Saturday Stroll

 Maggie and Steve and I decided to head down to Coghlan Beach for a walk this morning. The nice weather of earlier in the week is changing, and we don't want to waste any good days before the storm comes in tomorrow. Man oh Man. I would say that storm is a' comin  because the wind was howling at the end of that spit of land behind the Marina Green and harbor.  We stayed about 30 seconds because it was too much to handle. Of course I can get a picture in about 5 seconds, but I had to make sure those brakes were firmly locked in place.

Steve ran about 1/4 mile back to get the car so we could get Maggie out of the wind ASAP. All of us were having a hard time, though she had her game face on. As soon as we got home, though Maggie just started to cry. It really was overwhelming. And not just for us. It looked like a couple of sailboat were getting a little overwhelmed as well.  . 

Windy, but Beautiful. 

Maggie is happier now.

Maggie in the news

Maggie World was featured on google news!

http://newshawksreview.com/blog/a-young-lady-her-mother-and-their-blog-2-happy-and-strong-women/4668/

A Cinderella Story

To match the fairy tale that is her life (sarcasm), Maggie emulates Cinderella. 

NO, we don't make her scrub the floors or lock her in a tower and she isn't headed to the ball to meet her handsome prince. In fact, she's takes after Cinderella in only one way - she loses a single shoe all the time. 

Because of her dystonia and cerebral palsy, Maggie moves constantly. Her body is in motion somewhere even when she's all strapped into her chair. A lot of times she is moving her legs and feet.  Her feet are very small. She is 17 years old and still in children's sizes. She wears a child's size 12 or 13 which is generally appropriate for a child about 5 or 6 years old. Her feet are little and skinny. Between the movement and the teeny feet, it is difficult to find shoes that will stay on her feet.  Most styles are right out.

Invariably when we go for a walk, someone tells us she's dropped a shoe. After a couple of tries putting it on again,  I will give up and stick it in my purse. We have been lucky that we retrieve so many.   With this new problem with her wheelchair footpad (see yesterdays post), her feet are out of sight and no one sees it drop. She lost one shoe last week while on an outing from school. They retraced their steps, but never found it. Then I lost another shoe that I tossed in the car after she dropped it. Hope springs eternal that one will still show up.  

Saturday morning I took Maggie to buy some new shoes. She thought that was the greatest time ever. We've done it before, but she never reacted one way or the other. That has now changed. Shoe shopping is the bomb!  I let her choose between a glittery/sparkly pair of high tops and some slip ons with peace signs. My girl went for the bling, of course. We also bought the white athletic shoes from yesterdays post. When we returned to Steve, she quickly said "Dad look new shoes." She repeated it over and over again until she felt his praise was sufficient.



Sunday morning came and Maggie and I were heading out to run some errands. I said, "Mag, where do you want to go today." She didn't hesitate at all. She just started making a sentence "Mom, shoe shopping please."  I had to nix that idea and quick.  I may have created a monster. 

Maggie may have feet the size of a small child, but when it comes to shopping, she definitely acts like a 17 year old.

More gruel sir?

Turns out Maggie diets about as well as her mother. One week and it's over.

After a week of cutting her nighttime feeds something was off. I had to call the nurse practitioner today. Mary Margaret is unable to stay awake at school. It's been going all week, since right after we cut her feeds. I waited because her body should adjust to the lower calorie level and I wanted to make sure she was getting enough sleep at night. Last night she was asleep by eight and other than dealing with coughing fits and suction issues she slept until 6:30AM. She slept through all the other procedures. I figured that should take care of it,  but she slept all day in school again.

I left the nurse practitionery a message telling her what was going on. Maggie is not sick, she not lethargic (which is sign of very serious problems) she's just exhausted.  She called back within the hour and said to back to where we had it. Maggie is likely getting hypeglycemic from the change. Where I would go and sneak a carrot --ok a COOKIE -- to satisfy my hunger, she cannot.  But her body needs more energy. 


That's my Maggie. Tough as nails and as delicate as an orchid. 

Tonight we crank up the feeding pump and party all night long.

Barkeep! Vivonex all around!

 

Stretched to the Breaking Point

The title doesn't refer to my psyche, but to Maggie's chair. Her wheelchair is once again in need of attention and repair. She can use it, but it is tattered and sad.  The parts were ordered eons ago and we are waiting and waiting and waiting for them to be delivered and installed. In this day of overnight delivery and immediate attention, it blows my mind that these parts take three months to get.

The most unsightly part of the repair is the fabric behind Maggie’s legs that is designed to help Maggie  keep her feet in place. This neoprene fabric  is stretched behind Maggie’s legs to keep her feet from dangling in space.  It is supposed to look something like this.  

Maggie tends to use it to rest her feet and the tone in her legs is so high that she exerts constant pressure on this fabric. Surprise surprise, she wore a hole in it.  The new one was ordered llong ago and they forgot about it. It was ordered again on the 1^st of March and now, 64 days later, we still don’t have it. That little hole got bigger and bigger. We turned the neoprene upside down so that the pressure would be on another part of the fabric, but that seemed only to exacerbate the problem. Now there is a gaping  hole all the way across the cihair. Maggie sticks her feet through it and looks like an amputee. They sent me this picture from school today.

We could just take it off, but even in its tattered state it is providing some protection for Maggie. When she sticks her legs through she is not keeping her feet in the right position, but the fabric is still between her legs and the footplates of the chair. Without the fabric, her legs would be behind the metal footplates and she would injure her shins on those sharp metal edges.  

But she looks like someone down on their luck hustling for handouts on the street.

Hmmm. Maybe she could earn her allowance.

Or she could contribute to her shoe fund.  A lot of shoes drop through that black hole.   The shoe story will follow.

Anniversary

May 3, 1986

Today is our 25th wedding anniversary. 25 years ago Steve and I promised to be true to each other in good times and in bad, and in sickness and in health. I think we kept our promise to each other.

What can I say? I married well.



 

Maggie the Magnificient

For those of you just tuning in, let me get you up to speed.

I have an amazing daughter.

Last night Maggie and I were home alone folding laundry and watching 60 minutes. Maggie hates television. She cannot see well enough to enjoy it and worst of all, when we are watching it that means we are NOT paying attention to her. This, of course is unacceptable.  She said what she always does.  “Mom, I don’t like TV.”  And I respond the way I always do , “too bad, I do and I’m watching this.”  That cracks her up so she does it over and over again and I give the same response. It’s a never ending game.

After about seven or eight rounds of this game, my friend Lori called me. She could not find CNN on the TV. Her teenage daughter told her something was up and they were trying to tune in to see what was going on. I told her it was channel 56 and turned it on myself. Wolf Blitzer was dancing around the announcement about Osama Bin Laden but not saying what was happening.  Presumably they were waiting for confirmation.  I had no idea what they were about to say, but the build up was huge. I called Steve at his friend’s house to tell them to turn on the news. Even though it was clearly something big,  my jaw dropped when they announced the news.  I stopped folding laundry and stared at the television completely ignoring Maggie.

I can safely say that Maggie does not have any understanding of Osama Bin Laden or breaking news or any such thing, (and I envy that a little).  But somehow she picked up on the gravity of what was going on. I talked to a couple of people on the phone and kept watching the television. Maggie sat there quietly until she started hitting her talker. I thought we would be back to the “I don’t like TV” statement, but that was not what she had to say. She worked clicking and moving until she said: “Dad, come see the TV.”

My jaw dropped again. My girl knew that this was something big and she figured her dad would want to know what was happening.   

She amazes me.  That is all.