Our Week

Sitting at church I looked down and saw that the bracelet that Jessi was wearing was ISU colors, so we had to text it to Becca!   Thought I would preserve for posterity Jessi daily breakfast.  One cup of hot chocolate.  Stop, wait for that to kick in.  Seriously, she is as bad as a woman needing her daily coffee fix.  Then after her shower, scrambled eggs with cheese.

Jessi’s friend’s birthday – she lives on the street where lots of the middle schoolers get picked up.  They all gathered and covered her in confetti.  Joy loved it!

Girl Scout meeting for Joy – snack and making a troop shirt

One excited little girl as all of her new Treeschoolers and Signing Time DVDs came – and a signed picture from Miss Rachel – loved our Kickstart backer rewards!

Lizzy and I cleaned out the pantry – really cleaned it

With a name like Joy, she gets to see her name displayed all the time!  She loves it!

Joy loves her teachers – what a relief that is to me!   Busy working.

Two finallys – we have lived in this house for ten years and we finally had the garage door fixed!  It just wasn’t a priority until Jason needed to be able to store his bike safely.  And finally I got a fellow SN Mom to walk me through how to reset the parameters on Bella’s pulse ox machine.  So grateful!

Outside – Lizzy and I found this awesome mushroom.  I think they are called honey mushrooms.  We loved how they grew all on top of each other.  Sammi found this poor Monarch butterfly – still beautiful!  The girls playing.

PT – Brother has another new thing – functional scoliosis.  So not bone related, but he is curving his body none the less.  So lots of strength training.

Little Miss would prefer not to use her body at all.  She likes to come home from school and curl up in the fetal position around an ipad and veg.  Well, PT thinks that is terrible.  So to watch the ipad after school, she has to sit up (no worries, there is lots of support).  And miracle of all miracles – she actually walked in her walker!  At her monthly eval, they were thinking that she needs a bigger one. 

After a long day of therapy and running, Jason and I grabbed the camera and tried to record the colors of autumn.

Brother’s newest thing – everything has to be tasted.  He licks everything!  He loves to carry his blankie like this now.  He also loves to listen to machines – refrigerator, dish washer, laundry machine, and dryer.  He is using his senses to explore his world.

Friday a friend gave Sammi a teddy bear for her birthday and she got another Bearkat award!

Bella’s school work – this means she touched paint!

Sammi’s Birthday Party!!

Saturday Sammi had a couple friends over for pizza and cake and then they went and watched Catching Fire!

Grandma and Grandpa got here!!  We look forward to their visit every year!

Grandma on Facebook with Becca

Joy always steals Grandpa’s hat – she loves it!  These two cuddling

Jason had to take this picture – crazy tech babies!  We got to see Linda this week.  Lizzy spent the night with her on Friday and Saturday.  They were both in heaven!

Me reading a book to the girls – Jason caught me!

Our Week

My happy smiley boy during Speech.  I evaluated him based on the developmental scales for the blind and his speech is currently sitting at 4 to 6 months.  Not cool when you are days away from being two years old!  I talked with all of his therapists and his TVI, and we have come up with a plan.  It involves “total communication”, a fancy term that means using more than speech to communicate.  We have ordered through the school and federal quota funds some amazing tools from the American Printing House for the Blind.  Our request has to go through Austin and the Texas School for the Blind, so I’m hoping around Christmas everything will arrive.  Everyone feels that Brother is smart and that augmented communication will not be his norm, but hopefully with all of this support, he will be able to turn the corner and start communicating!

 

Sammi spent Monday on a field trip to Texas A&M.  It was such a neat opportunity for her to be able to go and see the campus and have a tour.  She loved all of the talk about traditions and the sense of family.  She has started to notice all of the A&M signs around town that proud alumni put up.  Glad you had a good time Sammi!

Because she’s adorable

These two love to play ball, rolling and taking it from each other.  LOVE seeing them being friends!

My crazy Bell – she still fits in the sink at five years old.  She was having a great time on the swing set.  And she has finally, four months post op, starting to take some steps again!!

