Tessa's iPad ~ What a Gift!

Here's Tessa playing her Forest Friends Piano app on her iPad! The app has pictures of a Forest Friend on each piano key, and when she taps a key the little Forest Friend floats out of the top of the key like a bubble. The black and white keys are the perfect color contrast for her and not only can she hear the music play, but she can see the result of her touching a key by watching the little bubbles float up. Such a great app!

A couple of Tessa's other favorite apps are the Baby Touch Peekaboo app and Happy Babies app. The colors are so vibrant and perfect and all Tessa has to do to read a story is to keep tapping the screen. Each time she taps the screen the story will continue. She has actually gotten to the point where she knows the stories so well that you can sit and watch her predict with her eyes where the next action will come from. For example, on the Happy Babies - Play Farm babies, it says "Hello Mommy Sheep" then it says "Where are your babies?" and then from the right side, the little lambs come bouncing onto the screen and it says "Hello, bouncy lambs!". It is so amazing to watch Tessa anticipate where the babies are going to show up in each part of the story. Such a clear picture of how much she is really understanding these days.

Our next undertaking with the iPad will be to start incorporating communication apps. It will be a matter of consistency, but we hope to start using the "Yes/No" app and the "Verbal Victor" app. The Yes/No app is just that, a screen that has a big green box with "Yes" and a big red box with "No". This app will give us the ability to reinforce Yes and No and also begin to teach her how to communicate them to us. The Verbal Victor app gives us the ability to upload pictures of Tessa's stuff: her pacifier, bottle, baby food, juice, any of her toys, and even a picture of her stroller outside. The goal will be to present 2 pictures to Tessa at a time and begin to let her make choices by touching one of the two pictures on the screen. With the Verbal Victor app, we are able to record our own voices saying what each object is...so when she is choosing an object, not only will it be her very own item, but it will have our voices speaking what the object is when she chooses it. Our goal will be to have Tessa start making choices regarding what she will wear, where she would like to play and what she would like to play with, and choices to let us know when she is hungry or thirsty and what she would like to have.

It is all a process, but we are so excited to have the exact tool that we need to get going. We don't know where we would be without Tessa's iPad. It opens up a whole new world of independence, play and communication for our little smarty-pants!!!

~Whitney

Just Tessa

Our beautiful little girl! She is changing so much these days!!!

Tessa and Darin

I think she is pretty fond of her Daddy too!

Tessa and Parker

I think they like each other...just a little

Another 'Thank You'

The Tye family are relatives of Darin's on the Bynum side. Kristi and her 3 precious kiddos have surprised us with many packages over the last year. They have been so thoughtful, sending hand-made cards and special little gifts for both Parker and Tessa. We received another very special one on Saturday and I wanted to share a little of the 'thank you' I sent to Kristi:

• Kristi, thank you so so much for the precious package of gifts we received this morning. Oh my goodness, can I just tell you how amazing it is...you sent us exactly what we were needing for Tessa. Our assignment from Hearts for Hearing therapy this week was to find Tessa her own baby that she can learn to point to and love on. We have been talking about her following commands and were going to start trying to teach her to point to her baby's eyes, ears, nose, mouth...brushing her hair, etc. And I'm sitting here looking at this sweet baby ya'll have sent her and it has SO MUCH more that we can teach her. She has a bracelet, and belt, she has her own teddy bear, she has a shoe that ties and a shoe that velcros, she has socks on, a purse on her shoulder, and bows in her hair. And we really needed her to have a soft baby so she can try and hold on to it.

• This all may seem very simple, but I am so overwhelmed right now with how the Lord provides for our EVERY need. I am just amazed right now to feel so loved by you guys and by our Heavenly Father that he allowed ya'll to send us EXACTLY what we were in need of and SO MUCH MORE. There is so much emotion tied to so many things sometimes...like buying Tessa a baby. I always figured if I ever had a little girl, I would buy her a baby that she would love and play with like it was her own baby...instead I was facing having to buy a baby that my daughter could use in therapy. A baby that will hopefully help my sweet little girl listen to instructions and learn how to talk one day. A baby that is educational in nature, most importantly. You have gifted me with something that was a bit of an emotional burden for me...and I am just so touched.
  
