No sooner did we finish giving thanks did Lucy have a clinic day. There were a few things that I really needed to discuss yesterday with her whole team of medical professionals:
-Lucy has had a steady rattling cough with no other symptoms for about two weeks now.
-She has had stomach pains, increased poop frequency and amount despite being constipated, and decreased appetite for about five or six days (including on Thanksgiving Day. She ate only apple cobbler al a mode once all day). Let me just tell you that being constipated AND having painful, bulky movements is what leads to all of her recurring rectal prolapses. It's not pretty, and only large amounts of Miralax seems to be helping.
-I would like to pretend that I am the responsible parent and get Lucy tested for any pet (dog/cat) allergies before she asks Santa for a kitten because he may or may not oblige her by bringing a furry friend this year!
The clinic visit was an extremely long four hours because she was due for a routine yearly blood draw to check her vitamin levels (I'll get to her amazing bloodletting story in a minute).
This clinic visit was a good one with a few disappointments sprinkled in...
The good news is that her weight is up a bit. She is just under 31 pounds which puts her at the 55% range for her age. She didn't grow in height (38+ inches) in the last 3 months which the clinic dietitian was not too concerned about because she is still in the 50% range for her age group.
The bad news from this visit is that Lucy is being put on a 14 day run of the oral antibiotic Bactrim to clear up her persistent cough. This really upset me for just a bit because I was so proud that she had not been on any oral antibiotics since January! She was given a throat culture during this visit, and the results from that should be in next week to check if her Pseudomonas is back. Lucy has colonized and cultured Staph since she was very young. We think she picked it up while she was in the NICU, and we now only treat the Staph with antibiotics if it becomes symptomatic. I really do think this is just another bout with Staph, but only the culture results with determine that. So with the cough and antibiotics, comes increased Xopenex and vest time everyday. She never seems to mind the extra half hour everyday as long as she gets to watch Caillou or Mickey Mouse Clubhouse on TV!
I will be calling to make an appointment with her pulmonologist this week to talk about getting her allergy tested for pet dander,and then I'll be giving Santa the 'okay' for a kitten. It is so nice that her pediatric pulmonologist is also an allergy and asthma specialist! How convenient for us!
...And this is the part of the blog post where I gush about how wonderfully lucky I am to have such an amazing little girl to call my daughter...
I have never been one to be squeamish about medical procedures, and really, I'm kinda fascinated by them (that's one of the reasons why I'm going to school to be a nurse, I suppose!) I am really go with the flow and matter-of-fact about all medical processes when I talk to Lucy about them, like it's no big deal. I buy children's Body Parts books and use LOTS of dialog to help explain what our body looks like on the inside, and what our parts are supposed to do when functioning correctly.
In short, I have tried to desensitize Lucy at an early age to the 'blood and guts' we have in our body so that when it comes to actually seeing them in real life (not in a book) she is excited to see it!
When I told her that she would be getting her blood taken out of her arm so they can test it for the 'monkey vitamins' that she takes in the morning, she was so excited. After over an hour of waiting in the pediatric lab waiting room, we finally got called in by the phlebotomist. The woman looked at us and Lucy's chart and realized that she was only 2 years old, and called in another technician to help hold her down. Little did they know, Lucy doesn't need any holding, just a clear view of the blood vial!
After a bit of arguing (she wanted to sit all by herself, but couldn't reach the table to set her arm flat), she finally got up onto my lap. I told her to instruct the lady which arm she wanted blood taken from, and she said, "This one" while pointing to her left arm. I explained everything as it was happening while gently holding her right hand. I told Lucy that the lady was tying the tourniquet around her upper arm, and that it will feel really tight. She said, "Okay. mommy." When the needle lady finally felt a vein that was suitable, she asked me if I should hold her a bit tighter. I told her 'no' and that she would be just fine if we only explain everything. No surprises. The other woman, who brought in to be a 'helper,' held Lucy's left arm to keep it steady. I told Lucy that it might hurt for just a second when they stuck the needle in, and then we would be able to see her blood go through the tube!
She never made a peep, mouth open gawking, as she watched the needle go into her arm. The lady adjusted the needle only one time until she found the vein, and then Lucy watched in awe as the blood went through the tube and into the vial. I talked to her the entire time about what color her blood was, how cool it looked, and what they were going to do with it when they were done. The only thing she was worried about was whether or not she was going to get her stickers when it was all over! The two phlebotomists declared that Lucy was the easiest two year old that they had ever taken blood from, and I declared that she was the coolest because she loved looking at her own blood!
