Be Who You Are: Plays of the week (Dec 12th- Dec 19th)

Plays of the week!

Addison at the IWK. It was my first time going to an appointment alone.
She did great!

Apsea(Vision teachers) came to the house for a visit this week. Told me that I need to do flashlight therapy four times a day not the one time that I was doing and when I was reluctant because we already spend hours upon hours doing therapy a day his response was "well I do things I don't like during the day also".....And that was his last visit to our home. If he can't have enough common sense and empathy to be realistic about our life he can get the hell out....no second chance for him. I have drawn the line.
Wednesday we had an appointment with Neurology and an EEG. This was a regular scheduled appointed but we were noticing different kind of seizures so that is why the EEG. The EEG machine was broken which they didn't figure out until they had Addison hooked up to the machine so she had to lay there for an hour waiting for them to fix the machine and then for another hour for the EEG. Let's just say it was a very trying two hours. In the end we met with the doctor Addison had multiple seizures in her office and she was diagnosed with Infantile Spasms. This is a bad type of seizures that we hoped we would never ever have to worry about. It wasn't a good day but in the end just another piece of our puzzle that we accept and move on. Addison started the new meds on Friday which do have some negative visual side effects but where Addison has CVI we opted for it anyway hoping to get them under control rapidly. We increase her dose tomorrow and hopefully wont see anymore.
I spent a couple days last week getting my classroom set up for January. I forgot how much work it takes to have an organized Elementary classroom. I got it all done and it looks great! Now to just get something planned for them to do when they get back to school in January!!
Saturday was the Annual Christmas Breakfast that I host every year before Christmas. 18 very special ladies come to my house, we have breakfast and then do a game that involves exchanging gifts! We spent Saturday evening with Debbie, Nathan and Jared and a few drinks and take out!!!

The ladies enjoying their breakfast!

Gift opening!

Cousin love!!!

Jared is too cute!

We had physio today and Addison tried out the stander. She absolutely loved it. She was falling asleep before we put her in and she perked right up and was smiling away. We are going back in January to get sized to get one!

Whats new with Addison

Addison in the stander at Physio
Her's will be pink of course! It matches the wheel chair!

She loves her light box with her red pom pom on it and red scarf
SHE LOVES LOVES LOVES the sound of bells and sirens or really any loud loud noise.
She is learning to watch the I PAD with no sound and today was the first day I caught her smiling at it....that means she is seeing something on the screen!! Go Addi!
She has fallen asleep in the car twice this week....that NEVER happens
We started using a real toothbrush in her mouth instead of her special ones(we still do those just different times of the day)
We are starting to get comfortable with the CME home therapy program. We have the room set up, we each have six exercises we are comfortable with and don't need to watch the video to do. We have decided Tyler will do them in the morning before work and I will do them after work. With the infantile spasms getting under control we are hoping to start seeing progress.
She loves to go swimming
She likes the taste of icing and chocolate (shh don't tell anyone)
She is happy a lot of the time now that we are getting her better. She laughs most days. She tries so hard to get it out sometimes she struggles but when it happens it is soo cute and worth the wait!
Starting to sleep better. She has been napping better in the last 5 days or so. We are working on getting her to sleep by 8pm and stay asleep until 6am. Not doing to bad. If she wakes up we are not bringing her in our bed.
She isn't a fan of getting changed but as soon as you pick her up she stops crying....I call it spoiled.