"Everyone needs a place to call their own"

Friday, January 29, 2010

Home Sweet Home

We just woke up from a much needed night's sleep in our own beds. Ayla is running around like nothing ever happened. Larry's getting ready for work and I'm having my morning "computer fix."
I have got my fundraising hat on again...I have all these things I need to do in my mind..and April is approaching fast. Not to mention Ayla's 3rd birthday that I need to plan that month as well!
We are definitely having a multi-family rummage-sale at Image Maker's Salon on 2.20 (located in the parking lot) and all the proceeds will go to Great Strides via Ayla's Army. I am looking forward to making that really successful, I know I have a lot of stuff to get rid of.

Now about Ayla, the Dr's have started her on a daily Miralax regimen. This should help prevent any further blockages. I hate that she has to take yet another medicine daily but if it will help her, I'm all for it. The Dr's really aren't sure that she hasn't had this blockage for months, so all that time we were battling C-diff-could have been signs of this blockage. I mean you think she's pooping and it's not hard. But like her Dr said, your poop will liquefy if it needs to get around something. And that makes sense to me.
So I'm going to be "On-Guard" for new things including all the old signs I watched for now.

CF is such a crappy disease-literally!

Thursday, January 28, 2010

Outta Here!

We are waiting for the orders to be written for us to go home.
Ayla has been doing really well, she's eating good and feeling great.
Her Poops have still not fully recovered but it's better than the alternative.

Yesterday they tested her for C-diff and it was negative, so that's just a nice thick layer of icing on our cake! Hope it will stay that way.

We will be driving home soon, we are so glad to be coming home!

Thanks for everyones love and support, this has been a hard week. But we learned something new!

Wednesday, January 27, 2010

Maybe....Maybe not..

We thought for sure last night that we would be coming home today.. After seeing her poop and then getting to eat real food this morning.
But I am not sure that's the case now. Her dr still hasn't been in today because he had clinic and will be here this afternoon.
Our nurse told us they may want to watch her until tomorrow so she can have a night off all the meds.
So I will let you know, if it is today for some reason...it will be late.

Thanks everyone,

Tuesday, January 26, 2010

Ayla Update 1.26 1030 PM-success!

Shortly after I posted earlier this evening..i bribed my child to poop..

I said...I'll give you your balloons if you go poop.
She said..ok..
I said...You promise?
She said..yes..

So we went to the bathroom and she went!!! YAY!!
That's what we wanted to see to feel confident that everything was going to be okay.

So I think it's going to be a sure thing that we will be on our way home Wednesday afternoon!

Thanks for all the prayers~ they have really helped us during this difficult time,

Ayla Update 1.26 730pm

Ayla has been doing better today. Her Xray improved more from yesterday and she was started on clear liquids. She has been loving some gatorade and chicken broth. We are still waiting for her to take a poop, and if everything goes well- we might get to come home tomorrow!
Her Dr's I think are pretty much baffled by this whole situation. As to why she got obstructed pretty much overnight. I mean wednesday she was pooping and thursday she was blocked. They have even ventured to say that she has been becoming "blocked" for all the time she had c-diff. Because your stool will be liquid if it's moving around something solid. (sorry ppl)
We also thought the major change of diet might have had something to do with it, but they are not sure this hasn't been going on longer.
So we are all left scratching our heads..and I hate it..I want to know why, how, when & where
I will be contacting a pulmonary nutritionist about forming a happy medium to her diet..slowly incorporating some fat back into her diet. But not like we were doing before.
So please pray for POOP!!

thanks everyone,

Monday, January 25, 2010

Ayla Update 1/25 11pm

We are resting from a much better day. Ayla has been up taking rides around the PEDS floor in the wagon and playing with PLAY-DOH and coloring. She has been much more herself today and we are loving it.
They removed the NG tube today and it's so nice to see her sweet face tape-free.
We are hoping she can have something to drink tomorrow. They will take another xray in the morning so hopefully things are still improving.
Once she starts eating we will need to see a normal bowel movement. She has been having very BAD gas pains. She got a tiny bit out today that looked very hard still. (sorry people, I talk about poop ALOT).
When we finally get to go home I am going to talk to the Dr's about her diet and what could have caused this abrupt of an obstruction..it was like overnight!
So that's all for tonight I suppose. Thanks to all of you who have been praying for us!

Ayla Update 1/25 12:30pm

Thanks for the flowers Nana, & Glass Family~

Today the Dr came in and said this morning's x-ray was better than yesterday. We are going to take the NG tube out this afternoon.
Still no poops, she was having pretty bad gas pains last night...it was so sad.
And if all goes well tomorrow try something to drink.
She did get out of the bed to go for a ride in the wagon around the PEDS-Unit we pulled her IV along beside her. She was actually talking to people, so thats a good sign.
She acts like she feels better today than yesterday.

