Our Week

Monday was MLK Day, so the kids had school off.  It was a beautiful day with lots of out door play.  Lizzy had two friends over.  They made muffins, had a tea party, and made necklaces from left over washers.

Therapy

 

This is how Joy counts – there is no two!

This crazy sweet baby – she loves her Mama and hummus!  She has reached a new developmental milestone – separation anxiety.  If I leave the house, she is so sad.  Her face just melts.  She asks to go.  Breaks my heart.

Just fun – a hidden pictures poster with stickers came in the mail (it was an advertisement), but Sammi and I had fun!  Bella exploring – notice those feet avoiding any tactile contact.  Using the cane in PT, he does better with his pre-cane walker.

Wednesday night for YW we had a Modesty Photo Shoot – all degrees of formality.  Fun to dress up!

Thursday Lizzy had a 5th Grade Strings Roller Skating Party.  She had a great time, but it’s moments like this that I really miss Bec.  Typically she would have been there helping out.  Growing up, moving on..

Friday Houston had some cold temperatures and ice – therefore H-town shut down.  School was closed.  Jason worked from home.  Another day at home to slow down and enjoy the slower pace of life.  Our ST (from Virginia) braved the arctic weather and came to visit Brother.  Sorry, but this video is so funny about our weather here:

With a daughter in college, a new car payment (and car insurance that then went up), health insurance premiums that went way up, lesson prices that went up, generally everything going up, and no pay check going up, we are having to do a little belt tightening around here.  Jason and I have been talking about things we can do, but really we have been doing belt tightening for so long, we have most things at their rock bottom.  Food is really our largest expense.  So for our Friday night date night we went through Costco and HEB comparing prices.  Jason made me a spreadsheet <3 !!  He speaks my language!  He can now tell you to the penny which items are cheaper to buy at Costco and which at HEB per unit price.  We now also have the standard prices to compare to grocery store sells.  Love it!  He even color coded it!

 

Brother makes me laugh – he loves to feel the water on his hands (like in the first picture), but his new thing is to turn around and feel it behind his head (2nd picture).  My favorite thing about early childhood is the sense of wonder and discovery.  Brother explores, but he does it differently.  Love it! 

Saturday night Liz and Jes went to Grace’s 12th birthday party.  Fun!

Joy loves swinging and watching the ipad at the same time. 

Sweet hugs

Working away at the braille.  (Must have chocolate)  TVI has encouraged me to become a TVI.  It is an endorsement, so you have to already have a degree, which I do.  There are two programs in Texas – one at SFA and one at Texas Tech.  They are mainly online.  She talked to Region IV (our educational authority in the area) about me.  I’ve thought about it.  I think it would be great to have the knowledge for Brother’s sake.  And I don’t know how I could ever work when the girls are older if and when we need the money for retirement.  How could I work with two adults with developmental delays/intellectual disabilities?  I don’t know.  Right now we are still pretty intense in the therapy and doctor world, but in a few years? Maybe while they are in school – that’s still 15 more years for Joy.  I don’t know.  It’s an idea to bounce around in my brain.

Lizzy has joined a craft club.  Her first project was to make this card for Grace’s birthday.  She is so excited!  She went to Activity Days this week and made a bag for all of her AD stuff.  Cleaning out her room, she wanted to throw out her old art projects , but wanted some memory of them.  So we took a picture and here it is.

Bella had her big ARD this week on Tuesday.  ST, OT,and PT were added.  I’m sorry, but what a joke.  ST is a group lesson once a week that she was already getting cause she was in the classroom.  OT and PT are just consultations for the teacher.  We really needed to do three months of testing and documentation for that?  Really all of the changes just created more work for her already over-worked teacher.  (Have I mentioned how much I love her teacher??  I adore her!)  Anyway, Jason built Bella a new walker for school.  The classroom environment is too crowded for her to use it in class, but for the hallways (going to the bathroom, to motor lab, that type thing) it is perfect!  Jason made it and painted it pink.  We put her name on it.  We showed her last night and she walked all over the living room and entryway, giggling the whole time – I so wish we’d gotten it on film!  ( I still think it’s funny that she HATES the expensive walker specially designed to help her, but this $20 PVC walker her Daddy made, she loves! Whatever works! )

Since Jes and Liz were off to a party, we treated ourselves and Sammi to Thai food!  So yummy!  Sammi loved the night just with her parents and no one else (funny how the three littles didn’t bother her. )  :)

Because it’s true – this is Jessi 90% of the time.  Reading somewhere

(Her shirt says, “So many books, so little time”)

Jason served on a federal jury this week.  His advice to everyone is “never go to prison.”  The trial involved 8th Amendment rights.  Interesting, but very sad.  His view from the jury room. 

