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Tuesday, 27 October 2009

  • An Update...FINALLY!

    Hello to everyone who actually reads this!  I'm sorry I've been MIA.  Let's see the last time I wrote was back at the end of May?  Wow.  I'm trying to think of what's been going on since then...

    The summer was actually not very exciting for us.  Hannah had summer school twice a day, and I had to take her 'cause the bus didn't run.  The biggest issue with that was when another parent kept parking in the handicapped spot in the parking lot to run her kid in (she did not have plates or a sign and was clearly not handicapped).  Well, we ended up calling the police, and never saw her park there again! :)

    Okay, let's see...Oh!  We also were fortunate enough to have a ramp donated so we can now get Hannah's chair in and out of our house safely.  The handle to her chair actually snapped in half and has caused MUCH concern for her safety.  As of now, she has a loaner base, but we are in the process of getting her a new chair since it's time for one anyway.  The next big thing will be getting a vehicle, but this new chair she's getting is not crash tested, so she wouldn't be able to travel in it anyway.  Plus, we'll have my vehicle paid off in a couple of months and really need that extra money so we can start paying all our student loans again.

    At the end of the summer, the Mom's Group that I'm in at my church through a huge fundraiser for Hannah so that we can buy her a Hyperbaric Oxygen Chamber.  The fundraiser was $6,000 short, so we're trying to figure out how to go about getting the remaining funds.

    Hannah goes to school 4 days a week and absolutely LOVES it!  She's getting good at learning her colors (using eye gaze), and she continues to love books and music.  Apparently she has a new crush this year.  His name is Noah, and she gets so excited to see him.  It may be because he has the same name as her brother, but the teacher says he really encourages her and pays attention to her, and she likes it.

    Speaking of her brother, Noah is doing great!  He's talking SO much it's ridiculous, but so much fun...well, most of the time, anyway.  He still really likes playing with all his cars.  He likes books too.  He can count from 1-10 easily and we're working on 11-20.  He knows all his colors and has parts of the alphabet down.  Still not potty-trained, though.  Of course, he isn't even 3 yet.  I'm not pushing it, but it sure would be nice!

    Kayla is also doing great!  She started walking shortly after her first birthday.  She babbles so much now, and just yesterday she started to try to repeat words after me.  She's a very curious and wild little girl, and I just adore her!  She is not timid at all.  Watch out world, here she comes! lol  She's finally starting to get a bit of hair, too.

    Maybe next time I'll share some recent pictures...if anyone's still out there reading this?  Most of my family and friends are on Facebook now, so I keep up with them on there, but I figured I'd update here since I was asked to. :) 

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:

    tuckersling

    Wingbo Swing:

    wingbo

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

    special tomato

    Pink Fan Toy:

    pinkfan

    Wall-E Robot & mp3 Player

    walle

    Octopus bubble blower:

    bubbleblower

    Joke Master:

    joke master

    Battery Interupter:

    battery interupter

    MyTobii Eye Tracker Computer:                  

    mytobii

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

Wednesday, 13 May 2009

  • What an insanely busy month for us!  Ready for a novel?  Guess I should update more often so it's not so long.  Let's see...where to start?

    Hannah had her usual appointments on Fridays at the communication clinic in Madison and the horse riding therapy in Delevan, and she also had school on Mondays and Thursdays.  I took her to get a repeat hearing test last week, and of course the results were inconclusive.  This means that the next step is to do an Auditory Brain Response (ABR), where they'll hook up electrodes onto her head and measure the response in the nerve to different sounds/pitches to tell how much is being picked up.  She has to be asleep for this, so I'm still waiting to hear when they are going to schedule the test.  Besides those appointments, we had a couple of smaller fundraisers to work towards getting Hannah a home hyperbaric chamber.  The big fundraiser is going to be on Aug. 2nd, so mark your calendars!

    Josh took a week vacation in hopes of getting to relax and get some stuff done.  We were hoping to replace our bathtub surround with tiles, but it took us a lot longer than we expected because Josh has a bad foot/ankle/leg, and needed to rest periodically, and I was pretty busy taking care of the kids and didn't really have a chance to help too much.  The tiles are in, grouted, and sealed now.  It looks good, but we still have to fix the wall around the tiles and the ceiling above the tub.  It's quite a project.

    About a week after that, I wrecked my back pretty bad.  Josh's sister, a massage therapist, gave me a massage, and I saw my chiropractor last Friday and am scheduled to see him again this Friday.  It's feeling a little better, but it's still pretty sore.  It was a bit painful, but I was able to play my flute at church this past weekend, though.  It was fun playing it again.  It had been 2 and a half years since the last time I played in front of people, so I had to practice quite a bit to get my chops back.  Anyway, it was good, and I hope I don't wait another 2.5 years before I play it again.

    Noah is so excited about playing instruments too!  He plays his recorder, which he calls his flute, and he is getting better on the keyboard.  I can actually hear him trying to make melodies and not just pounding the keys all the time.  He likes to turn on the drum beats or pre-recorded songs and play along.  He does have pretty good rhythm, and he knows which notes are high and low.  Josh played his guitar for the kids a few weeks ago, and Noah was awestruck.  He wanted to play too!  So we ended up getting him a cheap guitar from Walmart because, well, he's still only 2 years old and we need to teach him how to respect instruments and take care of them before we buy him something more expensive.  He loves it though.  When I practiced my flute with Josh one night, Noah was so excited to be able to play along.  I don't really care what Noah ends up playing, but I love to see his enthusiasm and love for music, and if someday that changes to academics, or sports, or whatever, we'll support him no matter what he chooses. 

