Wednesday, November 25, 2009


There are so many reasons to be grateful and chock-full of thanks this season year.

Little reasons that I used to take for granted like fresh air in my lungs and BIG reasons like Lucy's health. Her lungs are healthy and able to take in the fresh air. Her new pancreatic enzymes (Pancreacarb) in combination with a twice daily pro-biotic has made her digestive symptoms get a little better. The big sign that the new medications are working will be weight gain. I am thankful for Lucy's health, her entire CF team, CF medications and my family that help out when times get tough.

There are times when I may lose my cool when Lucy throws dramatic tantrums on the floor but I am so thankful for every moment we get to spend together. I know that one day she will be so independent that she may not need me as much. I smother her with love, kisses and affection while as much as I can because the years of independence and rebellion are coming sooner than I want them to. During a tickle-fest the other day, she shoved her hand in my face and shouted, "Get away to me, Mama!" I am thankful for every hug, kiss and cuddle that she allows me to steal from her.

I am thankful for my mother who has taken Lucy and I in when we needed help the most. Not only have Lucy and I been living with my mom for an entire year, she helps out with Lucy's breathing treatments and care giving. She watches Lucy at night while I am working. She does so many things for my daughter and I that there is nothing I could possibly do to thank her enough. I am very thankful for my mother and everything she does for me.

There is nothing more important to me than Lucy and my family. I am so grateful everyday that I have them in my life because believe it or not it really does take a village!

Thank you! I love you!

Monday, November 23, 2009

"Not Me" Monday

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

I completely understand and know that toddlers will say and do the darndest things and they will do these things repeatedly. They will repeatedly test your will to follow through with the rules of the house. Children will repeatedly push your buttons in ways that they have never been pushed before. They test a parents patience and push the bindings of love to the limit. Being Lucy's mom, I have said and done things that I never thought I would say or do before. I would have told you, "NOT in a millions years would I ever say that!"

It was not me who yelled, "NO! Don't shove your Elmo DVD into the tape slot! It doesn't go in that one. You'll break it!"

It was not me who instructed Lucy not stick her fingers in her poop.

It was not me who seriously thought about getting out the duct tape to securely fasten Lucy's diaper to her body. The girl wants to get naked constantly!

It was not me who cheered loudly and got misty-eyed when Lucy went poop on the big girl toilet.

It was not me who let my little nursling Lucy know that putting her hand down my shirt while out shopping is not okay. "We have to wait until we get home to have milk." Never thought I'd say that!

It was not me who got excited about buying the book "If You Give A Pig A Party" and it certainly was not me who read it to Lucy seven times in a row before bed that night.

It was not me who described Lucy's cystic fibrosis poop as "sticky and pasty like peanut butter and a little greasy" over the phone to Lucy's daddy.

It was not me who wished today that cystic fibrosis would just take a long walk off a short pier or at least go on a vacation. I was not me who wanted to take a break from breathing treatments, enzymes and other daily medications. It is not me who needs a break. It is Lucy.

I say and do these crazy motherly things I NEVER thought I would do. I do them all for Lucy. We manage to get through these days still loving each other even more than the day before. We live life as mother and toddler and we test each other's patience along the way. Life is pretty good and I'm learning every step of the way.

Wet Paint

Lucy has a weekly play date with a special friend named Connor Jack. Lucy is 8 days Connor's senior which makes playtime so much fun because they are the same age. When the sun is shining, we go to the park but with the weather becoming more and more winter-like we have spent some late mornings and afternoons at each others houses. It is very refreshing to get together with another mommy to talk mommy-talk, have snacks and drink coffee while the kids play. It has been a joy to get to know this very kind and caring family over that last few months and I can imagine that the friendships being created will be ones to last for years.

On this particular play day, Connor and his wonderful mommy Casey (Yes, we have the same name!) came over to our house to make hand-print turkeys for Thanksgiving and have the kids paint beautiful portraits for us that I would never sell for less than one million dollars. These two kids are sure to put Monet and Van Gogh to shame but the paint didn't stay on the paper for too long. Other things got a thick coating of paint that morning.

Monday, November 16, 2009

"Not Me" Monday

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

If you have had ever had an opportunity to meet with Lucy you will know that she is a vivacious little girl with quite the vocabulary for a 22 month old. A regular chatty Kathy she is, for sure, and I am becoming more and more flabbergasted by what comes out of her mouth these days. I would like to take the time to tell you that it was not me who taught her to say these things. It was not me who may have uttered these words within earshot of a listening child. It was not my child that used her new-found vocabulary words in public or at home.