Lucy was over the moon when they gave her TWO stickers and a miniature deck of Disney princess playing cards! And with that, we stand in the face of cystic fibrosis, and say, "Bring it! Lucy can handle it!"
Tuesday, November 30, 2010
Wednesday, November 24, 2010
Bacon And Chocolate!
Every chance I get, I try to cram as many calories that I can into Lucy's diet.
Cystic Fibrosis effects the way she digests fats making it nearly impossible to absorb fats and calories without the help of pancreatic enzymes in pill form that she takes by mouth every time she eats food. Even with the enzymes that she so readily takes before every meal and snack, there is still fat that doesn't get absorbed. It ends up in the toilet in less than 24 hours. Getting in as many calories as I can into her diet is important so that her chances of absorbing is increased with every bite and every calorie she intakes. The more the merrier!
It can be incredibly difficult to get a preschooler to eat, so when you find something that they are receptive to, you just need to run with it. I found a food combo that Lucy just devours. It's not a likely combination, but it seems to go together just as easily as peanut butter and jelly. The salty and sweet pair well together.
Bacon and chocolate!!!
About a year ago, I introduced Lucy to Nutella sandwiches. One day I was making her one, and I had some left-over bacon from breakfast that I crumbled inside the chocolate hazelnut sandwich. She gobbled it up as if I hadn't fed her in weeks. Bacon and Nutella sandwiches are now a part of her normal lunch time cuisine. Salty AND high calorie! Just what she needs!
Then, this summer, we had gone to the Sacramento State Fair where they were serving up chocolate covered bacon. Lucy ate so many pieces with a pleasantly puzzled look on her face the entire time!
My friend posted a recipe on her Facebook page the other day that was right up Lucy's alley, and I knew we had to try it! It's a super easy recipe and makes about 9 cookies. They're sweet, they're salty, and they're delicious!
Bacon Chocolate Chip Cookies!
7 strips bacon, cooked really crispy, dried on paper towel
**(SAVE BACON GREASE!!)
1 cup, plus 3 tablespoons all-purpose flour
1/2 teaspoon baking soda
3/4 stick butter softened
1/3 cup white sugar
1/3 cup light brown sugar
1 large egg
1 teaspoon vanilla extract
2/3 cups chocolate chips (I used semi-sweet Chunks!)
optional: chopped nuts
-Preheat oven to 350 degrees.
-Chop up your crispy bacon finely.
-Mix together flour and baking soda
-Cream together butter and sugars in a large bowl. Add egg and vanilla extract, and beat until just blended. Add the dry ingredients; beat until just incorporated. Be careful not to over beat! Stir in the chocolate chips, bacon, and optional nuts.
-Drop a large tablespoon of dough onto an ungreased cookie sheet.
-Bake for 10-12 minutes until golden brown on the edges and lightly soft in the middle.
-Let cool on a rack for only a few seconds and eat HOT! Store any left-overs in a container and refrigerate.
When I make these cookies again, I might be doubling the recipe and maybe adding a few extra pinches of kosher salt to the dough. Lucy just craves the salt, and it would be a great way to get the sodium in!
**The original website suggests saving the bacon grease to drizzle onto the top of fresh popcorn. What another great idea to add calories for my kiddo!
Enjoy the cookies! We did!
Cystic Fibrosis effects the way she digests fats making it nearly impossible to absorb fats and calories without the help of pancreatic enzymes in pill form that she takes by mouth every time she eats food. Even with the enzymes that she so readily takes before every meal and snack, there is still fat that doesn't get absorbed. It ends up in the toilet in less than 24 hours. Getting in as many calories as I can into her diet is important so that her chances of absorbing is increased with every bite and every calorie she intakes. The more the merrier!
It can be incredibly difficult to get a preschooler to eat, so when you find something that they are receptive to, you just need to run with it. I found a food combo that Lucy just devours. It's not a likely combination, but it seems to go together just as easily as peanut butter and jelly. The salty and sweet pair well together.
Bacon and chocolate!!!
About a year ago, I introduced Lucy to Nutella sandwiches. One day I was making her one, and I had some left-over bacon from breakfast that I crumbled inside the chocolate hazelnut sandwich. She gobbled it up as if I hadn't fed her in weeks. Bacon and Nutella sandwiches are now a part of her normal lunch time cuisine. Salty AND high calorie! Just what she needs!
