Wednesday, December 23, 2009
Lucy is doing incredibly well these days. Her health is good despite a snotty nose that I blame on the dry air in our house in combination with the cold air outside. We placed a humidifier upstairs to help with the moisture while we sleep but our noses don't seem to get any moister! Lucy is currently getting in a second molar, her 2 year molars, which can make for a grumpy toddler that bites her fingers when her mouth hurts.
She seems to be doing well since the switch from the Creon enzyme to the Pancreasacrb enzyme. Because I was sick, I was not able to get her to her dietician weight check-up last week but I am certain that things in the weight gain department are beginning to look up. The symptoms that she was having with her stomach seemed to have lessened. I don't think the bloating and smelly, bulky, greasy stools will ever go away completely but the medication switch and adding probiotics to her diet have seemed to help. She doesn't "go" as often anymore, she is not as bloated and they are not as greasy as they were. She also has not complained of her "tummy hurting" since we did the switch.
Now get this, just because the poop situation has gotten a little better as of late doesn't make me any less excited to get that girl on the toilet! If I never have to change another CF diaper again...
Lucy's appetite has been very good lately, too. She must be going through a growth spurt again because she can eat a lot in one sitting. She has become really good at telling me when she needs a snack and tells me exactly what she wants to eat. I have become a professional sandwich maker... she likes ham and cheese with extra mayo and mustard. I am now a short order cook and will make anything she asks for even if it is at midnight. A CF mama never denies her child food no matter the time.
Here are a couple of cute pictures we took this afternoon when Lucy insisted that she have a picnic on the floor of the living room. She sat on her pink Cinderella couch and ate her lunch, occasionally giving Elmo a bite!
Saturday, December 5, 2009
I really do like the experience and childhood memories of having a real Charlie Brown, unique tree in my living room with all it's imperfections. The experience of going up to the Sierra Nevada's with the whole family and hiking all day with a thermos of cocoa and hot turkey soup to find the most perfect imperfect evergreen we could find, cut it down with our rusty hand saw, drag it to the car and realize that we have no idea if it will fit into the car, shove it in the car oh-so-gently without breaking a single branch, get it home and set it in the garage for at least a week in a bucket of water until we actually have time to get it set up in the living room, finally get it set up, cover it in strings of lights that may or may not light up, rotate the tree so the bare spot is toward the back and place strategically all the ornaments we have. Then it's 3, 2, 1, Oh Tennenbaum!
After all was said and done tonight, the decorating was finished with only one broken glass ornament. Lucy, my mom and I had a wonderful evening trimming our beautiful fake fir. We listened to Christmas music on the radio and Lucy helped trim her very first tree (last year we didn't have one, Bah Humbug) and topped the tree herself with a star. Whether we have a fake fir or a true timber was really beside the point of this evening. We three ladies created a memory together that will last a lifetime.
Wednesday, December 2, 2009
With reminders not to use her teeth, she is able to take all her pills and swallow them whole. I was nervous when we switched her from the Creon enzyme to the Pancreacarb. The Pancreacarb is slightly larger than the Creon pills that we have grown to know and love in the last year and a half but Lucy was able to swallow the new Pancreacarb pills without a problem. I was dreading the day that we might have to go back to opening every single pill into applesauce!
Along with the taking of enzymes, a vitamin and a probiotic you will also see a little Lucy CF cough, a little Lucy sneeze, the ABC song with a mouthful of pancake and a botched version of Twinkle Little Star.
Wednesday, November 25, 2009
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
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.
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
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
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...
Saturday, October 31, 2009
My little ladybug, Lucy had a very enjoyable Halloween despite the fact that she did not partake in a nap all day. I don't know how we made it through this trick-or-treating day without any throw-your-body-on-the-ground-arch-your-back-scream-so-loud-it-pierces-eardrums kind of tantrums. Today I felt like I was in the Matrix movie and I was completely convinced that I was impervious to the tantrum bullet. I dodged, bobbed and weaved my way through our day like Neo and Morphius.
As we left the house I took some video of me telling Lucy what to say when we go out foraging for tricks and treats.
My little ladybug scored me a ton of candy. She gets all the fun of going out to get the goods but way to young to eat any of it! I will be riffling through her bag and finding a few sweet morsels this evening for myself. What a treat!
Friday, October 30, 2009
Dr. Perez says her lungs sound clear and free of wheeze. Her throat/sputum culture didn't grow anything abnormal so the antibiotic she is on, Bactrim, is just fine for ridding of her cough. Only one more week to go on that.
