Lexi Update as of 8/30/11

Occupational Therapy/Early Intervention/Orem Rehab
Lexi still receives OT twice a month. We are currently working on the "pincer" grasp, as well as other activities that involve the right hand and arm. Constraint induced therapy (CIT) (talked about later) will also be through OT. Luckily, her OT through Early Intervention also works at Orem Rehab where the CIT will be given.

Physical Therapy/Orem Rehab
At PT, we work a lot with the right leg/ankle/foot. Activities they have her do: soccer indoors, soccer outside on long grass, running up and down hills, walking in long grass (forces her to pull her foot up), stretching, bracing, stair climbing, etc. She now only has to attend Orem Rehab every 3-4 weeks because she is doing so great! Her PT recently had us get Lexi a trike, to help with the use of both feet/legs at the same time.

Primary Children's Rehab
Today was her checkup at PCH Rehab, and she did great! They looked at how well Botox worked for her (wonderfully), observed her through play, and discussed many things with me. Botox Treatments happen every 3-6 months, and so we scheduled her next treatment, on October 18. Lexi will be receiving the same treatments at the same sites (calf, thumb, forearm, ankle), as well as on her hamstring, pec, and lat; aka her whole right side. They also are going to have Lexi undergo constraint induced therapy where they will cast her left arm/hand so she can ONLY use the right. This, of course, is going to be extremely difficult for her, but will help her brain become more aware of the right side. She will only have to do this for a short amount of time, due to the extreme frustration it will cause (more on this later). They are also having her go to NW Orthodics again and look into getting an additional brace for her right leg. This one will be smaller, and requires more strength to wear, which, luckily, she seems to be gaining. This brace (called, Dafo) will be in addition to her others. Her nighttime stretch splint/brace now only has to be worn for 45-60 min/night at a 10 degree angle to provide stretch; it has been shortened because she does not tolerate the stretch well for extended periods of time. They also had us buy a children's pull/chin up bar to put in our doorway so that Lexi can play on it daily. The purpose of this is to work on stretching the right arm up, and increasing strength. She will also be staying in gymnastics (indefinitely) because of the assistance it provides to her right extremities. As she grows, the tone in her right side increases due to the different rates at which bones and muscles grow, so we will continue OT, PT, Botox, bracing, rehab, etc for a while still. An additional MRI will not have to be given unless something changes.

Nutrition
Lexi has a cow's milk protein intolerance which also leads to forms of soy protein intolerance. She is able to eat some dairy, but cannot have straight milk, or some ice creams. She currently is drinking almond or coconut milk. They are having us mix in something called Duocal (a new product), which is pure calories (42 cal in 1 T). We also sometimes mix in a scoop of Alimentum (the hypoallergenic formula she has been on) into her milk as well. She is on the small side, and we are trying to encourage her to eat as much food as possible. There is only so much you can "make" a kid eat, so we are keeping track for 3 days of her food intake and it will be analyzed by her Nutritionist.

Overall
Overall, Lexi is doing incredible! We are so proud of her and all the hard work she does! She is one tough cookie with such a happy demeanor, we couldn't ask for a better or more special little girl! She is a smart little cookie, as well, and we've been so lucky that none of her seizures, or her stroke affected anything but the right side! We work really hard with Lexi, and it is good to hear that we are doing what we are supposed to! Parents are the biggest advocates for their children, and more often than not, the best therapists as well and we have been so blessed by our Heavenly Father with the capacity to encourage his sweet spirit to reach her potential.

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up.to.date.

Terrell
internship ends on the 12th.
taking "fun" classes this semester to gain more credibility in his field.
building Axe the aweseomest cage EVER.
handsome as can be.
works a little bit less.
travelling for the 5k Foam Fest this month.
has been making lots of oreo truffles. delish.
most likely going to be working for a bike shop as a bike tech soon.

Kellie
has mono again. joyous.
just finished re-reading Fablehaven.
reading lots of children's discipline books.
trying to stay on top of doing dishes.
worked on an ULTRA cute project, post to come.
wants another Bearded Dragon (a tiny baby one) named Raxtus.
slammed her finger in a door and took out a chunk of her finger.
almost done Christmas shopping (booya...i hate the holiday shopping rush).
still trying to lose at LEAST 10 lbs.

Lexi
doing great at therapy.
only has to go to Orem Rehab every 3-4 weeks instead of every 2 weeks.
loves to swim at 7 Peaks.
growing big and tall.
dances all day long.
knows more animal sounds.
likes to play Soccer.
got her fist bike (a pink Radio Flyer trike!).
has some AT-TI-TUDE.
thinks she only needs one nap, when really still needs 2...and I'm not kidding.
trying to load her up with lots of calories.
likes to play Mommy.

Family
Kellie and Lexi are headed to Iowa next week (thanks Dad!) while Terrell heads to Las Vegas Interbike Convention.
We will be staying in Wymount til Christmas Break.
Terrell and Kellie were finally able to attend the temple together (thanks Mel!).

What a find!

Look what we found for sale at WalMart:

What a find! Too bad she cost a lot... :)

Oh well! Totally worth it!

Washrag Head

Lately, Lexi has become obsessed with washrags. Especially when they are wet. She likes to "clean" things - including herself. Terrell and I found her with a wet washrag on her head the other night...where does she keep getting these?

These are such attractive pictures....

Dora + Lexi = BFF

The other week, Lexi had been having some hard days. But, not to worry! Lisa and Derek saved the day by bringing Lexi a giant Dora doll. She loves it. Her favorite is to sit by Dora in front of her little mirror. The day after they gave it to her was Sunday, and Lexi tried to bring Dora to church. I told her no. According to Lisa, she was "just trying to share the Gospel". Haha!

