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.

3 month check up

It was a timely appointment because Anna started to cough a bit about five days ago.  Once again my heart sank though I know I should be grateful that we had such a healthy summer. ( I used to love when the weather would turn cooler, now I wonder if I will ever view the coming of fall the same way as I once did.)  We monitored her coughs, gave her an antihistamine, took her breathing rate,and I prayed really hard that it would not turn into a chest cold. The cough has gotten no worse and no better. The doctor said her lungs were clear so now we wait and see what happens...

On another note, I talked to the nutritionist and the CF nurse at length about Anna's poorly balanced diet. Although she has gained sufficient weight on her all carb and dairy diet, she is not learning to eat from the other food groups. This has been worrisome to me for some time but I have been reluctant to push because I just want her to eat something. Well, it is time to play hard ball. It is time to train her to eat what is offered and that is going to mean some hungry days ahead for my beautiful little blondie. Please pray I can follow through with the suggestions given to me.

We await the result of her throat culture....

Anna's Summer

Other than a long bout of stomach flu that kept the family in the house for most of July, we've had a healthful summer. Anna was the last to get the stomach flu and recovered the fastest. I was disappointed that the Lord did not see it fit to spare her the stomach flu but I was grateful for the quick recovery- it only lasted one night for her.  Oh, and there was that cold that followed the stomach flu but Anna had it only mildly and with no antibiotics.

I'm a bit concerned about her sudden love of a certain dirt spot on the side of the house.... one that her brothers frequent. We took out our sandbox last spring and I passed up opportunities to go to the beach- trying to avoid the "CF germs", but there she is frolicking in the dirt and having a grand time of it. What can I do? Wash her hands and worry- I am very good at both of those things.

Other things that Anna is up to:

- Two of her favorite phrases are, "What's dis?" or "What's dat?"- very curious about the world.

- Her top pick is still "Elmo" for keeping her attention during the last part of therapy.

- She loves to go down in the basement and rock out to the oldies while jumping on the
  mini-trampoline.

- She frequently requests "crayons". She got a hold of a marker today and tried it on the
  upholstered chair and received a "talking to" and a time-out, neither of which she enjoyed
  very much.

- She has been described as a "delight" by an unbiased grandparent.

- She has decided to start her "Terrible Twos" a little early by loudly yelling "no" and otherwise
  trying to assert her way.  But mostly she is agreeable and responds to suggestions with a cute
  resounding, "OK!"

- Claims her dinner is over by announcing, "Anna full" and pushing her plate away. Of course,
  she has hardly eaten anything, but nothing I can do or say will get her to eat more.

- If loudness is an indication of lung health, she must be doing ok.

Throat Culture Results

The throat culture did not come back as I had hoped. It showed that Anna had a slightly elevated amount of the same staph that had been detected in her throat culture in January. The nurse explained that the April throat culture either didn't pick it up (apparently throat cultures are not an exact science) or that it is a new crop of staph.  What was surprising though is that the doctor did not recommend putting her on an antibiotic at this time.  He said that since she is not showing any signs of coughing or breathing issues that we could just keep an eye on her and let them know if she developed any symptoms. I appreciate his willingness to see if her body can deal with it on its own and not to medicate her unnecessarily.

On another note, her weight gain was fine, even slightly above her normal curve on the chart. Apparently she can survive on dairy and carbs alone. Although her future good health will depend on things like a balanced diet. (I just learned about a CF recipe web site.) We will keep offering the food and hoping she will eat it...someday.

Update from Anna's Dad

Just a little thank you to everyone for following this blog and keeping Anna in your thoughts and prayers!

Please check out the website and blog of my new practice in Wheaton, IL.

Steve

Check up

Anna had a three month check up with the CF team yesterday. She is doing well and showing "no signs of lung disease" as the doctor put it. We will continue with once a day therapy as a preventative and maintenance.  My biggest concern was her eating habits and whether she was gaining sufficient weight. Despite the fact that she only eats dairy and carbs - she gained the weight to keep her on track. We were told to keep introducing new foods or re-introducing those that she has rejected in the past in hopes she will try them and like them someday....  We will have to wait a week for the results of the throat culture which will indicate whether she has picked up the "CF germs" that I so desperately want to avoid.

Speaking of "CF germs", today we went on a walk around a beautiful pond. No longer content to stay in a stroller, she wanted to throw rocks into the water. I wanted to tell her "no" because I didn't want her to touch the wet soil around the lake. But how can I not let her throw stones when the rest of her siblings are?  I resolved to wash her hands asap, but before I could she threw a fit (as I wanted to continue the walk and she wanted to continue throwing stones) and as she did she stuck both of her hands into her mouth! I was alarmed and angry, and desperate, and crushed, and fearful all at the same time.  She cried the rest of the way around the lake path- and I felt like I wanted to as well.

Yeah!