Then, this summer, we had gone to the Sacramento State Fair where they were serving up chocolate covered bacon. Lucy ate so many pieces with a pleasantly puzzled look on her face the entire time!
My friend posted a recipe on her Facebook page the other day that was right up Lucy's alley, and I knew we had to try it! It's a super easy recipe and makes about 9 cookies. They're sweet, they're salty, and they're delicious!
Bacon Chocolate Chip Cookies!
7 strips bacon, cooked really crispy, dried on paper towel
**(SAVE BACON GREASE!!)
1 cup, plus 3 tablespoons all-purpose flour
1/2 teaspoon baking soda
3/4 stick butter softened
1/3 cup white sugar
1/3 cup light brown sugar
1 large egg
1 teaspoon vanilla extract
2/3 cups chocolate chips (I used semi-sweet Chunks!)
optional: chopped nuts
-Preheat oven to 350 degrees.
-Chop up your crispy bacon finely.
-Mix together flour and baking soda
-Cream together butter and sugars in a large bowl. Add egg and vanilla extract, and beat until just blended. Add the dry ingredients; beat until just incorporated. Be careful not to over beat! Stir in the chocolate chips, bacon, and optional nuts.
-Drop a large tablespoon of dough onto an ungreased cookie sheet.
-Bake for 10-12 minutes until golden brown on the edges and lightly soft in the middle.
-Let cool on a rack for only a few seconds and eat HOT! Store any left-overs in a container and refrigerate.
When I make these cookies again, I might be doubling the recipe and maybe adding a few extra pinches of kosher salt to the dough. Lucy just craves the salt, and it would be a great way to get the sodium in!
**The original website suggests saving the bacon grease to drizzle onto the top of fresh popcorn. What another great idea to add calories for my kiddo!
Enjoy the cookies! We did!
Tuesday, November 23, 2010
Even Mommys Make Mistakes
Yesterday was quite eventful and incredibly embarrassing for me, but Lucy had a blast, and was calm, cool, and collected the entire time despite my absent-minded mistake.
We were on our way home from Target, and I had just pulled into our parking space right in front of our apartment complex. I set my Blackberry and my keys on the passenger seat, and got out of the car.
Instead of pushing the automatic lock button up to unlock the all the doors, I pushed it down without realizing it.
I locked Lucy, my keys and my phone inside my car.
I waved at Lucy through the window, told her what a silly mommy I was, and that I was going to use the neighbors phone to call someone to get her out of the car. I called my mom and told her to call AAA for me. It would be free for a greasy tow truck driver to come break in to my car for me.
No big deal.
I'm standing on the passenger side of my car talking to Lucy for no more than 6 minutes. I was trying to get her to unbuckle herself, and get up to unlock the door for me, but the bottom buckle on her carseat is childproof. Her little fingers just couldn't get it, but she had fun in the attempt. She unbuckled the top buckles of the five point harness, and tried as hard as she could to reach over to the door lock. She was about three inches off from reaching it. She was really stuck.
Lucy and I were chatting through the glass when an ambulance, sans lights and sirens, pulled up on the street by my house. The EMT got out of the ambulance and strolled over to my car.
Me: "Um, you're not here for us, are you?"
EMT: "Yes, we got a call from dispatch that there was a child stuck in the car."
Me: "Yes, but not really stuck. More like I just locked her in. This is so embarrassing. You really didn't need to come out here."
EMT: "AAA has to call dispatch if there is a child in the car. We always come out if the sun is shining."
Me: "She's doing great. I was just trying to get her to take her seatbelt off, but it's too hard for her." (Lucy smiles and waves at Mr. EMT)
Yes, the sun was shining yesterday, but it was a cool winter 53 degrees Fahrenheit here in California. Lucy was in no danger of overheating. She was happy and excited that an ambulance was there just for her...to my chagrin.
EMT: "She is doing just fine. I'll just wait in the vehicle until Fire gets here."
Me: "What?! You're kidding, right? Why do we need firefighters? This is so incredibly embarrassing. All I wanted was a tow truck"
The EMT guy went back to his ambulance to wait, and 1 minute later a fire engine came pulling up. To add insult to injury, one of the three firefighters was a friend of mine, who knows Lucy pretty well. She was so excited to see her friend, and was smiling and talking to everyone though the car window.
