This weekend was super exhausting for me. Having to work nights until 3 am and then wake up at the crack of dawn everyday for a failed garage sale and a morning clinics. I am pretty caught up on sleep and now have an update for you about clinic yesterday!
Lucy finally got fitted for her new vest!! I am thrilled not only about the fact that I won't have to "thump" on her chest and back any more but because she actually didn't mind wearing it for a few minutes! Here is a link to The Vest website showing what her new vest will look like and how it works. On the video shown on The Vest page, her vest is on the right.
This vest is retailed at $15,000 and I am grateful to say that the Medi-Cal and California Children's Services is paying for the entire cost. In fact, I have not had to pay a dime since I found out I was pregnant with Lucy. Who says government health care doesn't or will not work?
The request for the vest has been put in by her clinic and should be ready for pick-up within 30-60 days! Very exciting!
Lucy's weight gain has been good since the last clinic visit 3 months ago. She weighed in at 24.1 pounds and is 33 inches long. Yes, she still gets measured lying down. Does anyone know at what age they start referring to height instead of length??
Lucy's BMI (height to weight ratio for age) is 29% which they considered to be normal although it wouldn't hurt to add another pound. She is so tall for her age that it makes the ratio seem low. I will continue to give her all the fatty, yummy calories that she needs to stay a healthy weight but not get overly stressed about it. My philosophy through this whole thing is: she will eat when she is hungry. She is smart enough to communicate to me when she is hungry, she is not a picky eater and she would never starve herself!
The other day, I was looking through my own baby book that my mother had put together for me in 1981-82 and I was so close to her size and shape as a child it is uncanny! Lucy and I would have been mirror images of each other! She is a little mini-me right down to the curly locks! I asked the NP and nutritionist when do you start to take in account genetics and not just cystic fibrosis. They say that they do always take into account cystic fibrosis, the age of the child and the frame and build of both parents however it is healthier and easier to fight an infection when you have a little meat on your bones!
Was also told that while fighting infection the body needs more calories...makes it difficult for mommy because while Lucy is fighting an infection and not feeling well then she usually doesn't have an appetite!
We also discussed what to look for in a daycare/preschool provider if I happen to need one for a few hours during the day while I go to back to school. They told me to look for a facility with the smallest number of children, one that is willing and able to do breathing treatments if needed, and best idea was to hire a nanny or someone from the University that is looking for experience in in-home care so she could stay in her home and not be exposed to the cesspool that is daycare.
We have a new prescription of Creon enzymes because the FDA has mandated that the company re-name the drug to take into account the overfilling of the capsules. It has been changed from Creon 5 to Creon 6. There is no difference in the two products except for the name.
Lucy, after finsihing her supply of AquADEKs, will now be taking chewable vitamins. ABDEKs is the name of the chewable. They are specially formulated for CFers just like the AquaDEKs are. The ABDEKs come in bubblegum flavor!!
I was having a discussion last week with some other CF mommies, Nathan's Fight and Cure For Naythan, about how different each CF clinic approaches and tackles sanitation methods for nebulizer cups. I asked the wonderful ladies down at Lucy's clinic yesterday and found out why vinegar is no longer an acceptable for of sanitizing (that I didn't know about.) Pseudomonas, a yucky germ, has recently become resistant to vinegar!! For Lucy's neb cups, I have always stuck them into the dishwasher or hand wash them with antibacterial soap and warm water. I had no idea that vinegar has been made a no-no! Here is a link to the CF Foundation's recommendations on how to properly sanitize your equipment.
The whole weekend was a blur but I do remember that the clinic visit on Monday was a success just as I had suspected it would be! My girl is smart, gaining wieght and getting taller by the minute and we will both be "thump-free" very soon thanks to the vest!
Tuesday, August 11, 2009
Sunday, August 9, 2009
Morning Clinic
Tomorrow is clinic day for Lucy.
Despite her recent rendezvous with Augmentin to clear up some Staph and now a 3 week run of Bactrim and a bad case of viral conjunctivitis, I am fairly confident all things will go well. Her weight gain should NOT be a problem and I know this because I have to carry this weight around with my left arm.
***Insert mental image of my massive bicep here***
At this appointment:
-I will be discussing the fact that we, mostly Lucy, hates getting "thumped."
