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!!