Monday, December 7, 2015

Can We Play Someone Bring the Rock Inside?

This is a game my daughter is mad about.   She is crazy happy to play it any time.   It’s not even a game, but she and my son think it is.   Mostly she thinks it a game that never has an end.   She has never tired of playing the game that I’ve ever witnessed.   It goes like this…

Put two children in the bathtub and wash vigorously.   Present towels to wet, giggling children ready to exit the tub.    Cover children up on the bath mat after they drop into the fetal position on the floor because, “I’m cold!” is shouted two seconds after exiting the tub.    Tuck the towel all around and under them to keep the cold out and then…wait a minute…where did the children go?  “hey mom, do you see the children?  They’re gone.”  <pause>  “Wait a minute, did someone bring a rock inside the house?   What’s this big rock doing in the bathroom?”   This is followed by sitting on the child and waiting for them to giggle enough so that the towel is pulled back and we—surprised—discover it’s our missing children.

There are variations on the patter, but the game is always the same.   My daughter wants to play it “one more time” again and again because my husband is so good at coming up with so many different things to do with large, unexpected rocks in the house.

Recently my daughter was making peeping sounds, including doing so under the towel so my husband modified the game and cracked the “egg” only to discover a little baby chick or duck or dinosaur (in the case of my son) instead of our children.  

My daughter has now changed the name of the game.   At the end of bath time she now says, “can we play someone bring the egg inside?’”

The Big Boy Update:  The children were talking about growing up in the car this morning as we discussed my son’s upcoming birthday.   He said, “I’m going to be bigger just like Mario after he eats a mushroom.”   Since I grew up myself playing Super Mario Brothers, I had to tell him how much I liked his analogy.   Maybe we’ll get mushroom pizza for dinner on his birthday.

The Tiny Girl Chronicles:  Yesterday she started talking about Uncle Jonathan.   She told my husband his nickname was “T-Stack”.   I’m not sure where she came up with this but when I messaged Uncle Jonathan about it he said, “I’m cool with that.”

Sunday, December 6, 2015

Putting Up the Glitz

Today was holiday decorations day here at the house.   We don’t have a specific day we decorate as a family, but we don’t do it before Thanksgiving or before the start of December.   After we get into the month of Christmas we get it done whenever it seems to be a good time to do so.  

This morning I decided it was about time to get to it.   My son has a birthday party here at the house next Saturday so ideally we’d have some things out before then and doing the decorations on a weekend could involve the children in the process.  My daughter was interested in helping and my son was interested in playing outside with his friends.   No surprise there.

I brought down all the bins from last year and had no idea where things were because I’d completely rearranged into new, larger bins at the end of last year when we took everything down.    It turned out to be easier with fewer, larger bins.    My husband is still recovering from hernia surgery but we talked him into a tree shopping adventure with me promising to do all the lifting.    

Into the car with my children not listening when we told them how cold it was outside and one very unhappy, tutu-wearing child suffered through the majority of the outdoors part of the tree purchasing. My husband got us a wreath, a tree and he got a little tiny tree to put in their room.   They were very happy about this mini-tree for their room.

The rest of the day was mostly playing outside with children and neighbors while my husband and I did some work getting things up in and out of the house.   He had to move slowly and couldn’t pick things up, but he got a few things completed like the little candle lights and the plug-in trees by the front door.  I got everything done but the main tree in the basement which we had planned to do another day.

Did I mention before how much I dislike glitter?   I found several “glittery” things in my Christmas decorations that I purchased at some point.   They were of the sturdy glitter type in which the glitter is well-affixed, but that doesn’t prevent a glitter episode when the item is handled by an exuberant small child.  

Holiday glitz is up, glitter and all.

The Big Boy Update:  “Mom, there’s someone we don’t know at the front door.”   I was so proud of my son today.   We have told them to not open the door if it’s someone they don’t know and to come get one of us.   When I walked out to the foyer I saw it was our mailman, Pat.   I introduced my son to Pat and they shook hands.   I told him Pat was our friend and he could open the door for Pat any time.   We are very fond of our mailman, Pat.

