Ten Tiny Toes: April 2014

Monday, April 28, 2014

Feeling better!

These were from last Tuesday! 24 hours after IV fluids and antibiotics, Tessa was doing lots better!

We got some much needed sunshine!

And big brother was so sweet to help Tessa open her Easter basket since she was finally feeling up for it!

It's a good thing we don't get all caught up in tradition around here....cause things rarely go as planned!! ;)

~Whitney

Tessa got super sick over Easter weekend. She woke up in a great mood that Saturday morning and had a blast doing the 5k with me, then after that, things went downhill. It was a terrible stomach bug and it totally depleted her. I stayed home with her last Monday to try and get her rehydrated, but realized pretty quick we were going to need some help. We got in that afternoon at The Children's Center so they could check her out. Not only was she completed dehydrated from the stomach bug, but we found out she had strep too. Not cool at all. They gave her some IV fluids and a prescription for an antibiotic and we went on our way to continue our TLC.

that Monday morning :(

She could only handle about 2 oz of pedialyte at a time, and yes, she drank it in her sleep.

Headed to see the doctor.

Waiting for her IV

I can't stand seeing my spunky little thing so sick!

Slowly started to drink more on her own.

On our way home...this is her 'beyond worn out' face

And illness doesn't seem to be without seizure anymore :(

These pictures help me remember what happens during them.

Her epilepsy has changed so much over the last year and it's important for us to keep track and stay on top of the changes.

Finally peaceful.

It was a rough several days. Nothing makes you more thankful for health than illness. We are thankful for Tessa's amazing pediatrician and the staff at The Children's Center. They love and care so much Tessa and our family as a whole. Tessa is doing much better now and we are glad it's all behind us!!

~Whitney

Sunday, April 27, 2014

5K - OKC Memorial Marathon

Me and my friend Bree and her daughter participated in the 5K part of OKC Memorial Marathon this year!

It was rainy, and delayed, and we were wet and cold...but it happened!

We all three crossed the finish line holding hands.

It was a really neat experience!!

It was very different not having Miss Tessa with me, but since the race was supposed to start at 6:30 a.m. and we knew there was a chance of rain...I decided to let her stay home and sleep. I missed her like crazy and it didn't feel right without her, but in the end, I was glad I let her stay snuggly in her bed!

~Whitney

Thursday, April 24, 2014

AAC Device Demo

We had a demo at our house yesterday for an AAC device for Tessa (AAC= Augmentative and Alternative Communication). The particular device was the Accent 1000 made by Prentke Romich Company - PRC.

This is the device up close: PRC Accent 1000

https://store.prentrom.com/product_info.php/cPath/11/products_id/235

Talk about an education. We learned a lot and are so excited about Tessa's future with an AAC device. We trialed the Tobii Eye Gaze system in the fall of last year (everything ended up falling through on it between Medicaid and issues with the vendor), but we are really excited about how much Tessa has grown and changed and realize now that there are other options out there that will provide her with much more freedom and growth through the years!

I watched this documentary today called "Only God Could Hear Me" - https://www.youtube.com/watch?v=2r9pvtNTx4k by Bruce Baker. It was fantastic. I was told to prepare for tears, but didn't shed a one...I smiled from ear to ear from the very beginning. I loved the 'sink-ball' part at the end (if you watch it and make it that far ;) It is an amazing documentary about AAC device users and the development of the language used on these devices. In the documentary they reference "minspeak" and here is a brief description:

http://www.minspeak.com/

Just looking at the device, it doesn't look very intuitive. But after the education we got on it yesterday and then after watching the documentary about how the language was developed...it is rather amazing. They use an approach at PRC called "LAMP Words for Life". LAMP stands for Language Acquisition Through Motor Planning. http://aacapps.com/lamp/what-is-lamp

But just as usual...Miss Tessa's excitement throughout this entire new experience was enough to make us excited too! They gave her lots of time to just explore the device...and explore she did. She knew that device was full of some very fabulous things...and that it has the potential to change her life!

It will take lots of practice, and we are so ready to get practicing!

Her movements around the device in these videos show just how excited and ready she was to interact and engage.

She couldn't have been more focused!

She worked (and played) so hard the entire time and it was such a joy to see!

At one point she requested her drink, so we followed through on her request and gave her a drink. Whether she found the button by accident or not, doesn't matter. What matters is that we encourage, teach, help, respond and celebrate as she navigates her new voice :)