Hi! I'm Sarah, of Casa de Perfect.
My hubby, Archie and I are the parents of 3 great kids.
Brandon (11) is neurotypical and in 5th grade.
Riley (4) is mildly autistic and has RSS. She's in special needs preschool.
Angel (3) has CF, severe truncal hypotonia, dysphagia, tibial torsion, sensory disoroder, and anger issues.
Every day we redefine ourselves, our lives, and our definition of perfect. We hope we can redefine yours, too.
Here's to living life beyond our labels...and to redefining perfect for everyone.
You know ladies and gents…I’ve thought about it…but I just cannot be silent for a full day most of the time. If I HAD to be silent on a day I know it jsut wouldn’t happen *giggle* So I doubt I will ever be participating in Wordless Wednesday.
But I DID get a fun picture for this weeks upcoming Picture Hunt. So I may start doing that in time for the new year. I keep meaning to better my picture taking (I’m hoping for a fancy schmancy digital next year, our current one sucks monkey butt)…so that gives me an excuse and a challenge
CF Clinic was today. K was a total witch again. Throwing herself down on the floor (which, by the way, is 3 feet of concrete with a pretty layer of tile on it…how can that NOT hurt??)…throwing a huge fit pretty much 98% of the time we were there. Dr. was a doll…I just adore her…she called me insane for backing 5 different types of cookies (I didn’t tell her I was planning on making a second round of 4 of those types).
Umm…oh yes. Car worked like a dream. Like there was absolutely nothing wrong with it ever. We’re thinking the fuel got frozen in the line or something…I hadn’t run it in about 36 hours….and it gets COLD at night here!!
* A sputum culture is a test used to determine what bacteria or fungi are infecting a persons lungs and/or breathing passages.
The test is run using a swab at the back of the throat to collect the Sputum**. The culture is then tested for growth. If not growth is present, the culture is considered negative. If there is growth, the test is positive and is then checked under a microscope to determine the type of bacteria.
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**Extra definition: Sputum. The thick fluid fluid produced by the lungs and the airway leading to the lungs.
Whenever my blog starts working again, here’s my update!!
Bad news – definite crackling in one of the lungs. Wheezing on both sides.
Good news – Not severe enough for admittance yet. Because of good history over the summer of good throat cultures and lung function, he’s going to trust the antibiotic for now.
How we proceed – Continue on as we have been. If there is ANY change in how well she breathes, she’s going to be admitted. Translation: If she wheezes harder, or has labored breathing (seeing ribs when she breathes) we’re to call immediately and get her in. For now we trust the meds…and cross our fingers!!
Right now while K is sick, this is my life. 3 times a day, 30 minutes a piece – plus 5-10 minutes on the nebulizer (I do not have that on video because I have to pin her down on my lap to do it properly) twice a day.
If you listen closely, you can hear her letting her voice vibrate with it (I know it’s tough over the sound of the machine).
And for an update on her being sick. The pulmonologist put her on antibiotics as a ‘precautionary’ measure. We started them this morning, but we started them too late – she spiked a fever tonight. She’s miserable…red nosed, red-eyes that are tearing, sneezing, coughing, and vomiting…it’s breaking my heart. Her first real illness since the diagnosis, and every cough just makes me tear up.
Well, once again, I have to avoid my baby girl as much as possible. I have a TERRIBLE cold. Actually, Molly had it first. When she got up yesterday K had a TINY bit of one…and by last night I had a full blown painful cold. My throat is on fire, my head feels like it’s in jell-o…
K was supposed to have an appointment with the pulmonologist today…but me going into a CF clinic with a full blown cold, and Molly just getting over hers…NOT a good idea. When I said it to the nurse, she agreed but then instantly got on the “Kennedy isn’t sick, is she?” I said that she had a tiny bit of a cold…but not severe enough to cause panic yet. Her nose ran a little yesterday, but that was about it.
I gave Molly a bath yesterday because she has the tendency to “run and wipe” (i.e. Nose runs, she wipes it…into her hair). She was all clean and shiny and soft-haired…and by the time her nap was over…so was that idea. *sigh* I hope she gets over her cold soon so that she no longer is a booger-head.
If she hadn’t developed a cough last year…we’d still be in the dark. Her lung functions are great (currently), she has some nasty BM’s…but not on an overly consistent basis (Not every BM is nasty)…She has FTT…but that could be passed off as either genetics or her hypotonia/inability to chew.
And even funnier? Last years cough never became ‘pneumonia’…it seemed more like some minor baby asthma to the pulm. A little bit of wheezing…but no rattling in her lungs…nothing like that.
A bronchoscope and seven sweat tests later…I’m now terrified for the cold and flu season to arrive. DH and I sit on eggshells worrying over our first real experience of her being SICK with CF.
