Tuesday, December 29, 2009
Saturday, December 26, 2009
Wednesday, December 23, 2009
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
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
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
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!
Thursday, December 10, 2009
Monday, December 7, 2009
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!
Thursday, December 3, 2009
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*
Wednesday, November 25, 2009
Thanksgiving is such a fun time of year! Getting together with family, friends and OF COURSE the food!
So I thought a good start would be make a list:
I am thankful for.....
Being a: wife, mom, sister, daughter, friend, aunt
Having: food, fun, clothes, money, talents, home, car, BOOTCAMP, health-care for my child, good health in my family
and last but never least: Having a God who is responsible for all of it...
Happy Thanksgiving Everyone!
Monday, November 23, 2009
For the last week or so we have been flying-high around the Tucker home. After getting the negative result for C-diff we thought we had seen the last of it.
For the last 3-4 days I have been seeing symptoms of that retched-bug, I have been keeping it to myself and praying a little harder that night. Yesterday I heard one too many cries of belly pain to be able to ignore it.
This morning I was awaken by Ayla needing to use the bathroom at 6 am. I got a sinking feeling in my stomach when she was done. As this morning continued she had 3-4 Bm's fairly close together and grease was present. Her belly was really bothering her until the episode was over and she had gone all she could go.
I needed to come to terms with the fact that this was back. So I "collected" a sample because I knew I'd need one to confirm my suspicions. I contacted her Doctor and drove to the lab to drop it off.
Less than 2 hours later I got a call confirming what I already knew. They have a more aggressive plan for treating this. She will begin a 6 week course of antibiotics that gradually tapers down on the dosage amounts.
I am feeling very drained and stressed from this always looming over us. With all that I worry about with Cystic Fibrosis, Billiary Attresia and now C-diff my head actually hurts today.
Please keep Ayla and her mother in your prayers we need it!
*On a more positive note: Thank you Jesus for a normal sputum culture (her CF center does routine sputum cultures every 3 months)!
Friday, November 20, 2009
- Golf Tournament
- Boot Drive
- Benefit Concert
- Raffle for a "kitchen face-lift"
- Car Washes
- Rummage Sales
That's just what I've thought of so far...If any of you "followers" have any ideas or suggestions for me that would be greatly appreciated. I am going to be contacting local businesses to get involved next week. If you know of a company that would like to get involved please contact me with that information.
We already have over $2,500 pledged to raise so far! Thank you so much "Team-Ayla"
Tuesday, November 17, 2009
We will be raising money year round at events that I will tell you all about as they come. We will also attend the National Fundraiser for the foundation called Great Strides in April 2010. I have sent some invites to join my team and welcome all interested parties. I would love to raise some serious money to help fund the research needed to cure Cystic Fibrosis.
Monday, November 16, 2009
We have gotten the results and the test was.....NEGATIVE!!! I had been waiting for the phone call all day long. And the nurse called around 4:30 this afternoon.
Thanks to everyone for all the prayers and support. We are so blessed to know that we are past the worst part of this and we can be sure that Ayla is healing from this pesky-bug!
Thank-You Jesus for answering our prayers, and delivering Ayla from yet another battle.
Sunday, November 15, 2009
Most of you know about Ayla's little bug we've been dealing with for about a month now. Of course we've really been dealing with it longer than that and didn't know it. But a month is about how long we have been treating it with meds.
I have been handling a lot of poop these days. I have to take a "specimen" into the lab every time they test her for C-difficile. This is about the 4th or 5th time I have done it now, so I am getting surprisingly good at it.
Tomorrow is the day that they want her stool tested to see if this bug is gone.
I am joking about the humorous parts of this saga, but that doesn't take away from the seriousness of it.
Please join with us in prayer and believe that her test will be NEGATIVE tomorrow. I am gathering the "specimen" next time she goes and plan to have it at the lab in the morning, so I can get results same day. I will be sure and blog about it then.
Thanks in advance for all the prayers.
