April is Bu-sy!!

April is such an exciting month! Look at all we have on the books for this month....

• April 2, first OB appt
• April 4, Easter
• April 10, Aylas 3rd Birthday party
• April 14, appointment @Shands
• April 16, my sister and her family come to visit
• April 24, Great Strides Walk (lots of other family are coming to be here for this too)

This month is sure to fly by with all that we have going on! I will give updates after my appointment friday!

CF NEWS!

By the year 2013, the CF Foundation will have 12 drugs in Phase 3 trials or to the FDA approval desk and 4 of those drugs are aimed at CURING THE BASIC DEFECT OF CF. This is all because of you and your donations! Thank you!

Ayla sings Barney

Our Prima-Ballerina!

Ayla had her first ballet class today, it was so much fun! She was a little shy when we first arrived but after that she was over that.

I was so proud of Ayla she listened and participated and most of all didn't just run around and look at herself in the mirrored walls

(I was afraid she would)!!

I think she's got real potential...she was plie-ing, kicking, & twirling all over the place!

You could tell the mom's who kid's were there for the first time because we were plastered up against the window, fighting for our turn to take pictures and videos.

Ayla's teacher told me after class that she thought she was way ahead of the game for her age!

And they are having a recital in late June for her age group....I had to pay for her outfit and recital fee today. Ohh my goodess, this outfit is so adorable. Imagine a pageant costume with pink sequins and fluffy tu-tu!! I'm so excited!

It made me so happy to see Ayla getting some social-time and just being a little girl..So much of our time together is spent taking meds and doing treatments, that sometimes I forget how much fun it is to just be a kid.

I am posting videos on the post following this one...so check them out!

Our family is growing!

I am happy to report that Larry and I pregnant! We prayed about this decision for a long time, we have literally come so far from a year ago. After what we went through with Ayla we were so afraid to have another child..we explored P.G.D (Pre-Implantation Genetic Diagnosis) and after a lot of thought and prayer we felt like we needed to leave it up to God.

We started trying a couple of months ago and just prayed that if God wanted us to have another child...he would give us another child...and he has!

My sister Allison (blog: Faith, Family, Fertility) is pregnant also, she found out a month ago! She was pregnant with her 2nd child when I was pregnant with Ayla. Cousins 1 month apart is very exciting! We do things together!!

The family is very excited, this is a big step for us...

Please join us in prayer for a happy, healthy baby~

A Much Needed Weekend Away...

We went over to Fairhope to visit our friends the Glass family. We always love a chance to get out of town and spend some time with them. The girls always have such a great time together and Ayla learns a little more about sharing each time (wink, wink)...Here's a few pics from our trip.

Ayla's 3rd birthday is coming up on April 10th. We are so excited to have her birthday party. She has asked for a bouncy house party, so that's what we are doing. Just gonna have friends and family over and eat pizza or something.

I have also heard that trampolines are really good for people with CF because of the jumping and jarring that it helps the thick mucus to break up in the lungs...kinda like a fun- Vest! So thats what we are getting her for her birthday. They have these cute 8 foot wide ones with the safety net. So she will love that!!

I am also enrolling her in ballet today. I showed her some ballerinas on the computer and she was excited about it. She will have class once a week on Tuesdays @ 9:45 am. I am so excited for her to get some "social-time" and have some fun too. And I would be lying if I said I wasn't excited about seeing her cute-butt in that tutu and leotard.

Ayla is doing pretty well health-wise. She is still complaining of belly pain daily, but her abdomen size is down and her BM's are averaging about 2-3 a day. You didn't think i could ever finish a blog without talking about poop, right...LOL

SIBO????

Dr H. called this morning from Shands with good and bad news. The good news is the C-difficile is still gone! Even with Ayla being on antibiotics it has stayed away! That is one less thing for us to be dealing with right now...yay!!

He then asked how Ayla had been doing since coming home last week. I told him she gained 1.5 pounds since mid February, and as far as tummy issues still about the same. Still using the bathroom 4-5 times a day and complaining of pain.

I also explained to him that Ayla is very smart, and knows that when she complains of belly pain she gets a reaction. So she uses it to her advantage at times. She's a very complicated lady...LOL

He assured me that everyone on the GI team was concerned and wanting to take a "watch & see" attitude with Ayla. Which is good..

When I asked if he thought this could be Cholangitis since the xray was clear, he said he thought this was most likely S.I.B.O. (see hyperlink to read way more than you want to about it)

Small Intestinal Bacterial Overgrowth

He thinks its possible that because of her very first surgery when she had a Micconium-Illius blockage removed, the section of bowel that they joined could not have very good motility.

So he thinks it's a good idea to come back in April and have a CT-scan done. This will give a more detailed image of whatever it is they see. And if something abnormal is seen they will most likely do a lathroscopic exam (she will be put under for this) which I don't like at all.

