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