age/gender and we’d gotten first and second for Masters for women.   Oh crap.   We hadn’t been disqualified yet and there were some very fast, likely tired and very fit ladies who weren’t going to get their awards.     We had no intention of causing confusion.

Thanks to Uncle Jonathan who was still there and listening to the ceremony, he let them know so the true winners could be given their awards.     Thanks Margaret and Uncle Jonathan

The Big Boy Update:  We were at a stop light yesterday when my husband said, “I keep wanting to go to that place, ’The Butcher’s Market’”.   My son chimed out from the back seat, “I keep wanting to go to that place right there, Old McDonalds” and pointed to a McDonalds restaurant.

The Tiny Girl Chronicles:  My daughter was given a pink, plush dog with a red heart between his paws last month from the hotel staff when we were in Detroit.   She named him “Broccoli Hair”.   He is neither green nor has hair.

Fitness Update:  Seventeen miles and a marathon we didn’t finish.   I’m not one bit upset or disappointed.   Preventing an injury is more important than finishing a race.

Go Bag Gone

Before I had my son (now five-years-old) my mother-in-law bought me a diaper bag as a gift.   I didn’t have a diaper bag and honestly, I don’t think it’s what I would have picked out for myself, but it became my diaper bag and was ultimately the only diaper bag we ever had.

By not picking it our for myself, I mostly mean I don’t know what I would have picked out.   She selected a nice blue and white pattern and I was sort of excited about it when she gave it to me because I’d never had a Vera Wang item.   She told me it was Vera Bradley, something altogether different.  I am so fashion ignorant.  I liked it though.  It had a big compartment and a lot of side pockets to stick stuff in.  I put all our baby things in it and started toting it around with my newborn son in 2010.

As a quick aside here, my next-door-neighbor coincidentally happened to buy the same diaper bag.   She and I both agreed it was a great bad as we’d go out with our children, matching bags on our shoulders.

I called ours our the, “Go Bag” as opposed to a diaper bag because it would go with us everywhere.   It spent most of its time in the car, restocked and ready for the next outing.   Then, as the children got older it stayed in the back of the car more and more and was called on less and less.   It became the Benadryl and Advil container.   It stored an extra change of clothes for both children, wipes and a few white cloths in case of a mess.   Oh, and the special socks for the trampoline place—can’t forget those.

We’ve been in need of the go bag more infrequently as the children have aged and tonight, after my daughter needed her spare set of clothes after splashing in our friends pool, I decided to have a good look through the Go Bag and see what we really needed.  

It turned out aside from a change of clothes, Benadryl and Advil, we really didn’t need most of the contents so I made the decision to retire our Go Bag after over five years of excellent service.   I put the remaining “necessaries” into a much smaller bag, a “Feed Bag” given to me by my sister-in-law.

I’ll miss the Go Bag.  It served us well.

The Big Boy Update:  My son had another issue with punching today.   He and I made a plan:  we would count to ten before we punched or yelled at anyone.   I was very, very proud of him when he came in later in the afternoon to tell me he had counted to ten because he didn’t want to hurt Madison.    I told him I had had an opportunity to count to ten myself but I hadn’t done so well.   I told him we’d both keep working on it tomorrow.

The Tiny Girl Chronicles:   Aunt Rebecca and I ran in a 5K today with my husband, Uncle Jonathan, and our two children (who had a stroller assist).    My daughter and son were enthusiastically running along with us a good bit of the time.   My daughter came up between Aunt Rebecca and me at one point and said, “I know you can do it, Mommy” to which Aunt Rebecca replied, “we know mommy can do it, what about ‘I know you can do it Aunt Rebecca?!’”

TARDIS

My husband and son found something in the Lego catalog they thought I would really like. My husband ordered it and yesterday it arrived.  My son couldn't wait for dinner to be over so we opened it and I was excited to find a Doctor Who TARDIS Lego model.  

