Prayers, please.

We have been blessed the past 3 months to have no issues. Last Sunday, Anna suddenly developed chest congestion with a wet and heavy cough. We have upped her therapy and today she started an antibiotic. She is not eating well either. Needless to say we are worried and asking that you please pray she get over this quickly.  .

March 21, 2012

She’s outside and I am going crazy. 

It has been a beautiful and early spring but having Anna outside and playing causes me so much worry.  It is in the dirt and mud and water, I am told, that the evil “pseudos” lurk, waiting for a chance to invade her lungs. How does one avoid these things that will make her sick for the rest of her life?

Every time she falls I want to wash her hands. I want to yank her fingers out of her mouth as she chews on them. I want to strap her in a stroller and never let her out.  I want to slather her in hands sanitizer…..

I want her to be happy. I want her to play. I want to see her curls bounce in the sunlight.  I want her to bounce the ball she loves so much.  I want her to live… for a long time.

Update

I just wanted to pass on that Anna is eating better these last few days. I was so happy the first night that she decided to eat that I almost jumped up and down.  I thought maybe it was just a fluke but she ate better the next meal and the next. I had put into practice some of the suggestions that the nurse and nutritionist had made, plus Anna had also at the same time worked through her constipation. Anyway, I am very grateful to have her eating better (though she still throws a good deal of food!)

Anna

2-16-12

I am beside myself.  Anna has decided that she no longer likes food. It started about two or three weeks ago and has gradually gotten worse. Now at a meal she regularly hits the food off the spoon as it is offered to her. She won’t try anything that is put on the tray. Foods she once liked she won’t open her mouth for. And forget trying anything new.  When I have tried that she will scream in her chair- often through the entire mealtime.

Now, I know this sounds like a typical toddler- and I suppose that it is a common behavior for this age, but I have had four other children and I am sure that none of them took it as far as Anna has. So, she will grow out of it, right? Perhaps. But in the meantime her weight will probably drop and then what will we do? See, people with CF have difficulty absorbing fats and protein and that is why we have to give her pancreatic enzymes with every food containing fat.  And we are encouraged to give her a lot of extra fat and calories- heavy cream, butter, oils etc.  If she is not eating, where is she going to get the calories that she needs to maintain her weight? How many enzymes do you give if she takes three bites an entire meal? If you give her too much enzymes then she will have problems moving her bowels.  And that causes her to be uncomfortable and even have pain.  

I called the nurse today and also talked to the nutritionist on her CF team.  They each had suggestions. I still feel confused… and very worried.

Feb. 3, 2012

The Anniversary

I knew this date was coming up.  I’ve thought about it quite a bit. And yet, as this anniversary of Anna’s hospitalization has arrived, I still feel, I don’t know, like something is lurking under the surface of my day.

It was a whole year ago, but it was one horrible week in the life.  I am very grateful that as this date

has come again, Anna is well and other than being finicky about eating (which is a worry since she
has to keep her weight up), she is a bouncing blond-curly-haired toddler ready to make typical trouble (she had her first lay-on-the-ground tantrum just yesterday).

One scene from our hospital stay has haunted me this entire year. There was a nurse, one of many, who was holding Anna.  She pointed to the top and back of Anna’s little head and said with finality, “Here. Here is where you can kiss this child.” I remember looking at her in confusion and then it sank in. She was telling me that it was not safe to kiss my child…..

Throughout this year I have struggled with that memory- as I snuck a kiss on her forehead, her little cheek, her neck. I have struggled when I was feeding her and she would stretch out her arms to my face and want to touch my nose or put her fingers in my mouth. I have thought, “Am I jeopardizing her health with my affection?”  It has been a process of letting go, but I have come to realize that I cannot NOT show my love and affection to this amazingly precious, beautiful, dynamic, sweet,

and totally loveable child. I will probably never kiss her on the lips, and I will keep my distance if I am not feeling well, but I will and I have planted a kiss on nearly every part of her body! She is mine and I am hers.

Wende

Anna's Crazed Parents

I just got over my first cold in over a year. It lasted 4 days and thankfully Anna didn't seem to get it. If you have been following our blog you  know by now that Wende and I have acquired germophobia. Wende has shared on the blog today how her behaviors have changed as a result of being a parent of a child with CF.

My neuroses has taken a different manifestion. Anything I can do to keep our family from getting a cold or the flu captures my interest. I took a nutritional seminar on lab based nutrition and after learing the proper therapeutic doses have been stuffing vitamins into our kids.

I heard that some friends of ours were milling their own wheat because of the purported health benefits. Supposedly there are important nutritional components in freshly milled wheat that breakdown quickly and are no longer present in store-bought bread or flour. We noticed that a homsechooling family that we are close with (5 kids) never got sick-- and they attributed this to milling their own wheat and making their own bread. It was interesting that the week they were out of grain and didn't have their bread the kids all got sick. This got my attention. I have since met others who swear by milling their own grain.