Thanks for all the prayers,

Sunday, January 24, 2010

1/24 1:00 pm Ayla Update

Head of GI came in just a few minutes ago. He said this morning's X-ray showed improvement after last nights and this mornings enema's. He feels like her lower bowels are empty and there may be something left up top that needs to come down. He cancelled the 4th enema we were fixing to have to give her, whew!
He wants to watch her today, he is going to take the suction off the NG-tube (draining her tummy) and see what happens. If things go okay with that we might be able to take it out tomorrow and start fluids.
So that is all I know, she is very tired today and not acting like she feels well at all. She slept all night and has been sleeping all day today. Which is good.
Updates to come,

Saturday, January 23, 2010

12 am Ayla Update

Well...I am sitting here, everyone has gone to the hotel and Ayla is sleeping. She is so exhausted from the day's events. She had her second enema about an hour ago, didn't go as well as the first. Our day nurse really knew what she was doing, and I wonder if the 2nd was done wrong. Or I could be totally wrong and there's just no more stool up there. She had a small amount come out after the 2nd enema.
Tomorrow at 5am she will have another enema and then an xray to follow. That will tell us what we need to know.

Please pray that the obstruction is clear tomorrow.
She is so over all these tubes and is thirsty and hungry!!
Momma hates to see her dealing with this.

I am going to try to rest, I am running on about 4 hours of sleep in 48 hours..But I feel wide awake right now.. It's amazing what a mommy's body will do for her child. anything it needs to!!

Thanks again for all the concerns and prayers, We have some great family and friends.

5 pm Ayla Update

Ayla's nurse came in about 330 to give her then enema. Ayla did not like it at all and neither did her mommy! After she got it, we could tell she was having some discomfort. And within 10 minutes she wanted to go potty.
I sat her down and left her alone (it's a private thing for her) and just prayed to myself that she would go. AND SHE DID!
Poor baby had tiny little rocks..and seemed happier right after.
She asked to hear her favorite song..PAPARAZZI...so I played it for her on my phone and she sang some while using bathroom..pretty funny!
The Dr's are very pleased that she went and were calling for 4 enemas/ 6 hours apart and now say they may only need one more before x-ray.

Please continue to pray for her, we need x-rays to prove that this has passed and there's nothing else going on.

ps- they just weighed her and she was 26 pounds on Thursday and she weighed 27.4 today! Don't know how, different scales (but we'll take it)!

Thanks everyone,

Update on Ayla 2:00 pm

Quick update, The GI & Surgeons want to try and enema. There is definitley a blockage in her bowel and hopefully this will move it out. It's very low in the bowel.
We are waiting for the nurse to come and do it, please pray Ayla tolerates it as well as possible.
We are hoping to see an improvement on X-ray after completion of enema.
If not we will have to have a CT scan to see if there's something else causing this blockage.

Please pray with us that this is just a "tough-terd" and will be moved after this enema.

Updates to follow.

Quick Update on Ayla @ Shands

We were transferred to Shands yesterday @ 7:40 pm and made it here @ 2:30 am eastern time, it took forever in the Ambulance. We should have been here Thursday night but Fort Walton Beach Medical Center made a difficult time even harder (complaint will be written).
But whatever we are here now, where we need to be. Where Ayla can get all the care she needs. Since arriving they have done an abdomen x-ray & bloodwork, still waiting for head of GI to come and see us. Peds surgery came in to consult and said they needed the x-ray to know what was going on..still waiting on that.

They are still not sure but feel like its some kind of bowel obstruction...been there done that..don't want to do it again...PLEASE PRAY!

So right now we are just trying to keep Ayla comfortable, she hasn't been able to eat or drink in almost 48 hours.

Thanks to everyone who has called to check on us, and the prayers.

Updates to come,

Tuesday, January 19, 2010

I Joined Cystic Life

A fellow blogger has created this new site for Cf'ers. If you are affected by Cystic Fibrosis in any way you should join this site.


I have been a member of Cf groups through yahoo and other sites but have never found something so personal. You actually tell your CF story, upload pictures, and have direct link to your blogs or social networking sites.

It's a more updated way to have access to faces who actually know what we're going through. You can ask questions and get answers!

Who knows more about Cystic Fibrosis than the people who are dealing with it daily? So I encourage you to make this your "Facebook-for CF'ers" and find me after you Join.

Thanks Ronnie for a great new tool!

Friday, January 15, 2010

Ayla is swallowing Enzymes!

My daughter is so amazing!

Today I read a fellow CF mom's blog (www.nathansfight.com) she did a post about trying to train her son to swallow his enzymes. My sister turned me onto her blog and I read it, and it got me thinking...I wonder if Ayla could do that. She almost 3 and adapts to pretty much every change I've ever tried to implement.