I've loved Doctor Who since I was a child and discovered it on PBS.  When it came back in 2005 I was thrilled and I've enjoyed watching every single show.  I'm looking forward to putting the model together, but my son can't wait.  He's asked me on no less than seven occasions to sit down with him and put it together.  It's not an easy model, but I do want to have him help.   I think he'll do a good job. 

Hopefully we'll have some time tomorrow to get some work done on it.  

The Big Boy Update:  my son has been shoving people at school and at home a lot lately.  We're getting incident reports and we're going to have to figure out what's going on.  Some of it is his gender and age, but I think some might be related to us having to spend so much time with his sister.  We're working on reassuring him and spending more time with just him. 

The Tiny Girl Chronicles:  my daughter has been going through a series of temper tantrums and screaming rages. She is easily upset.  I don't know if it's follow-on from the surgery or her being sick. I hope she feels better soon. 

Let’s Play the Alexa Game

This is a game that wasn’t something children played a year ago.   I’m not even sure how many children are playing it now even.   My daughter came up with the game a while back because she and her brother like to ask Alexa (our Amazon Echo) to do things for them.   They’re pretty good at adding things to the grocery list we don’t really need and they’re excellent at getting Alexa to play the Raining Tacos song again and again.

The Alexa Game happens when we’re not around Alexa (who resides in our kitchen).   We take turns being Alexa while the other people ask Alexa to say or do things.  If it’s your turn to be Alexa you can pretend you don’t understand or you can play the song requested by singing whatever part you know of the song.  

The children like being Alexa and asking questions to a human version of Alexa.    Fortunately we have the real Alexa who does a far better job of answering our questions, especially when it comes to singing songs.

The Big Boy Update:  My son got upset at me tonight because I wasn’t pronouncing shuriken correctly.   He informed me I was saying it wrong and it was pronounced ‘sure-you-king’.   He told me this was “because you were the king of throwing.”

The Tiny Girl Chronicles:  We ate dinner out on our deck.   There were some small bugs hounding us for most of the meal.   My daughter addressed all the bugs in the area loudly, informing them, “hey bugs, we’re not flowers, we’re people.”

Fitness Update:  I had a swimming lesson today with a coach who is going to give me some advice on swimming for a triathlon I have coming up in May.   He had some good tips this morning.   I’m going to have to get some practice time in before we meet again so I can work on his suggestions.

Fever Phobia

My daughter had a bad fever yesterday and the night before.   We didn’t know how bad it was because we didn’t have a thermometer on us through the night and the next day got busy and it wasn’t until later when we made it to a store to pick one up.    

How hot is a hot child?   It’s so hard to tell for me.   My husband seems to have a better handle on it than I do but even this time I knew she was hot.   We were doing the medication alternation and overlap method with Advil and Tylenol to try and get the most fever reduction.   If she hadn’t been throwing up in addition, I think we’d have been less worried because we could have gotten liquids into her.  

By the time we got her temperature measured she was at 103 degrees even with fever-reducing medications.    We talked to her pediatrician’s office twice and got some good advice about the Tylenol we were giving her which we’d gotten post-surgery that included some codeine.   She did some math and said there wasn’t enough Tylenol in the dose to affect much temperature drop and we’d be better off with regular Tylenol.

She also told us about something called “Fever Phobia” that parents commonly suffer from.   She said people think a fever is bad, but it’s the body’s way of fighting something and means the body is just working hard.   She said a high fever of even 105 degrees isn’t that worrisome in a child with the only concern being febrile seizures and since my daughter hadn’t had one by before, she was almost certainly not going to have one now.  

She said if we were really concerned we could stop in to an emergency room but that it sounded like everything was under control and we were doing the right things medication-wise, fluid-wise and care wise.  

We talked to the Beaumont post-op staff next who said they though it was likely a short-lived, high-fever stomach bug that would be almost over by tomorrow with nothing but a low-grade fever remaining.

