GF & GI Clinic Updates

We had a follow up appointment with the CF center at Nemour's yesterday for Ayla.  The Dr. wanted to ask about how her treatments for pseudomonas are going and give her a "once over" since we are in the middle of our plan for treating this. I told her she does amazing and really gives me no trouble with the amount of stuff this little girl has to endure daily to stay healthy.
Ayla had acquired a cold from starting school, apparently a lot of the kids came home with the same thing. But the good news is she was showing signs of getting over it this morning.  So nice to see a cold come and go.  The Dr. heard a small crackling in her lungs as she had heard before, she wasn't sure if it was due to the cold or something else.
She explained that at the end of this TOBI cycle she will want Ayla to have a "bronchoscopy"-which I guess is a good thing but I don't like the idea of her being put under for this test.  
They were extremely happy with her weight gain...her weight was 37lbs and her height was 40inches.  She is in the 50/50 club! Her BMI is 70% and they like it to be above the 50th-so I am really glad about that.  Good weight gain in most cases is a sign of overall good health-so it's a major blessing.
So for now we are just going to see them again when we finish TOBI and stay the course.

GI was a "getting to know you" visit for us, this Dr. came from Shands and has worked closely with her Dr.'s at the liver clinic.  I feel good about having a local GI physician for her who can co-ordinate a treatment plan with Shands.  She has been doing good GI wise- we ordered some labs to check liver enzymes and vitamin levels.  Other than that we will see him again in 6 months or so....

It was a long day of appointments and I feel really grateful for the progress Ayla has made....we can only pray the Pseudomonas will be gone and everything will look good when they do her "bronch."

26 Weeks and counting.....

Looks like a big grape-huh?

So this week has been a crazy one with Ayla starting school.  Autumn has been moving all over the place and being a very good little girl, she has me feeling pretty great!

My stomach is definitely out there as of now, I officially cannot cross my legs, put on my underwear with ease or bend down without making some loud grunt.

I have purchased paint for her room and will be taking before and after pics-so I hope to have the pictures up by this weekend!

Other than that my sister and my nephews are coming to FL for a quick visit next week and we have CF and GI clinic on Monday.  That starts another busy week!  Gotta love it!!

~Ayla's First Day of VPK~

First day of VPK at Wesley 2011

She was so ready!

One with Mom

Being Silly

You would have thought this child had never seen the sun...she would not open her eyes!

Standing by the "Big Slide"

Outside her Classroom

At her desk

One from the hallway as I was walking away....yes I am "that mom"

Last Silly face!

Ayla had a great day today!  The morning went pretty smoothly considering we aren't early risers and had about a million things to get done before we could leave.  I even had time to co-ordinate her breakfast that needs to have dairy with her CIPRO that can't be given within 2 hours of Dairy, 3 treatments and lunch made and myself dressed all before 845 am!  

She was so ready for today, she was very excited and never got upset when I dropped her off.  I can't believe how big she is.  I remember when she was born wondering if anything like today was ever going to be possible for her.  

I went back for a meeting with her teacher this afternoon and she said Ayla was a very happy child, she seemed to adjust well and her enzymes went over with ease (what a relief!!) The kids were in the "Gym" while we met with the teachers so I went down to get her and she saw me and got a little upset.  I asked her why and she said "a girl wasn't playing with her"-I guess there was one girl she really wanted to play with who wasn't co-operating.  She still had good things to say about her day and talked about going back tomorrow-so that's a good sign! 

What a big day we all had today!  I know we will ALL be tired later today.....I felt really good about our decision to send her to Wesley, I loved the christian basis and all of the people seemed really nice.

All in all it was a success, we will see what tomorrow holds!

~Krista

Ayla Update!

Ayla is doing better with her tummy-troubles.  When her Dr. prescribed Cipro along with Tobi for Psuedomonas I read on the box not to give it within 6 hours of antacids.  So I stopped giving her prevacid.  There I go thinking I know everything, I should have called pharmacist b/c since she has been on her 3 week break from that regimen (we start back Sat) Prevacid has resumed and her tummy has been a lot better.  We still have a oily stool here and there but I am beginning to realize that's just CF.
So today while talking to the pharmacist at the Cystic Fibrosis Pharmacy I asked him about my antacid theory and he said....prevacid is fine.  Just no tums or Maalox or anything like that.  So maybe this round will much less eventful on the GI side than last.
In NON-CF news....she is starting school on Tuesday!  We have open house on Monday night and she gets to meet her teacher and she is so excited.  I really feel like I made the best decision because I am really excited for her and not anxious.  I am sure I will still be sad the day of.  She's getting so big!! If all goes well she will be starting kindergarten next year and that will be cra-zy!!!
Hopefully everything goes well with getting her enzymes at lunch..that is my only concern.  I am praying she can meet some new friends, she needs some play-mates!! But I will have lots of pictures from our first day and hopefully we can all get used to getting up a little earlier in order to get morning treatments done....This house doesn't rise early.......for now.....

