Pages

Monday, July 22, 2013

Phone pics

I really have no news to report...B's stomach issues are about the same.  We saw her palliative care doc today and got a few new ideas.  I am just waiting on the GI doc to call me back before we move forward.  I don't think I've done us any favors by trying to be positive with the GI doc previously, so today I tried very hard to be a Negative Nancy to get the point across that it's not a good situation and we need a solution. 

Every few weeks Adam will show me something on his phone and I will discover that he is hoarding pics on his phone that I've never seen.  Here are the latest findings:

Pic of me and my #1 girl on the porch at the Fryemont...vacation!!

Mac:
And Zeke got to take a little trip without Mac this weekend!  He loved it!  H sent me this pic from the trip home:
 C


Thursday, July 18, 2013

Tot Collar

The progress has been slow, but it has been PROGRESS!  Miss B's stomach is getting better each day!  We are all exhausted from this crazy, wacky schedule.  Hopefully we will be back to a regular schedule next week!

The Tot Collar came in.  I have a pic to post from her PT session this week.  She did NOT like putting it on but doesn't seem to mind it once it's on.  Her neck did exactly what it was supposed to do the second it was on!  She needs to wear it as long as she can tolerate it and I have my eyes on her every day.  I have very high hopes for this.




We are getting ready for school in a few weeks...ahhhhhhh!!!!!  I am SO not ready for this!  My baby is going to High School!!!!  And will be getting his driver's permit next month...ahhhhh!!! 

Here is a little pic of Battley snuggling with her daddy one night:


C

Monday, July 15, 2013

Keep the Prayers Coming

Thank you so much for all your prayers.  I think things are looking a little better after this weekend!  Praise the Lord!  She is still having some issues with gagging, but the bubble problem seems to be much better.  It's been a rough schedule and we have stuck tightly to it...maybe this is just us getting ramped up for being up all night with a new baby??

If you're wondering how we did this:
5:30am - dose of Prilosec
6:00am - dose of Karafate
7:00am - milk and water with gas drops and dose of Flagyl
11:00am - dose of Karafate
12:00pm - milk and prune juice with gas drops and dose of Flagyl
4:00pm - dose of Prilosec
4:30pm - dose of Karafate
5:30pm -  milk and water with gas drops and dose of Flagyl
9:30pm - dose of Karafate
10:30pm - milk and water with gas drops
 
We brought out the feeding pump for this last feeding because she was asleep and we thought it would be easier on her tummy for the milk to be slower.
 
That's it...there is no other news here except for sticking to this schedule!
 
C

Thursday, July 11, 2013

Prayers needed

Battley is still having stomach issues.  I spoke with the doctor this afternoon and we have another plan (plan #45 it feels like...ha!) to start tomorrow.  Please pray that it works or we find a way to resolve this for her.  I appreciate your prayers so much!

For Net...baby and I are both doing well.  I have been so busy lately that I honestly forget that I am pregnant sometimes...that is until I try to get up off the floor!  xoxo

C

Sunday, July 7, 2013

Sunday update

It is that time again...time for me to post because you are all checking in on us to make sure we are here.  B and I have been SUPER busy with bubbles...I wish I could say that this was something fun, but it is not.

After a GI appt we decided to change her reflux medicine from Prilosec to Zantac.  The goal was to step down from the Prilosec, use Zantac for 6 weeks, stop the Zantac, change milk in a few weeks (back to the Boost), and then add a vitamin.  The plan was in action for 2 days before we realized that it was not going to work...AT ALL!  We changed back to Prilosec quickly.  Poor B has bubbles in her stomach with almost every feeding that take a long time (sometimes over an hour) to get out.  They hurt her poor stomach.  I have tried everything I can think of to make it better.  We will call the doctor again Monday morning to see if she can think of another route.  

Once the bubbles are out of her tummy she feels great.  During those times we have been busy with doctor appointments (B, H, and I), hauling H to his practices, pool time, and a few very small house projects.

I just ordered this for B:

It's not super attractive, but she does have torticollis and this should help.  She will only wear it at home for a few hours each day.  It's not bad at this point so this device should correct it quickly.