  Your family has been such a light to us in the last year. There are no words to adequately say 'thank you' for all that you have done. We love you. We thank you.

~Whitney

Tessa and her new baby doll!

Tessa These Days

I thought I'd write a little about what things look like for Tessa these days:

• She is still on Trileptal, 0.75 mL 3 times a day for seizures - we like to think that these are starting to correct themselves and will hopefully find out more at her follow up neurology appointment on 9/16.

• She is still on Prevacid, one dissolving tablet a day for reflux - we have seen improvement with her reflux too and she is handling more and more activity and tummy time!

• I'm not sure I've ever mentioned it on here, but Tessa has been on a 1 mg tablet of Melatonin for about 5 months. This has been our saving grace! At one of her appointments before she turned one, we happen to mention to her doctor that we had spent the entire last year up with Tessa every night until at least midnight if not later...needless to say we were desperate. Her doctor told us that kids with sensory issues sometimes need an extra dose of Melatonin to help them 'shut things down' and learn to distinguish night from day. He also said that kids with brain damage sometimes lack the appropriate levels of Melatonin in their brain to help them go to sleep....so with both points being applicable for Tessa...adding Melatonin to her evening routine has been the ticket! It has been such a blessing to watch her have peaceful evenings and slowly prepare herself for sleep....instead of stressful evenings full of moments where she gets scared and trying to get her to calm down and finally rest.
  

As of her 15 month check up appointment on 8/1/11 (we were about a month behind):

• She weighs 18 lbs 10 oz and is 29 3/4 inches long - because of how long she is, she is wearing 12 months clothes in a lot of things...but her little waist is so tiny that she still has lots of 6-9 month shorts/pants and skirts that fit her too :)
  

• She is now taking Lactulose, 2.5 mL twice a day - this is to help with constipation as a result of her diet and some affects of the Cerebral Palsy -- we are hoping to start seeing some weight gain since starting Tessa on the Lactulose, so far her appetite has seemed to increase a little and she struggles a lot less when trying to potty. Now she'll go without having to be in her stander and the help of gravity ;)
  

• She is still taking 4 oz bottles of formula about every three hours with rice cereal mixed in - she has been on Gerber's Good Start Gentle formula for months now and has been doing really well with it - formula will be Tessa's main source of nutrition for quite some time, it has been so nice to find one that agrees with her and is easy on our pocket book too ;)
  

• She is doing so wonderful with stage 3 baby foods - we still have to run a few of them through a hand-held food grinder, but she is doing so much better with changes in consistency and textures

• She definitely eats a good lunch with meats, fruits and veggies every day and depending on our evening scheduling, we've been doing our best to incorporate dinner too

• Kind of exciting...we are brushing Tessa's teeth! She has had such an aversion to 'weird' stuff in her mouth...and it took her a little bit to get used to the idea...but now, brushing her teeth is routine!! YAY!
  

On the therapy front:

• She has physical therapy twice a week: Mondays and Thursdays

• She has Auditory/Verbal therapy once a week on Tuesdays - she's doing really great with her right CI and enough time has passed now that we will start putting her left hearing aid back in too
  

• She has vision therapy once a month - she has a follow up with her ophthalmologist on 9/14 - hopefully we will address the laziness in her right eye and try and get a solution for that
  

Tessa's physiatrist would like for us to add Occupational therapy for Tessa once a week through the Children's Center as well. We've been thinking about trying to work that in with Victoria during the week somehow.
We are about to meet again with Tessa's SoonerStart Resource Coordinator to write her new IFSP (Individualized Family Service Plan). It's really hard to believe it's been almost a year since we wrote her original IFSP after finding out her diagnosis.

• We are still waiting on Tessa's Rabbit stander and her Manatee bath chair. Both orders were put on hold because of insurance authorization issues...but hopefully that has all been resolved and we will be receiving her own very soon!

• Tessa has just about out grown her first pair of DAFOS! We will be making an appointment very soon to get her fitted for a new, more sturdy pair.

• It's time for a medical stroller ~ we've gotten the most we can out of the strollers we have...but they just aren't cutting it anymore. We will be getting some demos (hopefully this week) to try out and see what we like. It's been 6 months since we submitted our orders for the stander and bath chair...so we need to get with it on this stroller deal if we want to have our very own any time soon. Hopefully we are trilled with one of the ones we are able to demo and are able to make a quick decision to order one. It has gotten very frustrating to watch Tessa be so uncomfortable in her strollers...it will be really really nice to have one support her in all the many ways that she needs support!!