25 Weeks

My Husband actually took this picture!
A major improvement from previous shots!

Nothing new to report with baby "Autumn"-she's just kicking and moving and I'm looking forward to my next check up in a few weeks!  Feeling really good and so thankful for that!

Mind Wars....

Do you ever feel like a war is going on inside your head?
Last night I fought a battle......not the physical kind but the mental kind....

I somehow got the thought in my head that I hadn't been feeling the the baby Autumn move as much as I had in recent days and my mind took that and ran with it....

I know that I am 24 weeks pregnant and that "those kinds of things" don't often happen this late in pregnancy......but I spend more time worrying about losing this baby than the test for Cystic Fibrosis coming on her birthday.
I know what to do when those kinds of thoughts enter my mind....you know the kind....the gripping, walking through the situation kind of thoughts.....where you catch yourself right before the devastation sets in.
My mom always tells me to say "CANCEL" (see mom I do listen) and I do that....I began to pray and thank God for this baby -this healthy baby.  I always find myself apologizing for letting doubt creep in on me and pleading my case.
I had this happen 2 or 3 times last night and even again this morning....the story always ends with Autumn giving a good kick or twirl where I have no question that it was her.
So if you think that I am out of the woods or that I deal with these things so well.....well......your wrong!  It's a struggle everyday to say "NO" to those fears and the fears that come after I have said "NO" to those...but it is a choice....and I'm choosing to have "Faith."

Autumn Faith's room decor......

Yes....I said it....My husband informed me the other day that we had indeed settled on a name...It's so weird this time...I love this name and it has meaning in all the right places goes beautifully with Ayla....but saying I'm settled...IS SO HARD!!

I don't think another name is going to come along and sway my decision however.  This baby is so important to our family and we are so excited to meet her in a few more months!  I think she deserves to be called by her name instead of "baby."

She is due in November and we are after all practicing quite a bit of "Autumn Faith" and giving this child's health to God.  We know he will take care of her...

So this is what I have decided for her room.  Ayla's room is an adorable pink and brown theme and I wanted to do something girly for Autumn but not the pink/black, or traditional girly stuff that you see.  I love this and I will be able to buy additional pillows and stuff easy since the colors are pretty standard (black, grey, red, etc..)

I Cant wait to get started!!

The Never-ending "Poop" Saga

Ayla's BM's haven't been the greatest the past month or so.  With being on Cipro for Psuedomonas and all of her other daily meds her digestive systems is pretty much a breeding ground for bacteria.  It seems like she will have a few days of ok poops and then a few days where she will go 4-5 times a day and those could be accompanied with pain and oil.
I am just wondering if all this is "normal" for CF'ers because other than Probiotics.....there aren't many options to treat it.
You would think if Oil was present in her stools which is fat, then it would be safe to say she is not absorbing all of the fat from her diet.  And isn't that what enzymes are for?  Can you ever expect to absorb all of your fat from your diet-living with CF...even on pancreatic enzymes?
It seems like this could just be part of the battle that is living with CF...poor thing....she wants to change her panties all the time b/c she feels like something is there....I guess it's the feeling of always needing to use the bathroom that bothers her and gives her anxiety about having an accident.
It seems like there should be something else out there to help with this....I wish someone would do a study on how diet and quality of food affects people with CF.  Diet can heal the obese and even cure cancer so why is CF so different??  Maybe I should just start this study on my own.....I want much better for her than a life of worrying about what people will think if she frequents the bathroom or has constant stomach issues.....

24 weeks!

