School daze

School started (a month ago--gah!), and so far Addy is having a good time.  Nora has been begging to get to go to school, too, because she doesn't understand that she's still 2 (for a few more weeks at least).  As a compromise, Nora gets to have her lunch (at home) in a lunchbox just like Sister.  Yesterday, she was pulling things out of her lunchbox and said "And this is my juice box, and this is my yogurt, and this is my sandwich.  And this is my ice pack in case I get a booboo."

MadLib gone mad

Nora was filling in a MadLib puzzle this morning and asked Addy, "Do you want nouns, sounds, puppies, or cats?"  Addy picked puppies.  The way they interact with each other cracks me up sometimes.

Little Gamers

Besides an insatiable desire to play Game Cube Mario Party on the Wii, the girls have been on a board game kick lately.  So far they've talked Daddy into making up seriously modified versions of:

* Monopoly

* Trivial Pursuit

* Carcassonne

* Castellan

* The Powerpuff Girls Mojo Jojo Attacks Townsville

Plus The Ladybug Game, which is actually made for kids 3 and up.  Seems like a pretty good--if esoteric--sample of games for them to be exposed to.

Technically she's right

Addy:  Nora, what pretend planet should we go to?

Nora:  The moon!

Addy:  Actually that's not a planet.  How about Jupiter?  That's where your castle can be!

Push Gloves Tutorial

They're more than just a fashion statement: push gloves (a.k.a., wheelchair gloves) help reduce the amount of yuck that transfers to your hands when you are using a manual wheelchair to get around.  Kids often use bike gloves, weight-lifting gloves, or baseball gloves, but some wheelchair users have hands that are too small for even the smallest of those options.  Plus, fingerless is absolutely the way to go with gloves that need to go on a pre-schooler, and cutting the fingers off the gloves often makes them completely fall apart.  Not a good quality for gloves to have.

I've made Addy's gloves, and based on the number of people who complain about the lack of options for little hands, here's a rough tutorial.

Supplies I used:

• Sewing machine
• Pattern -- more on that below
• Optional: paper or Duck Tape to test the pattern.  Duck tape gives you the advantage of being able to stick and re-sitck to check the fit.  It's also chock full of latex, so use at your own risk.
• Fabric -- I like linen or cotton denim because they're durable, natural fibers, they wash well, and they can deal with moisture.  Bigger hands need a bigger piece of fabric, but for a rough idea you'll need enough to make 4 copies of a shape that's about as wide as the widest you can make your thumb and pinky spread apart, and as tall as your palm.
• Leather or suede -- 2 pieces that are each roughly the size of your palm.  You can buy small pieces at craft stores.  (Alternatively, you could use leather or suede for the actual glove, but I would still use a double layer if it were me.)  When you want to wash your gloves, I would use Murphy's Oil Soap.  It will help keep the leather from getting really nasty.
• Something to mark the pattern on your fabric -- I used a permanent marker, but a chalk pencil or tracing wheel would be more traditional.
• Ribbon -- 2 pieces that are each roughly as long as the widest you can make your thumb and pinky spread apart.  For width, it depends on the size of gloves you're making, but 3/4 - 1 inch is easiest to work with.  I had better luck with grosgrain than satin; the satin just kind of disintegrated when I sewed it.  (Alternatively you could just sew a tube of fabric that's roughly an inch wide, but then you'll have to turn a skinny tube of fabric right-side-out, so pick your poison there.)
• Hook and loop tape -- get the sew-in kind; the adhesive kind will only make you cry.  You'll need 2 pairs (scratchy & fuzzy) of pieces that are each about as long as the back of your hand is across.

Step 1.  Make a pattern.  I started with this one from http://www.apparelyzed.com/quadriplegic_gloves.html:


It's a little wacky looking, and if you download the image, you'll find that it's way too big for a small kid, but you can resize the image and get an idea for the dimensions and shape you're going to need.  (To you help you visualize how it actually fits: the wrist side is on the left and the finger side is on the right of the image; your thumb slips through the loop created when the two squares are lined up and stitched together.)

Besides getting it sized down for a 3 year old, I made a few alterations.  The first was to take off the wrist strap.  It's just too bulky for what a kid needs and it's just one more strap to have to fasten.  So I cropped that off of my pattern.

Second alteration I made was to add some ribbon to help make a loop so that the gloves are easier to get on (and able for a kiddo to put on independently).  That will make more sense if you keep reading.

