Update Dr's Called

Ayla's Dr called today and after showing the images to peds radiology and surgery they want to admit her Monday morning. They plan to do 24 hours of "cleaning" with laxative to get her all cleaned out. And the next day do some more diagnostic testing, possibly another Upper GI with small bowel follow-through or CT scan to look at her GI-tract when it's empty. After that's done if they see enough evidence to do surgery they will, but if they need to get a better picture they will do an upper endoscopy :0( which she will have to be asleep for..

So we are just hoping for the right tests to be done to determine the problem once and for all!

With everything going on with Larry's Grandma he will probably stay behind during the testing phase to be with our family. He will come over once we know what's going to happen.

My mom is going to go down with us Sunday night!

Please pray for informative tests and safe travels, also Larry's Grandmother and family during this "doubley" difficult time! (if that's a word)..

Thanks to everyone offering prayers and support to our family.

"A Narrowing of the Bowel"

We had an appointment for an Upper-GI with small bowel follow through this morning @ 8:30 am. Going into this I had no idea how involved it would be. We arrived @ 8 am for registration and Ayla was downing the Barium by 8:30. The pediatric radiologist was the one performing the test which made me very happy because I could pick his brain. We took a series of scans with breaks in between to watch this liquid move through her digestive system.

The first few were really irrelavent so we talked through those, I learned that he did his residency @ UF Shands and I told him about why we were having this test done...and he told me more than once how amazing it was to see Ayla. When he was in school in the late 70's he had learned about the Kasai (procedure that Ayla had on her liver) and it was a pretty bleak prognosis. And she was literally a real-life miracle sitting in front of him.

(that's our little Righteous-Oak, giving Hope to everyone!)

After that conversation I felt very comfortable with him through-out the rest of the scans. About the 4th scan we had is when I saw his eyes grow and I knew something was wrong. He began to point out "an area of concern" the image showed a large loop of bowel that was balooned out and then a smaller area that "narrowed."

There was that word I feared so much!

He took many more shots and felt confident thats what was going on. He explained that's probably what caused her most recent blockage. That over months of only liquid getting through it would completley block.

He also mentioned another issue of lack of motility. Which to us means things aka: "poop" doesn't move through her digestive system as quickly as it should. The barium that she drank should have not been visible after about an hour and we were still seeing it everywhere more than four hours later!

So I fear I will be getting a call from Shands tommrow, and we will need to go down again...but for surgery this time.

Yes I said surgery! My worst fear has shown itself yet again for the fourth time in Ayla's life. It's somthing I thought I could not survive but i'm sure I will. I have not yet heard from the Dr's but feel confident in the report and what I saw.

This news has come to our family at a time where it seemed things could not get worse. With Larry's Grandma fighting for her life the family is at it's wit's end.

I am grateful for the option to operate and that we have found the cause of all her pain and problems. I want her to feel better, but i don't want to watch my baby go into surgery again.

When I heard the words I hardly reacted. I feel like i'm getting used to this kind of news. And that's not what I envisioned my normal to be.

But I know we are going to get through this, I know that she is strong much stronger than her mother.

At this time it's mostly speculation on my part but the radiologist was pretty clear on the treatment for this kind of thing.

I will let you all know once I get the news of whats to come.

Please send your prayers for Mrs. Tucker, Ayla and the rest of our family as we deal with this news.

Bye Bye Passy

On our way to Gainsville Ayla decided she wanted to throw her passy out the window. Ayla was very much a passy baby and had turned into a passy-girl! So we were dreading taking the passy away from her.

It was mostly her mommy and daddy who had the problem, Ayla is so adaptable- I knew she would be over it...But the passy was the last remains of our baby...since diapers are gone, high chair is gone, and now passy...

So back to the story she threw it out the window...and I told her..it would be gone and she wouldn't get it back. She was fine until bed time in the hotel room, she cried for about an hour. And I stood strong..and she fell asleep. Since then she has done awesome!! Mentioning it about once a day but no more than that. She has been sleeping without it and doing great.

So our baby is a baby no more! She is a BIG girl now...

She amazes me daily...

Update From Shands appointment on Feb 17

Things have been crazy so I am just now getting to update you all on her check-ups last week in Gainsville. We were going down for a quarterly appointment with CF center and then a check-up with GI for all of these tummy-troubles.

I just have to say that we love the Dr's @ Shands. I have never had a Dr spend so much time with me in all my life. Her GI Dr was so knowledgeable and spent over an hour in the room with us!!

Her weight was OK, about the same. I told them all about the horrible tummy pains, poopies, bloated tummy and grease.