I was referred to Breadbeckers.com and began reading the articles Sue Becker posted on her website and received her free CD on the topic. Over the course of this past year I read up on the topic whenever I could. If you are interested, this article published by Ecological Agriculture Projects supported by McGill University in Canada outlines the history of refined white flour and goes into detail on the specific nutritional benefits of eating freshly milled grains. Basically, most of the phytonutrients that naturally exist in wheat oxidize and decompose quickly and are completely removed to produce white flour.

So I took the plunge last September, bought a countertop grain mill and some red wheat and began making bread. Wende certainly doesn't have the time to do this. I took it upon myself as the "bread winner" of the family - no pun intended. We still consume white flour but add home made bread or muffins to our diet. The bread tastes awesome and the kids love it. I have a bread machine that I use to make the dough. I usually set it all up before going to bed and put the breadmachine on a timer so when I wake up the bread is ready to go. The kids prefer bread baked in the oven in a traditional bread pan instead of letting in bake in the bread machine. We usually have fresh bread for breakfast every other day.

(I don't want to say this too loudly, but aside from a brief cold in the house just before Christmas  our kids haven't gotten sick yet this season.)

For the Love of Anna...

from Wende:

  

- We disinfect our hands with hand sanitizer every time we get into the van after being in a public place- library, store, playground or friend’s house.  There is a bottle of hand sanitizer in the back seat for the kids and one in the front for the adults.

- Before we settle down in the pew at church I whip out a disinfectant wipe and scrub down the back of the pew in front of us and often the pew behind  us as well.  Try this sometime and be amazed at the amount of gunk that comes off. Yuck.

- Instead of putting Anna in a cart at the store, we opt to bring in the stroller. If we must use a cart, I do have a fabric cart cover that I purchased to set her in.

- We disinfect our hands before handling any of Anna’s food or dishes and I try to never put them on the countertop, but instead place her things on a clean  paper towel.  I sometimes even put a bottle of hand sanitizer on the table at meals, you would be surprised how many times you touch your nose, face, or  other people’s cups during a meal.  I am always attempting to teach table manners to the kids, but one important one now is to use a serving utensil to serve  oneself from common plates- like fruit, cheese, bread and other items that are tempting to pick up with your fingers.

- I chart all of Anna’s symptoms from coughs, to sleeping habits, and mostly bowel movements (to be sure her pancreatic enzymes are working properly).

- We regularly disinfect toys and board books with disinfectant wipes to try to avoid spreading germs in the house. I especially wipe down any books or toys  that I may take into public before putting them out for play in the house.

- After discovering that one of the “CF germs” (germs that like to take up residence in the lungs of people with CF and are resistant to antibiotics) lives in water,  especially stagnant water- I now clean the bathtub with bleach cleaner each time before bathing Anna.  I also do not allow her to play with any type of bath  toy that holds water.

 - Sadly, I have stopped dipping into the holy water font at mass for the same reason.

- Every day after Anna’s respiratory therapy we have to boil her nebulizer and other equipment then leave it to air dry.

-  Anna always gets a fresh clean towel and washcloth for every bath or any time we are going to wash her hands or face.

 - Because the most common “CF germ” is water-borne it can also be found in wet soil (the CF doctor told me that it comes into hospitals on people’s feet).  Therefore, I don’t allow any shoes to come into the house- all must be taken off in the garage before entering.

 - Only Steven or I are allowed to feed Anna or to touch her food or her tray. The kids are not allowed to feed her.

- We have removed the hand towels in the bathroom and now use paper towels for sanitary reasons.

- Then there is the bread… I will let Steve tell you about the bread.

- Every time we have a social engagement- a birthday party, play date, and even Thanksgiving- we call those who may attend and ask if they are feeling healthy,  especially if they have children they are bringing to the event.  We have been told by the CF team that we need to avoid people who are sick if at all possible.  When we are in social situations, those who may want to handle Anna are asked to disinfect. Otherwise, we were told that a three foot distance from others is  considered “safe”.

 

- Because CF also affects the pancreas, Anna must have pancreatic enzymes before she eats or drinks anything to aid in her digestion. If she does not have these  in the correct amount for her weight and for the type of food being consumed, she will not gain weight properly. 

- At the suggestion of the pediatrician, I continue to nurse Anna much longer than any of the other children. The thought was that she may benefit from my immunity especially through the winter season.

- To their great dislike, all of the children have received the flu shot since Anna’s arrival into our home.

- When we go to the pediatrician for check ups, I call the front desk and tell them that I am waiting in the parking lot, asking them to give me a call when they are ready  to see Anna. In that way, we do not have to expose ourselves to sick patients in the waiting area or to surfaces that are not clean.  We do this at the suggestion of the  CF team. When we go to the hospital where the CF clinic is located, we are immediately escorted to a room which was prepared ahead of time- all the surfaces being   wiped down between patients.  The CF team wears gowns and masks, and the doctor wears gloves. 

- Each night I quietly sit on the floor by Anna’s crib and I count the number of breaths she takes in a minute- this is called the respiratory rate.  The number of breaths can indicate whether she is experiencing stress or if there is a sickness coming on.  For me, it gives me something to hold on to… and on most nights, relief.