Anna still has a cough. Some days are better than others and today happens to be a good day. The good news is her respiration rate is on her low side, she does not have retractions and her lungs sound clear after therapy. She has a cough, but she is not struggling to breathe. Anna is still getting 3 therapy sessions daily and our goal is to get her down to one session a day. Wende and I are able to tell when it is getting time for a therapy session: her breathing gets noisy.

Our doctor wants us to look into improving the air quality in our home speculating she may have allergies.  I have an allergen highest rating air filter in our furnace blower and have covered the vents with filters as well.  I am looking into buying a couple air-filtration units for the house. Does anyone have any experience with these and can recommend a particular brand or type?

On another note, you may have noticed I have allowed ads on this blog--  please click on them. These ads are helping to fund Anna's medical bills. Thank you.

Also, please enter your email address to the right and when I update the blog it'll show up in your email.

Finding Normal

Thus far we have been sharing with you our struggle as parents with Anna's Cystic Fibrosis and the rollercoaster it has been. Thank you for your continued thoughts and prayers. The primary purpose of this blog is to remind everyone to continue to pray for Anna (and her family) and to keep eveyone updated on how she is doing. As a side note, if you are not accustomed to praying for someone, please check out this article and give it a whirl. If you are not sure how or what to pray for, give me a holler.

Wende and I feel strongly that Anna not be known as the "sick" child. She is a fun and particularly joyful little child. With the five children, our house is "high-energy"  and she is the cause of so much joy and delight in it. As I type this, Anna is sitting up in her bouncy seat talking to her 5 year old brother-- who is delicately listening to Anna's heart with his stethescope. He is reporting to me that her heart sounds good.

Here are some observations from Wende:

-Anna likes to do a full body stretch while I am changing her first diaper after getting

  her out of her bed in the morning. Her legs go straight out as far as they will go.

- Grandma Foht has declared that she has the “Foht smile”- because her upper lip

   disappears when she flashes you her cute little smile.

- We were told by the pediatrician to give her more “tummy time” to strengthen her

   upper body.

- She actually responds to “sshhh” when you are trying to sooth her.

- She attempts to hold her bottle and the nebulizer.

- She displayed some “stranger anxiety” when a friend came over for a visit.

- She had her first conversation on the phone with her dad.

- While on the diaper table she usually puts both feet straight up in the air.

- Everyday she soils one or two outfits that I end up scrubbing in my sink.

- Her eyes follow her mommy everywhere.

Here the Battle Line is Drawn

I never thought we would become germophobes. The daily battle against Anna's cystic fibrosis is in preventing ANY respiratory infection. She is not immunocompromised. Her immune system is completely normal,  however her body's normal response to a cold or flu is the problem. Most kids can clear their lungs of fluid or mucus, eventually recover from the infection and move on. Kids with cystic fibrosis cannot clear their lungs on their own and during a "pulmonary exacerbation" i.e. a flare-up, they essentially begin to get clogged by their own mucus. Because there is always mucus in their lungs, once a certain bacteria (pseudomonas aurigenosa) arrives it never leaves because the evil critters are able to hide in the mucus from antibiotics. The word fibrosis refers to the damage and scarring that occurs in the lungs as a result of the long-term infection and inflammation.

Anna was four months old with her first hospitalization because of a pulmonary exacerbation that started with a cold..    ..this is war.

And here the battle line is drawn. With other small children in the house, the daily struggle against the spread of germs takes has taken on epic proportions. Our two year old does not understand physical boundaries and  evidently thinks Anna is the coolest thing around. He is very affectionate and gentle with his little sister. To our alarm he loves to come up and put his face just microns from her face, and he is very entertained by playing with her hands. Our five year old has a runny nose currently, and has the unconscious habit of wiping his nose with his bare hand. To my horror I have seen him wipe his nose and immediately touch Anna's hand and then have her place her hand in her mouth!

So we are forced to make some lifestyle changes. We have had to cancel some social engagements because others attending were sick. Our CF center has taught us to use hand sanitizer before picking Anna up. We have invested heavily in hand sanitizer and are trying to get the children into the habit of washing their hands immediately when coming in the house from outside and using hand sanitizer before touching her.  It is a little awkward requesting others to do the same.

A month after being out of the hospital, we are still a little freaked out-- obviously.  Forming good habits for our family is ultimatley what needs to happen and then we can move on. We are not holed up in isolation nor avoiding people, but we do need to be more cautious for Anna's sake. We know we will find a balance between being overprotective and putting her at risk. It's just going to take a little time.

Ups and downs

Anna is doing better. Our little hero is off all antibiotics after 3 months of continuous use. We have gotten into a daily rhythm with adding Anna's special needs into the daily routine. She is down to two treatments a day of nebulizer (Albuterol followed by Pulmozyme) and then 20 minutes of chest percussion. We've been doing one session in the morning and once before bed. we were told that if she continues to improve she will back down to one treatment session a day as her daily maintenance program. However, as of yesterday she has started coughing again... so we need to call our team and see what the plan is today. I listened to her lungs this morning and there is some congestion again.

The rallying support we received from our family, friends, co-workers these last several weeks has been overwhelming. Thank you to everyone. The army of people praying for Anna and our family has been amazing and edifying. Please do not stop praying.  Until there is a cure for CF, she will not know life without daily treatment and taking capsules of enzymes every time she eats. Please pray that the new medications in the research and development "pipeline" are safe, effective and on the market soon. Please pray that her symptoms stay under control.