I Nurse

If it's played just right, a Stay At Home Nursing Mother can confidently and humorously answer the age-old polite/uncomfortable question, So what do you do? with complete truthfulness.

Here's how it works (My answers in red.):


So what do you do?

Nurse.

Oh, a  nurse (Pay no attention to that extra article.). What's your specialty?

Newborn to toddler.

Where do you work?

Anyplace I'm needed; I'm always on call.

Like home health?

Yes.

Hospitals as well?

Done it there.

Public?

Yup, there too.

Must be exhausting.

It is (Make sure to smile here.).

You must really love it to be so flexible and dedicated.

I do (Smile bigger.).

Well, it's nice to know there are people like you around.

Thank you for your kind words.


At this point, you could 'fess up and enjoy the shock or walk away while raising a glass of Guinness to yourself (good for breastfeeding, right?), knowing that the almighty grapevine will do its work and get the story correct eventually.

Happy Weekend,
Allison

P.S. I have a new shake recipe that Rees loves, since he's tired of chocolate milk shakes (How can this be my child?).  Tropical Shake ~

Blend 1C canned coconut milk, 1C orange juice, and 1C frozen mixed tropical fruit.  Nice change, and coconut milk is full of wonderfulness.

Baby Bronch

"I'd like to get in there and see what's going on," the doctor stated with a tap of his pen. 

Sounds simple enough, but "there" is Addie's lungs and "getting in" requires general anesthesia, a winding catheter, and a miniature light and camera.  Bronchoscopy.  On my ten-month old little girl.  Chest Xrays and labwork return normal results, but he hears inconsistent breath sounds between her lungs and she coughs a bit.  I gritted my teeth, met his gaze, and calmly answered, "All right."

Of course, it's not all right, but I  have neither the time nor the propensity for a meltdown as I picture her limp, monitored, invaded body.  I've been here before with another (not quite so) small child, and it's got to be done.  My feeding, pulmonary percussions, cleaning, and medicating have not been enough.  Enter our wise pulmonologist who, though gruff, is deeply vested in my children's health and desires information that simpler diagnostic tests will not yield.  So in he'll go.

And I'll set my jaw, march through the doors, and hand my baby over to be "bronched" because I love her and because the doctor wants to peer through this window to her lungs to better care for her.

God help us.
God help him.
God thank you for amazing technology.
God thank you for my sweet, bright girl.
And dear Saint Therese, you with your lung problems down here, know.  Please pray with me for Adah Marie.

6 AM Friday morning, here we come,
Allison

Slacker Catholic Family Advent

Someday, our Advent will be magical and holy and angelic.  For the forseeable future, I'm resigned to a houseful of fun and wild with a long wait for the 25th.  Oh well.

As far as decorations, we never can be spiritual and wait to put up/decorate/light the tree, so we do it as soon as possible, then call the children's agony of waiting a whole month for there to be actual presents under the thing, holy awaiting.


Yes, it's tipped.  And fake.  But it's UP.


 

Our other decorations are cheap and easy and transform the whole house: I waltz about, flinging rectangles of red calico and gingham on every horizontal surface, as well as behind glass.  I also wrap pictures and paintings to look like presents.  I do not sew, so the edges are cut with pinking shears (sorry, Mom) ~

 

This is a print of some chickadees and birch trees in real life.  And a thrift store, lysol-ed throw pillow.

This is an East coast beach painting in real life.

Mary Engelbreit card in real life. Towel, $1 at Target.

Sorry about the potty picture, but not even the bathroom is safe.

Tea cupboard with wrapping paper taped inside the glass because I don't have enough cloth.

 

These old Santa prints are thrift store treasures (See the missing bottom edging on the one on the right?) for a couple of dollars, as are the knick-knacks on the mantle.  I did purchase that wise men hinged nativity new a few weeks ago (Wal-mart.  $17.).

 

 

 

 

 

Our Advent devotions are so lame, I hesitate to write this down, but the hope of  uniting with another slacker friend spurs me on.  I only read this book for morning prayers and do not even have a Jesse tree for the meaningful ornaments.


We do pray the Saint Andrew's prayer five times each morning.  I have a kid type it out, make copies, then cut and glue onto construction paper.  We're fancy like that.

 

I never remember about the shoes or coins, chocolate or real, for Saint Nicholas' feast day on the 6th, but we watch this ~

 

 

 

 

And we eat Mexican food for Juan Diego on the 9th and Our Lady of Guadalupe
 on the 12th, so we're good there.


The Advent wreaths some of the kids made earlier in the month fell apart but one gets lit at church so that lets me off the hook.  It does.