And they were right.    My daughter barely broke 99 degrees today and is a happy child upstairs now, glad to be eating and moving around with glee.   Fever Phobia is something I think parents can get scared of, sometimes it’s hard to think reasonably when you’re worried your child is terribly ill.

The Big Boy Update:  My son had decided he was not going to school today.   He had decided he was the boss, the adult and the one in charge.   This morning after we returned from out of town, my son  discovered otherwise.   To say it was not pretty would be an understatement.

The Tiny Girl Chronicles:  My husband was talking to my daughter about something I can’t even remember now but I know it wasn’t important in the least.   What I do remember was my daughter saying to him, “daddy, you’re making me go crazy.”

The Eyes of March

Terrible pun, no?   Today is the follow-up day from my daughter’s eye surgery.   Is this the second eye surgery or has there been more?  Now that I think about it, there has been a lot of looking and poking at the eyes, but surgery has been done only twice.

The first time was in on December 19th, 2015 (less than three months ago) on her right eye.    At that time a partial vitrectomy was preformed in which a portion of the vitreous (jelly in the eye) was removed and replaced with Silicon Oil.  Her natural lens was removed at that time as well.   There was a lot more done surrounding those two main things, but from that point in December we were hopefully on a path to improve the visual outcome in my daughter’s right eye.

Yesterday her retina surgeon went back into her eye after two months of observations and opened the lens capsule up to see what had transpired behind the now-opacified shield.  Today he took off the bandage and we found out…well, there was a hiccup or a complication or maybe I should say a fever and some nausea.   Let me explain…

We were seen late for surgery any by the time we left the hospital yesterday my daughter hadn’t had anything to eat for twenty hours.   She was hungry and wanted pizza.   That went down well and everyone was happy only she kept telling us her tummy was hot and lifting her shirt.

She had been given some Tylenol with codeine at the hospital and we’d filled a prescription for it for the next few days so she would leave the eye alone and feel more comfortable.   We did this for the last surgery.   The medication made her sleepy so she fell asleep as soon as we got back to the hotel but a short while later woke up feverish and started vomiting.  

As an aside here, I’m not sure what I was more concerned about initially when it happened:  her comfort or getting her the hell off the bed so I could keep the vomit and stomach acids from seeping through to the mattress.    My husband opted for her and I grabbed the bed.    I think as a whole we made a good choice because we barely missed the mattress layer and she got over being quickly carried to the bathroom.

My daughter was confused.   She had no idea what was going on because—get this—she’s never thrown up that she remembers and she didn’t understand what was going on.   That’s why she was saying her tummy was hot—because she was nauseated.  

Thus began an interesting night of situational evaluation by my husband and me while dealing with my daughter who was very uncomfortable and cranky.    We went through many scenarios: was this a virus she was brewing that coincidentally appeared with a feverous vengeance just as her anesthesia wore off?   Was she having an allergic reaction to one of the medications they gave her?  Did she have anything new this time because she’s been given pretty much everything and has never had a single problem.   Were the side effects normal such as mild nausea and low fever or was she having high fever and major nausea?   We couldn’t tell on the temperature because we didn’t have a thermometer.   We couldn’t’ tell if it was a reaction to the medication they’d given us or if her vomiting was coincidentally timed because we gave her medicine to swallow?   And, above all, should we call in to the emergency line or was this something reasonable we could wait through until morning?

Neither my husband or I wanted to be told to go to the emergency room for a fever and vomiting that seemed manageable so we worked with her through the night.   We gave her two lukewarm baths when she said she was hot and gave her fever-reducing medication when it was time.    We thought we were through it by morning and took her in early to the first follow-up appointment so we could start on the long trip home.

