Ten tiny toes...Ribbons and Bows...We marvel at the wonder
as our sweet Tessa grows!

Monday, October 31, 2011

Bynum Celebration

We got to be a part of something very special this weekend. We made a trip to Ulysses, KS to help with a surprise celebration for Sam and Karen's 3o years of ministry at Country View Baptist Church. It is incredible that Sam has pastored the same church for 30 years and we were so glad we got to be there to celebrate with them! Darin's brother Tommy, and his family, made it too...here are all the cousins right before the surprise :)

Parker loved every minute of our visit with Grandpa and Grandma!


This morning we got to spend some time at the Donut Shop before we left town...with our little Buzz Lightyear and Pink Skeleton!


~Whitney

Friday, October 28, 2011

Together!

Love capturing these two together!


~Whitney

Parker

Fun times! Chick-fil-A put on a little Fall Festival in their parking lot this last Tuesday. They had lots of animals to see...a little Shetland Pony and even a baby kangaroo. And lots of games to play and prizes to win.

Parker came home with a Lion balloon animal..definitely the highlight of his evening!


We are always so thankful for fun, free ways to get out-and-about and just enjoy life. And are so grateful for opportunities for Parker to have fun and feel just as special as he really is!!!

~Whitney

Tessa

As always...pretty in pink
Silly girl with her new ring
Pretty in pink again ;)
Yummy yummy ice cream!
~Whitney

Bday Time!

Darin's birthday was last Saturday...and we had lots of fun celebrating all day long!

First stop, McDonald's for breakfast while we had a showing at the house :)
Love my boys!
Daddy got in some sweet snuggle time with Miss Tessa
Then it was Breakfast Pizza for dinner
And Snickerdoodles for dessert! Cracks me up how Tessa's eyes are glued to the candle!
We love simple celebrations as a family...just doesn't get much better than this!

~Whitney

Thursday, October 27, 2011

"Strong Enough"

This is such a great song and such a good reminder of a powerful piece of scripture in Phillipians 4:13 that says "I can do all things through Christ who strengthens me." It is relevant at any point in time...whether it's right after a devastating diagnosis or in the midst of everyday routines. The strength that comes from the Lord can be as consistent as we allow it to be...seeking Him in all things, big or small, exciting or boring, heartbreaking or joyful. For me, I think it's realizing that my mundane is important to the Lord and that it requires as much dependence on His strength because I am always at risk of feeling incapable, inadequate, weak and broken.

MATTHEW WEST - "STRONG ENOUGH"
http://www.youtube.com/watch?v=A8JsRxVczmQ&sns=em

You must, You must think I’m strong
To give me what I’m going through
Well forgive me, forgive me if I’m wrong
But this looks like more than I can do
On my own

I know I’m not strong enough to be
Everything that I’m supposed to be
I give up, I’m not strong enough
Hands of mercy won’t You cover me?
Lord, right now I’m asking You to be
Strong enough, strong enough
For the both of us

Well maybe, maybe that’s the point
To reach the point of giving up
‘Cause when I’m finally, finally at rock bottom
That’s when I start looking up
And reaching out

I know I’m not strong enough to be
Everything that I’m supposed to be
I give up, I’m not strong enough
Hands of mercy won’t You cover me?
Lord, right now I’m asking You to be
Strong enough, strong enough

‘Cause I’m broken
Down to nothing
But I’m still holding on to the one thing
You are God
And You are strong when I am weak
I can do all things through Christ who gives me strength
And I don’t have to be strong enough
I can do all things through Christ who gives me strength
And I don’t have to be
Strong enough, strong enough
Oh yeah

I know I’m not strong enough to be
Everything that I’m supposed to be
I give up, I’m not strong enough
Hands of mercy won’t You cover me?
Lord, right now I’m asking You to be
Strong enough, strong enough, strong enough

~Whitney

Wednesday, October 26, 2011

A Verse

Ephesians 4:1 "I therefore, a prisoner for the Lord, urge you to walk in a manner worthy of the calling to which you have been called."

I get a verse of the day every morning by text from my brother-in-law...and this was today's verse. A perfect summary of where my heart is at and where I was coming from in my post yesterday. I described the desire I have to seek the Lord in all circumstances in my life as a sense of urgency...I want to walk in a manner worthy of the calling to which I have been called and I believe the calling on my life is very clear.

~Whitney

Tuesday, October 25, 2011

"My Thoughts"

I just recently decided to start using Labels on my posts. I've noticed in reading other blogs, it has been really helpful to search through posts based on certain topics like equipment, diagnosis, etc. We have been learning so much about equipment these days, and it has been invaluable to read about other people's experiences and see a glimpse of what's out there.

