I spent 2 weeks in the hospital with my sissy- I comforted her and helped make her smile!
What I'm Wearing:
I am wearing size 3 diapers
Still in mostly 6 months but mom's buying 9 months because they are snug
Handmade designer booties when I wear shoes
Lots of bows and as always my cute ear-rings
What People Are Saying About Me:
They still say I look like my sister
That I have BIG Eyes and such a cute smile! I love to smile at everyone I see
That I am such a happy baby
That I have the cutest chunky legs
That I have dainty little features
A Note From Mom:
Mommy loves you more as each day passes. Your smile and your tiny little face make each day brighter! You are at such a fun age, it's so fun experiencing each new triumph with you! You are starting to make sounds that sound like words and I can't wait to hear Ma-Ma! Can you believe I love you this much and you haven't let me sleep since you were born??!! haha- Your daddy and sister love to play with you and make you laugh and giggle. Daddy does his tickle-kisses with you just like sissy, it's so sweet! I love seeing him with you. You are such a blessing and we will never forget that! Can't wait to see what next month holds!
Today is Sunday 4/22 we have been here for a week today. We have another 8 days to go.
The Upper GI went well. Her tummy looked much better and the blockage and bowel had completely corrected itself. I guess that it was so blown up due to the amount of stool impacted inside of it.
We decided to get her a PICC line the next day to avoid anymore trauma while being in the hospital. She is getting daily IV meds and a regular IV would not last our entire stay. It was scary letting them put her under but she did well.
Ayla has been going to the bathroom (pee) quite often and while we were here they did a diabetes study where they randomly took her blood sugar and ended with a glucose test. She passed so we don't have to worry about CF related Diabetes just yet. There is a little boy who is 10 next door to us with CF and it looks like he may have it.
These kids undergo so much dealing with this disease. Right now there are 5 kids with CF in the hospital here. They are mostly in for tune-ups there was another little girl obstructed like Ayla.
I found out the type of fungus Ayla has grown in her lungs was Geotrichum Species. It's a dangerous type of mold and the treatment could be even more dangerous b/c the meds are very tough on her liver. Having Billiary Attresia her liver is already at risk-so they want to rebronch to make sure it's there and necessary to treat. From what I have read it doesn't sound very good. I am praying that when we retest, it will not be there.
Ayla is feeling much better now-getting very antsy being cooped up inside and over the next week it's going to get worse! Hopefully we can find ways to keep all of us sane!
My mom and Larry have been taking turns staying here and at the Ronald McDonald House so we have all been taking turns keep Autumn and Ayla. I am still nursing so it's been a little challenging. But we are managing quite well.
Before we leave here the Doc is going to talk to us more about the mold and what we need to do. Until then it's going to be days full of eating, doing Chest Therapy, and Physical therapy and IV meds...and trying to keep her as busy as possible!
Thank you to all who have prayed for our little girl. She is so strong! At times too strong...It's hard being here and seeing the ages of the other kids and thinking about what her future might look like...but for today we will just be glad for today...
We were admitted Sunday night for a bowel obstruction. Ayla was vomiting and in a lot of pain. After X-rays, enemas, Iv's, labs and ng tube she has gotten a little bit of relief.
Ayla is being a trooper at times she lets her tough wall down and will cry it out but she always smiles again. They want to do an upper Gi tomm to check on her bowel and a portion that was enlarged. I am hoping if that goes well she can eat again soon.
We are also in for a tune up since we were here. Which is a 2 week stay. Ayla has a lot going on right now. We had a fungus show up on her bronch and we can't even begin to treat that with everything else we are dealing with. I haven't really been able to process what this means.
Today is Ayla's actual Birthday! She is 5 years old and today was the first time I publicly shared my testimony. We had a special meeting at MOPS called "Tea and Testimony" and I felt led to give mine. We have all come so far and I felt like today was the perfect day to tell this story for God!
It was really an amazing experience. If you know me you know I don't like the spot light and public speaking pretty much terrifies me but today I felt total peace and confidence as I got up in front of 80+ ladies. I know that it was a God thing and not a "krista" thing!
I felt like I was where God had wanted me to be and was doing what he had been preparing me for, for such a long time!
When I found out this special meeting fell on Ayla's birthday, I knew I had to do it!
I wasn't the only one who shared today, another extremely brave woman shared her story and touched us all. I really enjoyed the meeting and the chance to share what God has done in our lives!
Tonight we are taking Ayla out to a restaurant of her choosing for her birthday!
So Ayla is turning 5 on Tuesday we had a big party for her today! I will do a separate post with pictures from the day-it was a lot of fun!
Since Ayla got back from Spring Break her school has been noticing some changes in her behavior..She's not acting out or anything...it's the opposite. She is usually outgoing and very talkative...well since she has been back she's been complaining of tiredness and seems withdrawn from friends and activities.
She has also developed a habit of going to the bathroom (pee) a ridiculous number of times...like 3-4 times an hour...not large amounts...mostly small amounts...
She hasn't been sleeping well either...she wakes up to pee at times and others she just wakes up and says she can't go back to sleep at 3 or 4 in the morning.
There have been some oily messy stools and gassy situations going on in our house which has caused her to come home from school the other day with a distended hard belly from holding it. I think we are developing some embarrassment from passing smelly gas and stools at school.
This is all on my mind pretty constantly, when you have a child with CF or any other illness I'd imagine it's hard to know when to call the Dr. & when to let things go.
I am wondering if certain things are connected or if this is just some normal child stuff that I need not to analyze and connect it all back to CF.
I am blogging about this so I have a reference of what's going on when I take her to the Dr.- because the list is getting long of things to bring up to her...
CF sucks and I can't wait for the corrector drugs! -Did I mention that?
We can't list them all, but this is where were starting... 1.) 11/16/2009- Negative test result for C-diff! After a month of meds we are rid of this bug. Thanks for all the prayers~ 2.) 11/23/2009- Normal Sputum Culture, Yay!
3.) 1/3/2010- Normal results in Fat absorbtion tests.
4.) 1/23/2010-Blockage responded to treatment, didn't need surgery!
5.) 1/24/2010- No Pneumonia -as suspected by Dr's :0)
6.) 3/9/2010-Gained 1.5 lbs in less than a month!
7.) 3/10/2010-Cdiff test negative...yay!!!!
8.) 3/19/2010- We are pregnant!!!
9.) 10/30/2010-Ayla still C-diff free after RX
10.)11/20/2010-GI Symtoms have subsided lately
11.) 11/30/2010-So blessed to have such a happy little girl!