The last change I made was to try to add a little "grow room" so that I didn't have to make a new pair of gloves every month.  I did this by extending the strap on the pinky side and using a longer piece of H&L tape.  The ribbon ended up helping with this feature, too.

What I ended up with is this:

Optional Step 1.b: Check the fit by making a test piece from paper or Duck Tape.  Things to especially check are the size of the thumb hole and the tabs that will wrap around the back of the hand.  Adjust as needed.

Step 2. Trace the pattern.  Your pattern is the finished size, and you're not going to add seam allowances.  Your grandmother or your Home-Ec teacher or whoever taught you to sew are cringing right now, but there's a practical reason for it: there isn't room for a seam allowance where the tab by the thumb is, unless you really like sewing with an 1/8 inch seam.

Step 3.  Transfer the pattern to your fabric.  Trace it directly on the fabric using whatever marking tool you like.

Step 4.  Sew.  Stitch directly on the lines you traced, leaving the 2 ends of the straps open so you can turn it right-side-out.  Cut it out with about a 1/4 - 1/8 inch seam allowance where possible.  Clip your curves and corners and turn it right side out.

This picture is from an early set of gloves.  Trust me, placing the long straight side on the fold and leaving the 2 tabs open is much easier.


Step 5.  Cut out the leather/suede piece for the palm.

Step 6.  Top stitch the leather to the palm.  This is the point at which you are making your gloves either left- or right- handed.  Be careful or you'll end up with 2 left gloves.

Step 7.  Attach the ribbon to the thumb side.  First tuck in the open end of the tab on the thumb side by about 1/4-1/2 inch so you don't have raw edges exposed.  Flip the glove so that the leather palm is on the top and insert the ribbon into the tab on the thumb side by about 1/2-1 inch (make sure the ribbon is print-side up at this point; if there's a top/bottom to the print, make sure the top follows the finger edge).  Stitch across to close the seam and catch the ribbon securely.

Step 8.  Attach the fuzzy H&L tape.  Keep the glove so that the leather palm is still on top.  Cut a piece of the fuzzy H&L tape that will fit on the tab on the thumb side.  Stitch it in place on the same side of the glove as the leather.

Step 9.  Attach the other end of the ribbon.  First tuck in the open end on the pinky side by about 1/4-1/2 inch so you don't have raw edges exposed.  Stitch across to close the seam.  Still keep the glove with the leather palm on top and bring the ribbon around so that it extends past the leather piece by about 1/2 inch.  Stitch the ribbon down with about a 1/4 inch seam allowance (yes, it's print-side down at this point).  Flip the ribbon around so that it's print-side out now and top stitch the seam.  If the glove is big enough, top stitch the ribbon along the length of the pinky tab to hold it nicely in place on the tab.  If the glove is too small to do this, don't worry about it.

Step 10.  Attach the scratchy H&L tape.  Cut a piece of scratchy H&L tape that's about 1/3 as long as the fuzzy piece from Step 8 (ideally this scratchy piece is at least 3/4 of an inch long).  Flip over the glove so that the leather palm is now on the bottom.  Fold the ribbon around the end of the pinky tab and place the scratchy piece of H&L tape on top, near the end of the pinky side tab.  This will be 5 layers thick: H&L tape on top, then ribbon, then a double layer of fabric, then the ribbon on the bottom.  Stitch it all in place securely.  Using a box and "X" shaped stitch path will make it more secure.

Step 11.  Close up the thumb hole by lining up the squares and stitching them together.  Use a box and "X" stitch path if possible (may not be possible with a tiny glove).

That's it.  Sit back and admire your work!

Milestone achieved

The baby gates downstairs have been taken down--woot!  It seemed silly to restrict Addy's access to her home when Nora was starting to try to dismantle the gates by shaking them violently.  Added bonus: with the gates gone, Addy can now set the table without assistance.

Moose and ...

Addy had another story today.  I'm curious where this one came from.  Sometimes I can pick out the TV influence for her stories, but this one, not so much.

There was a moose named Bird who was raised by a family of birds because when he was little he was adopted. He lived with them in their nest but he had a very hard time fitting in it. He also had a hard time climbing the tree with all four of his arms and legs. 

He had best friends named Nonnie, Shonnie and Ronnie who were geese. There were nine geese in all but only three had names. He met the geese at The Duck Pond when he went to get a drink of water. 