So anyway, if I got them all categorized correctly, to date I have 57 posts that I found appropriate to Label "My Thoughts". Post 57 was written over a month ago and post 56, over a month before that. I have known it for some time, and maybe some of you have too, that I seemed to have fallen off the wagon. It's not that things aren't impacting me, or that I don't feel like I'm learning anything new...I think maybe after trying to make my life routine and normal, it has shut down a few things in me. I have let so many opportunities to write, slip away. The Lord has taught me some really neat things in the last few months, all of which formulated some really great posts in my head...but I let too much time pass and let too many other things get in my head, that not only did they fade for writing...but I have also seen the lessons fade in my life.

In the very beginning of this journey, I had a person tell me that what I was writing about and the way I was writing, seemed fake. It cut through my soul, especially knowing how vulnerable of a place I was writing from. And I think what I am learning even more recently, is that it's when I'm not writing, when I'm not allowing the Lord to stir my soul, that I tend to be fake. It is so much easier in anything in life, to just sit back and let it roll on by. Embracing opportunities requires effort, passion, commitment, and time. It is my desire, more than anything, to allow the Lord to change me and my life according to His plan and His purpose, but to truly embrace those opportunities for change, will take a different approach than the one that I've had.

After Tessa's diagnosis, it seemed impossible to face any waking moment without clinging to God's word and His promises. I can do life without acknowledging this urgency for the Lord, but it is incredibly routine and normal, and not the direction I feel like my heart is leading. There are too many things about my life that are far from routine or normal...and I believe that to be very intentional. I just don't think dull and boring is what He intended in our relationship with Him...just like I don't think it's what He intended by the design of my life.

I'm kinda hoping I'm just dangling off the wagon, so I can just pull myself back up! I'm praying for the Lord to open up my heart and for the ability to start embracing opportunities :)

~Whitney

Sleeping Beauty

So Peaceful So Beautiful!


If Tessa could hold our fingers every minute of every day...she would.
I think I'll be okay with this bedtime routine for a really long time!

Tessa and Mommy's finger ;)
Tessa and Daddy's finger ;)

Now this is tired...after therapy last week..slept through her entire diaper change

Tessa is just stunning to me! God created one beautiful little girl!

~Whitney

Friday, October 21, 2011

Tessa Makes SandRidge News!

SandRidge started this wonderful program called "Change Together" several months ago, where contributions help make an immediate impact on people in need in the community. A few months ago, two co-workers and members of the Change Together Committee, surprised me in my office with an iPad...one for Tessa to call her very own! All Change Together recipients are recommended by employees and the Change Together committee meets at least once a month to review the submitted needs and determine how the funds will be used. It was very unexpected and incredible to realize how much this gift was going to help changes Tessa's life!


Have loved seeing this sweet face on the SandRidge Homepage all day long today!


Sarah Piowaty, Communications Specialist at SandRidge, wrote such a beautiful story about it all and I wanted to share:

Change Together Update – Tessa Bynum

Recently, Change Together funds helped provide an employee’s special needs daughter with an iPad - a tool, it turns out, essential to her cognitive development.

Tessa Bynum, the daughter of SandRidge employee Whitney Bynum and her husband Darin, was born in April of 2010 with Congenital Cytomegalovirus. Whitney had contracted the common virus during pregnancy, and while usually harmless to adults, it can have serious complications for an unborn baby. In this case, the virus attacked Tessa’s brain, vision and hearing, damaging her visual cortex and causing severe hearing loss and epilepsy. Brain damage to her cerebral cortex resulted in cerebral palsy.

Tessa was placed on epilepsy medication which she continues to take to avoid seizures. After having virtually no hearing for one year, her life greatly improved in June of this year when she received a cochlear implant in her right ear. “It’s been amazing - she can definitely hear us now!” Whitney said. “We used to talk with our hands to get her attention, and now I can say her name and sit with a straight face, and she’ll respond.”

While Tessa’s vision has improved, likely due to the resilient nature of a baby’s brain, Whitney and Darin won’t know exactly how she sees things until she can talk, which may not be for another year or so since she went without hearing for the first year of her life. Her body’s muscle control remains severely impaired due to the cerebral palsy. She can generate thoughts, but her body struggles to perform certain actions.

Earlier this spring Tessa’s therapists encouraged the family to begin using an iPad, as many of the apps have been known to help improve learning and development in special needs children. Whitney and Darin could not afford to buy an iPad but were eventually able to borrow one. In just a couple of months the improvement was incredible.

“She’s come so far and has really progressed in her recognition of things,” Whitney said. “She’s also starting to remember what she’s seen before. One app is a storybook where the screen changes with a touch. In one of the stories baby animals appear at certain times from the corner of the screen, and she now knows this – she’ll look in the corner just before they appear.”

