"Everyone needs a place to call their own"

Tuesday, December 29, 2009

Ayla-Update: "Proceed with Caution"

So I just had to update everyone on Ayla and our "new-plan" from the doctor's. Things have been going really well. She is learning to like some new foods and her belly issues are about 80% improved! She hasn't had any grease & hardly complains of belly pain at all anymore! And for those of you who know me or are Cf''ers yourselves you know most of my posts have something to do with poop. And just now Ayla had her first BM of the day and it was a SINKER-people!! That's like the poop all of us cf parents dream about for our kiddos and she had one today. I have to believe that this new diet is really agreeing with her.
And to top that off, we went to the pediatrician yesterday to check on this cough (which was just a cold) and Ayla hadn't lost any weight since he'd seen her! In the meantime she had had a 4 day stomach flu and total change in her diet. Hardly any fat at all!! And we are maintaining!! I am so excited to see what she will weigh at our next visit. I feel so much better about what food I am giving her now and would love for her to thrive on this diet.
So it has really been a great few days, we are doing treatments (CPT & Nebs) and just hanging out together.
Yesterday I also made a "drop" aka: stool sample yesterday, they are testing her fat & carb absorption. So I am really interested to see how those come back.
Just wanted to keep you all in "the-loop" with Ayla and her progress. I really feel like this is the beginning of a turn-around in her GI health. It's crazy how dietitians tell me to pile on the fat and that may have been part of our problem in the first place.
I guess you live and you learn.
Hope everyone had a great Christmas and Happy New Year!


Saturday, December 26, 2009

We had Such A Merry Christmas!

Christmas was so wonderful this year, we at the Tucker house had a lot to be thankful for. Ayla was really into all the fun this year and got everything she wanted and more! My husband really surprised me and got me a MACBOOK! I was so excited...I have been dreaming of one for so long. I enjoyed watching my husband open all his gifts...he got some cool things as well.

Ayla also got a "christmas-cough" yesterday. She starting this yesterday morning, so we hope this just goes away on it's own. I will probably take her to the Dr. on Monday just to get a listen...
After our morning at home we went to my mom's house for a late lunch. It was very good..I was so tired I couldn't move!
2009 was such a great year can't believe it's almost over~

Update on Ayla's eating: She's really been adjusting well, I haven't gotten her totally used to the milk supplement they prescribed yet. But as far as the food i've offered, she's done amazing!
And we have had really good BM's, no grease, and hardly any belly pain.


Wednesday, December 23, 2009

Shand's Update: Full Story...

My mom, Ayla and I left on Monday morning for an afternoon appointment with the GI Dr's @ Shands. They wanted to see her because of the re-occurring C-diff she's been having.
Before leaving Ayla contracted a stomach flu over the weekend....and the morning before we left her daddy had it as well. Driving down I felt a little "weird" but was not missing this appointment. We made great time on the way down, we were hungry so we stopped and ate at Cracker Barrel for lunch. Ayla was really sleepy and grouchy. Her little bottom was hurting from going to the bathroom so much.
We got the appointment right on time and waited for the Dr's to come in. I had a list of topics to discuss, mostly about my concerns in the previous post. The Dr's were very thorough, they spent over 30 minutes with us. When they first came in Ayla looked very lethargic and was dehydrated. They considered admitting her for that, but after drinking Gatorade she perked right up. I began to ask them my questions about the labs we've had and if they were testing correctly for c-diff...Turns out they were...bummer! So she really did test positive for c-diff. I also told them I had made the decision to take her off those meds and start a diet of less fat and sugar to see what happened. And that I had seen some improvement before this virus happened.
The Dr's left the room and came back in after talking things over with each other and this is what they suggested:
They want me to limit fats and sugars from her diet, she can have no milk. And they want her to eat plain yogurt as many times a day as she will. Basically what they are trying to do is give her belly a rest so it doesn't have to work so hard and it can heal itself. They are also prescribing a formula for her to replace milk, that's calorie dense and is pre-digested (so it's easy on the tummy).
This will be a major change for us all because basically everything she usually eats she can no longer have. I have to change my way of thinking from all fat to no fat...I am hoping that she will take to it well. And it would be awesome if we could broadened her "food-horizons" in the midst of this. And to top it off it would be a miracle if she could thrive on this sort of diet. I would feel much better about the types of foods I was giving her if she could eat like this all the time.
This is only temporary though, they want her to maintain this diet for a couple of months to see if we can see a major improvement with the C-diff. And if not they want to admit her for a few days to see exactly what she eats and do the required tests at that time.
On the way home we didn't even make it to I-10, I got so sick we had to stop and get a hotel. Ayla was so over riding in the car and she wasn't feeling well either. We are so grateful to Nana for being there with us. What was supposed to be a quick trip turned into an overnighter...But we are ALL better now...

Please pray that this natural approach will work for us!

*they also tested all her liver functions, I will update you on that once I get it*

Thanks so much for every one's concern and prayers over this,

Friday, December 18, 2009

25 Things I love About Ayla...

A little bird told me I should do a post totally dedicated to how amazing Ayla is...so here it is..so Glad I did....I have an awesome child!