Thanks Lisa and Dewek!

hey dora, let's be pals!

cute pic....and lovin' the balloon string hangin in front of her face!

Lexi at 18 Months

Name: Lexi

Age: 18 months

Weight: 19 lbs 6 oz

Height: 30 inches

Hair color: Blonde with a hint of strawberry

Eye Color: Blue, blue, blue

Occupation: Toddler

BFF: Luc Jones

Favorite Color: Purple or Pink

Favorite Drink: Almond and/or Coconut Milk & Juice

Favorite Show: Dora the Explorer

Favorite Character: Dora the Explorer

Favorite Food: Graham Crackers and Baby Cheetos

Favorite Pastime: Pulling out all the kitchen towels from their drawer

Favorite Song: See Me Run

Favorite Dance Move: Twirling

Favorite word: "No"

Favorite Snuggly: Penguin

Favorite Book: "My First Words" by DK Publishing

Likes: coloring, Dora, playing dress up and mommy, screaming, playing stickers, getting her nails painted, swimming at 7 Peaks, being the center of attention, and playing soccer

Dislikes: bedtime, naptime, not getting her way, stretches, when she can't go outside, when Luc is gone, and when she gets in trouble

Other: Pediatric Stroke Survivor, hilarious, friendliest toddler on the block, drama queen, great helper, and a little Stinkerbell.

Lexi and her buddy Luc, taken by ALL Photography, in SLC at 17.5 months

Me & My Girl

With Daddy being gone so much for work, Lexi and I have become good buddies. We are together all the time, and we like to have a lot of fun!

Things we like to do:

Have "girl time" by window (and sometimes actual) shopping

Painting our nails

Swimming at 7 Peaks

Reading stories

Coloring

Watching Dora

Snuggles and kisses

"Cleaning" and "Cooking"

Peek-a-boo

Sing silly songs

Dance like crazy

Go to all her appointments (not really a "like" tho...)

Puzzles

Talk on the phone (literally or otherwise)

My best friend

Kellie & Andi

yeah... we rock.

Little Momma

Terrell rigged my baby sling so Lexi could take Penguin around.

How cute is this?

Lexi Moments

Lexi has been full of moments today...


> Dumping her mac 'n cheese in between 2 sippy cups (without the lids, of course), and her bowl. Oh, did I mention there are vanilla wafers in there too? Delish.
> "Lexi, do you want to see Grandma and Grandpa in Iowa soon?"
    Her face lights up and she says "YAY!" and starts clapping :)

> I couldn't find her braces and shoes this morning and where did I find them? In the oven of her play kitchen. Roasted braces with a side of shoe anyone?

> She has been so excited that I let her watch a few Dora shows today. As soon as the "we did it" song comes on, she raises her arms in the air, stands up, and starts breakin' it down! Go Lexi, Go Lexi, Go, Go, Go Lexi!

> During our laundry adventures today, she sat in front of the dryers and stared up at them, like she was watching TV. And then she clapped.

> Another laundry moment: I was washing her Dora blanket and she saw that it was in the dryer. She looks at me with a concerned look on her face, points to it, and says "uhhhh!" "Lexi, it's getting clean!" "Oh." Then she waves at it.

Yep, that's my girl.

Kaylie's Wedding

Terrell's sister, Kaylie, got married on August 11th in the Logan Temple. We spent the day up there for all the wedding festivities. It was great to see family and actually get to spend more than 30 minutes together! Kaylie married Alex Earl and he is a great guy!

Congrats, you two!

Lexi trying on her flower girl dress

Kaylie, getting ready

Lexi and her Great-grandma Goates

Family :)

Mommy and daughter

Snuggles with Grandpa

They were buddies

Me and Brandon (brother in law)

Terrell, Alex, and Marcie looking ultra hot.

Me and Nicole

Add caption

i kinda love this picture

FINALLY! They took forever to come out!

Grandpa read a sad and tired Lexi a story

Daddy/Daughter dance

Daddy and Lexi during the Daddy/Daughter dance

my cute family

Picked by herself.

Lexi picked her own outfit. Minnie mouse jammie shirt over a white shirt, jean shorts, and 2 different shoes.

You go, girl.

hehe :)

is there something wrong with my outfit?!

why are you laughing at me, momma?

helping sweep the balcony!

i'm outta here!

Lexi's Therapy Party

Lexi does her Occupational Therapy through Provo Early Inverention (PEIP). They celebrated the summer with a fun BBQ at Kiwanis park....

Getting ready to head out!

Fun with Daddy!

Coolest thing ever....swimming pool w/pebbled ice and plastic spoons!

Clapping for the marching band !

our family. (i know i look pregnant, but i'm not...i'm just fat! :) )

Here comes the Timp View Band!

The kids loved the marching band and I thought it was so awesome they were willing to come play!

Provo Fire Dept. came!

Their boots are about as big as Lexi!

She DID NOT want to wear that fire hat!

So Daddy did!

The kids got their pictures taken with a pretty princess! There was also a pirate for the boys!

Of course, as soon as we got home, Lexi wanted to wear her fire hat!

Other things from the party:

They had a raffle for prizes and Lexi won a sheet of stickers! She was so excited!

There were booths with info about different support groups, therapy programs that had games and prizes

There was a toy/clothing exchange - Lexi got a pair of white church shoes, and a fun toy!

It started DOWNPOURING in the middle of the party! Yikes!

They got to make glitter picture frames with popsicle sticks :)

The potato salad was delish.

I was surprised about how many people asked what was wrong with Lexi (braces, etc). I don't mind telling people, but it was interesting to have to explain to sooo many people what her disability is; I didn't expect that at a therapy party! Lexi had one of the most "visible" disabilities there.

I was grateful to have a fun party where kids who have "disabilities" - either physical, mental, or emotional could all have fun playing!

Thanks, PEIP!