I finally did it. I picked up the phone and dialed the CF nurse. I wanted to ask if we could take Anna down to one therapy session a day- since I have not noticed her coughing.  I left a message and a couple hours later the nurse called back.  The nurse said, "Great and congratulations." And that was that!  I felt so relieved. I felt like celebrating!

P.S. As I hung up the phone - Anna coughed! But she still seems fine!

Doing well

When I announce to Anna that it is "time for therapy" she replies most days with, "Yeah!" Often that is followed by running to her place on the couch and attempting to scramble up on her own. Then I ask her if she wants books or puzzles, or perhaps we will play with a toy together for the first 20 minutes of her breathing treatment. All other children are on their own during that time and I try to give her all of my attention. She loves to read books. We also do finger plays and songs. When the breathing treatment is over, it is time for the vest therapy- and with that comes a video. (I often wonder if that isn't where the initial "yeah!" comes from when I tell her it is time for therapy-a.k.a "time for a video" in her little mind!) She sits alone sometimes, but more often Luke is right there by her and if they can manage it, the bigger kids watch the "made for toddler" video as well! When the timer goes off on the vest 20 minutes later (now a full 50 minutes of therapy) she again says, "Yeah!" I unhook her from the vest and she glady watches the end of the video.  We repeat this entire process in the afternoon or early evening for a 30 minute therapy session.

She has been doing so well that I have been considering contacting the doctor to see if she can go back down to one therapy session a day. But then as soon as I think I am actually going to contact him, I hear her cough a little.  And then I doubt and pause and don't make the phone call after all...

Update

I didn't call the doctor. I waited. If I call the doctor they are going to throw her on an antibiotic. I struggle every time she coughs even a little bit. Back and forth I weigh what I should do. Am I putting her in the path of harm if I don't call immediately? Am I saving her little body from an unneeded medicine? How do I know?  Will I ever "get good" at this guessing game?

At any rate, she hasn't coughed for two days now. Perhaps this time things will turn out ok.

Anna, the daily life

My wrists keep cracking and popping. The right one aches. I wondered what was going on with my wrists...  Well, I asked my knowledgeable husband what he thought of the state of my wrists. He said that it was because we stopped doing manual therapy on Anna- after 16 months of daily pounding on my daughter, my muscles are essentially atrophying and growing weak. Wow.

Anna was on an antibiotic for a month. I am still not sure that she is completely well. I hear her cough maybe two or three times a day.  Is that enough to call the doctor? Is it just allergies? Clearing her throat? If I call the doctor will they put her on an antibiotic again?

I am always worried about her eating. Is she getting enough calories? How many enzymes do I give with a meal she isn't really eating? What kind of bowel movement was that last one? How do I get her to try new foods? Did I forget to chart that diaper?  Is she chewing on those enzyme beads? The doctor says you can't chew them or you can get sores in your mouth. Why won't she take the water I am offering her to wash them down? She is so picky about eating and sometimes so uninterested that I get the kids to cheer for her whenever she takes a bite.

Today during her morning therapy with "the vest" she actually got shaken right off the couch. I looked over and she was crying, standing on the floor with the vest still shaking her little body. She was not hurt but distressed to have been vibrated right off her seat.

Oi. I just heard her cough in her sleep. That is not good. My heart sinks. Perhaps I will have to call the doctor tomorrow after all...

The Vest

At her last appointment the respiratory therapist came in the room with a tape measure and put it around Anna's chest then announced that she was big enough for "The Vest".  I was shocked. I was told that she would not get a vest until she was two or even three years old.  The therapist handed me a paper that I signed and two days letter The Vest arrived via Fed Ex in a large box that sat by the front door for another three days until a respiratory therapist from the company who makes the vest could come to my house to show me how to use it for Anna's therapy. 

The Vest System: a machine (compressor) attached to a vest which a patient wears during respiratory therapy to aid in clearing unwanted mucus out of the lungs. The vest (which looks like a life jacket) inflates and then proceeds to shake at 10hz (for 20 min.) The goal is for the shaking to cause mucus in the smaller airways to move to the larger airways where it can be more easily coughed up.

Even before her first therapy session with The Vest I had mixed feelings. I felt protective, I felt concerned, I felt anxious, I felt displaced, I felt unsure, I felt defeated- as I faced again the reality of what her life will be like as she lives cystic fibrosis...

Anna took this new step in her therapy better than I did. She let me put on the little pink vest and didn't fuss at all as the therapist adjusted it to her tiny chest. I put on one of her favorite videos and she was distracted as the vest filled up with air and squeezed her, though she looked at me a few times for reassurance. I faked my smiles.  Then it was time to push the button for it to vibrate.  It shook her whole body. Her little cheeks were shaking up and down. Her arms bounced off the sides of her body. I looked down and even her feet were shaking.  She just kept watching the video. Once or twice the hoses popped off and had to be readjusted. It looked to me like her eyes were starting to water but she never cried. She was incredible.