1.) She has probably a 5oo word vocabulary...shes 2.5..wait..maybe that's an understatement...
2.) She wakes up every morning raring to go...
3.) She doesn't ever meet a stranger...
4.) She is the happiest child...
5.) She does all of her daily treatments so well and hardly ever complains...
6.) She plays well by herself...
7.) She remembers things from a year ago with no problem...
8) She can recite almost every nursery rhyme by heart...
9) She loves music...
10.) She is so girly and loves doing girly things...like putting on mommy's makeup...
11.) She is a daddy's girl...
12.) She says..."I love you" when she knows she's done something wrong...
13.) She is so healthy..despite our speed bumps...we are so blessed she is doing so well...
14.) She is so beautiful
15.) She is so very creative and imaginative...
16.) She goes to sleep at night without a whimper and sleeps all night in her big girl bed...
17.) She is a big helper to mommy...
18.) She is defying statistics every day and doesn't even know it...
19.) She actually likes to take her daily medicine...
20.) She memorizes books by looking at the pages..after a few times of having them read to her.
21.) She is so sassy...and we love it...
22.) She plays too rough with her boy cousins and gets in trouble....reminds me of myself...
23.) She knows her Dr's by name and carries on full conversations with them at check-ups...
24.) She is VERY independent...
25.) She can say her ABC's correctly, count to 20, and knows the words to Lady-Gaga's song Papa-Papa-Razi! So funny...I have to get it on video for you all..

Just wanted to take some time to point out just some of the wonderful things about my Ayla...she is a blessing every day to everyone in our family!

Thank-You Ayla for being such a bright ray of sunshine!

Love your mommy,

Tuesday, December 15, 2009

The Saga continues...to Shands we go!

Well...Well....Well....what do you know....Ayla was positive for c-diff AGAIN!
I took her to the Dr Tuesday because I have not been seeing the improvements I should. The Dr. was pleased that she hadn't lost any weight. And went on to say that he thinks that we need to re-evaluate the plan of action here. (AMEN!) We have been treating this and nothing is working. The meds they had her on apparently are very strong and should not be used for a lengthy time period. He wanted to talk to the Dr's @ Shands about this.

In the mean time we would do another stool sample..results are above.

So on Tuesday afternoon I get a call from the Dr's at Shands and they would like to see Ayla on Monday. Yes...that's 3 days before Christmas! My mom and I are going to drive down and possibly make the trip in one day.

Everyone involved thinks it's a good idea for us to get Ayla in front of these Dr's. Because she looks so good. She is not showing the normal symptoms of someone who has c-dff according to her pediatrician.

So now my mind is going a million miles a minute...doing research on what else could cause her loose, nasty, greasy stools and this belly pain. I am now forming a list of my own conclusions which could be:

1.) food allergies
2.) enzyme diagnosis
3.) over-abundance of fat in diet
4.) Lactose Intolerance

Our labs in this area are.....well...are not the most "Hi-tech" meaning when you get a stool study done for c-diff anywhere else..they test not only for the presence of the toxin...but the amount. Because in case you didn't know...you have c-diff toxin in your poop...(little nugget of information for you all). And the lab that I have had like 6 stool studies done at has been testing ONLY for the presence...NOT the amount!! Which is like....so stupid!!

So.....I am getting mentally prepared...packing my arsenal of questions...for this trip to Shands. I refuse to come home without a plan of action. Some kind of test to prove that plan will work. And something I can do for Ayla until that plans works.

Thank goodness for doctors, but thank goodness for mommies intuition. I know that I am lead to do the things I do for Ayla by god. It's a full-time job to be her mom....there's no title I'd rather have.....than...

Nurse, nutritionist, mom,
cook, maid, stylist & friend...

Updates to come after visit with Shands. Please keep ayla in your prayers.


Monday, December 14, 2009

C-Diff: volume ____? to many to count...

I emailed Ayla's Dr today because I am concerned these meds she's been on aren't getting the job done.. I am about 90% sure that she would still test positive for C-difficile if tested today. Which makes me very sad. I was thinking about it last night and realized that we have been dealing with this bug since at LEAST September!

Her doctor emailed me back and is going to call in ANOTHER stool sample to be done. But I really have no doubt she still has it. She has been having the same or more belly pain here lately and her BM's are not formed and greasy (for the most part) -sorry for all of you who don't know but we CF'ers talk a lot about poop!

So I will probably get that together (polite words for collecting the sample) tomorrow and take it down to the lab and wait yet again for these results. I think this is the 6th time now that we have done this.

My question to her doctor was "what is the next step in getting rid of this" I mean we have tried 2 different methods now, CMON!

Ayla has been such a sport and still is the happiest child you'll ever see, but I feel so bad that she has had to deal with this all these months!

Please pray that whatever step needs to be taken to get rid of this C-diff (if we test positive) is the right one and that it will work for us!
I'll post an update after labs are done.

frustrated mama,

Thursday, December 10, 2009

I want the answers I want...

This week has had my questioning a lot of things...Does anyone ever feel like "things just aren't going the way they should?" and "this can't be part of any good plan?"