Huge – I hemmed Joy’s pants.  With Down syndrome comes a long torso, but shorter arms and legs.  As Joy would say, “I did it!”  I watched a YouTube on it, and then hemmed her pants for school.  Only about a million more shirts and pants to go!

These two putting on a concert for us!

Terrible picture, but Brother got a new Braille book – yeah!  He is just so cute!

It was a sick week.  We passed around a bug.  Every single day I had one person home with me.

This girl – while she was home sick she watched DC Cupcakes all day long. Personally I couldn’t work in a situation with that much drama going on all the time!  She loves the cupcakes and what they do.  The next day I had to get my poor finger checked out  - I did a number to it back in August and still can’t bend it.  I realized that I pass a gourmet cupcake shop on my way.  So for $3.50 I bought a cupcake (really?!  Do you know how many cupcakes I can make for that much?) for my little girl who is always helping and loving.  She was delighted!                                        

Just because her hair was cute that day and it won’t be much longer that she’ll let me put bows in her hair.

Joy’s scribbles – if you look closely there are some letters emerging!!  She is so proud of herself.  I thought this was such a cute seasons chart with Joy’s hand.  She is so adorable when she sleeps.

Sammi got a new shirt from her Path class.  That field trip really made a difference in her life.  She came up to me later and asked me about going to A&M.  Could she do that?  The angels were singing in the background!  How exciting that her eyes were opened to possibilities and she was willing to look at them.  Unfortunately, A&M doesn’t have her major.  But what a huge thing for her to even concern leaving Houston!

Our Joy is looking so grown up and so tall lately!

Friday at 6AM found Lizzy and I at the hospital for a procedure.  She has had a cyst on her hand since May.  It bothered her enough to mention it to me occasionally.  I would always tell her that we would talk to the doctor about it at her checkup (Feb).  Well, it hit me that our insurance is going from bad to worse come Jan 1st, so we better get this taken care of.  Her pedi sent her to a surgeon.  Her surgeon removed the cyst on Friday.  Sweet Lizzy was brave and so cute.  Kids come out of anesthesia so differently from each other.  Lizzy was so confused – when she went to sleep she was in an operating room surrounded by nurses and doctors, when she woke up she was in a recovery room with a recovery nurse and me.  “How did I get here?”  “Where are the doctors and nurses?” And she kept crying asking if she could go back to sleep.  She was so precious! I was so proud of her – she kept asking for the OR nurse, Taryn.  She wanted to thank her.  Evidently Taryn held her hand until Liz was under and she wanted to thank her for that.  Sweet girl.  Lizzy is spared any embarrassing photos because I left my phone at home.

Feeling well enough to make bracelets.  That night Lizzy was able to have friends over. Glad she was doing so well!

Just for fun, Jason and I went out to Lowe’s and dreamed of a remodeled kitchen.  We chose our cabinets, backsplash and counters.  It would be beautiful!  Now I just need a ton of money and somewhere else to live while they do it!  It is fun to dream!

Saturday morning the Ball cousins met at the temple for baptisms.  Very cool to see everyone in the temple. Cameron, you were missed – get better!

The girls wanted their normally positioned pictures as well.  Since the three of us go once a month, Sammi really likes looking at the pictures of the different months as the seasons change.  Oh, and Jessi told me this week that she is planning on serving a mission – yea, what a great goal!

Kris and Zachary stopped by.  He really is such a cute little guy!  Thanks for the visit Kris!

The piano recital – it was the best of times, it was the worst of times.  It was one of the those times that my special needs world and my “typically developing” world flew into each other’s faces.  Sitting perfectly still and silent for two hours is impossible for the best of us.  Add an extra chromosome and forget it!  Typically this is a divide and conquer event – one of us watches kids while the other participates as the proud parent.  Not possible tonight as Sam had a Choir performance to get to before the piano recital was even over.  Bottom line, the girls played well, Sammi was able to make it to her performance and have fun there, and it’ll be a long time before I bring my babies to another piano recital!

Lizzy’s two songs

Jessi’s two songs

Sammi’s three songs

Klein’s Broadway Review – Sam is on the top row, fifth from the left