Feeling Yucky

Miss B is not feeling too well right now.  She has a UTI.  She has had 2 shots of Rochephin and we may go back for a third tomorrow morning.  Yesterday after her first shot she started running a fever of 103.4...very scary for Momma.  Motrin and Tylenol haven't helped much so we are playing the waiting game.  She is doing better today, so hopefully by tomorrow she will be feeling even better.

H started HIGH SCHOOL yesterday...I am NOT really okay with this.  I wish I could shrink him back down to 2 or 3 and start all over!  I have a few weeks to get okay with this though before he turns the BIG 1-5 and gets his Driver's Permit!!!  

Hmmm...that's it around here.  It's too hot to do anything or go anywhere...haha!  

C

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