I have spent a lot of the last few years trying to figure out this puzzle that seems to be my life.
Sometimes things will go your way and you'll feel like the luckiest person on the planet, as soon as that thought enters your mind something else will come and knock you down.

Not this is all about problems or whining....But this week I have realized well....that I have issues. Someone else's good news can make me angry at times. I don't really know why, I'm sure I am happy for them somewhere inside...

It was brought to my attention this morning from "a little bird" (you know who you are) that I can look on someone else's circumstances and be envious of what they have or their mentality and they might be looking back at me and wanting what I possess.

So I can feel sorry for myself that my daughter has Cystic Fibrosis and that I can't have another baby without that possibility....Or_____________________________________?

I am sordoph stuck there....OR what? I can tell you what you want to hear me say....but will that make it true?

Don't get me wrong...I know I am lucky! Everyday my child amazes me more and more and I could not imagine her any different.

Well I said that but I lied...I could imagine her without Cystic Fibrosis...This is how it would go: She would wake up in the morning...and eat whatever she wanted...mommy wouldn't be saying no to foods that aren't high in fat and calories. We could forget the enzymes. After that we would watch her favorite movie...we wouldn't have wait until we did Chest Percussion Therapy for that...so she would forget that she has to do this twice a day for the rest of her life...we would then go outside and play or anything else she wanted to and not worry she was sweating too much & loosing sodium or for that matter burning up those precious calories...We could sit together and talk about when she will go to school and what she will be when she grows up...and not have to think of anything but just that...and believe it....

I know that God can heal all wounds of the heart, all sickness, all situations...and he has mended my wounds but they are not healed...I can look at this blog and know that I am progressing in my struggles, because for the longest time I would not speak of it.

I know that this post may not be the most uplifting or fun, but this week there have been some things that have got me wanting answers...

I feel like if God would show me a vision of Ayla being an old woman surrounded by her siblings, her children, and grandchildren...that it would make it all worth it to me...

But I suppose that's like a scientist forming a conclusion from a hypotheses....His end result may be the same but it wouldn't have merit unless it was proven through experiments...

We all want the answers we want. We may not get the answers we want. That's the scary part. I guess we just have to enjoy the life we have while waiting for those answers and hope for the best.

*To waiting....and seeing....CHEERS* ding-ding.....

Monday, December 7, 2009

Keeping up with "The Jones"

As christmas nears I am feeling really stressed. For those of you that have already gotten your shopping done and mailed your Christmas cards...Well that's just great!

But for me, I have not gotten anything done. Every year I want to one-up myself on gifts and do better than I did last year. Being self-employed we don't get Christmas Bonus' or anything cool like that. We pay the bills and then whatever's left...we do christmas.

Ayla is at such a fun age this year being 2.5 she really understand Christmas and is totally into it. We just want to go all out for her and each other. My husband Larry always says "he doesn't want anything or that he would rather be able to give us (my daughter and I) a great Christmas than get a bunch of things himself." Isn't that what all guys are supposed to say? But they can't really mean that. I am feeling guilty this year because I really want to get him somethings that he doesn't expect...But since I don't work..he knows how much money I use because he gives it to me...So it's hard to pull a fast one over on him.

I would really like to be the perfect stepford wife and have the perfect home, christmas cards mailed with smiling faces, have all the best gifts bought for every member of our family, bake fresh cookies, and be a size 6 all at the same time. But Ive come to the realization that I cant!

So I hope all of you ladies out there realize that we can only do what we can do.. If the moneys not there we can't go into debt trying not to hurt anyones feelings. The power bill is more important than our image.

We can't all keep up with what everyone else is able to do. But we can help someone in need and take care of our families as best we can...and happy with that!

I hope you all enjoy doing what you can and be okay with what you can't!

Thursday, December 3, 2009

My Funky Mood...

Since last weekend I have not had a very good attitude. I've been easily annoyed, bored out of my mind and just plain stressed. I've been told that I don't deal with stress well...who knew?
"A little bird" told me that maybe the reason I'm feeling this way is because with the holiday last week and having friends come to stay with us, I had something to look forward to.
And as it always does life tends to make it's way back to the normalcy we love to complain about.
This week I have hardly gotten dressed at all, the only time I did look half-way descent was to go to Bootcamp twice this week.
We as a family meaning our entire family-every branch on the tree is feeling this economy crunch. Some of us are suffering from the housing market crash and others are just trying to make it in sales of some sort.
But it all SUCKS! There I said it!
Larry and I are definitely on that list, we have made many bad financial decisions in our time. And I have to admit that some of them were due to my personal lack of patience. We couldn't wait to make major decisions, we flew by the seat of our pants and we've flown right into a deep-deep hole.
I know that so many people are going through these types of struggles. And with the holidays approaching it doesn't make it any easier.
Larry and I have learned from our mistakes and are paying for them...We are in a "season" of our lives and we have to pray that spring will come soon.
And that God will continue to show us the right paths to walk down in all facets of our lives.

*for all of you who think I'm complaining please see post: "I'm Thankful for..." and know that I realize I have ALOT to be grateful for...this is my "breathing room" and I needed a breather today, so thanks for listening*