We were not through it.   The vomiting continued on her now very empty stomach.   We asked to have a trash can in the doctor’s room when we arrived.    My daughter, now on vomit number five, had become an expert.  She could tell us before it happened and was able to wait until we got to a sink or had a receptacle.     Her retina surgeon said he didn’t expect this was a reaction fever or nausea from the anesthesia this long after administration.   He was kind enough to get us a prescription for an anti-emetic for our ride home.

Going back to what happened when the patch was taken off and how we were all excited to see what my daughter could see, well, she was just too tired to care at that point.    I’m in communication with her pediatric ophthalmologist at home and we’re going to formulate a plan between now and when we see Dr. Trese in Detroit in four weeks for an in-office follow-up.

The Big Boy Update:  My son loves to look at catalogs.   We had another Lego catalog come in the mail last week and I saved it for him like it was a toy made out solid candy.   He can spent long periods of time looking through a toy catalog and asking you about specific things.   He’s been asking my mother to read him the catalog at night while we’re away.   He remembers the names for things too.   If we had one of the items he would tell my mother, “we have that one”.    If it’s my husband or me he’s talking to, he’s likely to ask us to “put this one on my wish list.”

The Tiny Girl Chronicles:  My daughter has no experience with vomiting.   As it happened for the third time she kept telling me, “I’m having a throwing up.”

March Surgical Update

Welcome to the March edition of “What’s The Latest With the Eyes?” It’s been a whole month since our last official doctor’s update relayed to you by me, your mostly clueless reporter. This month we have positive signs to relate. Basically if you bought stock shares in my daughter’s eyes, I’d say don’t sell because we think things are going to continue to go up. Let’s turn to our on-site reporter in Detroit and find out what the latest news is from today’s surgery…

Typically in these surgical situations the doctor comes in beforehand to talk about what might happen during the procedure. In the case of my daughter’s eyes, there is a second visit mid-procedure in which the doctor comes out and tells us what he’s found and what he thinks the best course of action is.   He then goes back into the operating room, does what he thought would be good to do and then comes out and tells us how it went.   Sounds tragically repetitive but in the case of my daughter’s eyes it’s all I can do to hold on to the laptop and type as fast as I can while asking what I hope are good questions but are more than likely not.    Today’s procedure went about like that overall.

The first thing Dr. Trese told us when he came out mid-procedure was the pressure in both eyes was between eight and nine.   This is good news from several fronts.   First, the left eye which has had no surgical intervention went over four months at a pressure of zero or unmeasurable.   The prevailing thought was the ciliary bodies in her eyes were damaged and were not able to produce fluids any more.   Last month her left eye was at a one instead of zero, which we were thrilled about.   To have her left eye at an eight today is terrific news.   The remaining news about the left eye is it may be looking slightly better but as of now the retinal folds remain.

The right eye was also measuring between eight and nine.   That meant the pressure had dropped from last month where it had remained at a stable twelve for two months after being artificially increased to normal by the substances they added to her eye.    The drop isn’t particularly low and may mean other things are happening in the eye, so from a pressure standpoint, things are good all around.

He saw that the right eye’s lens capsule was a bit more opacified than it was last month.   As a clarification point, I thought that because Dr. Trese couldn’t see into her eye last month because of the opacification, she couldn’t see out.   He said that she could see out some, even with the capsule in its cloudy state.   He suggested opening up the lens capsule both in the front and in the back to allow for an unobscured view.

He said he saw a nice “orange reflex” in the right eye.   What is that?  I asked that too.   It’s when there’s a camera flash and you get an orange spot on the eye.   Guess what that is?  It’s the retina connected to the back of the eye.   YES!  Before he even was able to see in beyond the small area not opacified he was seeing good signs.   (As an aside, I will never, ever intentionally get rid of red eye again in a picture now that I have such a respect for the value of retinas.)

Dr. Trese said he planned on leaving the PFO in because “it’s not been that long.”   I didn’t get a full reason behind why on this one other than it wasn’t hurting anything and it could still do some good in the management of laying down and keeping the retina connected to the choroid layer.  He left, saying he’d be back in an hour with a final update.

