Ayla had her first "picture day" today, the kids were allowed to wear whatever they wanted-so that was fun!
She looked so cute with her big bow in her hair...I wonder what she will look like when I pick her up! haha
Ayla is absolutely loving school. On Thursday it was "parent lunch day" I came to eat lunch with her and got to see her in action with her little friends.
She was shy with me there at first but after a little while she opened up and introduced me to her friends. I got to talk to her teacher and she said she "talked all the time" and was very outgoing and played great with her friends.
It's always good to hear another's prospective on your kid's behavior. She looked so excited in this picture. She asks me to take a picture of her almost daily before school. It's her way of saying: "I look cute, so you should get this!" haha :0)
The Tues, Wed, Thurs schedule is working great for us, we are still getting used to waking up early and getting everything done in time to get in bed early-but we are getting better.
She is learning a lot already, recognizing more letters and often I will hear her singing little songs like the B-I-B-L-E....She thinks school is really cool!
So yesterday I got a delivery from the UPS man.....he brought one large box containing the above items. This is the Altera System by PARI and the nebulizer (which I will show you below), a dvd from the CFF showing recommended cleaning, ziploc containers (I later found out were part of the cleaning process), and a NUK baby bottle sterilizer. I was overwhelmed when I saw all of this stuff. I immediately thought....."This stuff is serious"
I went outside and saw another package. It was a cooler box (which I am used to seeing b/c that's what all of Ayla's monthly medications come in) I opened it up and saw this:
This is the Cayston medication. This stuff is crazy expensive like $6000.00 per month and I have to say I can tell by the packaging! I really like how they have it labeled for you so on those days where the 10+ treatments are all running together, it's plain as day how many Cayston treatments you have done. Very, Very Cool!
This is the nebulizer that is used with the Altera compressor (I will show you below). It has 5 parts...yes 5! They all have to be cleaned and sterilized as follows after each use:
Rinse each piece under warm water for 10 seconds
Put a small amount of regular dish soap (not white or antibacterial) into ziploc container
Put neb set into with warm water and put lid on and swish around
Put into NUK sterilizer for 8 minutes
This little guy is pretty complicated.....but it is really cool the way it all works together.
This thing is pretty cool. It runs off batteries or can be plugged into an outlet. It makes absolutely no noise (which we love) we are always fighting to hear whatever movie or game Ayla is watching/playing while doing her treatments. The best part is it runs for about 3 minutes and needs to be given 3 times a day. Ayla says it tastes like "berry-blast ring pops" and she says she likes to do it. She is such a little trooper.
This is what it all looks like when your ready to do the treatment (not my pic). My hands are going to be so dry after all the washing I do. I stand at the sink and wash nebs for at least 20 minutes a day. We are hoping this treatment does it's job and keeps the Pseudomonas away for good!
On the way to my Dr. appointment this morning I got the most wonderful news!!
Can you guess what that was????
The nurse said she grew normal flora only!!! I was planning on calling today and when she called me I was like uh-oh!! But it turned out to be the best news ever! With these results we avoided a picc-line, IV med schedules and missing school.
We are still starting Cayston to fully eradicate this bug and make sure we get consecutive clear cultures.....but I am so thankful that this cold is just a cold.
I know we have had a lot of people praying for our family and we so appreciate it! We know that God has taken care of Ayla yet again....we are thankful to him for keeping Ayla in the palm of his hand.
We had our 30 week ultrasound today, it was a great appointment! She was sleeping and was so cute!! Ayla got to see her baby sister again and Dr. E. said she is looking perfectly. She is weighing about 3.2 lbs and I think she looks like a little chunky-monkey! She is head down and it's full of hair (which I also love). Ayla was just so beautiful with all her hair and her sister looks a lot like her! Autumn may outweigh Ayla though :-)
This time is just passing by so quickly, I can't believe I am already 30 weeks! Since I am going to try and not have a c-section we aren't scheduling that for now. Hopefully she decides to come on her own so I don't have to!!
The baby's room is coming along too....grandma is working on the last few items and then I can show you all. It's going to be adorable!!
Thank you for all your thoughts and prayers!
I spoke with the CF center Monday and they wanted me to increase treatments and bring her in today for a check up and throat culture.
We got there for an early appointment and her Dr. came in and stayed in the room with us for about an hour. I have been impressed with the time she puts in with Ayla at each visit.
I called them because Ayla had been coughing at night for the last 3 nights and explained to her that she has had a cough/cold on and off since school started :(
How did I know this would happen......
Her Dr. said it didn't seem like school liked her much.....and that we would need to "wait and see" how sick she got when I mentioned I struggled with the decision to put her into school. And now having seen how much she loves it I will be really upset if I have to take her out.
She listened to her and said she heard a lot of crackles going on in her lungs, and we need to get rid of them. She told me what her plan would be if the throat culture came back showing Psuedomonas or something else....which is going to be IVAnti-biotics. She asked me if I were comfortable doing those at home (which I said yes to..anything to avoid the hospital) but that she would have to come in for a PICC Line (central line). And then be on meds intravenously for 2 weeks. She also wants to start her on a new cycle of meds through her nebulizer to eradicate the infection.
