From Anna's Mom

Anna is on antibiotics again

I guess I knew it would end. We had such a good run without sickness. Life

felt almost “normal” and one could forget, on some days anyway, that Anna

has CF.  It was August that Anna last had antibiotics.  There was one cold in

there, but it stayed in her upper respiratory area and she got through it herself. 

Though I try to be realistic about how sickness will come into our lives, I still

felt great disappointment when I saw that runny nose and heard that first cough.

Somehow I hoped we could avoid germs if we used enough disinfectant

on our hands and prayed hard enough.  And, I can’t help to feel that somehow

I didn’t protect her enough….   As I write this, she is licking the sliding glass door!

What can a person do?

 

Somewhere out there is a balance that I need to find. The balance between still living

your life and being smart about staying healthy.  I had a horrible dilemma in November

trying to decide whether to let the kids go on a field trip with their friends to Lego Land

( a Lego themed children’s museum).  I want them to have great experiences but sending

them to a “germ park” was a scary thought. What if they brought home a cold? the flu?

I would feel responsible because I made the decision that they could go. After great

mulling and worrying we decided on a compromise- Steve took off of work and took

the three older kids to Lego Land while I stayed home with the two younger. I told Steve that he had to disinfect their hands every 10 minutes and watch them for sticking their fingers in their mouths (unfortunately, all three older kids have oral fixations).  As it turned out they didn’t get colds. But I think that the present one that Anna has came from a trip to a museum last week….   So, where is the balance? Perhaps it will take a few years, or more, if ever, to figure it out.

Wende

Entering cold and flu Season again.. a new blog

Thank you for keeping up with my blog and keeping Anna in your prayers and thoughts. It is evidently working because this little girl of our continues to thrive.

I set up a new blog dedicated to the more technical side of parenting a child with CF -- particularly the health and wellness side of things. We have learned a lot this last year and I thought this would be a good way to share some of the good information Wende and I have come across.  

Anna is doing really well --  she is down to one therapy session a day! Her lungs have been clear, her respiration rate has been good and she continues to thrive. She has a healthy glow about her and I am perpetually amazed by her curly hair. I find myself marvelling at Anna and her radiant personality, contemplating the divine interplay of this gift of CF into our lives. I often wonder how this cross will form her as a grown woman.

Cutting out the evening therapy has been a big deal for us, since that treatment session would typically coincide with Pajama Time for the other four kids.. oi vay...

Thanks again for all the prayers and support.

Today Anna turns 10 months old. Her favorite thing to do is stand up on her own two (incredibly tiny)feet and doing the wobble-walk across the floor while Mommy holds her by the hands. She has a look of total satisfaction on her face like the cat who ate the mouse.  She had her first walk in the park yesterday!

Her least favorite thing to do is therapy, which she is back to doing four times a day now. Simon, Jesse and Luke all have colds--  and now so does Anna. She  swats at her mask incessantly and wiggles, kicks and screams during therapy time. Sometimes we have to restrain her which is slightly traumatic and unpleasant for all.  Needless to say we are worried once again--- still haunted by her last cold which ended up having her hospitalized for a week-- 6 months ago today as a matter of fact. Sorry to be a downer here.  The purpose of this blog is not to make you worried but to pray for Anna.

Anna is 9 months old!

It is hard to believe, but Anna is 9 months old already. She really likes being outside and can sit up and play by herself for long periods. She has two therapy sessions a day and we strive to get as many calories in her as possible. She is still nursing, supplemented with formula and extra salt. She is eating solid foods augemented with extra fat (usually vegetable oil or butter) and takes CF specific vitamins and an ever-increasing amount of digestive enzymes. Anna is doing her job-- she is thriving. Her visit with our CF team a couple weeks ago went well and they are pleased with her progress. Thank you for the prayers and support. Please keep it going.

Anna with her (almost) 3 year old brother Luke who likes to keep her company and, yes, he really DOES need the life vest when sitting in 4 inches of water.

At the Fourth of July Parade with Mommy

Just a little update here. Anna is doing well. We still do two therapy sessions a day: albuterol and pulmozyme by nebulizer followed by chest percussion. Each treatment session takes around 50 minutes. She still has a cough with feedings but our CF team is thinking it is not related to the Cystic Fibrosis-- perhaps a little reflux. She is gaining weight and is thriving. Other than expressing some irritability cutting her first tooth, she is showing an amazingly cheerful and easy-going disposition. Thank you for your prayers and please continue to pray. 

More of the same

Last Thursday we took the kids to the Naperville Children's Museum, otherwise known as the Naperville Germ Park and are paying the consequences.  Our two year old's nose is a virtual faucet at the moment -- he had a fever a few days ago too. The seven year old has a fever and a cold and the five year old is hacking and sniffling constantly. He has perfected the art of wiping his nose with his bare palm. We have run out of kleenex in the house. Anna has gotten the bug too, unfortunately, and coughing more frequently. She had a fever a few days ago but was gnawing on her gums like crazy we chalked it up to "teething." It is disturbing to have so many sick people in the house at the moment. Anna has a doctor's appointment tomorrow and we'll see what they have to say.