The size of the iPad is a tremendous advantage as well, since Tessa is limited by how she can learn due to her physical condition. Her stander, which allows her body to be upright, has an attachable tray. The iPad sits on the tray, close enough for her to see and touch it. Being able to touch the screen and point to images has improved her ability to focus on objects. “Her therapist is now positive that she is purposely pointing to things,” Whitney said. “She’s amazed at her progress and has no doubt it is because of the iPad.”

Allowing Tessa to choose the apps she uses is another reason the iPad is so essential to both her cognitive and emotional development. “Choices are huge with her condition, because there are so many things she can’t choose,” Whitney said. “She has to wear her leg braces, she has to wear her cochlear implant, she has to take her medication. The simplest of choices are so important, and with the iPad she can pick what app she wants to use.”

The physical independence that the iPad gives Tessa also makes a big difference. She needs help with almost everything she does during the day, but using the iPad gives her time to be alone in her stander, and be on her own.

Now that the iPad is theirs to keep, Whitney feels comfortable allowing Tessa’s nannies and therapists to use it with her. “We were so careful how and where we used the borrowed iPad, we didn’t want anything to happen to it,” she said. “Now, she can take hers to therapy and use it, and I feel comfortable with her becoming more dependent on it. It’s a big relief.”

In the next year Whitney and Darin will focus on using the iPad for more direct communication with Tessa. While the iPad is fun and educational, Whitney says right now it is Tessa’s only means of communication with them until she can talk.

“It’s hard to imagine her life without an iPad,” Whitney said. “It truly opens her world. I am so incredibly touched by this gift, and hope those who contributed can truly grasp the difference they have made. The company has been incredible with all of this - from my boss and my co-workers to senior management, the generosity and understanding has been amazing.”

Whitney keeps a blog about Tessa - click here to view the blog post along with videos of Tessa with her iPad.

Wednesday, October 19, 2011

Tessa's 18 Month Pics!

We got Tessa's 18 month pictures made...not a lot of smiles, but some really sweet faces!!

The night before I was putting together a prop to take with us so we would know what to expect with positioning her, nothing too clever, just her highchair with a couple of blankets thrown over...

Glad I experimented the night before though...

cause I got ~ half naked and cute as a button...

This is one of my new favorite pictures!
~Whitney

Silly Parker

For a little boy that either runs from or frowns for the camera...he was in rare form the other night...

The chairs previously used for limbo, became the perfect set for karate-kick-Parker and then came:

"look at this, take a picture Mommy"... "take one now, Mommy"... "take it again, look Mommy"

...and so I did :)







Sweetest little boy I know! So much fun, so enthusiastic, so kind, so caring...just an incredible little soul!


~Whitney

Saturday, October 15, 2011

Success!

We got a few new speeds added to Tessa's chair today...took her out on the driveway this evening...and look what happened....




I don't remember the last time I laughed this hard! Please know, this little chair turns A LOT faster than it goes straight...safety first!

I think we've decided she's got a need for speed like her mama! Makes it a little easier to understand 'cause and effect' when you start getting a little dizzy!

She has a very solemn look on her face the whole time...pretty sure she was just as surprised as we were by what she was doing!

I should note too, just how incredible this is! Tessa does comprehend what happens when she moves the joystick, but it is very difficult for her physically, to hold her arm in place to maintain a constant movement. She has never moved her chair like this...not until tonight...and she's only had this chair for a week. The changes in her are just amazing to us!!!

~Whitney

Friday, October 14, 2011

Positioned for Success

Thanks to Ms Melody, Tessa's amazing PT, Tessa sits so much better in her chair now! After some chest strap adjustments, some added foam to the footplate, the toggle moved back and the armrests raised...our Little Miss is sitting quite wonderfully in her powerchair now.

Like Melody says, she has to be 'positioned for success'!






And yay for the ramp Daddy built in the garage for Tessa and her new chair!

Good job Daddy, you're the best!



~Whitney

Thursday, October 13, 2011

PWC Day 3

It is so fun to have a new way for Tessa to play outside!
Yay for a new set of wheels!!






~Whitney

Tuesday, October 11, 2011

PWC Day 2

I promise not to post all 365 days worth of Tessa's power wheelchair experiences...but there will be plenty, at least until the excitement wears off...
(if it ever does ;)



~Whitney

Monday, October 10, 2011

Busy Week

This is a busy week for us! Karen came to help us this week while Kayla is off getting married! We are so excited to have Grandma around for a few days and are praying that Kayla's special day is amazing and wonderful!

Our house is showing today at 11:30! We had 2 showing requests over the last couple of weeks that we had to turn down because they interfered with other things that were already scheduled, so we were glad to get it ready last night to show today. I have been praying that the Lord will grant the lookers some understanding...considering the first three things they will see when they walk in will be our latest addition-a tiny power wheelchair, a Rabbit stander and a Superstand stander. Also, we have the big-and-bulky Special Tomato seat addition in our kitchen! Ha~ I guess if anything, it makes it clear how bad we need to move! :)

Tessa has an appointment with Dr. Brannan this afternoon at the Children's Center. Originally it was just a check up, but the timing is actually perfect because Tessa has been a little under the weather for the last few days. Hoping it's nothing and glad the doc can help us figure that out today.