Dr. H said that he believes it could be one of 3 things:

1. C-Difficile has come back
2. Narrowing of the bowel
3. Cholangitis

He believes it's the #3 option. Cholangitis is something that people get as a complication of the liver surgery Ayla had 2 years ago. About 70% of all people who have a Kasai procedure get Cholangitis. Symptoms from this can be: fever, vomiting, bloating, loss of appetite, pain, and diarrhea. A lot of which Ayla has had.

The good news is the treatment for this is minimal, a prophylactic (septra) daily and another antibiotic when she needs it for flare-ups. The more flare-ups you have the more damage to your liver so we need to pin-point this.

As a precaution we are also testing her stool for C-difficile and having an Upper-GI on Monday morning @ Sacred Heart in Sandestin. The upper GI will tell him if there is any narrowing of the bowel in any area. We are praying this is not the case since that could require a surgery to remove narrowed portion.

He went ahead and prescribed the Septra for her last week. He said we would see improvement right away with that if it was indeed the Cholangitis. And we have seen some improvement. The amount of complaining from belly pain has decreased and amount of stools and grease has also.

So we are hoping we have found the problem and the solution. I am still keeping her off dairy as well. Just trying to give her lots of what she likes to get some weight back on her.

The CF center appointment was very boring (yay!) Just said how great she sounds and prescribed an ant-acid and we were on our way!

Please pray for negative test results from C-difficile and Upper GI.

Thanks everyone,

The Mystery continues...

We are going back to Gainesville Tuesday morning for appointments Wednesday. And I'm hoping once again that they will have some new idea of what's going on with Ayla.

It seems like since we had our run-in with the ER a few days ago her belly has been tore-up! She is going to the bathroom A-LOT and most of the time can't hold it until she makes it. Her poor "pootie" (as Ayla calls it) is raw from going so much.

My theory is that shot of antibiotics she got from the ER (that we should have never had to go to) caused a relapse of C-Difficile! C-diff is often times caused by antibiotics. I am hoping that's not the case of course. Because we had such a hard time getting rid of it.

But I am just so OVER all these GI issues with Ayla, it seems like one thing gets better to make way for another. We have adjusted enzymes till we're blue in the face and that's obviously not the problem.

I stopped giving her dairy because I was convinced she was Lactose Intolerant and now the same symptoms are showing up anyways.

So I am at the end of my rope with all this, I have been keeping a food & poop diary for her so I hope that helps when we see the Dr's.

I just want her tummy to stop hurting~ it's literally been months of this.

And mommy is DONE!

Please pray that this appointment will go well, and that we will leave there with a plan that works for Ayla!

If I've Ever Needed a Breather- Now Is the Time!

Yesterday Ayla woke up from her afternoon nap acting a little strange. She didn't really wake up much and was crying from belly pain. Her face was blotchy and she had a mild fever. I called her pediatrician and he was off on Wednesdays so I made an appointment with another Dr in office.

As I'm gathering my things and getting ready to walk out the door, the phone rings. It's the nurse calling to say that the Dr. wants me to go ahead and take Ayla to the ER! This is how the conversation went:

Me: ER?

Nurse: Yes, the Dr. thinks you should

Me: Dr. Rigby (regular Dr) would want to see her, this is a bit overboard!

Nurse: Well, you said she was lethargic

Me: Yes, but she hasn't been vomiting, isn't dehydrated, and her fever is low

Nurse: I'm sorry that's what the Dr. said

Me: Well this is ridiculous! I am sure that the Dr. looked at the time (3:40) and the size of her chart and didn't want to get involved b/c of her medical history. So please pass this on to her Dr when he gets in tomorrow. And I will be taking her to the ER! Goodbye!

I then got into my car with Ayla and drove to the ER- I was fuming-mad! Got to the hospital and of-course Ayla perks right up and wants to eat and play! But I asked for a chest x-ray while we were there. It came back with a "touch of pneumonia" -their words...

After 2 shots we were back on our way home, and were told to follow up in the morning with pediatrician. (Like they had to tell me that!)

I got home and did what everyone does and Facebook'ed about the day I had. I think my exact words were: "Hurricane Krista will be blowing through White Wilson in the morning!"

So first thing this morning woke up and called right when they opened, and her Dr. had one appointment available. So we took it and flew out of the house to be there on time.

We got there and gave her Dr. the x-ray copy and he came in and said:

"I don't think she has pneumonia! This is what Ayla's x-ray always looks like. This is her normal. " He then went on to say that he didn't want her to have any antibiotics unless it was absolutely necessary because of her tendency to relapse with C-diff. And that he thought it was nothing more than a cold.

We have an appointment next week with Shand's GI and Pulmonology and we will bring the X-ray with us.