In about an hour he was back with good news.   He said the retina was flat behind the right eye.   His exact words were, “the anatomy is thrilling.”   I don’t know if you can hear better words from your retina surgeon.

He opened up the lens capsule significantly on both sides.   If you can picture in your mind an M&M, I’ll describe what he did from there.   In December he made a small hole in the back top of the M&M and removed the entire chocolate center (lens) leaving the lens capsule in place (candy shell).   The candy shell (lens capsule) opacified since that time and today he removed the majority of the back half of the lens capsule and opened up a cats-eye shape in the front portion of the lens capsule.    So on the whole, there is not a lot of the M&M left in my daughter’s right eye, but it’s not needed to see clearly with the many options for vision correction we have today.   What she does need to see is a functioning retina, which we’re getting to next.

Once he removed the cloudy lens capsule he had a clear view of the retina.   It is significantly better from an anatomy standpoint, but does it function?   He saw some pigment under the retina in one spot and a little bit of whitish tissue.   He thought the blood flow looked a little less than normal.  He said the macular edema, or swelling around the central focal point, looked like it had settled down.   The one thing he said to keep in mind was we are still early in the whole process.   She’s less than three months since his initial surgery and there is a lot of time for change and improvement.

One thing that we still have to be mindful of is the positional restrictions she will have from the PFO remaining in her right eye.   There is a slightly higher chance of it moving to the anterior portion of her eye with her lens capsule having larger openings in it but that the silicon oil is a pretty decent barrier.  He also calmed my fears by saying there was nothing terrible that happened if it did move into the front of her eye.   There are long term concerns, but nothing in the short term.

He said whatever she’s been doing positionally had been working very well.   He said some people have a membrane form between the silicone oil and PFO and hers remained perfectly clear so keep up the good work.    At the end of the procedure they added more Healon into her eye to bring the pressure back to normal, put a patch over the eye and sent her off to recovery.

Tomorrow we go into his office and he takes off the patch.   I’m wondering what she’ll be able to see then?   I was disappointed they were unable to get a refraction on her right eye.   If her now flattened right retina can see, it can’t see well because the prescription she would have for that eye +10 to +20. Without a refraction we don’t have a good idea of a lens to get for her glasses.   They tried but with the multiple solutions they were working with during the surgery it wasn’t possible to get anything meaningful.

So good news, definitely.   We have a long way to go.  He left us with some cautious but positive thoughts.   He said both of her retinas are fairly damaged by the long-term detachment, but she may be able to recoup some via cell regrowth in the sub-retinal space.   He said she is young and sometimes regeneration can be pretty dramatic.   I love dramatic.

The Big Boy Update:  My son had a fever on Sunday so he stayed home from school today.  I think he may have had a good time with Mimi at home today because he told her earlier, “I’m not going to school tomorrow because I’m going to be very, very, very, very sick.”

The Tiny Girl Chronicles:  March surgery and her clouded lens capsule has been opened up, revealing a much flattened out retina.   Tomorrow the patch comes off and we’ll see if and what she can see.

Twelve Hours

I would not have believed I could be busy with work for twelve hours in a car going to Detroit, but so it is.   I feel like we left not that long ago and yet I’m just scrambling to finish up things as we’re about to pull into the hotel parking lot.  

This time, I am not going to put an open water bottle into my laptop bag so I can carry a sleeping child into the building.

This time, my child is awake and she’s excited about seeing her friend Susan, who works at the front desk at night.   She brought back the stuffed dog with the heart in his paws she was given by Susan last time we visited.

Hopefully we’ll get in in time to swim in the pool before we have to go to bed.    We’re all looking forward to getting to the hotel.