Amanda will be coming back tomorrow to spend some evaluation time with Tessa in the pwc (power wheelchair). She will actually be coming tomorrow, Thursday and Saturday afternoon to get in the 3 times this week.

Wednesday afternoon, Darin and I will be meeting with the Special Needs Director of the Yukon School District to discuss our options for Tessa in a year from now if we haven't been able to get moved into the Yukon school district. Tessa's SoonerStart therapists encouraged us and said it never hurts to get acquainted with the school district we will be working with and give them a heads-up that Tessa is 'on her way'. Relationships are very important to us and we are excited about becoming familiar with the individuals that will be involved in her care in the near future. We are getting a little nervous since our house has been on the market almost 7 months now. If we can't get it sold before winter, we'll probably have to take it off the market and wait to put it back up next spring. They will start Tessa's transition to the school district a year from now...so that will be cutting it really close for us to get moved into the Yukon district in time. We are not sure what will come from the meeting this Wednesday, but we are praying for peace about the timing of everything.

Thursday, Amanda will be coming that afternoon for her second evaluation time with Tessa and then we will have our normal PT at 5:00. Also, Tessa's size 1 stander is scheduled to be delivered on Thursday! We were so thankful to hear how quickly they were able to resolve the mistake and are excited for Tessa to finally have her very own stander with all the parts and accessories that will make it that much better for her!

We have decided to incorporate some Occupational Therapy (OT) at the Children's Center per a suggestion by Tessa's physiatrist. Tessa and I met with Jenny this last Friday for her initial evaluation, and going forward, Ms Victoria will be taking Tessa on Friday mornings to see Jenny. We are hoping it is a positive and fun thing for Tessa to do. They will mainly be focusing on self-care and playtime. OT is a little tricky with infants and toddlers, so we'll just wait and see what progress she begins to make. This will likely be a temporary thing because when it starts getting cold and yucky outside, we probably won't want Tessa getting out and about.

And Saturday afternoon we will see Amanda again for her 3rd visit this week.

Never a dull moment! :)

~Whitney


Sunday, October 9, 2011

Powerchair Delivered!

With her serious face on...let the adventures begin!!


Ready to go!


Ok, now it's fun!


It didn't take her any time at all to figure out the toggle switch that makes it go. I have a feeling we are going to start seeing some big-independent changes pretty quick!

And yes...Parker got his turn :) Figure watching her big brother motor around in it could be a bit motivating! And at the end he gives his approval "this is a good chair for Tessa" ~ thanks bub!



~Whitney

Wednesday, October 5, 2011

Trouble with Comments

I've had a few people tell me that they haven't been able to post a comment on the blog. I've been doing some reading and it seems to be a problem with blogspot.com in general. I've tried to adjust a couple of settings based on suggestions I've read, but if the changes I've made don't work, we'll just hope Google figures it out!

~Whitney

Tuesday, October 4, 2011

Special Tomato Demo

Melody comes on Monday mornings for PT with our nanny and yesterday she brought this Special Tomato Mobile Floor Kit demo for Tessa to try! By the time you add all of the necessary accessories, this can turn into a $2,000 - $3,000 seating system (http://www.adaptivemall.com/mpsmobfloork.html). We are so thankful for the opportunity to try it out and see if it would be a good piece to add to Tessa's collection.

It is interesting to realize how much a new piece of equipment changes Tessa's perspective. It was really fun to have her in it in the living room with us and have her be more on our level. She gets a little taller perspective in her stander (which is hard work) and then a lower perspective in her nap nanny on the floor (total veg time). But this piece is kind of right in the middle and since she is seated she gets to relax and play a little more but is still able to sit appropriately and see what is happening all around her! The only other thing we have currently that is similar to this, is Tessa's highchair...but as a standard piece of baby equipment, it is missing a lot of things that Tessa needs for good support and posturing.

Tessa is just hilarious when she gets to try something new. There is no mistaking that the world revolves around her for the moment...and she lives it up! Kayla got a precious video of Tessa sitting in this seat...hopefully I can get it posted soon. But for now, here are a couple pictures (it's no tiny contraption...that's for sure!)


Here's Tessa joining us at the table for dinner! (note: Parker is less than enthusiastic about pictures anymore)

It is too fun for them to be able to sit next to each other!

The huge tray is great for play time! I should be ashamed, but this was the first time Tessa has played with Play-Doh...it was a big hit and she loved having her big brother help :)


And last but not least...some giggles! What can I say...I'm addicted to them...


~Whitney