Now, the worst and most wonderful thing we do (depends upon if one is a Howell child or adult) is to attend Mass Christmas morning before opening presents.  Yes we do.  We make them wait.  Barreling down the stairs, all morning-breathed and bathroom-needing-but-refusing-to-go is a sorry display and it's all over in half an hour.  So for the past seven years, now that we're Catholic and there's such a thing as a Holy Day of Obligation, we're all over that.  Stockings they dump out first thing, as they find some sort of breakfast in a foil wrapper and juice box.  Then it's back upstairs for decent dressing and washing up; church; and home again.  The mood is much better and it truly, tangibly puts Jesus first (whether they like it or not). 

Why do we give each other gifts when it's Jesus' birthday?  Because it makes Him happy when we love and give to others.



Happy Birthday, Jesus!

It's almost here!
Love,
Allison

CF Round Up: Prayers, Food, and PFTs

 

1.) The Saint Andrew prayer, during Advent, is very special to me; Rees' health is always one of my specific intentions.  But this year, I grew up a little more and have changed it to a cure for CF (Thank you, CF friends who live inside my computer!).  My other intentions are for Ken's job situation and my patience situation.


2.) Lots of reading on essential oils for managing CF.  Some seem magical.  I'm reminding myself that if something could kill pseudomonas without damaging delicate pulmonary tissue, our doctor would know about it.  But I like the word manage instead of miracle (well no, I love the word miracle...) and managing is how I'm using them: Breathe blend and tea tree oil for Rees; On Guard blend for Addie and everybody else.  Oh, and Whisper blend for me. If anything, we smell wonderful! They can be purchased here.  (Warning: it's very hard to choose!)

3.) Addie's weight for height ratio is less than 50%, so per the doctor's orders, I'm giving her something solid twice a day (Actually, he told me three or four times a day but the sassy little thing is not complying.).  Greek yogurt mixed with banana, sweet potato, or avocado is a hit; oatmeal and ice cream are not.  She still nurses 6-8 times in a 24 hour period and her lungs continue to be clear.



I bought an amber necklace, too.  Don't know if it works, but it's a lovely decoration!

 

 

 



4.) Rees' checkup yielded 20% declined PFT, so he's on ciprofloxacin for 10 days.  If there's no improvement, then a 2 week tune-up at Providence Hospital.  He'd been dancing around being sick for a few weeks (little extra cough, little extra congestion) but felt fine and thought he'd done great on the PFT.  Oh well.  Can't fool around; he begins college classes January 9!

 

 

5.) And, OUR CLINIC HAS BEEN ACCEPTED FOR PARTICIPATION IN THE VERTEX STUDY!  This, my friends, is magical stuff, as it corrects the basic defect in CF (a folded protein that messes up the chloride channel within the cells).  We, like everyone else, hope for the drug and not placebo.  God's will be done.


Time for more Christmas shopping; our lessons have been reduced to mathematics and reading stories . . .

Happy Advent!
Warmly,
Allison

Eighteen

Rees turned eighteen yesterday and although I'm rarely at a loss for words (appropriate or not, unfortunately) I've been staring at a blank page for half an hour during this, my all-alone-quiet-time.   Ken already wrote a perfect, poignant letter and tucked it inside a Man Book, but I've scanned some great old baby pictures that beg to be shared, so blather on I will . . .

This is the best picture so it's first.

He made me a mother. Although too much comparison time on this computer often renders me depressed by my maternal flaws, I love motherhood and I love him very much. I also like him very much. He's a pleasant, funny, honest, hardworking guy who lives his Holy Faith. He likes country music, pizza, backpacking, hunting, Tolkien, and the USMC. He does not like Josh Groban (I'm working on that.), sushi, hybrid cars, Barack Obama, clapping during Mass, and cystic fibrosis.  He can climb Pioneer Peak, field dress large animals, argue politics, play with his little brothers and sisters, and ju-jitsu bad guys to the ground; but he can't sing or cook (Sorry, Future Wife.).

Because of CF care, we let him do things that first-time parents rarely do: eat cake, watch TV, and nap in our big bed, but it didn't ruin him and mellowed us more quickly, which the other kids appreciate. Because he was our firstborn, we were certain he was the brilliantest boy ever and began schoolwork early. But because he grew up to be logical and figured that out, he slowed down his pace near the end (You never did give me that essay on The Abolition of Man, did you?).

So he's eighteen now ~ working, taking classes, driving around with friends, hiking alone, and taking care of himself. I still do his laundry and fix him food and stay up late watching movies with him, as we move into the next life. Along with sweet, teary nostalgia, I look forward to seeing where Our Lord leads him and ask the Blessed Mother to join me in prayer for him.

Two weeks old at a friend's wedding.

Driving to Alaska.

Not quite a year old (at Providence Hospital).

Two years old.

