Wednesday, April 2, 2014

Battley is 2 Years Old!

Yep...Battley is 2!  We chose not to have a party for her this year.  Instead we got out and had our pic made by her B hay...the first pic of all 5 of us together.  Of course I haven't gotten it off the camera yet though.  Then we went to a friend's house for a last minute dinner get together and they threw her a party with balloons, cupcakes, and the cutest princess dress ever!

It's been so long since I've blogged that I forgot what has happened since last time.  We are mostly through our new GI plan of getting OFF all reflux medicines.  She is still getting one dose of Zantac at night.  In a week we will stop the Zantac all together.  Then her medicines will be:
1 half cap of Mirilax daily
1 dose of Little Tummies (over the counter senna liquid) daily

She is still doing her coconut oil.  We had to stop for a few weeks when she was so sick, but she is back to having it each day.  I see major improvements with her when she does have it.  She is more alert and interactive.

Our new plan of action is to change to a more natural diet.  It will still be a formula and pre-made for now.  The doc is trying to get us a sample case in case it doesn't work.  Our insurance situation is a NIGHTMARE right now, so we don't want to fill a whole month of prescription formula and then have to pay out of pocket for what we normally get if it doesn't work.  Then if it does work well, we will transition to a blended diet.  That would be me literally cooking and blending her food myself.  A few things have to happen before this big step, but it is in the works.

She is still screaming in the night.  We now know exactly what it is and are working hard to get the combo just right so she sleeps all night.  Please pray for her and's exhausting.

JM is doing very well.

H had himself a little miracle a few weeks ago.  His ACL was a partial tear.  When we went back for a check up with the surgeon after a month of PT, he released him!!!  We were shocked!  Still are!  The doc believes that this can and will heal on its own.  So for now he has a brace to wear when he wants to (he is wearing it for sports all the time right now), and he is back to doing everything he was before!

I posted a pic of Battley's new ride yesterday.  So far we have just used it in the house.  Tomorrow we are taking it to therapy to fine tune a few things with it.  It's been great though!

About her torticolis: when she was so sick a few weeks ago, she was REALLY sick.  She literally laid in our bed for days and didn't do anything at playing, no rolling over, no smiling, no talking!  When she started to feel better we noticed that her neck wasn't tilting as much to one side.  It is not 100% corrected, but I truly believe that her laying so still and relaxed helped it!  Crazy, huh?

Hmmm...I think that is about it for now.

We are working on her fingers with some new braces...she will wear these at night but we are still in the testing phase right now.
and we are also working with a new communication device.  I will have to post a video later.


Kaity, did you see she wore her new dress for her bday?

Tuesday, April 1, 2014

Videos and Pics

I will work on a post tomorrow, but here are a few pics and videos from lately.