Thursday, November 12, 2009
Ayla especially loves corn on the cob, it doesn't really matter where it comes from. Every time Nanny comes she brings corn to cook for her and I have to stop her from eating after about 3 ears of corn.
Nanny is coming today, since my sister is leaving tomorrow and we will have a feast. I will be sure to let none go to waste! :)
Wednesday, November 11, 2009
One of the first posts I did was called: "C-difficult" and I explained about a bug that Ayla had been dealing with for about 6 weeks at the time. Since that post she has been on meds twice to get rid of it after testing positive for the bug again. On Saturday she finished the 2nd set of antibiotics and Larry and I are really seeing some good signs:
- She is averaging 2 BM's (poops) a day-before it was 4-10 /day
- Her Stools are hardly ever greasy anymore, this mornings was for the first time in 5 days
- She is complaining much less of belly pain (caused from trapped gas)
- She is having a lot more Gas, which is a good thing because things are moving through
That's what we are expecting!
PRAYER REQUEST: Please say a prayer for Ayla to have a negative test result on Monday for C-diff
Monday, November 9, 2009
I know that I should act like I don't care and she would probably do it on her own. It's just so important to me that she get the right amount of fat and calories. I take it as a personal achievement if she gains weight at Dr. visits.
This is the life of a CF-Mom, always trying to push food down a satisfied child's mouth & wanting to cry when they wont ablidge, adding heavy whipping cream to mostly everything, and giving daily treatments and meds...Ohh I almost forgot...analyzing each #2 that's done every day to see if said child is absorbing said fat and calories.
I do the best I can, and learn from the mistakes I made today and try to have a better tomorrow.
The Food Nazi
Friday, November 6, 2009
The drugs mentioned above are in pill form (yea!), and could be available to CF patients in 4-5 years. It is an exciting time for those of us who have been working toward this for years (I am finishing my 12th!) The more people we have helping fund this research, the sooner it can get thru the trials and on to FDA approvals."
Thursday, November 5, 2009
- That most of the Dr's offices are giving the nasal spray (which is a live form) and can get you sick. The only form I would give to Ayla is the injection (which is dead)
- This vaccine has been rushed to market because of the pandemic in our country and has not had enough trials.
Recommendations from The Cystic Fibrosis Foundation tell me to vaccinate Ayla for H1N1 and all household members. I have been waiting to hear from her Pulmonologist or Pediatrician regarding this matter and have had no recommendations thus far.
I have always wanted to listen to the doctors and my intuition and make the best decision I can for Ayla. I am meeting with the Doctor on Friday to discuss this. Ayla has been so healthy the last few years that we as family sometimes feel that we can be more "brave" when it comes to her care. I am guilty of this as well, thinking: "Well what if she was fine without it?"
But in the end I will listen to the doctors because over the last 2 years God has really orchestrated which physician groups I take Ayla to see and who I don't. I pray that I can get solid information and recommendations regarding the H1N1 vaccine and make the best choice for Ayla.
I will keep you all posted after this decision is made....TO BE CONTINUED!
Watch this Rap Video about H1N1: http://www.youtube.com/watch?v=_gwUdmPl0bU
Wednesday, November 4, 2009
Tuesday, November 3, 2009
For the last 3 months our daughter Ayla has been dealing with a lot of potty-problems. Because of Cystic Fibrosis a lot of the symptoms she has been experiencing can be mis-interpreted as effects of an incorrect enzyme dosage. I really have to stay on some of her Dr's because when you have a child with a chronic illness, sometimes problems aren't always explored to the fullest extent. So after a month and half of Ayla complaining of belly pain, very frequent daily diarrhea I called Shands GI (Ayla sees Dr's @Shands twice a year for Billiary Atresia). And they ordered a stool-study right away at my local lab. Low and behold that came back POSITIVE for C-diff. We went through a round of antibiotics and tested for it again and was NEGATIVE! So just to be sure we had killed the bug we did another stool-study after a week of no meds. And it cam back POSITIVE-again! So now we have her on a different antibiotic and are praying this is the last time we will have to deal with it.