Here are the Man Quotes that Ken put in his letter:

“Let me tell you something you already know. The world ain't all sunshine and rainbows. It's a very mean and nasty place and I don't care how tough you are it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain't about how hard ya hit. It's about how hard you can get hit and keep moving forward. How much you can take and keep moving forward. That's how winning is done! Now if you know what you're worth then go out and get what you're worth. But ya gotta be willing to take the hits, and not pointing fingers saying you ain't where you wanna be because of him, or her, or anybody! Cowards do that and that ain't you! You're better than that! I'm always gonna love you no matter what. No matter what happens. You're my son and you're my blood. You're the best thing in my life…”

-Rocky Balboa

Speaking to his son in Rocky Balboa (2006)

“In any moment of decision, the best thing you can do is the right thing, the next best thing is the wrong thing, and the worst thing you can do is nothing.”

-President Theodore “Teddy/TR” Roosevelt

“Now what should happen when you make a mistake is this: you take your knocks, learn your lessons, and then move on. That’s the healthiest way to deal with a problem.”

-President Ronald Reagan (1987)

“On some positions, cowardice asks the question, is it expedient? And then expedience comes along and asks the question, is it politic? Vanity asks the question, is it popular? Conscience asks the question, is it right?

There comes a time when one must take the position that is neither safe nor politic nor popular, but he must do it because conscience tells him it is right.”

-Dr. Marin Luther King, Jr.

“If running against men has wearied you, how will you race against horses?  And if in the land of peace you fall headlong, what will you do in the thickets of the Jordan?”

-Jeremiah 12:5

“Avoid profane and silly myths. Train yourself for devotion, for while physical training is of limited value, devotion is valuable in every respect, since it holds a promise of life both for the present and for the future. This saying is trustworthy and deserves full acceptance. Let no one have contempt for your youth, but set an example for those who believe, in speech, conduct, love, faith, and purity.”   “…man of God… pursue righteousness, devotion, faith, love, patience, and gentleness. Compete well for the faith. Lay hold of eternal life, to which you were called when you made the noble confession in the presence of many witnesses.”

-1 Timothy 4:7-9, 12; 6:11-12

Last night.

HAPPY BIRTHDAY, REES!

WE LOVE YOU AND ARE PROUD OF YOU!

Breastfeeding a Baby with CF

Do everything this book says.  The end.

I should talk more ~


Ecological breastfeeding is what it's called and here's how it works:

Frequent and unrestricted nursing for nutrition and nurturing, without the use of pacifiers or bottles or cups or pumps.  This requires a mother and baby to be physically close for a good year, which means that it's for full-time homemakers only.  Giving a baby everything he or she needs at your breast keeps up milk production, rest, and health.

Here's why it's especially good for babies with CF:

Good nutrition that is easily digested and strong emotional bonds give medically fragile children comforting support.  Of course, this is true for all kids; my point is simply that when a child has health problems and already operates at a deficit, ecological breastfeeding is a very real way to put an ace in their hand. Our firstborn was diagnosed failure to thrive at 6 weeks, put on formula, then diagnosed with CF at 9 months.  It was too late to fill him up with breastmilk.  Our babies after him were fed on demand as we awaited the genotyping results.  Four became rolly-polly Mama's boys, without CF.

(You get the idea!)
And a chubby little brunette girl, too (Can't find any digital photos...).

Then we got another, littler girl with CF.  Ecological breastfeeding took on new intensity as her symptoms became clear and the diagnosis finalized.  She has not gotten chubby with frequent nursing, but she has held her own and remains healthy.

Desiring both to make sure that she was getting the most amount of good calories and that I was not nursing to fulfil my needs,  I recently compared nutritional information for breastmilk with a few of my favorite first foods for babies (whole milk yogurt, sweet potatoes, bananas).  I promptly shelved the idea and settled down on the couch with my current book and my baby, thoroughly convinced (again) that the perfection of breastmilk is all that's needed!   A bit more googling of babies with cystic fibrosis and breastfeeding yielded disappointing results (Not in the information, but the amount). This wonderful article from the LaLeche League, this encouraging one from a center in UT, and this interview by a popular CF blogger were all I found.  Since they are awesome, maybe that's fine.


I've also enjoyed carrying my babies in a sling, as it keeps them upright to aid reflux and near my heart to aid breathing.  Plus they're fashionable and an adorable accessory!  

 

So it is absolutely possible to successfully nurse your CF baby.  It is at least absolutely worth committing to try a month of frequent, unrestricted everything at the breast (food and pacification) and check weight.  If it doesn't work, then you'll know that you gave it your all and that you can embrace and thank God for life-saving formula.

With affection and support,
Allison


"You drew me forth from the womb and made me safe at my mother's breast."  (Psalm 22:10)

Story

 

I have a story in the latest Chicken Soup for the Soul book called Thanks to CF.

 

That's all.

Excuse me please while I dance a bit!

Love,
Allison