Alex’s Songs

We are attacking Alex’s lack of speech from all directions.  Three hours of speech therapy a week, being in a house where he is surrounded by sounds and talking, using tactile symbols, and singing.  When Brother does vocalize, it comes out in a sing song voice, which got us thinking about his brain.  Speech and I have been discussing where his brain bleed was.  We know that it mostly destroyed his vision center or where the brain would interrupt the images the optic nerve sends to the brain – if his optic nerve worked.  She is wondering if he also had damage to his speech center.  It’s in the left side, middle-ish in that hemisphere.  We won’t know for sure till we go back to Neurosurgery in April and we can have him pull up his scans.  If it has been damaged, there are two thoughts.

1. He is young and can build new neural pathways, so we keep at it.

2. Stroke victims that lose that region of the brain use a specific therapy using song to pull out bits of language from the brain.  But…here is where there isn’t a lot of research…does the successfulness of this method depend on language already being in the brain?  Generally it’s older people that have strokes and they WERE verbal and now use this therapy.  Well, Brother wasn’t even two months old when he had his brain bleed, so there was no language already programmed into his brain.  So we are going on the idea that he can store information, he is a smart boy.  I have been singing with and to him all the time to try and access the singing part of the brain (luckily on the right side of the brain), but I realized that just singing all the time wasn’t as precise and targeted as I wanted.  I was thinking about how a word or a phrase will trigger a song in my head.  And a light bulb went off.  Brother needs short, specific songs for each activity.  Hopefully with repetition they will sink in. 

So last night we sat around and made up songs for daily activities.  I have stored them here so that I can reference them until we all get them stuck in our brains!

Eating Song

Drink Song

Diaper Song

Tubby Time

Car Song

Sleep Song

Name Song

We use the clean up song from Daniel Tiger.

Our Week

This week was finals at the high school.  They had half days all week – Sammi LOVED it!

Playing Split the Ward.  Now that church is at 9AM, Sunday seems to stretch on FOREVER!

Just love exploration!

Learning to slide – feels safer on your tummy!

Crazy orange mushroom – love the shape!

Joy is loving her bed!  I am loving that she is sleeping in it!!     Cuteness I discovered on her bed

A fairy puzzle (a sick day for Jessi)                                     Cousin It!

LOVE, LOVE, LOVE that they are playing together more and more!   More water exploration

Pruning time for the fruit trees         Whenever Jes gets new harp music, she always plays it on the piano first

Liz and I on our Bayou walk – love that she loves nature as much as I do!

Therapy time

He has learned to take turns – awesome!

Brother and his pre-cane walker.  Bella loves his walker, not her very expensive, fancy one.  So this weekend Daddy made her a PVC walker too.  Whatever it takes!

Ortho appointment for Miss Bella.  Don’t let that smile fool you.  It was only out for the selfie.  She has so much PTSD, it’s so sad.  Fight her for x-rays.  Hold her hands so the doc can examine her.  Sigh.  She was in such a state.  I had to text OT (immediately following doc appt) so we could do calming activities.  Poor baby.  In good news her leg is 15 degrees straighter than 6 months ago!  Maybe in four more months it’ll be straight???

5th Grade Strings Concert

Practicing outside                   Singing “Gold” in the bathroom      Birthday cookies for a friend!

Alex loves the trampoline             “Reading” the newspaper like Daddy

Friday there was no school – so we went to Mercer Arboretum.  It was fun to see what was alive in January!

Jessi loved the silver fish.  When I asked why, she said because it was different than the others.

This is a Bur Oak – Lizzy said it must be a cold tree to be saying “brr!” all the time. : )

For Becca

Sammi was running everywhere taking pictures and this cool video:

Later at the park, so the babies could enjoy the day as much as we were!

Listening to Jessi’s music

Playing outside                                                        Super Why!

Friday night Jason and I went out for a date – Mediterranean food!  I LOVE it!!