The Big Boy Update:  My son had a low-grade fever today.   We told him he couldn’t play with his friends today.  My mother is watching him while we’re driving to Detroit and when his friend, Keira knocked on the door he told her he couldn't play.   Then he told my mother, “Mimi, this is how it’s going to be.  This afternoon I’m going to be better so I can play with Keira but tomorrow I’m going to be sick so I don’t have to go to school.”

The Tiny Girl Chronicles:   My daughter is such a good car traveller.   She gets bored but she went twelve hours today without complaining.   Although one time she asked if we were there yet four times in a row, pausing about three seconds between queries.

Fitness Non-Update:  Okay, oww.   I was overly optimistic on how great I felt after the race yesterday.   This morning I was sore.   Today I’ve been in a car for twelve hours and I am hardly moving and I am sore still.

It Was Great…And Tiring

We ran the park marathon today.   It was very well run, the weather was about the best you could ask for on the fifth of March and the trail conditions couldn’t be better.   In short, it was the perfect day for a March marathon.

We did well, although we’re not the fastest runners.   I did my expected three falls during the single track miles, resulting in a small scrape on one knee and bruised balls of my thumbs from catching me as I fell.   Other than that, the race was without injury.

The hydration stations were well-stocked with all sorts of things to eat and drink.   I discovered I like Fritos during a race.   I would never have expected it, but they are so incredibly delicious when you’re dehydrated and in need of sustenance during a run.

We ran into my neighbors children at one point and the jogged along with us for close to a mile.   Then they decided they didn’t want to go any further and furthermore, they were too scared to run back to their father who was waiting with the youngest child.   So we ran backwards with them and added close to a mile to our race distance, making our total run well over twenty-seven miles.

Uncle Jonathan met us two miles before the end of the race—how sweet!   We were so happy to see him.   He had run a 10K that morning and then came out to run us in to the finish line.    It was great to see him and catch up.

We got in sight of the finish line and sprinted over it in a last-ditch effort to regain some time and compete against the each other—fun times.

I’m up for running the marathon in the park across the street again next year after today.

The Big Boy Update:  My son sang out the “Nationwide is on your side” jingle the other day.   We don’t typically play through commercials, but apparently he caught it enough that it stuck.    I still don’t know where he heard it though.

The Tiny Girl Chronicles:  My daughter knows her eye will be operated on on Monday.   She knows her surgeon will likely take the heavy substance out of her eye and her restrictions on position will be removed.   She asked me the other day, “but mom, can I keep my stand?”   She likes her iPad stand that lets her lie on her back and watch the iPad.   I told her she could still keep it.

Fitness Update:  27.8 miles today in the park for the marathon organized by the track club I joined that got me trained up enough to run my first 5K.   Great day.  Great race.

I’m a Gross

Tomorrow my friend and I are running a marathon.   I think this is the sixth marathon race we’ve run, but it will be the most difficult one we’ve done yet.   The course itself is what makes the race challenging.  We’re trained up for it and have even run the marathon distance, going through most of the sections of the race path we’ll be following tomorrow.

The reason this particular marathon will be more challenging is the terrain.   There is a lot of elevation change.   That doesn’t particularly bother us because it’s our “home course” in so far as it’s in the park across the street from our neighborhood where we run all the time.   There are sections of the race we’ve run for years, and we shouldn’t have too much trouble with them.    There are other sections that we don’t know as well.

The most difficult part, okay wait, there are several difficult parts, so let me say the most “challenging” will be the over six miles of single track trail.   These are little one-person wide trails through the woods where sometimes you have to look for the next blue triangle nailed to a tree ahead to figure out where to go next.

That part will be done with early on in the race.   We have the fun of running what I named, “the hateful route” not once, but twice, with its switch backs and extreme elevation changes after the first half of the race is completed.