I didn't read it until after her afternoon snack so I had to wait till dinner to try this on her. Dinner came and I got the enzymes and this time I didn't break open the capsules like I usually do..I just placed them into some applesauce put it on a spoon and into her mouth. And she tried to spit it out but once I said no swallow and gave her some milk she downed them like a pro.

I said: "Yay, such big girl!" "You take your enzymes like a big girl!"

She was so excited about her accomplishment.

So just now for her after dinner snack she wanted to try without applesauce. So I got her some water put an enzyme on her tongue and said don't chew. She swallowed it like a pro!!

Could this be the end of packing applesauce, Dixie cups, & spoon every time I leave the house?To just take a water bottle and her pills and go will be amazing!!

I think we might be there...Going to see how tomorrow goes. But those of you who know Ayla, understand that she is the most adaptable child. She doesn't miss a beat with change.

I am so lucky!

CF Awareness Jewelry

I found this site on Facebook, she is also a member of a CF chat-room on yahoo that I participate in. She has started this amazing jewelry line, I am so excited about this because I have been looking for something to wear or put on my car to raise awareness and questions about CF.

And I found my favorite necklace which I am ordering, she will also personalize these beauties.

So become a fan of hers and get some of this bling with a purpose!



Thursday, January 14, 2010

This Could be the Piece that Fits....

I got a call yesterday as I expected from Ayla's GI Dr's @ Shand's. The nurse called to of course give me the results of Ayla's C-diff test (which I already had because I have found a way to find out before they do...sneaky-sneaky). And to also get an update on how she's been doing so they can get an idea of what to do about this now.
I went on to tell the nurse how great Ayla has been, and how she's eating so well and almost completely symptom free. She took the info and said she would be getting back to me after getting with the Dr's.
A little while went by and the phone rang, it was the nurse again. She told me how happy the Dr's were to hear of her improvement. They didn't want to change anything as of now since she's doing so great.
Then the nurse went on to say something that sent my mind into a whirlwind....
"The Dr's think Ayla might be a carrier for C-difficile"
Questions just started pouring out of my mouth....."What does that mean?" "Does that mean she will carry this forever?" "Is this a good thing or a bad thing?"
The nurse stopped me fairly quickly and said she had all these same questions. But of course that statement had been trickled down from person to person until it got to me and she was not the one who could answer my new list of questions.
So she said that I needed to call if Ayla's condition changed and that they would be getting back with me in about a week.

So having all this new information I am just thinking all kinds of things...Like:
What if all of Ayla's time she spent in hospitals her first few months of life is to blame for this? What if she picked this up then...and has been a carrier ever since!
What if all these antibiotics have not helped the situation at all but made it worse?
Why hasn't anyone in our family picked this up from her?

After I got off the phone with the nurse I immediately got online to google: C-Diff carrier..
(which is probably the worst thing you can do, but that's never stopped me before)
And I found some major food-for-thought.....more like a feast-for-thought....

There had been lots of trials done on animals and people to test this very thing. In some of the cases I read..the subjects who tested positive for C-diff but showed no symptoms were put into an environment with subjects who didn't have c-diff and it was found that they DID NOT infect the other subjects in the group! And when they were administered antibiotics like (vancomyacin & Flagile-the same ones they've tried on Ayla) the state of their dormant c-diff became enflamed and enraged.
*I also found that 70% of infants and children who test positive for C-diff will become carriers for a period of time*

And thinking back Ayla was having the worst symptoms of C-diff when she was being treated for it.
So taking all of that into consideration...that's now got me thinking that Ayla's greasy-unformed BM's and her bloated belly...could have been her diet all along! Since we have seen great improvement (almost 100%) in those areas.
After all, the continuing presence of those 3 things is what prompted me to push for a stool sample in the first place.
And having that test done was the only way we would have known she had C-diff. So she very well could be a carrier for a dormant state of C-diff and has been since her very first hospital stays. Which would explain why she has not infected anyone else who's been in contact with her.
I think I have a degree in medicine after this post :LOL

Her Dr's are not going to know what hit them when I come in talking about the research I've done.

So In a way this has got me feeling a little better about this situation. Knowing that it's common for children who acquire this bug hold tight to it for a long time without become ill from it. And that her symptoms could have been from something so easy to change...diet!
I feel sad that she could have picked this up so long ago in a place that's supposed to be safe and can often times be more dangerous than the reason that brought you there....a hospital...
And I even let myself feel a little sorry for her that she could be a "carrier" for something besides CF.

I feel very grateful that we are dealing with the strongest baby girl in the world, who is dealing with so much going on inside her little body and never acts like a thing is wrong. How blessed are we?

But we will find out more next week about what her Dr's "officially" think..and get a face to face with them in February to get the whole story.

Until then,

Tuesday, January 12, 2010

Update on "The Drop"

Well...I promised an update so here it is....

It's not the one I wanted to be giving you all today. The test came back positive.