She also has a new positioning device.  They have this same piece of equipment at therapy.  There are tons of different ways to use it...we have had fun figuring out all the ways that work for us.  It's called a Tadpole and made by TumbleForm.  Here is a pic of some of the pieces: tadpole  We have a few more.  Battley's awesome Physical Therapist helped us order one...this is one of those things that, at least for me, isn't common knowledge...I would have never known we could get our own or where to get it.


B is also working on having her immunizations!  This is something we never thought was important before, but certainly a must do now.  She has had 3 so far and all have gone well!  Yay!

Oh...the new rug!  You won't believe this!  First let me show you a snippet of our rug in the living room:
It's not like I go around taking pics of stuff in our house so that pic will have to do.  I love this rug...it's a grasscloth with a wide cotton binding.  It is AWFUL on your feet!  We always wear socks or hop quickly to the sofa...haha!  It basically makes our living room unusable for playing on the floor.  

The company I used to work for GAVE us a piece of carpet...well, I should say they gave Battley a piece of carpet for her living room!  Can you believe that?  After all they have done for our family, they did that too!!!  They also put a pad on it and bound it for us!  So...I'll have to work on a pic of it all together, but here it is when we rolled it out...I was so excited to walk on it with bare feet that we didn't straighten it out:

It's wonderful!  Battley loves it too!


My goal for the next few weeks is to take care of the next issue in the living room: the front doors.  We need shutters or blinds for them so that we can use this room more...remember my gal doesn't like bright lights.  Hopefully this will be easy!

Just a few random pics:





And finally a few blogs I'd like to send you to:

* This is a friend who could really use some prayers this month...she has 2 babies in Heaven both born in July.  Her baby boy had T18.  She doesn't update her blog often, but please pray for this beautiful woman as she faces her hardest month.

* A former customer of mine is having a sweet baby boy very soon.  He will need heart surgery shortly after his birth.  His parents are living away from home during this...which is something I can't even begin to imagine.

C



Wednesday, June 26, 2013

TV Star!!

Battley was filmed at her therapy place one day a few months ago for their new commercial.  I haven't seen it on tv yet, but my friend texted me last night and said she saw it on HGTV.  I hope this link works...should be a link to see the commercial.  I'm not sure if it is exactly what is playing on tv, but look for Miss B in the swing.  She is swinging with her physical therapist!  I had to view it on my computer...it wouldn't work on my phone.


C

Sunday, June 23, 2013

Lately

We are home from vacation!  We went to Gatlinburg, TN and then drove into North Carolina through the Smoky Mountains...it was fun!

A few days before we left for vacay Battley started having some stomach issues with her milk...or so I thought it was her milk.  It was awful on vacation.  I was back to spending an hour or more feeding her each time.  She was in pain from tiny bubbles in her stomach.  We called the nutritionist while out of town and ordered new milk to start the day we got home.  A few days into the new milk (which is Peptamin Junior by the way) there was no change.  Battley and I both spent the majority of one day last week crying together.  She cried because she was in pain...I cried because I couldn't do anything else to help her.  A few tricks later and we are at least making it until we can see the GI doc this week.

Then on top of the milk issue, Battley has been grinding her tooth against her gums so much that it has been bleeding.  We noticed her making a tooth on tooth grinding sound (awful!) Thursday night.  She only has one tooth!  After a good peek in her mouth with a flashlight we found out she has gone through the top gum...ouch!  Emergency trip to the dentist Friday morning!  The dentist says that some of her kiddos grind their teeth more when they have another issue going on...the milk issue I'm guessing!  Thankfully there is nothing much to worry about but I am praying for another tooth to come in soon.

Therapy is going really well!  Battley got a new piece of equipment for our house last week...it's been fun to figure out how to work it.  She is doing a really good job holding her head up when we are holding her and working so hard to hold it up during tummy time! 

We spent most of the weekend moving furniture around to make room for baby.  The office moved to a cabinet in the breakfast room, so maybe I can find more time for blogging now that it's right beside me.

Time for dinner...more later

C