Tuesday, July 28, 2009

Lucy's CF Firsts

A couple of CF blogger's named Casey and Cystic Gal that I have been following lately have recently posted a blog about their CF firsts and I realized that a post about Lucy's CF firsts would be informative for some of my bloggy readers...


Lucy's first breath: January 13th, 2008

Lucy's first GI surgery (meconium ileus): 18 hours old

Lucy's first PICC line: 18 hours old

Lucy's first antibiotic: 1 day old

Lucy's first positive CF diagnosis: 2 weeks old

Lucy's first pulmonolgist Dr. Perez: 2 weeks old

Lucy's first dose of pancreatic enzymes: 2 weeks old

Lucy's first daily vitamin AquaDEKs: 2 weeks old

Lucy's first CF clinic visit: 3 months old

Lucy's first chest percussion therapy or 'thumping': 3 months old

Lucy's first CFF Great Strides walk: 5 months

Lucy's first breathing treatment with Pulmozyme: 9 months old

Lucy's first cough: 1 year old

Lucy's first positive Staph culture: 1 year old

Lucy's first Xopenex treatment in a nebulizer: 1 year old

Lucy's first rectal prolapse: 14 months old

Lucy's first dose of Miralax: 14 months old

Lucy's first time taking pills (enzymes) by herself!!!: 14-15 months old

Lucy's first case of wheezing and alergy related asthma: 15 months old

Lucy's first MDI with spacer for Xopenex and Flovent: 15 months old

Thursday, July 23, 2009

High Calorie Popcicle

Summer in the California Valley can be so oppressive that all you want to do is stay indoors in the air conditioning. Lucy, however, has other plans. She would and could play outside all day if I allowed her to.

With a baby pool, Elmo sprinkler and homemade high-calorie grape Popsicles who would want to go inside?? Below is the recipe I came up with and please note that these cool treats must be eaten nekked and do not eat them indoors!! They will stain clothing and carpet! Happy eating!





~Lucy's Grapesicles~


IN A POURABLE MEASURING CUP:
-one cup instant vanilla pudding (made with half &half instead of milk)

OR
-one cup of vanilla yogurt (use whole milk yogurt NOT low-fat)

ADD

-two tablespoons of grape juice concentrate adding more to taste (DO NOT reconstitute juice. MUST be concentrated!)

ADD SMALL AMOUNTS OF WHOLE MILK TO GRAPE MIXTURE UNTIL YOU GET A SMOOTH, POURABLE CONSISTENCY. POUR INTO YOUR CHILD FAVORITE POPSICLE MOLD* AND FREEZE OVERNIGHT.


*If you are not able to find a Popsicle mold, small paper cups with straws or sticks work well. Simple ice trays with toothpicks work too!

Tuesday, July 21, 2009

Couch Diving...

Just an update...Lucy's culture came back yesterday FINALLY! I hate waiting! There was no Pseudomonas on the culture which is what her doctors and I were hoping! She cultured a 3+ Staph which can be treated with the Augmentin she is on now. We are half way through the antibiotic treatment and Lucy is already feeling better despite the diarrhea that Augmentin causes. Her cold is almost gone and boy-oh-boy am I glad! Her appetite is back and she is a feisty toddler again!

New hobby...Lucy loves to count to three (mostly to two) and then slide off the ottoman onto her new couch. She thinks it is so fun. If I did something like this I would be visiting the chiropractor for a month! Here is a video demonstration and her talking about the light on the camera...


video

Saturday, July 18, 2009

The Bankette!!

While vacationing in Georgia, my mom went out and bought Lucy her very own 'couch' to sit in. It is a girly pink cushioned love seat/fold-out bed with 3 princesses on it: Sleeping Beauty, Cinderella and some other woman who has unbelievably lived happily-ever-after. This fabulous new piece of furniture in our home has become a seat for reading, a bed and a wrestling mat.

On this day, Lucy decided adamantly that she wanted to be wrapped up in her 'bankette.' Let me remind all of you that is was 102 degrees outside but that didn't matter one bit! She yelled 'bankette' bankette' until I rolled her up in a Lucy burrito. She proceeded to lay there for at least ten minutes being soothed by her 'bankette' and paci.


Wednesday, July 15, 2009

Antibiotics...