Then, right before the end, we go from one of the highest points in the race elevation-wise downhill to a creek.   When we get to that low point, we run all the way back up the path to the top and are at probably close to mile twenty-four.    From that point on, there is only one more real obstacle, something I named “the vista” years ago.     It’s a mean little hill that for some reason is psychologically more challenging than other inclines of similar distance and pitch.   I think it’s because it’s a straight path and there are no corners to visually block how far you’re going to be running uphill and your brain just starts telling you, “no way, I can’t do that hill.”

After the vista, we’re nearly flat until the finish line.   I’m looking forward to tomorrow tinged with a bit of anxiety.   I just hope I don’t fall down and concuss myself on one of the big roots or rocks.   That would be embarrassing.

Oh, and about that blog post title…my bib number is 144.

The Big Boy Update:  Lately my son describes things two ways:  “that’s so epic” and “that’s so boredom”.   Today he was looking at Legos in the toy store and I said, “hey, look at this bake shop Lego set”   That particular set and the ones in that area were all in pink and clearly targeted at girls.   But hey, I wanted my little guy to have an opportunity to consider something other than the knights and warriors types of sets he is always drawn to.   He looked at me and said, “that is boredom.  I don’t like girly stuff.”

The Tiny Girl Chronicles:  My daughter and son had an altercation that involved bodily contact on the stairs just before dinner.   My son stormed away mad and my daughter remained on the stairs crying.   I talked to both of them.   I suggested they come to their seats because their dinner was ready.   I suggested to my daughter that she needed to try and stop crying.   As she came down the stairs she said, “I hope dinner helps me calm down.”  (It did.)

The Visual Calendar

My children have been asking a lot recently what day of the week it is, is it a school day, how many school days are left in the week and if tomorrow is a weekend day.   We can tell them what day it is, and they know the days, but their mental map of a week isn’t that concrete yet.    So I decided to make a calendar.

I was going to do something fancy with velcro stars, find a laminator and basically over engineer something that was at it’s basic informational level, simple.    I forgot and realized the next day at breakfast and decided on a low-tech option instead, necessitated by lack of time.

I got a piece of paper and drew a long rectangle and then marked off seven blocks inside the rectangle.   I got a highlighter and colored in the last two blocks at the end of the seven, indicating Saturday and Sunday.     Then I brought the rudimentary calendar over to the children.   I told them this was a week with white days being school days and green days being weekend days.

Then I took my marker and wrote “M” in the Monday block, telling them that was two days ago.   I wrote “T” in the second block for Tuesday and said that was yesterday.   I wrote a “W” in the third block and said that was today, Wednesday.   Then I asked if they could tell me how many more school days we had until the weekend?

They both cried out, “two more days!”   Today I wrote in “Th” for Thursday and pointed out that tomorrow was the last day of the school week before the weekend.   We taped the calendar at the bottom of the refrigerator, just at their eye-level.  

They like the new calendar.   Next week we’ll draw another rectangle below the one for this week and start all over again.

The Big Boy Update:  My daughter told us her favorite number was ten-thousand a while back.   My son didn’t weigh-in on his favorite number until recently where he volunteered for no apparent reason  that zero was his favorite number.

The Tiny Girl Chronicles:  My daughter may be seeing somewhat more information from her left eye.   She’s discovered if she rolls the eye upwards she can tell more from that angle.   On the way to Tae Kwon Do tonight she told me correctly car after car’s colors.   She got the bright colors easily.   Grey, silver and dark grey in the low light were hard to tell, but she nailed the other ones.   She even told me about “a big white truck, mom!”   I told her it was a lot like a truck but it carried people, what did she think it was?   She easily guessed it was a bus.   Then she told me the bus had two other colors on it and said they were red and yellow.   The city bus is white with a long tri-colored stripe of red, orange and yellow below the windows.   I was surprised she could see the colors.    Then we got on a divided highway and she asked about the other cars far away.    She could see the movement of cars across the large, grass median (I think).   Hopefully this is good news for her left eye.   Her right isn’t seeing much with the opacified lens capsule and lack of natural lens, so it has to be left only that this information is coming from.