She, in fact, refuses, screams bloody murder, resists every attempt at doing CPT. All I ask is a mere 5-10 minutes a day right now but it turns into a 30 minute ordeal leading to the heartbreak a mother feels when she must pin down her child to do the "thumping."
WE NEED TO GET FITTED FOR A VEST!
-I will be asking our social worker about the different programs that I might qualify for as a low income, single mom with a CFer. I plan on going back to school to become a registered nurse and get my IBCLC, need to discuss and find some kind of daycare/preschool program that is CF friendly while I higher my education and pursue my career dreams.
I did not plan on strangers (daycare) raising my child and can be quite picky when it comes down to the specifics of these facilities in which she maty have to attend. I have a hunch that it may be difficult to find quality, loving care while fitting her needs as a CFer.
Worse case scenario, it will take billion years to get a degree and my certification because I go to school at night while my mom watches her. However it may happen...it IS going to happen! I DO NOT want to be slinging adult libations my entire life, thankyouverymuch!
Everything will go well at clinic tomorrow, I just know it. I will keep you all updated on how the visit turns out!!
Despite her recent rendezvous with Augmentin to clear up some Staph and now a 3 week run of Bactrim and a bad case of viral conjunctivitis, I am fairly confident all things will go well. Her weight gain should NOT be a problem and I know this because I have to carry this weight around with my left arm.
***Insert mental image of my massive bicep here***
At this appointment:
-I will be discussing the fact that we, mostly Lucy, hates getting "thumped."
She, in fact, refuses, screams bloody murder, resists every attempt at doing CPT. All I ask is a mere 5-10 minutes a day right now but it turns into a 30 minute ordeal leading to the heartbreak a mother feels when she must pin down her child to do the "thumping."
WE NEED TO GET FITTED FOR A VEST!
-I will be asking our social worker about the different programs that I might qualify for as a low income, single mom with a CFer. I plan on going back to school to become a registered nurse and get my IBCLC, need to discuss and find some kind of daycare/preschool program that is CF friendly while I higher my education and pursue my career dreams.
I did not plan on strangers (daycare) raising my child and can be quite picky when it comes down to the specifics of these facilities in which she maty have to attend. I have a hunch that it may be difficult to find quality, loving care while fitting her needs as a CFer.
Worse case scenario, it will take billion years to get a degree and my certification because I go to school at night while my mom watches her. However it may happen...it IS going to happen! I DO NOT want to be slinging adult libations my entire life, thankyouverymuch!
Everything will go well at clinic tomorrow, I just know it. I will keep you all updated on how the visit turns out!!
Wednesday, August 5, 2009
3 More Weeks
Lucy started getting a runny nose on Monday but I didn't really think anything of it. Her allergies can act up sometimes and it's no big deal.
It has actually turned into the worst cold/sickness she has ever had. Fever, inability to breath through her nose, coughing, complaints of itchy ears and eyes, no appetite and sleeplessness. I called her pulmonologist and she is on vacation. I spoke to another CF specialist in the same office and he prescribed her another antibiotic to be taken twice a day for 3 weeks.
Poor Lucy was just taken off antibiotics a week ago and I thought all was healed but it has come back with a vengeance. I told the doc to NOT put her on Augmentin because of the horrible side effects it has on her little body. She is now taking Sulfamethoxazole/Trimethoprim suspension AKA Bactrim.
To top it all off, because she was itchy, she has cross-contaminated her fluids and gave herself pink eye! Her right eye is watery, goopy, itchy and swollen. We are going to the doctor right now to get some drops for that.
I just want Lucy to get better soon so that she (and I) can get a full night sleep and finish off the summer with a bang! The county fair is coming soon and it will be the first time she gets to ride the fair rides! I hate to see my Lucy suffer. Summer colds are the worst.
It has actually turned into the worst cold/sickness she has ever had. Fever, inability to breath through her nose, coughing, complaints of itchy ears and eyes, no appetite and sleeplessness. I called her pulmonologist and she is on vacation. I spoke to another CF specialist in the same office and he prescribed her another antibiotic to be taken twice a day for 3 weeks.
Poor Lucy was just taken off antibiotics a week ago and I thought all was healed but it has come back with a vengeance. I told the doc to NOT put her on Augmentin because of the horrible side effects it has on her little body. She is now taking Sulfamethoxazole/Trimethoprim suspension AKA Bactrim.