    One of his other interests right now are cars.  I think he has every car from the movie "Cars."  He randomly makes car revving noises and is thrilled to go out with mommy and help pull the car out of the garage.  He's talking so much!  I was letting Zando outside one day and Noah said, "Where'd Zando go?" I said, "Outside to go potty," Noah said, "I go outside and go potty too?"  I explained to him that Zando was a dog, and dogs go potty outside, and that Noah is a person, and he goes potty in his frog potty (no, he's not potty trained yet).  So ever since, Noah's been proclaiming, "I'm a person! I'm Noah, good boy!"  He's so funny most of the time.  We have started having issues with him running away from us.  Not sure how to stop that yet.  He has made the transition to the toddler bed fairly smoothly.  He does really well staying in his bed at night as long as he has his "money" (monkey) and "bank" (blanket), but nap time is a struggle.  He usually ends up sleeping on the floor.

    Hannah is now a pro at walking in a straight line with her gait trainer, so we've unlocked the wheels so they'll turn.  It's really hard for her to practice like that in our kitchen, though, because it's a straight path.  We probably need to take her somewhere more open with hard floors.  She has actually moved it a little bit on the carpet before, but still needs a little more ooomph.  She gets so excited to show us what art project she made in school everytime she comes home.  Her speech teacher records some of the things Hannah does at school into her communicator, and Hannah loves pushing the switch to tell us what she did.

    Kayla is a rolling fool and can sit up on her own with a little wobbling, but isn't quite crawling yet.  She is getting SO big!  She likes to explore things with her mouth...complete opposite of Noah.  She sure does give us an earful sometimes, too.  She's pretty happy most of the time and is finally sleeping in her bed at night!  She loves it when Noah plays with her, and when I put her in front of Hannah face to face, she starts giggling uncontrollably and gets all excited.  Hannah smiles.  It's adorable.

    Okay, so I think that catches me up to date.  I have a ton of pictures, but haven't uploaded to xanga yet.  I accidentally left my camera outside from Friday night-Sunday afternoon, and it was raining on and off, but miraculously it still works, praise God!  Uh oh...3 little children are getting hungry for lunch...better go!

Monday, 13 April 2009

  • Wow...it just dawned on me that it's been FOREVER since I've posted anything here.  So, let's see...what has happened in the past 3 weeks?  Well, I've been buried in my PowerPoint book trying to finish the class by Easter weekend, and guess what?  I did it...and got 100% in the class!  It is nice to be done with both classes, especially since I finished a month early.

    The past few weeks have been somewhat challenging with the kids being sick and Josh hurt his foot and could barely walk for awhile.  It's starting to heal, though.  Hannah finally started feeling better, so that was a relief.  I took her to the communication clinic a few Fridays ago, and they were working with figuring out where it would be best to put a switch for her to push.  She got to play with a computer game too.  Surprisingly, Noah and Kayla were really well behaved for the appointment.

    This last week Hannah had spring break.  It wasn't really that big of a deal because she only goes to school twice a week anyway, but it was nice to sleep a little later those two days.  Kayla started saying "dada" and Noah's really interested in the Cars movie.  Now that school is over I have a long list of stuff that needs to get done.  I'm starting with cleaning my desk and files, and then I have to deal with the kids' clothes.  It's a mess!  I was hoping I'd be able to put away all the winter clothes, but even today it started hailing!  So I have boxes of clothes everywhere.  Summer clothes, winter clothes that are too small, winter clothes that fit, and clothes that are too big.  AHHH!  I'd really like to have a garage sale this summer, but I don't know how that'd be possible.

    Anyway, everyone's sleeping now, and Kayla's been having rough times at night lately, so I should get some sleep, too.  Sorry this wasn't more interesting, but we haven't really done anything interesting lately...just getting through the school stuff.  Hope everyone had a Happy Easter!

Saturday, 21 March 2009

  • All 3 kids are sick.  Kayla has a double ear infection, and we took the other 2 in last night, and Noah has an ear infection in his right ear, but Hannah has pneumonia.  Noah and Kayla are a bit crankier than usual, but Hannah is absolutely MISERABLE!  She's been coughing and moaning for 2 days now.  Last Wednesday she was so tire she slept all day.  They're all on antibiotics, and we've been giving Hannah breathing treatments, but they don't seem to be helping a whole lot.  I'm not sure what else to do.

    I'm just wondering...do people who live in the south get sick like this all the time in the winter months, too?  I'm guessing probably not.  It sucks.

    Just to document it, Noah's been counting for the past couple of weeks.  He will just blurt out numbers anytime.  It's so cute.  He keeps forgetting six, though, so he says, "4,5,7,8,9,10"  Yeah, I'm not sure why he always starts with 4, but at least he's got the rest in order, right?  Kayla's been much more interactive and smiley lately.  She's so adorable!  I have caught Hannah saying "I Love You," multiple times now, but it's just all the vowels, so it sounds like "I---UH---ooh."  I almost cried the first time I figured out what she was trying to say!  Kids are awesome...but I really prefer having them healthy!

JP77

  • Visit JP77's Xanga Site
    • Name: Jenn
    • Country: United States
    • State: Wisconsin
    • Metro: Janesville
    • Birthday: 1/25/1977
    • Gender: Female
    • Member Since: 1/22/2006
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