Sunday, October 23, 2011

HELP!

I realize I troubleshoot better than most, but more heads might help :)  Most of what I learn about caring for a special needs child comes from other parents or caregivers.
amazing bed :)  The blanket on hanging over it is a homemade weighted blanket
my family and friends helped make one day! (with all the wetting through we have a couple, but could use more!)
We still need ideas to cover the glass on the windows w/o blocking precious sun up here in northern mn (:

Abby's car sickness and controlling bodily functions have been on the top of my list lately.  She's actually making headway on staying dry much to my surprise.  We've been putting her on the toilet for at lest four years now.  So, if you're complaining about potty training I might not be a sympathetic as you would like me to be.  Anyway, it seems like she stays dry if she's made to go every 3 or 4 hours, but otherwise she has no qualms about just going in her diaper.  I'd almost not complain if she would consistently stop dirtying in her diaper.  We've had stretches where she'd go every night for a month or so and then she'd go back to going in her bed.  We've gotten used to cleaning her up after she's fallen asleep, but her newest one is putting me over the edge!  She goes during the night or early in the morning when her diaper is already pretty full; thus, making a big stinky mess more often than not.  This means changing her, her clothes and entire bedding every morning.  Her bed is a godsend as Andy and my cousin built it, but it's downside is the difficulty with changing sheets.  The mattress fits to a tee in the area to keep her safe, but it must be lifted in order to change sheets.  I've been experimenting with different diapers, but it is also driving me crazy as I get whole bags of worthless diapers.  If you've found an effective diaper for a size 12-14 child, I'd love to hear about it!

My other problem in need of assistance is car sickness.  Abby has ever changing sensory needs.  They range from under stimulated to over stimulated without any warning either way... just unsettled.  She used to love to swing, to spin and go on big roller coasters.  She would be happy and content for the entire day if we went to an amusement park, but on a special trip we took for her she turned green and that was that. We used to swing her from the swing we installed from the ceiling in our living room at least once a day.  We did a "spinning program" (can you believe there is such a thing?) for awhile, but now she can barely swing back and forth let alone in circles. She also would listen to Vivaldi on her ipod and it would instantly calm her until one day she pulled them out and would have none of if from then on.  We even tried several different headphones and a myriad of music genres before we gave up on that altogether.  Her wheelchair instantly used to calm her after she started walking, but now she's in and out of it constantly.  Going on a walk was "money" but now... maybe, depending on the day.

Vomit in general is her answer to a couple different things we're thinking, but yuk... next please!  Any help on the car sickness?  I've got nothing.  We've tried everything I can think of, but I'm out of ideas.  We're seeing a doctor in another week or so, but doctors often just troubleshoot along with us as they seem to want me to tell them what we need.  Most of our "out of the box" solutions have come from other parents or caregivers.  She does seem to puke when she gets too tired also.  If she has to leave the house after school at all during the week or if she's not ready for bed by six, she's likely to turn green and throw up.

Arggg.....

On a side note...
She'll play with other colors, but not the new style with all the legs connected
These are all board books.  The tigger book also comes in a purple background
Her other favorite is Curly's Friends, but I can't find a pic of that right now
She likes other Usborne "That's Not My _______" books too!
Rainbow Zebra is a cloth book.  I've bought the material to make this book
and have had it made too
This also comes in white which she likes as well
This is one of the few items that is still sold in stores, but it's expensive and breaks easily
with her rough play
Singing Larry 
The arm bands.  I can't often find these ones that have bigger arm holes
old guitars of any kind or nylon strings to re-string the ones she has
She breaks the guitars after awhile, so we try to pic up used ones whenever we can
she loves to be pulled in a sled, but will fall out of normal ones
This is an ice fishing one, but is a bit pricey new
she also likes the veggie tales God Loves You Very Much book
This isn't annoying, but worth mentioning all the same.  Abby has a series of toys/books that she likes.  SHE DOESN'T LIKE NEW ONES!  On occasion she will warm up to a new one, but the priceless look on her face when an old broken toy is replaced with a new one is so worth the effort it takes.  We routinely find her toys at Goodwill, savers, yard sales or Amazon because they're all out of date or too expensive to pay full price when she breaks them so quickly.  The following are pics of her favorite stuff, so if you happen to have something you're getting rid of... :)  Or if you're a yard sale person, maybe you can keep an eye out for some of our things!!!
xylophone puppy... not the alligator or any other one (we've tried them all...











5 comments:

  1. So... about changing the bed. When I was pregnant, I read on a website somewhere to have several mattress pads handy. When you make the bed: put down one mattress pad, and then a sheet. Then, put down another mattress pad and cover it with another sheet. That way when she leaks through her diaper to her sheets, you can rip off the top layer of sheets and padding, and have a fresh layer ready to go without having to change everything immediately.

    I don't know if you've tried this or not. Hope it helps!

    Hannah

    ReplyDelete
  2. I haven't tried this. Good idea, but I'm not sure I could fit more than one set of mattress pad/sheets on the bed because it's in so tight, but Andy is talking about moving it out and extending the height, so I might give it a try when he does... thanks!!!

    ReplyDelete
  3. i'll keep an eye out for her toys!

    ReplyDelete
  4. Saw this in Wal-Mart and immediately thought of you...

    http://www.google.com/products/catalog?hl=en&q=sheet+savers&gs_upl=1498l6005l0l7830l22l10l2l0l0l0l1099l3041l2-4.7-2l6l0&bav=on.2,or.r_gc.r_pw.,cf.osb&biw=1920&bih=946&um=1&ie=UTF-8&tbm=shop&cid=9576465299215025270&sa=X&ei=KZ_AToyxG8bv0gH94vXDBw&ved=0CCwQ8wIwAA

    ReplyDelete
  5. Thanks Sarah & Hannah!
    I've been looking for a sheet just like that one for cribs that would stay in a twin bed. I loved it for the crib :)

    ReplyDelete

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