The Tiny Girl Chronicles:  Diaper free.   My daughter has been asking to go to bed in underpants for a while now but we haven’t been wanting to take the step with her eye situation.   Tonight when she asked again I decided why not.    She does come downstairs some mornings with a completely dry diaper, which she likes to show me.    We have an alarm set for 11PM to go up, wake her up and have her go to the bathroom.   That worked well for my son when he was learning to hold it all night.   I’ll let you know how it goes.

Saturday, December 5, 2015

Luminries

My best running buddy friend and neighbor had this idea to do a luminary event for our neighborhood.   She wanted it to be a service project for her children to help raise money for something.   Last year she mentioned this to me at about December NearlyChristmas-ish and I said something like, “that sounds like a great idea” and didn’t say anything else.    This year we talked about it in November and there was time to plan it and do it right so I said something like, “hey, I’d really like to do that luminary thing with you this year, let’s get to planning it.”

And we have.   The planning is done, the ordering of estimated supplies was made, the calculation of percentage of funds to go to the hospital was announced and a Signup Genius page invitation was created.   We have pre-sold over one-thousand luminaries for our neighborhood.   On December 19th, we’re meeting at our clubhouse, neighbors will pick up bags of sand, luminary bags and candles and pay $10 for each package of ten luminaries.    Over $7.50 per ten-pack will go to towards the hospital.

Today we put bags and candles into larger paper bags, ready for pickup.   We scooped sand into produce plastic bags.  You know those thin bags you put apples or tomatoes or other produce in?    Those suckers are sturdy.   You can put ten pounds of sand into one of them and tie them shut and they hold up if you’re not too rough with them.   We tried to come up with some sort of “reuse” plan and those bags were great because they were just getting sent back to the grocery store for recycling.

My garage is packed with sand, bags and candles in preparation for the 19th.   We’re ready for 1200 luminaries to be sold.   We’re getting close to that number already.   The neighborhood should look lovely on the 19th.   We hope the message of giving of your time to help others will be one my children and my neighbor’s children understand as well.

The Big Boy Update:  My son loves my neighbor’s four girls.  I think he tried to impress them the entire day while they were here.  He didn’t run out of energy even through two movies and pizza.   It only went downhill at the very end of the night when he started pulling his penis out in the living room.   As it turns out, it was itching badly from some eczema and it wasn’t him trying to take it “to the next level” with the ladies.  

The Tiny Girl Chronicles:   My daughter has been focused on drawing and coloring a lot lately.   She colored in over the last three days one of those “Velvet Elvis” sheets (as I like to call them).  It was a 18”x24” poster with a geometric design in white, surrounded by black fuzzy material.   You can color anywhere that’s white, but not on the black.   This works very well for my daughter given her limited vision.  She was so proud of it when she finished that I put it on our refrigerator so we can appreciate it over the next week or so.

Friday, December 4, 2015

Another Opinion (Referral)

We’ve been working on this for some time, and as of yesterday we’re taking my daughter for a second opinion on her eyes.   I dislike that phrase, “second opinion” because the number of eye specialists that have been involved in my daughter’s case as well as other, cross-discipline doctors, has grown into quite the list.  I had to create a spreadsheet just to keep track of them.

The care we are receiving at Duke University Hospital and the Duke Eye Center is excellent and yet we are still struggling because we have no diagnosis for my daughter’s condition and the treatment she is receiving is not seeing the results we had hoped for.   She is still well beyond legally blind and the school system’s eye specialist evaluator suggested a school for the blind and the introduction of braille as soon as possible, if, and she agreed we were on uncertain ground, her vision were to remain at the current state.

Throughout the last several months, starting at the point my daughter was initially admitted to the hospital on September 2nd for an expedited workup, we have been collecting information on where to go, if needed, for an additional opinion/evaluation.   I have second spreadsheet on all the doctors/locations people have suggested.    We have heard the phrase, “one of the best in the nation” many times and we are so grateful for all the suggestions and advice from our friends and friends of friends and even friends of friends who had no idea who we were but wanted to help out a family who had a little girl who suddenly went blind.

Of the suggestions we collected, I made a list of those most mentioned and specifically, those recommended by experts in the field of ophthalmology and retinal disorders.   I emailed our two main doctors and asked for their advice and recommendation.   They agreed with the one name we had heard more than any other, Dr. Michael Trese in Denver with Associated Retinal Consultants, specialists in “diseases and surgery of the retina and vitreous.”