So, now we have The Vest. I feel like it is another member of the family or something. It will be with us forever. Maybe we should name it- Olga? Bertha? Helga? What do you think?

The Culture

Anna's cough is starting to subside. She is not coughing at night anymore and her daytime coughs are less frequent and not as hard on her body.  We are pleased.

I talked to the CF nurse today to find out what her throat culture had shown. She reported that the culture was absolutely clear of anything but the "regular flora."  Awesome. I asked again about the staph she had mentioned. She said it was a minimal amount and it was the type of staph that responds to antibiotics (there are types of staph that are resistant to antibiotics). She said that if that staph was still present it is deeper in the airways than the culture can detect.  It could show up again in the future.

So, all in all, she is on the mend from this particular episode- we hope. The one side-effect of the antibiotic that she is on is that she has terrible diarrhea- and therefore a really bad butt rash. We were advised by a nurse at the pediatrician's office to put a mixture of Desitin, A and D ointment, and Maalox on it.  Anna is being a trooper about it but I feel awful for her.

It's not over

It's not over.

After the doctor declared Anna's lungs clear during the appointment on Tuesday, I still had questions. Was it a virus? Could all of her coughing be from post-nasal drip? Probably, was the answer. Could be, was the other answer. We were told to check in with them on Friday to report how she was doing.

By Friday her nose had dried up somewhat, but her cough had gotten worse, especially at night. So, that is what I reported to the CF nurse. She called me back hours later with another antibiotic prescription- 14 days worth. But if it is a virus, why are we giving her another antibiotic? Well, says the nurse, she should have started getting better by now. Is the throat culture back from the lab? Not yet, was the answer. But, she continued, it might be that the staph that showed up on the January culture may be acting up. What staph? I don't have any recollection of staph being mentioned at all. Neither does Steve.

I am very confused and now also alarmed. What is going on inside my little girl's body? What is lurking in her airways? Are they sure they are looking at the right patient chart? Why didn't we wait to see what the throat culture showed? Wasn't the reason for getting the throat culture to better pick a medicine to fight the specific offender?  Could it be allergies? Why is she still coughing?

After the appointment

It's good news!! The doctor detected no problems in her lungs- they were completely clear! How can this be possible when she has that horrible cough? I am so surprised and so grateful. Once the doctor determined that her lungs were clear it is like he dismissed the cold completely... so should I also dismiss my fears? I will say that I feel so much relief. He said she probably has a virus (why she did not respond to the antibiotic) and it will run its course. We are to keep up the extra therapy treatments to help her keep it loose. Also we got a nasal spray to help with the runny nose. 

Thank you for all who have been concerned and have added Anna to your prayers. We are so appreciative. I wonder if it hasn't been those very prayers that have brought us to the good results that we got today. Please continue to keep her in prayer as she faces the challenges of her CF.

Anna Update

We went through her first round of antibiotics. It did nothing. Her nose is running like a fountain and her cough has become so bad that it shakes her whole little body.  I had so hoped, believed, that this antibiotic would help her... and I am so disappointed. And now I am starting to get scared. I am trying to keep my emotions in check, one day at a time right? I know that because of her cystic fibrosis, that we will probably be facing many instances like this, and that I ought to buckle down, face it, and be brave- but my heart still grieves and my mother-worry is on overload.

We have an appointment this afternoon at the CF clinic. They will listen to her lungs, check her blood-oxygen levels, and do a throat culture. Then they will decide what the next step will be...

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.

Observations from Mommy

-She is very clear about not wanting to read any books about trucks!

- She watches Baby Einstein videos everyday during therapy.

- Every morning she and I stop and wave at the “pretty baby” in the mirror.

- In the beginning of the month she “cruised” the couch for the first time.

- She readily gives out hugs and kisses when asked.

- Her little head and eyes peek out over the edge of the table if she is on her toes.

- She says phrases that sound suspiciously like “Up!”, “Down!” and “All done!”

- As I pushed her in a stroller through the stacks in the library, she pulled random books

  off the shelf and onto the floor.

- She plays the hallway heating register like an instrument each time she goes by.

- I made a whole batch of muffins with her perched on my hip.

- She will walk “one-handed” (holding on to one of my hands) if I insist, but gets

   pretty annoyed with the idea preferring a “two-handed” stroll.

- Grandma Foht showed her how to go up and down the stairs.

- On November 15^th she took her first official step solo.

- She took the PalmCross from my bed and gently kissed it.

- On November 19^th she took a series of four to five steps between her parents.

- She LOVES to drink milk out of sippy cup- the enjoyment is quite evident on her face.

- She initiates peek-a-boo on the diaper table every time she gets changed.

- She blew a kiss to her daddy who was on the phone.

- She learned how to lift the toilet seat and pull the toilet paper off the roll all on the

   same day.

- Every night as I try to clean the kitchen she pulls out all the Tupperware on the floor.

- I started a list for Anna’s new words- she already has five!