Did I mention we don't have time for this?? Ayla's Birthday party is on the 10th and then we have a couple events for Great Strides, and then Great Strides walk on the 24th!

So please join with me and pray that Ayla will begin showing less symptoms and have a clear CT scan next month.

We appreciate each and every prayer coming our way for our little girl!

Hospital Stay ENDED!

Dr G. in about 6 pm tonight and said we were going home..I think he could tell I was a bit skeptical but he felt like whatever was there got cleaned out by the laxative.

He wants to repeat another :0( upper GI in about a month and make sure things don't look blocked or dilated again.

I guess I am happy with that- I am certainly not looking for something to be wrong. But she has been dealing one GI issue after another for the last 7 months and I want to get to the bottom of it once and for all!

So I am just going to believe that she is done with this and we will have a clear Upper GI the next time as well.

We are in a hotel in Gainesville and I am looking forward to a good night's sleep! And coming home tomorrow!

Thanks to everyone for all the prayers and kind words,

Hospital Stay Update #3b

So I don't have much to update. We had the scan today it lasted about 3 hours and Ayla was so tired afterwards. The "good" news is that the Pediatric Radiologist didn't see any blockage or signs of narrowing.

It's just strange the difference in one scan to the next. I mean if I could feel confident that this was just more constipation and go home that would be great. But we've been down that road before and now we're back with the same issues.

So I don't really want to leave here without a problem and a solution, but that may not happen.

Dr. G is probably going to come see us in the morning and give us the run-down on what the plan is.

She has already gotten to eat this afternoon so she is much happier, which is nice.

She also got the NG tube out! yay!

That's the update for now, until tomorrow~

Hospital Stay Update #3a

We had a scary morning...They took Ayla off the "Go-Lightly" laxative at about 11:30 last night and by 2 am I was running the halls to find our nurse.

Ayla had become very cold, sweaty, weak & lethargic. The nurse came in and tried to take her temperature and could not get it to read. So we had to do it rectally.

The temp came up 92.9!

I saw the look on the nurse's face go from normal to panic and so did I.

She called the Dr's and they ordered blood sugar tests which came back critical at 55!

They ordered for an IV to be started..I managed to get 1.5 cups of Apple Juice in her while we waited.

They were pretty sure she had gone into Hypo-Valemic Shock!

Apparently after the "go lightly" was stopped she became severely dehydrated...it was very scary.

She has been under a heated blanket with fluids running for about 2.5 hours. And her temp was 97.7 last time it was checked.

Her mommy freaked out and Nana was called to pray...but Nana came up here and the 2 of us have not slept. I didn't get any sleep prior to the 2 am scare because Ayla was complaining and sleepless.

So please keep us in your prayers, what we thought was to be a "boring" night certainly was NOT!

We are waiting on them to come get us for her Upper GI & Small bowel series now...Update to come later on that.

Hospital Stay Update #2

Today we are just "hanging out"- Ayla is busy with puzzles, play-doh, markers and doing whatever she can do pass the time.

She is going to be going to the bathroom pretty much all day...until they stop this "Go-Lightly" at 11pm tonight.

After that she's NPO (no food or drink) until after the Upper GI & Small Bowel series- that's early Wednesday morning.

So that's the update for today...

Hospital Stay Update #1

We got to admitting @ 9 am this morning, didn't get into a room until about 1pm. To make matters even more annoying we are sharing a room. We have never shared a room so far, I guess they are super-full. Supposedly we are on "the list" to get a private room. Our roomies might be discharged tomorrow. So hopefully that happens.

Ayla has been up all day with nothing to eat. She has been quite happy though to have her Popsicle's and juice. She has just fallen asleep and it's late in the afternoon- this is sure to make for an awesome night! But with our Spanish-speaking neighbors she's sure to be awaken soon :)

I know your like " So tell us what's going on..already!" Here it is....

Dr G. (Head of GI) came in about 3pm and said that he thinks we need to clean her out slowly...by means of a feeding tube (through her nose) giving her a small amount of some "Go-Lightly" stuff every hour. She will then go NPO (nothing to eat or drink) at midnight Tuesday. Hopefully early Wednesday morning we will do the repeat Upper-GI and have answers that day of what's to come. They suspect a narrowing and if it's confirmed will require surgery.

For those of you who know Ayla- understand how good her memory is and she knows exactly whats going on here, and she doesn't like it! She is anticipating an IV and her "nose" as she calls the NG tube. She is going to just freak-out when they give it to her. I am trying to prepare her for what's to come and not just pretend it away.

She knows it's (the nose) coming and was upset, so she went to sleep. So Tuesday will be a day of mostly waiting and dealing with a mad, uncomfortable, hungry, tired, bored & bossy 2 year old!

That's the update for now, I will keep them coming.

Please pray for a soon discharge for our neighbors, sleep, and answers!

Thanks,