Sunday, 31 May 2009

• Things have been pretty rough around here for the past week or so.  Night time is a nightmare!  Noah, our best little sleeper, has been getting up a lot at night.  It started on Thursday.  He kept coming out of his bedroom, and finally at 1:30am, I rocked him to sleep, and put him to bed successfully.  Friday night he was up on and off until 3am.  Last night we let him fall asleep on his elmo couch in the living room and then transfered him.  He still woke up crying once, but Josh said Noah didn't get out of his bed that time. (I slept through that!)  He keeps saying his teeth hurt, so I'm guessing he's getting his 2 year molars.  Kayla usually wakes up once a night for a bottle.  It used to be around 4-5am, but the past couple nights Noah's crying woke her up, so it was earlier and multiple times.  She usually goes back to sleep without too much trouble.

  Hannah has also been waking up multiple times a night.  She rolls and scoots around in her bed and either ends up stuck on her stomach or completely sideways and hits her head, arms, and legs on the sides of the bed.  I discovered this thing online called the tucker sling www.tuckersling.com  , but for $60!  Holy smokes.  Last night I checked on Hannah after I put her to bed, and she was still awake with her feeding tube wrapped around her neck.  It wasn't tight, but I was upset because she always gets herself tangled in the tubing, and I'm tired of worrying about it.  I decided to make my own tucker sling.  I took a sheet we're not using and sewed it together like a big pillow case for her mattress, and a third of the way down, I sewed on a pair of Noah's underwear (he hasn't used them yet).  That way she can still move without hurting herself, and we can put her feeding line at the bottom of her bed so her arms and neck won't get tangled in it.  It sort-of worked last night.  It kept her butt in the middle of the bed, but she still ended up turning, so I'm going to try sewing the underwear in two places vertically, so she can't spin.  Also, I think it'll be better if I substitute the underwear for something similar to a cloth diaper cover.  That way I can put her on it and velcro it shut, rather than having to slide her in and out of the underwear.  So, it still needs a little tweaking, but maybe if I can get it to work right, at least we'll have 1 better sleeper.  Hopefully Noah's teeth will start feeling better soon, too.

  So anyway, I've been doing a ton of research online and in catalogs looking for adaptive equipment and toys for Hannah.  I want her to be able to play and have fun.  It's not fair that she has to sit in her chair and watch Noah have all the fun, although I think she does enjoy that too.  I found this swing that is made for prone position (on the tummy) called the Wingbo www.wingbousa.com  .  I talked to Hannah's insurance case worker to see if this would be covered because it would be great for building upper body strength.  She didn't know but is going to look into it.  I'd also like to get Hannah a real swing since she absolutely loved swinging with Josh at CAMDEN (a park designed for special needs children to play in too) a couple weeks ago.  I recently discovered that Hannah's special tomato chair http://www.adaptivemall.com/mpsmobfloork.html  . can detach from the floor base and attach to any regular chair.  I put it on my office chair, and she had a blast rocking and spinning around.  So, in addition to getting another office chair specifically for Hannah, I also wondered if we could somehow build a simple base for it to attach to and use it as a swing.  Josh thinks he can build a frame, although I'm not sure when he'll have time with all the other stuff he has to do.  I'm sure it'll be awhile.  Besides the swings, I'm looking into getting Hannah some toys that plug into her switch.  For those of you who don't know, there are all kinds of switches which basically act as a "play" button.  Plug the toy into the switch, push or manipulate the switch, and the toy does it's thing.  I'm planning to get Hannah a pink puppy fan (she's used this before and LOVES it), a Wall-E robot that also acts as an mp3 player, an octopus bubble blower, and a joke master (so she can interact with other people and make them laugh).  I'm also going to get her a couple of battery interupters so we can make "normal" toys work with her switch, too.  I already bought a couple of switches on ebay, and Hannah's communicator also acts as a switch.  The toys are expensive, but we'll squeeze out the money somehow because this girl needs to learn that there's more fun things in life than just watching TV!

  This past Friday Hannah had communication therapy in Madison again.  She used the eye gaze computer that looks similar to this: http://www.tobii.com/assistive_technology/products/mytobii_p10.aspx   the whole time.  She did pretty well until she got tired.  Apparently the system she was using is $20,000.  Her therapist said that Hannah would probably be able to use a smaller screen that would cost more like $14,000.  The plan is for Hannah to continue working with her therapist on it a little while longer, and if we find that it's the most effective and efficient way for Hannah to communicate, we could rent one (our insurance would pay), and after awhile, they could purchase it.  This system is AMAZING.  Eventually Hannah could tell us what she wanted or needed just by looking at the choices at the screen.  Of course, we're not giving up on her talking, but she's got to have a way to communicate until that happens.

  Kayla is singing.  She is so cute!  She's a fiesty little girl, too.  She rides in the double stroller with Noah when we go to Hannah's therapies, and she hogs the space, takes Noah's toys away, etc.  She pretty much runs the show.  Noah's not usually happy about that.  They do play well together sometimes, too, though.

  Noah has been obsessed with opening and closing doors.  He's becoming a little terror.  Of course, he's probably a lot less terrible than the average 2 year old, but he's still driving me bonkers.  He's figuring out how the world works, what is and isn't acceptable, and he's testing the boundaries.  The good thing is he still love to give and get hugs and kisses! 

  Here are pictures of the stuff I talked about earlier:

  Tucker Sling:

  

  Wingbo Swing:

  

  Hannah's Special tomato Chair (without the base it can be a car seat, could it also somehow be a swing?)

  

  Pink Fan Toy:

  

  Wall-E Robot & mp3 Player

  

  Octopus bubble blower:

  

  Joke Master:

  

  Battery Interupter:

  

  MyTobii Eye Tracker Computer:                  

  

  Okay...I have to go now.  Someday soon I'll upload pics of the kids...stay tuned!

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