Sunday, September 15, 2013

Our Week

Brother tried a lollipop.  Now he’s wondering where these sticky things have been all of his life!    After school shots – decompressing for Joy and homework for Sam.  Joy’s teacher told me that she is falling asleep once or twice a day at school.  They have a very structured day with lots expected from them.  So proud of her hard work!

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Poor Jason – Tuesday his surgeon cleared him to sit down again.  Wednesday he busted his incision wide open.  “Shelly!!” I heard as blood flowed.  I banned him back to bed.  Poor guy!  This recovery is taking forever!!  He is starting to go a little stir crazy.  He wouldn’t make a very good stuck in bed for months pregnant person!  Good thing we don’t have to worry about that!IMG_6383

Sammi is working so hard in school.  I am so proud of all of her efforts!!


IMG_6389Brother had so many big appointments this week – one was his O&M eval!  Orientation and Mobility help people with visual impairments to move around  - cane skills, learning to cross streets, to get around in their environments.  Since he is now walking, he qualifies for an eval.  Not to be prideful, but we blew the socks off that O&M instructor!  Way to go Bro!!  He was so impressed with Brother and his environment!  And – we qualified for two sessions a month!  Two times a month we will work on getting around in the home and community.  Awesome!




On Tuesday his TVI brought over a brailler!!!  I am so excited!  Now I can get serious about learning braille!  I have started labeling his environment with braille.  I am brailling one of our night time books.  It’s awesome!  We write Becca a letter.  Lizzy wrote her teacher a letter.  Braille is cool!


In case you were wondering, it says, “piano.”






Brother was also signed up for DARS – Blind Children’s program.  We’ll see.  I’m not one for state oversight or for case managers.  I always turn down case managers from the insurance companies.  I bristled when the nursing agencies tried to do it.  I am the case manager for my children.  But everyone, even my fellow anti-big government therapist recommends DARS.  They are primarily focused on vocational training.  So there are camps and opportunities that Brother will have access to as he ages.  So we’ll see.  We’ll give it a try and see what happens.



Crazy boy is so quiet in the living room, but in the bathroom, he’ll vocalize!  (It’s the echo)  Craziest place Speech has ever done therapy, but she’s cool with it.  :)


Tuesday night was Open House at Mittlestadt.  Lizzy loved being an Ambassador.  She loves that kind of thing!    I’m so proud of my Lizzy – she gets Joy into the school building and delivered every morning to her teacher.  We have been trying different places to drop her off, and I finally like this one.  I had to get special permission, but now we drop off at the bus circle – only buses and day care vans are allowed there.  If that little girl took off running in the car pool line……oh my goodness……..the palpitations!  Since I look like a day care, no parent is any wiser that we cut in line in the car pool lane!  I actually had a teacher open my door the other day and ask me which day care I was!  Really?  I just have a big family.  Oh well!  It worked out well.


This series – Bella wants to jump so badly.  But you have to have working knees to jump!  She was giggling so loudly during this!


On Wednesday night the girls made cake pops.


Crazy Joy had an audiogram and ENT appointment.  Had to get everyone (Liz and down) out of school and take them with me, otherwise they have no way home since I have to provide transportation.  Oh well!  It as traumatic for Bella.  She absolutely refused to go into the weighing and measuring room.  She literally put on the brakes on her wheelchair.  My poor baby!  She has had so much done to her.  I am sorry my sweet girl!  The only way I could get her over the hysterics was giving her my phone and letting her watch this video over and over again (thank you Miss Rosie for doing some crazy things in therapy some times – they help us get through the yucky times!)

Well, it wasn’t news that I was expecting.  Joy has moderate to mild conducive hearing loss in the low frequencies.  So men’s voices and vowels sounds.  And the beautiful part, they don’t feel that it’s correctable.  She already has tubes and there aren’t any obstructions. Awesome!  We go back in three months hoping that it’s a fluke, but feeling in my gut that it isn’t.  So we’ll brush up on our sign language especially for group settings with all of that background noise.


Friday we played Rummikub, Jessi’s favorite game.  She had been invited to a Friday the 13th party, but decided not to go.  Being scared spit less just didn’t sound like her thing, plus we had to be up early for the Rodeo!  Joy has invented her own version of Rummikub.  It’s pretty awesome – it involves turn taking and identifying numbers.  Yea!


Saturday we went to the amazing Baytown Special Rodeo.  Everything is set up for children with special needs.  It was incredible!  Everything was free.  Everyone was super kind and went out of their way to make it a truly special experience for the kids.  We will be back next year!!


When we got there they asked if we wanted any special helpers, I didn’t know what that meant, but said we’d try.  Oh my!  These two sweet ladies are angels!!  They each were assigned to one of my girls.  They were awesome!  They allowed my big girls to go off and have fun.  Sammi, Jessi, and Lizzy had a blast – they rode horses, they played games, they ate.  All without having to be my hands and feet.  They were free for a few hours to be kids.  I am so thankful!


Brother touching a rabbit!                         Signing “goat,” but not touching :)



              Touching a cold water bottle!


Watching and dancing to the music


Thank you to these angels!  Thank you to everyone who had this day possible!!


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