Looking back, she got “sick” a few times last year…but it was always minor fever with a rash. Dr’s always dismissed it. Now each little favor has such a bigger impact…and it shouldn’t have to be that way…but it is.
I just received this in my mail box and wanted to pass it on! Help raise money for a cure! And get some Holiday shopping done!!
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Dear Friends,
Just in time for the holidays, we’d like to introduce our 65 Roses® Collection Store where you can shop for gifts and—at the same time—support the mission of the Cystic Fibrosis Foundation!
This special collection includes monogrammed blankets, umbrellas, wraps, personalized coffee mugs, and even piggy banks!
As you may know, “65 Roses†is what some children with cystic fibrosis call their disease. But, making it easier to say does not make it easier to live with. You can help change that! By selecting gifts for yourself and loved ones, you will be showing your commitment to helping find a cure for CF.
Thank you for supporting our lifesaving mission. Together, we are adding tomorrows every day to the lives of those with CF.
P.S. To help increase awareness of Shop for a Cure and the important work we do, please feel free to forward this message. Thank you for your commitment.
**To ensure delivery of gifts for the Holidays, please order by November 8th.
And honestly…this is the first illness in the house, beyond allergies, since K’s diagnosis. As the first official illness…and one that could translate into lung issues…I am admittedly a bit freaked out. Eventually it will become old hat…but I’m avoiding my own daughter in concern for her developing a cough. Every time I go near her, I use the hand sanitizer first…but I can’t use that on my face. I’m one step away from getting a mask from the garage so I don’t spread it when I pick her up…she’s such a snuggly, kissy thing…
So today I do battle with my own fears on top of the cold. I don’t want her sick…but I know it’s unavoidable in most cases. I’ll take my precautions and hope that it’s enough.
I’m thinking of getting hand sanitizer to place all over the house…getting us in the habit of using it all the time…but then I worry aobut using it ‘too much’. Catch-22’s here we come.
What is Cystic Fibrosis? The technical definition, according to the CFF website is as follows:
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
clogs the lungs and leads to life-threatening lung infections; and
obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.
But what is it to a parent?
When we got the diagnosis we got the cold rush of fear to our belly that no amount of “It’s not a death sentence” and “many people with CF live into their 40’s” could settle. Our pulmonologist is incredible. She’s one of the best in the country, and it’s so reassuring. We have a whole team on our side, and right now K’s lung functions are so good, and she sounds so clear compared to six months ago…
But no amount of clear and happy checkups remove that fear. It’s always in my belly. I can push it aside most days, but there are times that I look into her bright and happy big eyes and I wonder how long she truly has. How I’m so thrilled that she’s such a happy child, because I know she’ll enjoy her life for as long as she lives it.
You hold out hope for a cure, for your child to live longer than you…but in the back of your mind you hear the stories of the 9 year old that lost her fight…or your coworker’s wife is in the ICU…her youngest child only 2…and she can’t even go home and play with her. They each worry you.
The goal is to not let it rule your life…becuase you will never lose the fear of outliving your own child…EVER.
An event that happened two months ago still bothers me today. And now that I have this blog, I want to bring it up again.
A common misconception/fear about K’s illness is that it’s contagious. I’ll say it now, Cystic Fibrosis is NOT contagious! It’s a genetic disorder. Two carriers have to come together to create one full CF baby. You can’t get it by casual transmission.
This still bothers me today. Because two months ago M had her speech therapy session at the park (the therapists idea). While she was playing with her ST, I took K around and let her play, etc. I put her in a baby swing and was swinging her gently. Another mom with a baby a bit younger, but quite a bit bigger than K got on the swing next to me.
We talked for 10-15 minutes, swinging our girls. It was a nice conversation. We laughed, we went through how we became SAHM’s, our “surprise” babies…it was nice. I was thinking that she was so nice, and we seemed to have a bit in common. Then she mentioned K’s small size, and we started talking about the special needs stuff. Just in passing, I didn’t want to make a big deal of it. But then I did it. I said, “Just diagnosed with Cystic Fibrosis.” Again…just in passing, not a big deal…but everything changed in that brief moment.
My son ran up and I turned my back for two seconds…by the time I turned around she was gone. No goodbye, she practically ran with her girl to their car, loaded her in and took off.
Yes, it could be a coincidence…but my heart tells me it wasn’t. I got disenheartened that day. I knew my girls faced physical obstacles…but that was the first time I came face to face with the emotional impact their disabilities would bring to them.
Disclaimer: I am not a doctor. All of the knowledge dispensed on this site comes from personal experience and should not be taken as medical advice. Do not use this site to diagnose your child or yourself. Get thee to a medically trained doctor. My only advice that I ask you to ever adhere to is to trust your gut and do what is right for your family.
Hi! I'm Sarah, of Casa de Perfect.