We knew there would be no way we could get an appointment with Dr. Trese quickly ourselves.   Our doctors have been working with Dr. Trese’s office to facilitate a visit for us and as of two days ago, we are scheduled to have my daughter evaluated under anesthesia by Dr. Trese and his team on December 14th.   We have made travel arrangements and we are anxiously awaiting the appointment.

More when we return.   Hopefully some additional insight.

The Big Boy Update:  My son was in a hurry to get to Tae Kwon Do the other day as we waited at the red light just before the parking lot.   He said, “we should cheat” when I told him we couldn’t go yet because it wasn’t our turn yet.

The Tiny Girl Chronicles:  In addition to my daughter’s upcoming evaluation by Dr. Trese in Detroit, we have another evaluation under anesthesia (EUA) next Wednesday.   She will have a brain MRI just before which will show if any changes have happened in her brain since the prior MRI in early September.   There will be another specialist looking at her during her evaluation as well.    I’ve also talked with her rheumatologist yesterday and we are going to reassess the immunosuppressant medication after the EUA and MRI to determine if any changes should be made in her course of treatment.

Thursday, December 3, 2015

Getting On My Nerves

I have been trying to test and see if I need to take the Lyrica.   I really dislike having to take any medication.   That doesn’t mean I don’t appreciate medication.   If I need an antibiotic I am excessively happy there is one that will help my body fight an infection.   If I’ve had surgery I’m exceptionally grateful there are pain medications that help me cope with the pain while my body mends.   NSAIDs are great when you have inflammation and don’t even get me started about the wonders of antihistamines when I have an allergic response to something.

What I don’t like is having to be dependent on a medication to function on a daily basis.   Last November I started taking Lyrica in the hopes I was dealing with a “nerve storm” or other nerve situation relating to the spinal cord damage I’ve had.   I was worried this was the beginning of the end; the start of taking medication I’d never be able to stop for the rest of my life.   I didn’t and don’t like the thought.

So I do a test from time to time to see how much I really need the Lyrica.  Can I manage without it?  How much does it really help?   Since returning from Las Vegas and running the marathon there I started titrating off the Lyrica.   It has been three days now since I’ve had any, and some time longer since I had my normal daily dose.  

What have I discovered?   The first thing is the withdrawal symptoms reported on the internet from other people didn’t happen.   I wasn’t having side effects while taking it though, either, so I’m not too surprised there.   The second thing is things are more “uncomfortable” right now than they normally would be, which is interesting.   A normally soft sweater feels just a bit itchy and the tag is almost scratchy.   Things just get on my physical “nerves” more easily.  It’s minor, but it’s interesting to notice.    The last thing I discovered is, I don’t have to have the Lyrica.

That doesn’t mean it’s not helpful.   I’m not in a pain situation that prevents me from sleeping or keeps me from doing my daily activities.   But the Lyrica does make life more normal.   I’m struggling with wanting to be in less pain and not wanting to take medication.    So I’ll start taking the Lyrica again, knowing I could stop if I needed to or if I had to in the case of a zombie apocalypse and supplies run out—but I don’t have to.  

It makes me happier knowing I’m not dependent in Lyrica to function, even it makes functioning easier.

The Big Boy Update:  My son asked my husband the other day, “why is ‘y’ a word and letter?”  He was asking about ‘why’ and ‘y’.   That one was tricky to explain.

The Tiny Girl Chronicles:   My daughter is still loving Tae Kwon Do classes.   We’ve decided to enroll both her and her brother for six months.  We weren’t certain with her because she can’t see the instructors or even her peers when they’re not right near her, but she’s been having a good time.   When needed, I go into the room and stand beside her, doing the moves so she can see and copy me close up.

Wednesday, December 2, 2015

Chores For Screens

My husband and I try to do a reasonable job balancing a lot of things in the lives of our children.  One of those things is television/iPad/game time, commonly known as “screen time.”  My children have evolved in the whole screens realm over the last year or so.    

First, they watched television, then they liked being more interactive on an iPad.   Now, my daughter can’t see the television at all and only wants to do the iPad where as my son has added in the additional WiiU game console as an additional thing he likes to do.    My daughter can and does like the game controller, mostly because the controller has its own screen and she can play close up.   But my son really gets the Mario and Donkey Kong video games and she’s just likes to mess around from time to time. 

