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
THAT'S IT!!!!

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 us...it'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 all...no 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.

C

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.







C

Saturday, March 8, 2014

Broken Down

If you have seen my car on the side of the road this past week, don't worry...my car didn't break down.  Poor Battley has had such awful stomach issues this past week that I can't get anywhere without pulling over multiple times to help her.  The nights seem to be better since we started our GI plan of attack, but it seems like the nights got better and the days got worse.  I could complain here, but I have nothing to complain about because she is here.  And she feels good and is so happy when her stomach feels good!  So...what else...

Her new chair/stroller came in this week.  It's really cool.  So far we are just using it around the house since I can't push her and push JM in the other stroller.  She likes it.  I will get some pics posted this week.

Her respiratory infection is all cleared up!  This should really go at the top of this blog post because I am serious and it is for sure the most important thing I have to say.  WE HAVE SEEN ANOTHER MIRACLE.  Did making it all caps help get my point across?  I'm so serious...she literally has been healed and brought back to us again.  I have to pinch myself sometimes.  This is my verse lately:
Psalms 30...I like the whole thing, but verse 5 I have to repeat to myself a lot...
Weeping my endure for a night, BUT JOY COMES IN THE MORNING!

When I'm pulled over on the side of the road for the 5th time of the day and cannot seem to help B I have to remember that JOY is coming.  And it always does in that sweet smile of hers!  

We are back to our normal routine of going to therapy each week.  We missed 3 weeks with her being sick.  Hmmm...that's it.  Oh, well I do have an update of sorts on her torticollis but it will have to wait until next time.

C

Thursday, February 27, 2014

The Plan

We saw the new GI doc yesterday.  Here is the new plan:

*add pedialyte to each feeding.  This stuff isn't cheap if you've ever bought it.  We use such a small amount and the label says to discard within 48 hours of opening it.  Doing a little research to see what we can do to make this more affordable.   I really don't like dumping it down the drain!  BUT...she has been getting a good amount of it the past 2 weeks and going to the bathroom...forget it...I've tried to be ladylike in the past...I'm tired...she's been poopooing!  We cheer for it around here!

*add Zantac to her Prilosec...one dose.  
wait 2 weeks
add another dose
wait 2 weeks
subtract the Prilosec
wait 2 weeks
subtract a dose of Zantac
wait 2 weeks
subtract the other dose of Zantac

so...she should be off all reflux meds

*somewhere in those 2 week time periods we should be getting back with the doc

*we are also probably going to change her formula again...to something more like real food.  I've looked into the idea of doing a blenderized diet for her...basically cooking raw foods and blenderizing them for her.  It's a lot of work and something I know NOTHING about.  In fact, I had to take Nutrition in college and it was awful and boring.  My brain just doesn't work that way.  BUT we will figure it out if we need to.

So...thank you all for your prayers.  It wasn't a quick fix like I was so hoping for.  God is obviously thinking I need to work on my patience lately.  

Battley's respiratory infection is all cleared up.  If you don't believe in the power of prayer, then let me just tell you that we held a lifeless body only 2 weeks ago a few times.  She is back to smiling now.  God is good and answers prayer.

She is still struggling with her stomach.  The daytime seems to be going better with the new meds we started last week...erythromicin.  The night is a whole different story.  She has been screaming in pain most all night for a long time.  It's so exhausting to try everything you know and nothing helps.  Please continue to pray for her...pray this new plan produces a resolution to her pain.  Thank you!

C

Monday, February 24, 2014

Monday Update

I have some good news, some disappointing news, and a major prayer request.  

Good news:
I made it Friday without all day help!  I had some good help, but not all day long...and it was okay. 

Battley had awful bile Thursday and Friday.  We tried a new med starting Friday night.  Erythromycin.  It helped immediately.  She was able to have her milk Saturday and Sunday with no bile, no screaming, and no bubbles!  

Because of that she got good rest and we were able to wean some oxygen settings.  She is now down at a reasonable level and I can leave the house with her if needed!

Not so good news:
The bubbles, bile, and screaming were back last night.  Because of that she didn't get good rest and her breathing isn't as good this morning.  Her sats haven't been amazing.  

Prayer request:
We are seeing a new GI doc on Wednesday.  Please pray that he will take time to fully understand what has been going on for the past year, have some answers for us, and we will see immediate results from our decisions.  

Battley is one tough girl.  It's so hard to see her in pain and not be able to help much.  Her respiratory infection seems to be much better.  She just needs more rest.  

I could NOT have done last week without help.  We had meals, help with chauffeuring H, a house cleaner, a laundry helper, a few baby rockers, a wal-mart runner, an errand runner, and daytime helpers.  

My friend Sam stayed a day, my mom stayed a day, and my Aunt stayed 2 days!!!  

Then on top of all that, you guys are praying for us.  Thank you!  We are so blessed and humbled by your love for us. 

C

Thursday, February 20, 2014

Thursday Night Update

Battley rested very well today.  I wasn't able to wean any oxygen settings, but we didn't have to make any increases either.  She is having major stomach issues.  Every few hours she will scream and have bile that needs to come out...yuck, but also painful for her.  I am working hard to calm her tummy so we can get back to regular feedings.  Right now she is just on Pedialyte to rest the tummy.

Hmmm...what else?  Tomorrow I will attempt to do this on my own for longer than a few minutes.  I have a few people coming to help, but there are gaps.  Hoping those gaps are peaceful.

Please continue to pray for Battley's stomach and her breathing.  Thank you!

C