To top it all off, because she was itchy, she has cross-contaminated her fluids and gave herself pink eye! Her right eye is watery, goopy, itchy and swollen. We are going to the doctor right now to get some drops for that.
I just want Lucy to get better soon so that she (and I) can get a full night sleep and finish off the summer with a bang! The county fair is coming soon and it will be the first time she gets to ride the fair rides! I hate to see my Lucy suffer. Summer colds are the worst.
Monday, August 3, 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 did not let Lucy eat home made peach cobbler and vanilla ice cream for breakfast. I did not enjoy this breakfast with her. Nope. Not me.
I did not have to put Lucy on a trillion time-outs this week. Lucy did not throw a tantrum in an ultra-busy reception area of an office where I had an appointment. She did not scream at the top of her lungs in front of a dozen strangers. I did not loose my patients nor did I wonder if I were cut out for this motherhood business. Nope. Not me.
I did not give in to Lucy demands to drink my iced tea just to avoid a screaming match. Nope. Not me.
I did not wipe the food off of Lucy's mouth with my dress just to avoid getting it on the couch. Nope. Not me.
I absolutely did not tickle or blow raspberries on Lucy's neck to hear her giggle. Her laughter did not make me feel up-lifted or better about my personal existence in the world. Nope.
Lucy did not go to sleep watching Barney tonight just so I could write this blog before it became a "Not me!" Tuesday. Nope. Not me.
I did not do any of these things mentioned here. Feel free to comment and share with me the things that you did not do this week!
I did not let Lucy eat home made peach cobbler and vanilla ice cream for breakfast. I did not enjoy this breakfast with her. Nope. Not me.
I did not have to put Lucy on a trillion time-outs this week. Lucy did not throw a tantrum in an ultra-busy reception area of an office where I had an appointment. She did not scream at the top of her lungs in front of a dozen strangers. I did not loose my patients nor did I wonder if I were cut out for this motherhood business. Nope. Not me.
I did not give in to Lucy demands to drink my iced tea just to avoid a screaming match. Nope. Not me.
I did not wipe the food off of Lucy's mouth with my dress just to avoid getting it on the couch. Nope. Not me.
I absolutely did not tickle or blow raspberries on Lucy's neck to hear her giggle. Her laughter did not make me feel up-lifted or better about my personal existence in the world. Nope.
Lucy did not go to sleep watching Barney tonight just so I could write this blog before it became a "Not me!" Tuesday. Nope. Not me.
I did not do any of these things mentioned here. Feel free to comment and share with me the things that you did not do this week!
Sunday, August 2, 2009
The "65 Roses" Story
I love this story and thought I would share it with all those who have yet to hear it! Enjoy...
Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after she learned that her three little boys had cystic fibrosis. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary's 4-year-old son, Richard, listened closely to his mother as she made each call.
After several calls, Richard came into the room and told his Mom, "I know what you are working for." Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary asked, "What am I working for, Richard?" He answered, "You are working for 65 Roses." Mary was speechless. He could not see the tears running down his mother's cheeks as she stammered, "Yes Richard, I am working for 65 Roses."
Since 1965, the term "65 Roses" has been used by children of all ages to describe their disease. But, making it easier to say does not make CF any easier to live with. The "65 Roses" story has captured the hearts and emotions of all who have heard it. The rose, appropriately the ancient symbol of love, has become the symbol of the Cystic Fibrosis Foundation.
Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after she learned that her three little boys had cystic fibrosis. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary's 4-year-old son, Richard, listened closely to his mother as she made each call.
After several calls, Richard came into the room and told his Mom, "I know what you are working for." Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary asked, "What am I working for, Richard?" He answered, "You are working for 65 Roses." Mary was speechless. He could not see the tears running down his mother's cheeks as she stammered, "Yes Richard, I am working for 65 Roses."
Since 1965, the term "65 Roses" has been used by children of all ages to describe their disease. But, making it easier to say does not make CF any easier to live with. The "65 Roses" story has captured the hearts and emotions of all who have heard it. The rose, appropriately the ancient symbol of love, has become the symbol of the Cystic Fibrosis Foundation.
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