Saturday, June 24, 2017

Kayaking

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

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

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

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

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

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

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

Friday, June 23, 2017

Capable

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

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

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

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

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

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

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

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

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

Thursday, June 22, 2017

Neuralgia

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

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

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

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

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

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

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

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

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

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

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

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

Wednesday, June 21, 2017

Something is There

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

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

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

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

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

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

Tuesday, June 20, 2017

The OR Spirit

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

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

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

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

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

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

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

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

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

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

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

Monday, June 19, 2017

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

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

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

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

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

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

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

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

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

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

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

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


Sunday, June 18, 2017

Sighted Guide

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

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

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

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

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

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

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

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

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