I am so bummed about this.

I really thought the test was going to be negative because we have seen such an improvement in Ayla this past month.

I don't have much to say I am so disappointed, so sad that our efforts thus far have failed-but not entirely.

We went from 4-6 greasy BM's a day, with constant belly pain, and hardly eating TO
2-3 good BM's a day, with much less belly pain and eating better than ever.
So that's something to be grateful for.

I guess now I would ask all of you who read this to continue to pray for Ayla, pray for the belly pain to stop completely (I'm thinking when that is gone in total, the C-diff will be as well). And when we go to Shand's in February for this to be gone. If not they will consider admitting her for a few days to do further testing to find out what's going on.

I have not yet heard from the Dr's @ Shand's, I imagine they will call in the next few days to see how she's doing and talk about these results. I will let you all know of any changes in our approach to this as they come.

"For I will restore health to you and heal you of your wounds," says the Lord. (Jeremiah 30:17)

Monday, January 11, 2010

Another "Drop" to be made Tues...

Ayla has been doing so great! Her appetite has increased more than it ever has. She is actually saying she's hungry all the time now. Before the change of diet to less fat, she would never ask for more helpings and barely had an interest in food at all.

Recently she has been trying to new things eating 3 meals a day with 3 snacks a day because she wants too, not because mommy wants her too. It makes me so happy to see her eat and enjoy it. And I feel a lot better about the foods she's getting now.

I took Ayla to the pediatrician last week because she had a cough before we went to my sisters and she has lost about a half a pound :0( We don't ever like to see that. But I guess that's to be expected since she isn't aloud to have milk until we get rid of this C-diff "officially". Her Dr's weren't overly concerned by it. They mailed me an order for another test to be done to see if this C-diff is gone. And to see if this "natural" approach to getting rid of it through diet change worked. I got that order today in the mail. So as you may suspect I have already "collected" the specimen and we are ready to take it first thing in the morning!

I am so afraid to say it but I think this may have worked this time. She really seems to be feeling so much better. I usually get a call the same day I drop it off with results. So I will do an update tommorow to let all of you know the "official" results.

By the way Ayla got rid of her yucky cough all by herself with no anti-biotics, for Cf'ers that's really awesome news!

Please keep Ayla in your prayers for a negative test result and no relapse!

Monday, January 4, 2010

Off to see the Gifford Family....Knoxville Bound!

Today I am going to be running around crazy trying to get everything ready to go see my sister and family in Knoxville, TN. It's my youngest nephew (Nolen's) birthday and my mom and I are heading up for a few days. Ayla is so excited to see her cousins. Last night before bed she said "I only have to go to sleep one more time before we see Gavin & Nolen?" So cute...she loves them so much!
Ayla has had a cough for over a week now that hasn't really changed much. So I am taking her to the Dr. today before we leave town to make sure it hasn't moved into her chest, and it's always good to see what she weighs. Always better to be safe than sorry.
Other than that I am doing laundry, packing machines, meds, and foods that I can travel with for her. We Cf'ers never travel lightly do we?
It's most likely going to be snowing up there later this week! I am really excited for that, Ayla has never been in snow. I'm excited for it as long as I don't have to drive in it. The anxiety from that has made me do weird things in the past (right Mom, Harry, Connie?)
So I may not be posting more than just photos for about a week. I will have so many of the cuties. These kids are so much fun to watch together. They think they are siblings, especially Ayla. She beats up on them and they just let her because they are sweet little boys. Hopefully my child can get a little closer to learning how to share this week, having a few brothers to split the toys with!

Please pray for safe travels and good health while were gone,

Saturday, January 2, 2010

New Years Resolutions and Goals

So it's January 2, 2010 (that feels really weird to type). I hope that this year will bring many great things for our family and friends.
I have never really been one to make big proclamations on new years day about what I am going to do or not do. But this year there are a few things I would like to think I could change in 2010.
  • I'd like to make more of an effort to exercise beyond just doing bootcamp twice a week.
  • I'd like to find healthier ways to get Ayla the fat and calories she needs, even if it's hard!
  • I'd like to finally make a decision with Larry on whether or not to expand our family.
  • I'd like to try not to make anymore bad financial decisions.
  • I'd like to pry the passy from my daughters mouth for good.
  • I'd like to begin "officially" home-schooling Ayla.
  • I'd like to raise a lot of money for the Cystic Fibrosis Foundation.
I'm not sure if I will perfect some or all of these things, but that's the goal. I can already think of other things I should have put on that list (like being more anal about Ayla's treatments) I already am but there's still room for improvement!

I am hoping that this year will be better than last year for my family. For some of them, it's been a really hard year.
It's always a good feeling to begin a new year, almost like a clean page in a book and you have the pen & the ability to write your future. I wonder what mine will say?

What are some of your resolutions and hopes for 2010?