Then I brought up the situation with the other Dr cancelling on us and sending us the ER for no reason! And her Dr. basically said that he hadn't had a chance to talk with him yet but that he thinks I am going to run into problems getting her seen with he's not in. That Dr's see her chart and are scared to treat her.

And I said, "Well that's ridiculous! We went to ER for no reason. And I know you would have wanted to see her!" And "that he could never retire because all the other Dr's are scared of my child!" and he said: "I've got another 20 years in me!"

So lucky for us he'll be around for a while. I guess Ayla can't get sick on Wednesday's when Dr. Rigby's off!

For those of you who follow this blog who have CF kids. What do you do about this? I live in an area where there are no specialists (although I would consider her Ped-Dr a Specialist in a sense).

I can see why people pick up their whole lives and move closer to their child's specialists.

For now we will have to deal, but I just think the whole thing is ridiculous!

Whew- Breath taken...

Off Dairy.....again!

Yesterday I changed Ayla's diet yet again....good thing Ayla is so adaptable or I would be in trouble.

I stopped giving her dairy because when I did this before combined with less fat and sugar I saw major improvements in how she felt, bowel movements and bloating as well.

Since coming home and being told to go back to regular diet (high fat) plus starting the laxative we have had bad tummy issues. Poor girl has been going 5-6 times a day, complaining of pain in her belly all day, and her tummy has been so bloated.

So I am hoping that going off dairy and still giving her the good fatty foods in moderation will achieve our weight goals!

Good news I took her to the Dr today and her weight was back up to almost 29lbs. That's what she was prior to the blockage.

We go back to Shands for follow-up appointments next tuesday. I will keep you posted on that when we get back.

Thanks for all the prayers for Ayla!

The Meaning of Ayla's Name

Sometimes people ask me where I came up with Ayla's name..I never really had an answer before tonight. I remember telling people when I was in high school that if I had a daughter I would name her Ayla-I just always liked it. When Larry and I got pregnant and found out we were having a girl, it was unanimous!

A year or so ago larry and I were looking for a bible verse that we felt like was symbolic of Ayla's life and what she meant to us. We found it and did the obvious thing and got tatoos (haha). Don't worry they are very tasteful and capable of being hid (LOL).

The verse is Isaiah 61:3- It reads:

and provide for those who grieve in Zion—

to bestow on them a crown of beauty instead of ashes,

the oil of gladness instead of mourning, and a garment of praise

instead of a spirit of despair. They will be called oaks of righteousness,

a planting of the LORD for the display of his splendor.

Tonight I was bored and looking online at this website that gives you meanings of names and I entered Ayla...and this is what it said:

**Ayla is a feminine Hebrew name meaning "mighty oak tree" or terebinth**

Is that not amazing to you people?? I mean finding out that I was given the name for my child at such a young age! Not realizing until many years later how profound her name would be~

I am a person who at times has wondered if there really is a plan from God...and tonight I got a glimmer of the blueprint.

My husband larry and I are sitting here amazed with our mouths open..

Our little Ayla (the mighty oak) is a earthly example of God's miracles, she is here with us to be a beacon of hope for others.

So many people have spoken these words to me before...but tonight I am actually starting to believe it.

Thank you lord for having a plan for my daughter and letting her mother in on it!

"I knew you before I formed you in your mother's womb" Jeremiah 1:5

CF Investigational Drug VX-809 Shows Encouraging Results in Phase 2a Trial - CF Foundation

CF Investigational Drug VX-809 Shows Encouraging Results in Phase 2a Trial - CF Foundation

Read about this amazing new drug in the works for Delta 508 (ayla's CF mutation)

Looking at every little thing...

Since being home from the hospital I am looking at Ayla with one eye open and the other squinted trying not to miss anything.

After finding out she had a blockage last week and going through all of that I just know there were some signs I had to have missed. Or maybe wrote off as something else.

Since Ayla was born her abdomen has been a little bit larger than the normal belly of a 2 year old. I am very self conscious about it, wondering if people are looking at it and what they are thinking and then if they do ask me about it...having to tell them all about why her belly is big.

I also worry because I know it's uncomfortable for her, I try to put her in comfy clothes that aren't tight around the waist. I can tell it inhibits her when she tries to get up from playing.

Today her belly is looking a little big larger to me, and she is still saying her tummy hurts. When I feel her belly it's usually soft and it feels like she's flexing it or something today.

Ofcourse my mind starts going and I have to call the Dr's to make sure that it's normal. I feel like the laxative could prolly make her a little more gassy. But I am waiting on them to call me back.

So today I am praying that I do not worry and just trust that everything's going to be okay. And try to just see the beautiful child she is and not always let my view get distorted by the What-If's.