His bird family built their nest in his antlers when he got grown and he carried the birds with him when he went to the duck pond to visit the geese. The geese and the birds were friends also and shared a lot

Do these gloves make me look like Michael Jackson?

Time for new push gloves since the wheelchair is getting more use while the new braces get broken in.

Yes, she picked sparkly silver ribbon for the strap.  Why wouldn't she?  I used an old pair of jeans for the fabric; hoping for durable, comfortable, and the darker color should help hide some of the dirt.  They seem to be a good fit.  Addy was flying through Target earlier this week and made us run to keep up with her!

 

Dear Nora is finding being a "twonager" to be a tough stage, so she got a pair of princess gloves to wear, too.  Scary as it is, the same size pattern worked well for both girls.

New braces

Addy has new KAFOs now--yippee!

A more sophisticated theme for a more sophisticated young lady: zebra print with neon orange straps.  

This new pair also features a new trigger mechanism so that Addy can set/release the knee lock herself.  Hooray for increased independence!

No better time to start learning about advocacy

We had an IEP meeting last week and while we were waiting to get started the PT who works with Addy at school told us a story about a recent PT activity they had done.  Addy had gone to the front door of the school to practice opening the door and going through.  One of the doors is supposed to be motorized and open when you push a button, but it has never worked in the almost 2 years that Addy has attended school there.  

When they went back inside, Addy mentioned to the ladies in the office that the accessible door wasn't working and that it would be so much better if it could get fixed.  They said that fixing doors is Mr. Jeff's job and suggested that Addy and her PT stop by his office on their way back to class and let him know that the door isn't working, because, if anyone was going to convince Mr. Jeff of the importance of fixing that door, it would be Addy.  [I have the impression that the door issue is an on-going thing at school.]

So they did.  Addy knocked on Mr. Jeff's door and explained to him that the door isn't working and asked him to please get it fixed so she can use it.  No word on whether he's had a chance to work on it yet, but I'm super proud of Addy for advocating for it!

No more excuses

I have been kind of slow to get regular chores assigned to the girls, but they have both helped with loading/unloading the dishwasher, setting the table, and putting toys away lately.  So far they still fight over who gets to do their job first, so I have that working in my favor.

Stronger than steel

The Walking Wonder has officially worn out her beloved tall braces.  In 2 years she's had to have the rods extended 3 or 4 times, new rivets on the belt 3 times, one set of new Velcro straps... But she has walked, run, danced, and had a blast doing it.  In about a month she should have her new pair.  Here's hoping she gets 2 years out of this new set!

What really matters

Monday's clinic appointments made for a long (really long) day.  We arrived around 11:15 and finally left at about 4:00.  About 3 hours in, I was trying to keep both girls entertained and started doodling on a piece of paper.

Addy: What did you draw, Mama?

Me: I drew you and Nora.  Can you tell which one is which?

Addy: Yeah [points to the one on the right] this one is me 'cause she has straight hair and that one is Nora 'cause she has curly hair. 

Clinic Day

Clinic day was Monday.  We got great reports from everyone we saw--yay!  Urology was first with a renal ultrasound and consult to see how the new medication is working out.  Next was lunch, followed by neurosurgery consult.  The MRI results from last week show no change in the syrinxes and a continued recommendation to not take surgical action with the tethered cord since symptoms haven't progressed there either.  Next were OT and PT, both of whom were impressed with the progress Addy has made.

Now if we could just shake this sinus infection... Poor kid has been under the weather for most of a week now and finally starting to get better.  But I'll take sinus crud over stomach flu (which is hitting our school system really hard right now).

Hands down favorite patient all day

Addy had an MRI of her spine yesterday. All went well, but it was a long day of not eating for her (it takes 2-3 hours to get all of the images so they put kiddos under general anesthesia).  She did great with the whole thing!  Hoping for a thumbs up on the syrinxes and tethered cord, but we'll have to wait until clinic next week to find out for sure.

The Shopping List

The Precocious Preschooler told me this afternoon that we needed to make plans for her and me to go shopping and get dinner together.  I asked her what we needed to shop for and she told me we needed to go so she could help pick out a wheelchair for Little Sister so she can have one for when her legs are tired.  Heart strings are pulled.  I told her that we still have a stroller that Sister can use if she's too tired to walk, which she seemed to think was an okay answer, but I can tell she'll bring it up again.  I think it's as much her being sweet and looking out for her little sister as it is testing to see if she's as different from her sister as she is from her friends at school.