The thing about all of these ways to spend time is they would be an easy first choice to the children than, say, putting a puzzle together or doing something outside if we let them be universally available.   So we put in limits.   

With exceptions I can count on one hand, I don’t allow the devices to go out to meals or be brought to the table.  We decided some time back that iPads wouldn’t be available on week days, only weekends, which brought about the frequented question, “is it iPad day?”  More recently my husband and I decided we should turn screen time into a privilege that could be earned any day of the week.  

This was going to be dead easy for my daughter because she loves to help and doesn’t need any reward for doing so, ever.  My so however is highly motivated to do something to get iPad time on a school day.   Or so he says.    We shall see how it goes…

The Big Boy Update:  My son came upstairs, hearing I needed help with things and he could earn iPad time.  I told him he could help with the dishes and he quickly got out three bowls and put them on the counter where I indicated.   He then said, “okay, can I have the iPad now?”   I explained one minute of helping only got him one minute of iPad time and that when he completed a job he could have the iPad.   He was livid.   He was so angry I had to send him to his room.   When we looked for him later when dinner was ready we couldn’t find him.   It turns out he was under the table and dreaming in the main dining room.   This morning he said he would like to help me with laundry tonight.   I told him I’d wait to fold it until he got home. 

The Tiny Girl Chronicles:  My daughter came upstairs to help with the dishes.   She carefully got out all the different pieces and placed them on the counter near the cabinets they go into.   She put all the utensils into the drawer using a stool and then helped put each item into the cabinets where they are stored.   Some of the items like storage containers needed to be dried.   She helped dry them and then placed them away.    When she was done I let her use the iPad until bath time.

Tuesday, December 1, 2015

The One Roll Christmas

I love wrapping paper.   On second thought, I don’t love wrapping paper indiscriminately.  I love good wrapping paper.   It’s likely due to my love of origami and other paper crafts, but I always appreciate a good roll of paper.

Years ago, and even still today there was the great wrapper caper (I made that name up) in which it would appear you were purchasing yards and yards of paper because the physical dimensions of the five-roll package were so big.  You would get home, pull off the cellophane wrapper and remove the cardboard end-caps to discover each roll had about two presents-worth of paper wrapped around a large cardboard tube.    I got pretty good at feeling the heft of those multi-rolls in conjunction with squeezing the cylinders and could make an easy call on the total amount.

Then, and this was some years before I had children, that I found the wrapping paper motherlode.   Imagine my surprise when I go down a row at CostCo to discover rolls of good quality paper with nearly an inch of wound paper on the tube.   Then, picture me finding out these rolls were only $10.99.   I am most certain you can, if you know me at all, envision my cart full of every variety of paper they had.  

I still have a lot of that paper because I just don’t have hundreds of Christmas presents to wrap each year.    That point in time—I can’t remember how long ago it was—seemed to be a roll-to-value turning point.   Since then I’ve seen lots of paper rolls with measurable, meaningful quantity on them.   It doesn’t really matter though because I’ve put a kibosh on purchasing more paper until the current stock has been exhausted.    

Then I saw a roll I really liked.  Black mainly with silver, red and white ornaments that just called out to me, “you need to wrap everything with me.  Put me in your cart.  Do it now.”   I was powerless to resist and the roll came home with me.

I have followed instructions and have wrapped darned near everything with that roll of paper.   As of the 1st of December there are only a few presents that haven’t arrived or made that will need to be wrapped.  It’s going to be a one-roll Christmas and I am completely going to love the look of the presents under the tree.

The Big Boy Update:  While my daughter was having a play therapy session with her therapist my son and I went to get something at a store.   He talked me into a little container of Hershey’s Kisses.  After eating two in the car I told him, “I feel like I’m cheating on dinner.”  He asked me what that meant and I explained.   As we walked back into the therapist’s office he said to me, “I love cheating on dinner.”  The one lady in the waiting room couldn’t help but laugh when she heard him.

The Tiny Girl Chronicles:  My daughter feels very strongly how M&M’s is pronounced.   I tried to correct her today and she emphatically told me, “Mom, it’s in-uuh-MEN!”