Lucy's digestive issues are still uncontrollable and include bulky, smelly stools that come more than 3 times a day, major bloating of the stomach but never hard or painful to the touch, gas that could clear a room and rectal prolapse despite the Miralax everyday. She often complains about her tummy hurting so we are going to switch her digestive enzyme from Creon 6 to Pancreacarb 4 to see if her food will be better digested with it. We'll start the new enzyme after she is done taking the Bactrim and back to her 'normal' self to see if there is a change in the tummy department.
Our next appointment at the CF clinic is November 16th where we will see the whole CF team for evaluation. I have high hopes for the Pancreacarb!
Thursday, October 29, 2009
This is the first time Lucy has had her toe nails painted. She did so well and didn't move an inch while I brushed on the shiny pink pearl polish. She even helped me blow on her toes to get the paint to dry faster.
After her toe nails dried I took her upstairs for a facial scrub and a warm bubble bath.
I keep trying to tell Lucy that some women pay big bucks for this kind of treatment but she doesn't believe me. What a lucky girl!
Sunday, October 25, 2009
Lucy was such a trooper when the phlebotomist shoved that needle into her vein as I 'bear-hugged' her to keep her from thrashing around. The woman pushed the needle into the elbow pit of Lucy's right arm and then wiggled the needle around inside, shoving it to and fro, as if the needle were a metal detector swiping the scene for lost treasure. Lucy cried out for only a moment and then, inside the tubing, was dark, oxygen-rich toddler blood. I acted so excited to see my child's plasma in that vial. So excited that Lucy stopped crying and began to observe the bloodletting process.
Lucy looked on in awe as we watched together the test tube fill up slowly with her blood. She gave out one more good howl as the woman removed the needle from her vein and then returned to a hesitant happy when she found out that the tape that goes over the gauze was the color purple.
Next Friday, Lucy has a regularly scheduled appointment and check-up with her pulmonologist and should be when I find out the results of her sputum culture from this day and her blood test results. I expect only good news from this visit.
She has been taking Bactrim for over a week (only two more weeks to go) and is doing much better now. Her cough is regressing and she has no ill side effects from Bactrim like she does with Augmentin. And so we keep on truckin' and we can't wait for Halloween!
Tuesday, October 20, 2009
Monday, October 19, 2009
Thursday, October 15, 2009
It all started at around 1 o'clock in the morning while I was at work (bartending) and I got a horrible headache "migraine-style" and started throwing up at work. It had to have been food poisoning or something because I was fine after a few hours.
I woke up in the morning, after a long night of work and vomiting, to call Lucy's pulmonologist to schedule an emergency visit for that day. It all started last week with Lucy having a little sniffle and stuffy nose which I passed off as just some seasonal allergies and the "weather-change blues." After a week of wiping her nose constantly and Lucy's inability to blow her own nose it has moved into her lungs and turned into coughing and wheezing. It has only gotten worse and so I wanted her to get a sputum culture done to make sure it is not a serious 'bug' making itself at home in her lungs.
Back to the doctor call... I gave Dr. Perez's office a ring and I was told that Dr. Perez would be out of the office and unavailable until next week. Lucy's doctor always seems to be out of the office and never available when I need to speak to her or make an appointment. The alternative for emergencies is another pulmonologist in the same practice that also specializes in CF but... instead of the female, 30-something, child-friendly and personable Dr. Perez...this other doctor is grumpy, old and has no bedside manner.
I took the next available appointment with Dr. Grumpy and it just so happens that these doctors have 3 different locations to better serve their patients but yesterday the office location that Dr. Grumpy just happened to be working was the one located the furthest from my house, an hour away in Folsom, Ca (the same Folsom that Johnny Cash had the prison blues about.) I would also like to make mention that Northern California got hit with a massive Fall rain storm yesterday and it rained 3 inches in one day. I am extremely fearful of driving in any kind of weather condition except the sunny kind of condition.
So I set the scene... Me, tense and sweating, driving in a torrential down-pour doing 45 miles per hour on a 4-lane freeway with fearful tears running down my cheeks almost as swiftly as the rain fell from the sky as my precious cargo slept soundly in the back seat. With clammy, white-knuckled hands I managed to deliver the car, Lucy and myself safely to Folsom and found the doctor's office.
We went in for her to be looked over by Dr. Grumpy. His diagnosis is to put her on another 3 weeks of Bactrim (antibiotic), get a throat sputum culture and continue as usual with her other daily treatments. Not what I was hoping for but certainly not the worst thing all day. Now it is a waiting game for the lab to come out with the results of her culture to see what is really going on in her body and what kind of infection we are dealing with. My bet is Staph. Again.