Today Lucy and I were getting ready for our day, hanging out in the bathroom, brushing teeth, doing hair. The usual morning afternoon routine. Now, please make note of the fact that it is not me who allows the dirty laundry to pile up in the corner of the bathroom for over a week. No way. I am a tidy mother who is strictly on top of things so it was absolutely not my daughter who found my "soiled" bra and held it up to her chest. It was not my baby who declared, "I NEED BOOBIES!"

With a giggle I did not retort with, "There will be enough time for all that. For now, all you get are two nipples."

I would like to assure you that Lucy would never shout "BOOBIE" in public. Walking through a department store lingerie section she would never in a million years loudly exclaim, "Pretty boobies, mommy. Pretty boobies!" Lucy would never repeat this phrase six or seven times and never would I have to explain convince her that these 'pretty boobies' produced no milk for her.

If I was that mom and if it that was my "boobie" child I would be extremely proud of her in the fact that she knows all her body parts including some of the important internal ones such as the lungs, heart, stomach and brain. If it were me, I would be happy in knowing that she has the vocabulary to communicate effectively with me, enough to let me know that she needs boobies. Someday.

Thursday, November 12, 2009

She Ain't Heavy, She's My Daughter

Lucy's visit to clinic on Monday, at which I accidentally showed up a week early because I failed to double-check my date book , was a fairly good one. Lucy was on her sweetest and best behavior for our two and a half hour appointment. It is my job to bring and provide nearly three hours of toddler entertainment while four different women, a nurse practitioner, a pediatric registered dietician, a clinical social worker and a respiratory therapist come in the room to assess Lucy and discuss with me her health issues of the last 3 months.

Here's an update:

~Lucy is 22 months old and weighed in at 24.7 pounds (38 percentile) and a height of 34 inches (71 percentile). The combined height and weight for BMI (body mass index) is only 17 percent. NOT good! She is tall and skinny and could use a pound or two. With all the holiday season food and goodies and a few medication changes I am certain we can get a few more pounds on her.

~Because Lucy is not gaining weight as well as she should considering the amount of calories I give her on a daily basis we have all decided that changing her pancreatic enzyme from Creon 5 to
Pancreacarb 4 would be appropriate. I am hoping this change in enzymes will help her absorb fats (a recommended 1600 calories a day) a little better and rid of some of the GI issues she has including bloating, gas, abdominal pain and bulky, greasy poop sometimes up to 6 times a day and 3 occurrences of rectal prolapse.

~Her blood work came back finally and they showed that her vitamin levels (A, D, E and K) are all normal which means that she is not malnourished. She is absorbing nutrients well enough but not breaking down fats. Fats are moving through her body to quickly. We will be starting her on a twice daily supplement of probiotic to maintain a healthy bacteria balance in her intestines. These are similar cultures that are in yogurt but in higher quantities.

~Throat/sputum culture came back with nothing on it! Yippee! Clean as a whistle!

~I took her new vest to our clinic visit so the respiratory therapist could re-program the settings to better loosen the mucus in her lungs. We now have it set for a running time of 20 minutes in five minute increments. The first 5 minutes is at 8hz. The second and third is at 9hz and the last 5 minutes is at 10hz. We have had many issues the past few days with this new program! Lucy screams at the top of her lungs tantrum-style, fights and struggles with me to turn off the machine. She says it hurts her and I think it does. Her chest is rubbed red-raw after each session. In the beginning we were doing the entire 20-30 minute session at 8hz and never had a problem sitting still. I'm wondering how much more mucus she is actually "getting up" by having it on a higher shake setting. Is the pain and struggle really worth it? Should we go back to the original 8hz? Only time will tell.

~I was also told that there is not a "necessary" need for her to get the H1N1 vaccine which I was against giving to her anyway. Lucy's last week of her 1-day preschool is next week. She does not rub elbows with the public on a daily basis and the chances of her getting the "pig flu" is slim. Her O2 saturation has never been below 98 and her lungs are very healthy. Both the clinic and I have decided it is okay that she not get the vaccine.

Lucy has so much fun at her clinic visit. The ladies there are great and really make her feel at home. We have known these people for almost 2 years now and they have watched Lucy grow up and thrive. We really do have the best clinic a CF mommy and CF kid could ask for!

Here's Lucy coloring at her visit in between each individual assessment...

Lucy gets to wear her nurse practitioner's beautiful purple scarf while she has a snack of a chocolate sandwich...

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