The firefighters quickly broke into my vehicle without breaking any windows, and set Lucy free. They actually timed themselves, trying to beat one of their previous break-in records. They managed to get Lucy out in about two and a half minutes. She had a smile ear to ear.
Her firefighter friend, Josh, scooped her up and took her over to the engine for a quick look around the rig, and gave her an entire stack of Junior Firefighter sticker badges.
She didn't stop talking about it all day, how "Mommy got her stucked in the car and she was rescued by a firetruck."
Now, if you all don't mind, I'll take that Mother Of The Year award. *Taking a bow*
Sorry about the quality of this photo. It was taken by my just-rescued Blackberry!
We were on our way home from Target, and I had just pulled into our parking space right in front of our apartment complex. I set my Blackberry and my keys on the passenger seat, and got out of the car.
Instead of pushing the automatic lock button up to unlock the all the doors, I pushed it down without realizing it.
I locked Lucy, my keys and my phone inside my car.
I waved at Lucy through the window, told her what a silly mommy I was, and that I was going to use the neighbors phone to call someone to get her out of the car. I called my mom and told her to call AAA for me. It would be free for a greasy tow truck driver to come break in to my car for me.
No big deal.
I'm standing on the passenger side of my car talking to Lucy for no more than 6 minutes. I was trying to get her to unbuckle herself, and get up to unlock the door for me, but the bottom buckle on her carseat is childproof. Her little fingers just couldn't get it, but she had fun in the attempt. She unbuckled the top buckles of the five point harness, and tried as hard as she could to reach over to the door lock. She was about three inches off from reaching it. She was really stuck.
Lucy and I were chatting through the glass when an ambulance, sans lights and sirens, pulled up on the street by my house. The EMT got out of the ambulance and strolled over to my car.
Me: "Um, you're not here for us, are you?"
EMT: "Yes, we got a call from dispatch that there was a child stuck in the car."
Me: "Yes, but not really stuck. More like I just locked her in. This is so embarrassing. You really didn't need to come out here."
EMT: "AAA has to call dispatch if there is a child in the car. We always come out if the sun is shining."
Me: "She's doing great. I was just trying to get her to take her seatbelt off, but it's too hard for her." (Lucy smiles and waves at Mr. EMT)
Yes, the sun was shining yesterday, but it was a cool winter 53 degrees Fahrenheit here in California. Lucy was in no danger of overheating. She was happy and excited that an ambulance was there just for her...to my chagrin.
EMT: "She is doing just fine. I'll just wait in the vehicle until Fire gets here."
Me: "What?! You're kidding, right? Why do we need firefighters? This is so incredibly embarrassing. All I wanted was a tow truck"
The EMT guy went back to his ambulance to wait, and 1 minute later a fire engine came pulling up. To add insult to injury, one of the three firefighters was a friend of mine, who knows Lucy pretty well. She was so excited to see her friend, and was smiling and talking to everyone though the car window.
The firefighters quickly broke into my vehicle without breaking any windows, and set Lucy free. They actually timed themselves, trying to beat one of their previous break-in records. They managed to get Lucy out in about two and a half minutes. She had a smile ear to ear.
Her firefighter friend, Josh, scooped her up and took her over to the engine for a quick look around the rig, and gave her an entire stack of Junior Firefighter sticker badges.
She didn't stop talking about it all day, how "Mommy got her stucked in the car and she was rescued by a firetruck."
Now, if you all don't mind, I'll take that Mother Of The Year award. *Taking a bow*
Sorry about the quality of this photo. It was taken by my just-rescued Blackberry!Wednesday, November 10, 2010
Tuesday, November 9, 2010
Disney On Ice
My mom took Lucy to Disney On Ice. I was really bummed out that I had to miss all the fun Disney skating action, but I had to work that night.
Lucy went dressed as Cinderella complete with sparkly silver shoes.
My mom said she sang the Mickey Mouse Club House theme song the whole way there in the car.
She was more than happy to pose in front of the icy stage.
Lucy went dressed as Cinderella complete with sparkly silver shoes.
My mom said she sang the Mickey Mouse Club House theme song the whole way there in the car.
She was more than happy to pose in front of the icy stage.
When all the characters began entering the stage she waved and said 'Hello' to all of them, calling them out by name.
Lucy was completely enamored by all the characters.
She was very concerned when the evil Ursula, The Sea Witch, came out on stage.
OH, NO!!!!!!
OH, NO!!!!!!
Such a special night for both my mom and Lucy!
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