I had my monthly Dr. appointment Friday with Dr. E.  It's always something I look forward to but once I get in the room with her I get so nervous!  Today was a quick appointment, just measuring and checking the heartbeat.
This pregnancy has been so great, it's going by so quickly.  I have my glucose test next month and after that I have appointments every 2 weeks!! That means it's crunch time!!
I am feeling really good, it's getting tougher to do things like bend over and shave my legs.  My belly is really poking out now and I have put on a total of 12 lbs so far.
I can't wait to start working on the baby's room and putting everything together. I am ordering her bedding this week, yay!!!

Sorry for the quality of pictures.....my husband is photograph-challenged.....this is what I get when he takes a picture..

not ready and squinting....

It's not that he doesn't give it his best effort....he will stand there and take a bunch of pictures of me but when I go to look at them they are all far away or you can't see my face or the body parts that I'm trying to focus on are not the focus....

So I resulted to taking a pic of myself while we were in the car.......

So this is what we're stuck with....But I figured any pictures are better than no pictures at all....

Disney Vacation Day 4-Hollywood Studios

Breakfast at Chef Mickey's

She was still not "comfortable" with these guys...

Except Minnie-because she's a girl as Ayla said

The family

haha

Going into Hollywood Studios

This show was awesome!!

Ariel was her favorite princess

Toy Story ride

waiting in line

Larry and I rode this one together and had quite a competitive game of target practice....he won-but I was a close second!

Ayla's favorite store!

Dinner at Hollywood & Vine for Fantasmic Package

Under the "hat"

Our "Star" in the making

This was not cool but it was cool inside

Fantasmic Show

This day was rough....we were all so tired and even Ayla was just trying to avoid falling asleep.   We had Chef Mickey's early and got to the park at a good hour.  We stayed there till after lunch and went back to the room so the guys could take Ayla to the pool one more time before we left!  Hollywood studios was fun but Magic Kingdom was by far our favorite!  We saw the Little Mermaid Show, it was so cool-we would highly recommend it.  We rode the Great Movie ride which Ayla really liked surprisingly.  We went back to the room and Karen and I passed out like full on set your alarm for an hour from now for fear you may never wake up kind of sleep.  Which I felt like the wicked witch of the west when I rose....We rushed to get everyone awake and ready for our dinner reservations at Hollywood & Vine and the Fanstasmic Show later that night.  The dinner was really good, we tried killing as much time as possible inside the a/c since we had hours to kill before the show at 9.  We went in the shops and sat on corners and people watched.  And finally it was time to head up to the show, we were exhausted.  The show started and it was really awesome!  Ayla loved where the characters floated by on boats, we were having a grand ole time UNTIL.....I look over at Ayla she's got something in her mouth and I see glow in the dark liquid all over her legs.  Yes, she had bitten the glow stick!! I freaked out, luckily the show was over because we booked it outta there and I was calling poison control.  The package said non-toxic but "do not ingest" as well.  So I figured better safe than sorry.  Everything was fine and it ended up being the adrenaline rush we needed to make it to our car.
The next morning we packed up our stuff and drove 6 hours home somehow.  We were all so tired when we got home, it was a great week!

Our Disney Vacation-Day 3 Sea World

Entrance to Sea World!

(yes I am wearing tennis shoes with a dress, I wasn't proud of this-but my ankles recommended it)

Watching the Dolphin show

We found some A/C in the Abby and Elmo Show

Daddy and Ayla waiting for the show to start

We were trying to get a good picture but it was HOT!!

We went to the One Ocean show and Ayla was not into it.....

she wanted to ride rides!

Did I mention Ayla loves carousels??

A slide that Daddy got stuck in b/c he was so sweaty

Riding the "Shell-cups?"

Ayla posing

Ayla and daddy on the climbing ship

Some indoor aquarium that was A/C

We had just seen the shark tank and Ayla was terrified of this fake shark

Ayla with her Polar bear and some penguin pic

The penguin tank

We all rode the SkyView thing....

We thought Sea World was pretty overpriced.  We ended up paying over 400$ for all of us to get in and with Ayla not being amused by shows the kids area wasn't big enough to entertain us for the amount of time we needed to make it worth the money.  But we had to experience it with her and I was glad she got to go. She was more interested in the shops than anything else.  

This day was also Scott's Birthday and we went back to the cabin got our suits on and went down to the pool that we hadn't had any time to enjoy.  They have a big slide and Ayla loved it!! After that we went back to the room and got dressed for our dinner show at the Hoop-Dee-Doo review.  It was really funny and a great end to our day!