It's a go!

I can finally let myself believe that we will be going on that vacation! I have prayed and prayed for our health- and then in the last week or so I just gave it to God.

We are leaving tomorrow. Since God has blessed us with the health we needed to go, may he continue to do so as we travel...

Still haven't told the kids. We thought we would let them get a good nights sleep. I, on the other hand, will probably not sleep so good!

January

When last I wrote we were waiting for the results of the throat culture. I had to track down the results as for some reason they did not contact me. The test showed that she has small amounts of the normal bacteria that has shown up in these cultures before. My understanding is that we are all walking around with some amount of "natural flora", we just have to keep extra tabs on Anna's so that they don't increase and that they remain susceptible to antibiotics should the need arise.

In a season of colds and flu we tend to hibernate. We have been blessed to be mostly healthy all through these last months. Any cough Anna had was mild and she kicked on her own without any antibiotics. I pray fervently that we will continue on this track of health, especially because we have planned a family vacation. A "real" vacation that will require us to be gone for a week, fly on a plane, and be healthy.  The underlying fear- that Anna will be sick and we will be unable to go. Of course, my overwhelming concern would be for Anna's health, but having to cancel a vacation when we haven't been on one in over a decade, would be very disappointing.  Therefore, we haven't told the kids that we have a vacation on the horizon.  If we had to cancel, I am afraid that they would blame Anna...

So, I get to keep the secret to myself. Which isn't easy and I think the oldest is on to me. I also get to lay awake at night and wonder how I am going to get all of Anna's medications and medical equipment for her daily therapy through the airport. I hope that the worry is worth it and that we do get on that plane in a few weeks.

Still in Good Health

We have had a cold in the house for almost two weeks. Everyday I wonder if it will be Anna's turn and I also wonder how I will respond if she starts to show symptoms. It seems like so long since she has been ill. I try to tell myself that I will treat the event casually and try not to get worked up over it- after all, it's "just a cold." But I know that I will probably, realistically, be worried, distracted, and sit at the foot of her bed and listen to her breathe at night.

I had an alarming conversation with a friend on the phone today as she told me that the flu has already hit our area. She said there were signs all over the pediatrician's office alerting people and encouraging people to get the flu shot.  We have not gotten our shots yet- because I am reluctant to do so... and Anna has never had one. I am concerned about her reaction to the flu shot, though I know the shot is highly recommended by her CF doctor.  We have gotten the shot for the other kids the past two years, but not for her, as she was too young. I was dragging my feet on this, as the pediatrician told me back in October that the season didn't start until the end of December/ beginning of January. After the phone conversation today, I want to call right away to get an appointment- for I truly think that the flu would put Anna in a hospital.

She has a CF appointment this coming Tuesday. I pray that all goes well.

Anna update

When I don't write, you can assume that Anna is doing well. And she is, praise God. I am almost afraid to publish this for fear I will jinx our good-health run. All around us it seems that people are suffering from severe colds, ear aches, and the croup but we are holding steady in good health. We even seem to have gotten some of Anna's digestive track issues under control.  Yeah!

At her two-year check up with the pediatrician he joked with me saying,"Are you sure she has CF because she doesn't act like it." Her weight and height were in the 80th percentile and her lungs sound great. In fact, she is so big that some of the cute 2T clothes I pulled out don't fit her, especially the dresses, they are too short!

Recently she fussed a bit when we told her it was time for therapy. I was concerned, hoping that the day would not come when doing therapy would become an issue for her. Then I realized that we were asking her to do therapy soon after she had woken up in the morning when she had just begun to play with her siblings. I wouldn't want to stop and sit on the couch either if I were her. We are trying to wake her up earlier so she has more time to play and move around before we ask her to sit for therapy. I have a really hard time waking a sleeping child however. We do therapy early because it is better for the her but also because we have to get it in before school starts- it is just too distracting to the others. 

On the other hand, she is asking for her enzymes, almost reminding me to give them to her, as I usually wait until half way through a meal when I have determined she is actually going to eat something. She is also trying some new foods! She tried guacamole today for the first time. Wow.
She is still a huge fan of Ensure which she calls "la milk" which stands for "vanilla milk". She chugs it and asks for more every time. That stuff is good!