It's really hard to believe Darin is going back to work tomorrow and Parker is starting school. We are very excited to share that we have our nanny team in place too! Ms. Kayla will be joining our team, handling Mondays, Tuesdays and Wednesdays and Ms. Victoria will be handling Thursdays and Fridays! Kayla had a chance to spend a day with Darin this last week and Ms. Victoria will be working with her all day tomorrow on her first day! It has been incredible to watch the Lord's provision in our lives. We couldn't be more excited about these two precious young ladies that will be taking care of Tessa. We couldn't have picked a better team to love and care for her and challenge and motivate her through this next season of life!!

~Whitney

Yay for Pigtails

Tessa had pigtails for the very first time tonight...I think she rocks them!

~Whitney

My Ebeneezer Stone

To my oldest sister Hillarie,
Thank you for the amazing memory book you made me. I can't imagine the amount of time, energy, thought, love and kindness that went into such a precious gift!

Your commitment and dedication to pray for Tessa and for us has been truly overwhelming this last year. You embody so many great and wonderful things. It is amazing to witness everything the Lord has for you in this life.

Thank you for establishing such a memorial in remembrance of what God has done for us in this last year.
Thank you for loving and praying for us the way that you do!

A couple of weeks ago I received a package in the mail from my sister. She told me she had been working on something for me and was excited to finally send it to me. I received the package on the exact one year anniversary of Tessa's hospitalization and diagnosis. Inside was a memory book, full of a magnificent creation of a variety of blog posts that I have written over the last year.

The first page was titled "Ebeneezer", which means "stone of help" and clearly explained Hillarie's purpose behind the special creation of this book:

1 Samuel 7: 10-12
10 While Samuel was sacrificing the burnt offering, the Philistines drew near to engage Israel in battle. But that day the LORD thundered with loud thunder against the Philistines and threw them into such a panic that they were routed before the Israelites. 11 The men of Israel rushed out of Mizpah and pursued the Philistines, slaughtering them along the way to a point below Beth Kar.
12 Then Samuel took a stone and set it up between Mizpah and Shen. He named it Ebenezer,saying, “Thus far the LORD has helped us.”

The place was important, because around 20 years before, the nation had suffered a terrible defeat and had surrendered the Ark of the Covenant at the same place (1 Samuel 4:1). Now, the place could be remembered for something great, instead of something terrible.

Samuel knew the nation needed to remember this amazing victory, which came to a humble and repentant Israel. This battle was by the Lord, not by Israel, so he named the stone Ebeneezer, which means "stone of help".

Samuel knew the Lord had done a great work, yet he knew there was much more to be accomplished. So, he knew it was not finished, yet he could say, 'Thus far the Lord has helped us'. God helps us thus far at a time, and His past work is a pledge of future help.

Some of what Hillarie wrote:
"I pray that this book is a reminder, an Ebeneezer stone, that will help you to remember all the ways that "thus far the Lord has helped" you. I love you and pray for God's continued victory and glory through your family's journey. Love you, Hillarie"

And some of what Lindsay wrote:
"A year has passed since the devastating news of Tessa's diagnosis. I continue to watch your lives and in my lack of understanding I pray for you. I pray to the One who understands your every need and every emotion and ask for His presence in your life to pervade the essence of who you are! Love you, Lindsay"

There is something so incredibly healing about sitting down and looking through this book page by page. Having a tangible creation like this has been amazing. I have been able to have emotions that have been tucked away for awhile now. I have been able to be sad that my dreams have changed, but also celebrate how far we have come. It is such a gift to remember a time and place for something great, instead of something terrible. This memory book will allow me to do just that in those overwhelming moments on this journey. Thank you for my Ebeneezer stone. Thank you for such an amazing reminder of what the Lord has done in our lives over this last year. Thank you for giving me a tangible reminder of His presence in our lives.