Mr. Grumpy handed me the culture for it to be hand delivered by me to the lab. Having never been to this Folsom office before, I asked him where the nearest lab was and he told me, "Directly across the street. Can't miss it." I proceeded to take Lucy and her swab across the street to the only other building, an office building. I went in and took a gander at the directory in the lobby. No lab. I went out to the car, called the doctor's office to get better directions, was put on hold for a few minutes and then was told that the lab was actually on another corner entirely. Certainly not directly across the street like Dr. Grumpy had stated.
I loaded Lucy back into her car seat and headed a several hundred yards away, over a hill and into a hospital parking lot. There was a lab at the front of the building so I went in. On the window is a sign that reads 'Closed For Lunch 11:30-12:30.'
It was 11:34. If I hadn't been directed to the wrong building by Dr. Grumpy I probably would have made it to the window in time. I sat in the car for a while wondering how I was going to entertain a busy toddler for an hour and ended up going to the only food place I could find in a one mile radius. Quizno's. Not my absolute favorite place to eat but the hot soup, chips and sandwich made Lucy a very happy camper.
I returned to the lab at 12:30 and eagerly handed Lucy's culture swab to the attendant. She looked at me, looked at the lab form and swab and then looked back at me again. She stated, "This paper says Quest Diagnostic. We are LabCorp. You need to go down the hall and turn left." I had the wrong lab the whole time and never had to wait an hour for lunch break at all! Turns out that Quest Diagnostic has someone on staff all the time and didn't close for lunch. At this point, I was singing those Folsom Prison Blues.
With all the worries of the doctor visit behind me and the storm starting to clear up I got onto the freeway and headed home to get Lucy her Bactrim at the pharmacy and both of us a nap. I was nearly home, about 10 miles to go, when I heard a loud noise and felt the steering wheel shudder. I was doing 75 miles per hour trying to pass a slow-poke but it felt like I had ran something over. I pulled slowly and safely into the slow lane of Interstate 5, one of the busiest highways in California. The shudder got worse and within seconds I knew that my back tire had blown out. I pulled over to the side of the road and with diesel trucks and afternoon traffic whizzing by me, I cried. I lay my face in my hands and bawled like a baby while my own baby slept soundly in the back seat.
This day was not going to get any worse for me. At first it was just inconvenience and hassle. Things were not going my way and then it got very dangerous and very frightening. I have had a few blown out tires before but never with a sleeping child in the back seat. I was scared. I called my brother to help with the tire change and called my mother to come get Lucy off the highway and home safe.
Everything worked out in the end. My brother and mother came to my rescue yesterday and I went out and bought a set of 4 new tires.
The best part of this story is Lucy! She never complained once that day. She was such a trooper seeing Dr. Grumpy, getting a cotton swab shoved down her throat, lugged around Folsom in search of a lab and snoozing through the entire shredded rubber incident. Lucy was wheezy, snotty and congested but never cried or whined about it once. I believe I did enough roadside blubbering for the both of us.
Friday, October 9, 2009
This is Lucy getting to know her new device, the device she will use everyday for at least 30 minutes to aid in the clearing of mucus in her lungs. She played in the duffel bag (she calls it a couch) and used the vacuum hoses to "clean" the house!
Lucy had an amazing time picking out her own pumpkin to crave on Halloween but the most fun was in the barn. She just loves animals and can never get enough of them!
Saturday, September 26, 2009
Lucy, once again had another case of rectal prolapse like she had here. Lucy normally takes Miralax everyday to keep her regular and to stop her from straining when she 'goes' but I had taken her off the Miralax while she was taking antibiotics for almost 6 weeks. The antibiotics give her diarrhea so she didn't need help in that department at the time.
I didn't see the need to put her back on the daily Miralax regimen after her course of antibiotics was done because she was not straining to poop. Unfortunaly, this week, I had to manually push her rectum back into her body because it came out while she was pooping. I am greatful that rectal prolapse is not at all painful for Lucy but it hurt my heart having to push her bowels back in knowing that it was preventable.
She is now taking Miralax everyday with juice and will continue to do so.
Monday, September 14, 2009
This whole weekend I was dreading the day when Lucy would catch the bug that I have had. I am recovering just as she has begun sounding stuffed up and her nose is now dripping like a leaky faucet. I will wait a few days to see if she can overcome this cold by herself and try to avoid yet another round of antibiotics. I will also try to avoid the onset of the mommy-guilt I feel when I know I have infected my daughter. Ugh!
The fall weather is slowly creeping into the central valley of California and we took advantage of the beautiful day. I walked 2 miles while Lucy napped on her over sized Nemo and her Sixty-Five Roses blanket.
was able to get her own drinking water...
relaxed on the swinging chairs...
played on the teeter totter airplane...