Anna's Birthday

Anna turned two years old yesterday. I found myself overwhelmed with gratitude that she made it through this last year without a major sickness or hospital stay. I prayed for another year of such blessing.  I found myself overwhelmed with love for her, so much so that tears welled up in my eyes throughout the day, as I thought of the joy she has brought to our home... 

She was totally into her birthday which was fun. When I first told her it was her birthday she yelled, "Cake!" Unfortunatly that was at 6am and I felt bad that she had to wait about 12 hours to finally get some. She marveled at her balloons all day, pointing and saying, "Elmo birthday balloon!" She unwrapped her own presents and conducted her "Happy Birthday" song.  The turn out for her party was light, but I figure that will probably be common throughout her years as those that are sick do not attend...

Speaking of which, she overcame her cough that she was experiencing a few weeks ago. It finally went away on its own. Praise God.

Throat culture and update

The nurse was supposed to call me- but I ended up calling her. I remember her once telling me how families will anxiously call looking for the results of the throat cultures. No wonder, we want to know if there is anything in there eating at our childrens' lungs. Anna's culture came back with the same low level staph that she has had before. Again, the nurse said that it did not need to be treated at this time because it is not bothering Anna. Or is it? The nurse said that if Anna were to start coughing then we would get an antibiotic that would take care of the staph (luckily it is a type of staph that responds to antibiotics.) But Anna is coughing, sort of.  Is it the staph?  I talked to the nurse about Anna's coughing which is not getting better but not getting worse either.  She said we should continue to monitor the cough, breathing rate, and Anna's behaviour and if anything changes for the worse then we would address it. So, we continue to hang out.

My Poor Beautiful Anna

Today was a rough day for Anna. My heart went out to her so many times.

She started the day by having a coughing fit at 5:20am that lasted for 20 min. That was the most she has coughed since she started last week- I guess we will end up getting that antibiotic after all. Sigh. I then had to wake her up to get her therapy done before school. I hate waking up a sleeping child but the therapy disrupts the whole school routine. Luckily, she took it in stride.

About an hour after breakfast she started to have pain in her tummy and felt very uncomfortable. She was constipated.  Part of CF is difficulty regulating the excretory system. Anna has had a lot of issues with this and goes from hard, painful stools to overly loose stools sometimes within a single day. A lot has to do with the dosage of her enzymes but also liquid intake and a couple of other factors. Yesterday she didn't go at all and I knew that meant that we were going to have a hard time today. I say "we" because I feel so badly for her that sometimes I cry right along side of her as I hold her little body and she tries to push.  It is so awful. All morning she wanted to be held or she would be playing and then suddenly she would be crying.  As her discomfort increased so did my concern. I finally gave her a suppository and within a minute she was successful.  She cried. I cried.... not just because of her pain, but because I can't help think at these times that it is my fault that she has to deal with such hardship. My fault because I can't regulate her food/medicine etc. and my fault because I gave her CF.  I guess I haven't gotten over the guilt yet.

An hour later we were getting ready to leave the house and she got her finger caught in a door when the wind blew it shut.  You know when they open their mouth to scream and no sound comes out? That kind of pain. I felt so bad, after all she had already been through. It was bleeding around the nail and began to swell immediately. The rest of the day she held her hand up and treated it gingerly.

She got down late for her nap because we were out of the house at the regular time for nap. I had to wake her up a second time in one day so that she wouldn't sleep too late plus I needed to get in her afternoon therapy.  Did I mention that I hate to wake a sleeping child?

Then came dinner. On the advice of the nutritionist, I was told not to give her milk with her meals so that she would fill her belly with real food. Well, dinner was the first meal I was trying this new routine.  It didn't go over so good with Anna. The poor child asked for milk so many times. I offered her water. She begged for her enzymes because I usually follow the enzymes with milk to wash them down. I wouldn't give her the enzymes when she asked.  She cried, she begged, I stayed strong.  It was really hard... but she ate one of the best meals I have seen her eat in a long time!

My poor, beautiful Anna went to bed tonight with the same sweet kisses she always gives, waving to each of the kids as she was carried off to her bed. She weathered a difficult day and showed me what it means to endure.