Thank you to my sisters, for rallying around me and loving me in such special ways!
~Whitney

Parker's New School

Tonight was Parker's open house for the 3 year old program he's enrolled in for the Fall. He starts on Monday and was sooooo excited to get to see his new classroom and meet his teachers. We are thrilled for all of the new and exciting things to come for him!

~Whitney

Distance

There has been an underlying theme to my thoughts and actions lately...'distance'. I am realizing more and more, that the easy thing to do in life is to distance ourselves from people and relationships to seemingly better cope with things in our own lives. I think sometimes we tell ourselves that 'distance' will protect us from misunderstanding, judgement and rejection, and ultimately a level of pain that we don't quite feel adequate to handle. For me, it's the point where I feel emotionally out of control so I adjust and attempt to take back some control through my actions of withdrawal. I have found that I am repeatedly falling into this hole of isolation and I wanted to sit down and really put some thought into why?...and how scripture relates to it all.

Hebrews 10: 22-2
A Call to Persevere in Faith
22 let us draw near to God with a sincere heart and with the full assurance that faith brings, having our hearts sprinkled to cleanse us from a guilty conscience and having our bodies washed with pure water. ²³ Let us hold unswervingly to the hope we profess, for he who promised is faithful. ²⁴ And let us consider how we may spur one another on toward love and good deeds, ²⁵ not giving up meeting together, as some are in the habit of doing, but encouraging one another—and all the more as you see the Day approaching.

I love the fact that meeting together is spoken about in scripture pertaining to 'persevering in faith'. It just reiterates the fact that we can't rely on our own strength or ability to be successful at anything in this life. I think when we trust that the Lord wants us to prosper, we can see a clearer picture on the impact of relationships:

Jeremiah 29:11
For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.

I absolutely believe that we were not made to navigate this life alone. I believe that the Lord calls us to meet and gather together and encourage each other in our faith and in our walk with the Lord. I have watched my relationships suffer the most when I am sad, angry or bitter about how my dreams have changed. The times in my life when I should allow the Lord to work on my heart through relationships with others, are the times when I shut down and close myself off from everyone. It is a vicious cycle. It's almost like, when I know what it is that I need to do...it is at a time when I am least likely to do it. The emotional turmoil of navigating life these days is inevitable, but opening ourselves up to the encouragement from others, provides a way to push through.

I want to have faith enough in God's promises to allow myself to let go and pursue relationships in my life. It seems I do a better job of letting people in through these words on a blog post, than in person and with people that are actively involved in my life. I want to turn off my radar of making people uncomfortable and being too much for people to handle. I want to learn to trust that the relationships that the Lord provides for us are specially designed by Him.

~Whitney

My SnuggleBug

I can't get enough of these precious moments with Tessa. She's not a big snuggler...so when she is, I like to stop and just take it all in!

~Whitney

"Cheese"!

Can't get enough of these!

~Whitney

Bedtime Beauties

'Attack of Tessa' or 'Kisses Goodnight'...either way, it's cute :)

Is it just me, or is this little girly Growing UP!!

So it may become a little obvious that I've joined the world of smartphones! Oh the joy of taking a picture or video and emailing or uploading it immediately. Very nice!

~Whitney

It's A Hit!

We got Tessa's new Wingbo swing on Tuesday (super fast!) and I think it's safe to say....she Loves it!

It has been so neat to get to watch her have some different and fun playtime! We will actually be putting her in it more without her DAFOS on so that she can really have freedom of movement and use her little legs and feet to swing herself.

Wingbo and Mickey Mouse Clubhouse are a heck of a combination these days!!

I'm not sure there has been anything harder than watching Tessa go through the pain associated with her physical disabilities. She works so hard at every single thing that she does and it breaks my heart when her challenges are met with so much pain. This new swing is not just a way for Tessa to work on her head control; it gives her a good hamstring stretch, it teaches her effective movement/cause and effect, it allows her independence, it changes her environment, it provides motivation and opportunity, but more than anything, I hope that it is a way for her to play through the pain that can be associated with her physical activity.

Tessa Rayne is an amazing little girl and it's a privilege to watch her take delight in the little things!

~Whitney

Bynum Entertainment

~Whitney

Tessa Loves Tickle Time

And we just love hearing her giggles!!!






~Whitney

Rolling Fun

Parker and Tessa bonding time :)

~Whitney

Cuties!