"Everyone needs a place to call their own"

Monday, October 25, 2010

What a difference a little more Zenpep can make!!

So when we were at Clinic a couple of weeks ago I was telling the Dr's about Ayla's tummy pains and frequent messy stools...they wanted to do a stool study to rule out c-diff and when they did the nutritionist recommended breaking one of the Zenpep 10's I had in half to see if that helped...

Well it really has helped. It's amazing what a small change in enzymes does to help! She has had significantly less belly pain and almost perfect stools averaging 2 per day!

Thank God for Zenpep!


Friday, October 15, 2010

This song is amazing! Almost a mirror image of our lives awaiting Ayla's birth...

there was never a doubt baby girl! Im gonna show you what it means to be loved.

Thanks to blog Nathan's Fight for posting this today, really blessed me!!


Thursday, October 14, 2010

Lab Update from GI

I am so blessed to report that Ayla's GI dr called just now and her levels have returned to normal! A decrease in levels would NEVER happen if growths were present in the liver!! Praise the lord thank you for hearing a mother's cry!!

Wednesday, October 13, 2010

CF and GI Clinic Updates

Our first appointment was with GI/Liver Clinic.  The Dr. was overall pleased with her demeanor and thought she looked really good.  Her tummy was nice and soft when he did his exam.  

A few months back in August I posted about an Ultrasound he ordered for Ayla due to an elevated Alpha-fetoprotien level in her blood work.  The U/S came back normal and I thought that was the last I would hear about it.  But he wanted to tell me that he is going to be watching that level with each round of labs he does.  Apparently a rise in Alpha Fetoprotien levels can mean some sort of growth/mass within the liver.     

*Now this is worst case scenario, which of course they have to tell us...but we REFUSE to believe that's the case for Ayla*

Needless to say we repeated labs today and are awaiting test results.  I know you are thinking...."her ultrasound showed no mass" but apparently an U/S can only detect larger growth's and could miss a smaller one.  There are types of scans that he will order should labs show elevated levels again. 

*Again we are praying against this*

So that issue is very much on my mind....but I am just eager to hear the confirmation of what I already believe..that Ayla's levels will have returned to "normal" range.  

On to the next thing...we're testing Ayla's stool for C-diff!! Yes...it's a possibility she has this again.  She's been on 3 different rx's for her cold she has now kicked!! And that's when C-diff rears it's ugly head.  Her tummy has been hurting and her BM's have been pretty nasty.  

He also recommended a change in diet to rule out a Fructose Mal-absorption.  Since fructose (sugar) is a type of lactose this could cause some pain and bloating as well.  I have tried this before when we were dealing with C-diff for a period of 6 months and seen some improvement.  I have tried to incorporate some of these ideas all the time in her diet but at times....we all reach for the easier packaged snack..and I am guilty of that. 

So I think we are going to try and make some changes again and see what we get.  Taking the "sample" to the lab tomorrow to test for C-diff- we usually hear the same day-so as updates come on these labs I will post at that time.  

We would appreciate all the prayers we can get for Ayla her health and these labs.  

CF Clinic was rather uneventful...which is great!! She sounded great, she is at the 50% percentile for weight at 32.5 pounds.  I was excited to show them her PFT results that I had done at a local children's hospital (to show that she was able to do them) it was mostly practice for her but now they are going to perform these tests at each visit and were able to get a baseline today!!

She is really such a trooper, we had labs drawn, appointments all day and sputum culture and she was still a joy to be around!!


Sunday, October 10, 2010

Our Weekend!

We had a great weekend! We spent the day on Saturday at our local Pumpkin Patch....Ayla enjoyed the petting zoo, bouncy house and picking out our pumpkins!

After that Daddy took us shopping....Ayla needed some warmer clothes for the year.  It was fun, but boy shopping for girls is fun and expensive!! She got so many cute things!!

I even got a new pair of running shoes for 30$ on clearance!!  Larry even splurged and actually bought himself a few things! (He never does that!!)

We came home and Larry and Ayla had some father daughter time while me and my friend Brittney went out for Sushi and a movie...It was so much fun!!

Sunday brought a great church service, Ayla actually wanted to go in children's church and had a blast!!  After that we went to lunch with some family and came home and had a relaxing day!

It was such a nice weekend, now to get geared up for the week.  We have Clinic on wed in Gainesville!

And I'm starting an exercise plan called Couch to 5k tomorrow.  Those of you who know me need to make me accountable!! It designed to gradually work you up to running a 5k in 2 months!  I am actually going to wake up before everyone in my house to do this....It's the only time in the day I routinely have someone to watch Ayla-bear!

So wish me luck and prayers for good Clinic appointments!


Thursday, October 7, 2010

Ayla riding her bike

Disney Live!!!

We are going to see Disney Live tomorrow!  Ayla is so excited, with her being sick we have been cooped up in this house too long!!

It's going to be a great day for her and for Mommy...too bad Daddy has to work :0(  He's been sick too and is playing catch-up!

I will have pics and video of our big day!!


Tuesday, October 5, 2010

A Sticky CF Cough.....

Well I hate to say it but Ayla has a CF cough....she has not responded well to the 2 different antibiotics her pediatrician prescribed and this is day 12 of dealing with this.

Her nose is less runny but I can still suck out (gross sorry) green gobs of mucus.  Her cough is still very productive and she's even gagging on the mucus that comes up.  Im trying to get her to spit but she hasn't figured that out yet.

I have called in to the CF clinic and am awaiting a call from them to see what they want to do.  We have clinic next week with GI and CF so we will get a full rundown of this then.

My usual partner to go on our clinic trips with us (Nana) is going to be with my sister who's due to have my nephew Cohen anytime now, so we have to figure that out.  But no biggie, I'm not opposed to going by myself.  Her daddy owns his own business and comes with us at times but with me being a stay at home mom, we can't afford him to take off much!  ~We love you Larry~

Hoping I get the call soon from Shands to let me know what we should do about this sticky cough~