3 weeks of each:
off 2 weeks
off 2 weeks
off 2 weeks
Can I just say that I am so over Psuedomonas! I am so over all these extra treatments, all the time that Ayla spends hooked up to machines. I am so upset at the thought of having her on IV meds and having an IV in all the time for 2 weeks. That means I would have to take her out of school since I am sure they would not allow her to come with a needle in her arm and even if they would I will have to be administering medication and doing treatments during the school day hours anyhow.
This will be the first time Ayla has needed a "tune up" at home or in the hospital. I have always put a lot of stock in the fact that she has always bounced back and never required a hospital stay.
We will have to wait on culture results, I am not sure when I will hear or how long it takes to grow what it will grow. I am hoping I know by the weekend.
I am just praying that this is just a cold and that nothing grows on her culture. If not we will deal with it just like all the other CF families do. Hospitals, medications and treatments are all part of CF and I will have to be okay with the fact that Ayla may not be immune to them all-all the time.
I'm feeling a little negative today, it doesn't help that I didn't sleep last night and Im 7 months pregnant with a child who could also have......No I don't like even saying the words....so I won't....I think maybe I will feel better after I get some sleep but I really don't even want to talk about it..luckily I have this blog so I don't have to.
On a good note Ayla gained a pound and grew an inch & a half since we were there a month ago! That was a nice surprise!
Since having Ayla and learning of her illness I have become a Dr, Nurse and Nutritionist among other traits. I got my education from the school's of "NICU education," "paying attention" and also from "asking around." I have learned a lot from these but my knowledge is always questionable.
When you have a baby something inside of you changes and a certain intuition occurs for your child. I can literally feel it in my bones when something's not right with Ayla. But unfortunately with Cystic Fibrosis some things that would be "small potatoes" to others should be taken seriously and it's hard to know the difference.
Since I am a "stay at home mom" and primary caretaker of Ayla most of those kinds of decisions fall on me. Not that I don't call my husband to get his take on things....but I have that intuition and most of the time the weight falls on me.
At times when a cold flares up or a consistent complaint occurs I get very stressed out. I get worried that maybe I haven't handled this or that the way I should have. What if this turns into that and I could have done something about it? What if I counted on my so-called "intuition" and it fails me?
Ayla has had what most people would say is just the "normal" cold that kids pick up when starting school. It went away and now it's back. How long do you let something go before calling the Dr? We all know that prescriptions are given out quickly with CF to prevent illness taking over in the lungs....when should you wait and when should you allow them. Antibiotics have their own set of disadvantages for our kids.
I just sometimes feel like I would love to just brush a cold or random complaint off my shoulder. I would love to wear only the "mom" hat and not have all the pressures of wearing the others. That is the card I was dealt. When I get down about how CF affects me, I can just remember how much it affects Ayla. I will always be here to put on a different hat each day depending on what she needs. And when she's older I'm sure I'll wear new hats that will come along with new challenges.
I know that I can only do my best.....but it doesn't make it any less stressful when my best may not always be good enough....
A bunch of us went the the Kari Jobe concert last night at Destiny Worship Center in Destin. It was so much fun and she was amazing.
A few of us got together for dinner before the concert at Carrabas. It was a fun night with good friends and family.
I wrote this on Wednesday.....still waiting on someone to take a picture of me when I am dressed cute...which is not that often....maybe tonight!
Today I had the dreaded glucose test. My Dr. does a 3 hour in-office test that requires fasting, I was a little worried since I have been having some hypo-glacemic episodes lately. But I stayed up late pounding protein and I guess it paid off. Paid off in some ways....but NOT on the scale....I gained a whopping 8 pounds since my appointment last month. We will just blame that on the hamburger patty I ate and glass of milk I drank at 11:30 last night. I was determined to not have a spell......
Once I got to the Dr's office I had my fasting sugar taken and it was normal. So I drank the nasty orange drink that tasted like sunkist with no carbonation and waited another hour to be tested again. In the meantime I went back to see the Dr. since I was there for a check up as well. I always get nervous but I prayed extra hard for peace today and felt pretty calm and confident.
She got out the dreaded measuring tape and said I was "normal" and then found the heartbeat right away. She said baby is growing perfectly....and we talked about the contractions I had yesterday evening. Yes, I said contractions.....I was put on meds & bed rest with Ayla and hopefully I won't have that happen again...She said a few every now and again were "normal." I start my 2 week appointments now and at my next one we will do an ultrasound on the 19th! This will really be the point I feel like I will be able to relax about the anatomical development of this baby. So by the 30 week point we will def be able to know if we are in "the clear." And then I can move on to thinking about our final hurdle.....CF testing.
My 2nd and 3rd glucose readings were normal as well, so no gestational diabetes! I filled out information for my hospital stay and it really sank in that this is going to happen....I can't believe I will be mom to 2 girls soon.
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!