1-2-3 Quiet Game

We were having volume problems in the car some time back with the children so we decided to play the quiet game.  They didn’t get the rules at first but they picked up after a few times.   Mostly they thought the whole thing was funny, even though no one was remaining quiet for very long.

The next evolution in the game was my daughter’s insistence that we play, “123quietgame” so named because of how quickly she would run together the words.    She would start a game and then twelve seconds later, before anyone had even made a noise, end the game by starting the game again.    We had a few conversations about how a game usually went, suggesting we wait until someone makes a noise before starting the game again.

For some time now if anyone needs a reduction of volume in the car they can say, “1-2-3 Quiet Game” as a request for us all to tone it down.   Usually it’s my daughter making the request, although my son likes to kick off a game from time to time.

Tonight I saw the next evolution in the game.   My children had picked up on something my husband and I were doing which was pointing at the person who spoke/laughed/made a noise to let them know they were out of the game.   By doing this you’re still in the game yourself.   Tonight my daughter started a game as we all went to dinner with my mother.   When someone talked both my son and daughter immediately pointed at them.  

For the first time, we got through a game or two where we had a true “winner”, meaning everyone was out except one person.   More commonly one person would say something and then the game would start over or fizzle out.

We had a lot of fun trying to get my son to crack tonight.   He finally lost one time to my husband who turned around at a stop light and made my son laugh just by looking at him.    It was a fun ride to dinner.

The Big Boy Tiny Girl Train Interaction:   On the way to dinner we were passing near train tracks. The adults heard the train’s horn and told the children to listen.   Unfortunately, the train had moved on and after a bit we started talking again.   My son wasn’t ready to give up on hearing the train and said very emphatically, “wait, everybody be quiet.  I think I hear the train.”   My daughter replied, “well, I think that was my nose.”

Playing Wedding

My neighbor called me today while I was in the car with my husband and children to tell me a story.   I couldn’t stop laughing through the whole thing, even though it’s not strictly a funny story.    She said she wanted to call and let me know what had happened.

She’s come upstairs to find my son (five-years-old) and her daughter (four-years-old) completely naked, in their daughter’s bed, under the covers.   When asked what was going on they informed her they were, “playing wedding”.  

She explained to them that wasn’t perhaps the best game for them to be playing and it was time to get their clothes back ok and move along to other games and things they could play.    I was laughing while she’s telling me this because I’m trying to figure out which one of the children came up with this idea—and more to the point, where did they get the idea from in the first place?

I have seen it happen enough to know by now that children are little sponges and can pick up things from all sorts of times when you didn’t even know they were paying attention.   But even so, when did they get the idea that you have a wedding and then go get into bed together naked?

I even offered up to her with the “possible too much information” caveat that my husband and I didn’t sleep naked so that wasn’t an easy leap.    She and I didn’t come to any conclusions on where it came from in the end.    I was definitely able to use the, “kids grow up so fast these days” phrase today in a whole new light though.

The Big Boy Update:  My son has a game he likes to play on the iPad when he gets to have time with it on the weekends.   There’s this whole notion of “leveling up” that happens when you play the game and then are rewarded with more powerful items or new levels by virtue of the time you’ve invested in playing.   My son just likes to watch the thirty-second videos that highlight aspects of the game, and the products the Lego company has for sale that go with the product.   If there was a way to level up by watching in-game videos, my son would be maxed out.

The Tiny Girl Chronicles:   On the way home from dinner tonight my husband and I saw an ambulance coming our way.   We said to the children, “listen!”  My son immediately said he heard the ambulance.   My daughter rolled down her window, listened carefully for a few seconds and then said rather definitively, “aliens.”

Fitness Update:  My cousin and I ran close to four miles today.   Well, we did some interval walking in the middle, but there was one point we had to clamber over a large, fallen tree and another time I had to lie down in the greenway to get a measurement so there were additional “obstacles” we added into the run.