Milk Milk

B and I have been busy, busy, busy!  We had a total of 4 doc appts last week.  One of those appts was for shots only.  She had 3 at a time this time.  By Saturday morning she was running 102 fever!  Luckily we have just found a pediatrician with an after hours clinic!  So off to doc appt #5 we went on Sat morning.  You never know what kind of doc you will get when you are just seeing the person on call...by this I mean there are docs out there that give us the brush off because she has t18...they don't care to see us...not sure why, but it is what it is.  I prayed the whole way there that this doc would be accepting.  He could not have been nicer!!  Seemed B had a reaction to the combo of shots and all was better by Sunday afternoon!

Today my gal is napping peacefully while I type.  She had a great first feeding!  This infant formula is working so much better!  I spent most of the morning on the phone between our insurance company and the compounding pharmacy...some days I really feel dragged down by this and just want to cry, but today worked out in the end!

We are switching back to a compounded version of Prilosec instead of the kind you mix with water at home.  It's just one of those Momma gut feelings that I know will work better for her.

And on a somewhat random note, I just want to share about one of my loves in life:

When I was in college, H and I would listen to a radio show in the mornings called Kidd Kraddick in the Morning.  I love these people and they feel like a real part of our lives because we have listened for so long.  It is broadcasted from Dallas...no where near us, but wherever we have lived we have always found a way to listen.

One of the things I always knew about Kidd but didn't really understand how special it was until recently is that he has a charity called Kidd's Kids.  Once a year he takes a group of kiddos who have terminal or chronic medical conditions and their families to Disney.  Sounds simple enough but I never before Battley was born really thought about what this probably means to these families.  These are people who have maybe had one parent give up their career, probably don't have extra money because of their medical bills, it may be just downright hard to haul all the medical equipment they have, or they get left out because they are different...I could go on about possible reasons these families have for not being able to do a vacation.  Kidd's Kids actually finds a way to get these kiddos on a plane and makes sure they can really enjoy a week of no doc appts and just loving Mickey.

So, Kidd passed away at one of his charity events over the weekend.  We are feeling pretty sad about it around here.  I suppose I am sharing because I feel strongly that this is a great mission and I hope that the rest of his team can keep it going.  Check it out here: Kidd's Kids

C

Solution???

We switched back to B's infant milk on Tuesday.  Thursday was our GI doc appt.  Things seemed to be going much better by the time we made it to the doc!  Sooooo...we think we have found the culprit!!!  The pediatric formula B was using has a vanilla flavoring added to it.  This increases the OSMOLALITY of the milk.  It's a new word for me.  I had to Google it when we got home.  Basically we think that if we use an unflavored milk it should solve the problem!  I am so excited and thankful for this discovery.  We are already able to give her her milk at a more normal rate and she seems happier and more comfortable!!  Thank you all for your prayers!

I also discovered another new word this morning.  Photophobia.  It is something another t18 friend has been diagnosed with.  B is SUPER sensitive to heat and light.  When she is in light that is too bright she closes her eyes and often sneezes.  We cover her eyes even on the way to the car in the driveway.  She also has a blanket we use as an extra sunscreen in the car.  It looks like B probably has this photophobia which can cause pain when her eyes are exposed to too much light.  Yay for figuring things out!  It can be hard to guess what is going on with your child when they can't talk to you with words...thankfully B is super in tune with her Momma and is so good at getting her point across!!  I will be extra careful now with those sweet eyes!

Happy Friday!

C

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

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

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

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 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:

www.totcollar.com

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.

http://kinseygracethompson.blogspot.com/

* 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.

http://babynolanwilliams.blogspot.com/

C