Lucy and I both caught a 'bug' while in Georgia most likely on the way to Georgia from the re-circulated air on the plane. I got better but Lucy didn't recover as well and has had a horrible cough and wheezing for over a week now.

I took her to her pulmonologist on Tuesday where she had a sputum culture and was given a 14 day supply of Augmentin (amoxicillan) to be taken twice daily. In January, she had acquired a cold that ended up being a Staph infection but went away with antibiotic treatments. I am hoping that this is a recurrence of Staph and not something more serious like Pseudomonas or B. Cepacia, which would require a more serious treatment.

The lab results for the culture take days to come in and can be conducive to a couple of panic attacks for a CF mom in the meantime! The wait can do a number on me but nothing like the number Augmentin does to my Lucy! The side effects of this particular antibiotic is horrible including stomach cramping, yeast infections (diaper rash) and diarrhea. Feeding her yogurt with live cultures can make the effects milder but never have they been nonexistent!

I am hoping to get her through this treatment with little or no weight loss and, if it is even possible, have germ-free lungs.

2nd Half-Birthday!

I never take my days with Lucy for granted and I believe that EVERYDAY should be celebrated even the not-so-good days!

On Monday, July 13, it was Lucy's 2nd half-birthday! That's right! Lucy is now 18 months old. How very cliche but it really does feel like just yesterday that I was knocked up, retaining water in all the wrong places and getting ready to pop her out into this crazy world! Now, just for the pure joy it, we not only celebrate her actual delivery date on January 13th but her half-birthday as well!

Lucy had a huge cupcake smothered with only the thickest frosting we could find, sprinkled with Oreo cookie crumbs and spotted with sugar daisies and an orange plastic dragonfly!

My sweet girl got even sweeter but only after we sang the birthday song and let her blow out the candle!



Georgia In A Nutshell...

YES! I am still compiling all the photos taken in Georgia! There are hundreds! I will be getting photos from everyone that took some (Grandma's and Aunts) and making more posts later. Here are just a few to get started! We had a great time and dearly miss our east coast kin!


Here is Lucy driving Uncle Jeff's boat!

Lucy and her cousin Graycen spent lots of time playing together and reading books!




Lucy checks out the night's meal of catfish!



Fireworks on the 4th!





Blowing bubbles is a soapy passtime!




Hot and sweaty after picking Georgia peaches off the tree!





Rockin' out with her cousin Isaac! Get your autographs now while you can!



Spending time with great-grandparents Jerri and Charlie!




Learning to cast a pole with Uncle Jeff!




The humidity was a killer so popsicles were in order!



SALTY chips is what the CF doctor ordered!


Trying out Aunt Gretchen's doo-rag!

TO BE CONTINUED.....




Sunday, July 12, 2009

Jet Setter...

Here are the first set of photos from our Georgia vacation with many more to come!



We made it home safely but Lucy caught a nasty cold while we were there. I am thinking it was caught from the plane ride, breathing in all other passengers germs through the re-circulated air supply that is pumped through the airplane's cabin. She now has a nasty cough and is cranky, lethargic and has a lost most of her appetite. I will be making a appointment with her pulmonologist on Monday...











Thursday, July 2, 2009

Leaving On A Jet Plane...

Greetings to all my blog readers!

Lucy and I are taking a week vacation and going all the way across the country to Cochran, Georgia to visit family from my dad's side! This is Lucy's first trip on a plane and my first trip on a plane with a child! I may need a glass of wine (or two) by the time this is all said and done! My blood pressure is probably through the roof but I think I'll live. I don't want to be that mom with the screaming child on the red-eye.

I may have computer access while I am there and may mini-blog about our travels but will save all picture blogging for when we return to sunny California.

Talk to ya'll later!

(LOOK AT THAT! Already picking up that southern accent!) :P

Wednesday, July 1, 2009

Butter Makes It Better

Mmmm...Lucy had a grand time eating corn-on-the-cob last night! Lots of butter and salt is just what the CF doctor ordered! It makes her and me happy that she can almost eat anything in sight. Her whole mouth full of baby teeth make it so easy to chomp on crunchy food!

Her current favorite 'crunchies' are bacon, raw apples, minus the peel, and tonight she had raw zucchini dipped in ranch. Crunchy is the 'in' thing now! Her culinary palate is expanding to my excitement!











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