Qi Gong
Have you been doing your Qi Gong exercises? If not, you might need a refresher. Look at what I found on the web: five Qi Gong exercises that you can do any time of day to sooth and balance your energy. That’s smart any time of year.
Tags: QiFor parents of CFers: Tips for nebulizing a 10mo. old
When we first started nebulizer treatments 2 weeks ago, I was introduced to the new regimine by a puppy dog eyed specialist who used his quietest close talking voice to tell me he wasn’t sure how I would make it through the treatment regimine without some help. Perhaps he said that to turn me on to a challenge. I know that tactic. I’m a mom, after all. I’ve used that on my 4 year old to egg him on into trying to do something on his own.
I left the specialists office highly motivated to prove him wrong. Granted, I was sobbing as I left. Sobbing and tapping. (If you don’t know what tapping is, that’s a question for the resident acupuncturist).
Over the past two weeks I’ve discovered that nebulizer treatments can be pretty fun. They are a time to:
1. challenge your creativity
2. act completely silly
3. realize you actually have a great team around you. (I ask anybody who happens to be around if they are interested in giving me a hand in helping my 10 month old sit still while I put a mask over his mouth and nose). Wouldn’t you be up to that challenge?
I’ve discovered that the following things work very well:
1. Put on a movie that involves lots of dancing with bright costumes (Vegas showgirls excluded–not appropriate). We record episodes of So You Think You Can Dance. Valentino loves the music, costumes and dancing and will sit still for the full 10 minutes of nebulizer treatment
2. Ask siblings to help. I enlist the help of Romeo. I bribe him with the promise of legos or a toy from Target and in exchange he has to do jumping jacks, sing, and keep Val giggling through the treatment. (Sometimes Romeo is jumping up and down in front of Val with a frozen grin on his face asking, “Can I stop now? Will I still get the legos?”)
3. Hold your baby on your hip and do squats. Seriously. This way you get a workout in AND a nebulizer treatment AND your baby has fun. I do at least 3 sets of 15 squats. Valentino loves it.
4. Jog in circles (don’t go to far or the nebulizer cord will pop off the machine–keep the circles small).
Good luck! All of the above ideas work like a charm and are quite fun.
Whatever you do, don’t get discouraged or let anybody tell you nebulizing a 10 month old is really difficult.
Do please submit any suggestions or things that you have found useful when encouraging kids to adhere to their treatment regimine.
Changed therapy schedule-nebulizer 3x daily
Today is our 2 week mark for albuterol treatments 4x daily with the nebulizer. Since Val is doing so well, we have been moved down to albuterol 3x daily and chest PT as needed (when we hear any rattling, coughing, or Val trying to clear his lungs).
At this point, Val will hold the nebulizer on his own as we watch Sid the Science Kid. Romeo picked a Sid the Science Kid DVD that discusses healthy eating. We’ve all been focused on eating healthier in the household. Val’s CF diagnosis has certainly re-invigorated our dedication to healthy eating. Now our whole family is making sure we’re taking in extra omega oils, getting our multivitamins in, cooking with coconut oil, and using the 5 flavors to get Val the salt that he needs. What would I do without all of Gillian’s amazing recipes?
Val holds his Nemo Nebulizer
Seeing the difference- pre vs. post albuterol treatments
wheezing, coughing, swollen eyes, low appetite
bright eyes, chubby cheeks, breathing clear
Many people bemoan how “time consuming” CF therapies are. It is so worth carving out the time & keeping up with therapy in exchange for free breathing. Valentino is cruising around and is full of energy now that he’s breathing clear. I’m thrilled and the time spent on therapy is minimal in comparison to the reward.
Detox Soup…time to go shopping.
The first snow in Arlington, VA. A good time for soup
Albuterol treatments for the first time-a milestone
Albuterol, Miralax, Steroids, Antibiotics
On Monday 11/23 I took Valentino in to see his specialist. Val had been coughing, having trouble sleeping, and he was getting more and more lethargic. The biggest red flag for me was swelling and a reddish blue hue below his eyes. It seemed to me to all add up to a lack of oxygen.
I learned that he had gotten an cold/flu bug and couldn’t get rid of it the same way a non CF-er could. The doc listened to his lungs. They were a mess. Val was wheezing and coughing. His lungs were very tight.
I learned how to give him Albuterol through the nebulizer. His lungs immediately softened, his wheezing stopped and he started cruising around the office–crawling like a madman! It was beautiful.
I left the office with instructions to use the nebulizer 4x daily for 10 minutes. I also had to give Val steriods for 4 days and antibiotics for 2 weeks.
I was told by the specialist that it would be, from here on out, very difficult….sometimes depressing, scary and overwhelming.
I am on day 12 of his new treatment regimine and it’s been great so far! He does squirm a bit during the nebulizer treatments but I’ve got the best team in the world–a whole clinic full of loving people coming and going who keep me motivated. THere’s always somebody around to help me with nebulizer treatments by distracting Val with funny faces and tickles. I lean on my roommates to help take the trash out, do dishes and laundry and help with the tasks that take time away from focusing on Val’s treatments.
Val is breathing better, has tons of energy and I feel pretty hopeful about the future.
WLC Count down to the New Year
Another big challenge this month, folks, as we are all probably doing at least some planning, baking, and partying this holiday season. One of the hardest things is resisting the cookies and candies that start appearing around the office, school, and home from before Halloween and don’t stop until New Years Day, when we all feel about 4 sizes bigger than we should. And then come the resolutions not to do it again next year. Well, let’s just stop it now.
The HBC Recipe Book is full of recipes that are good for you and will help you not only create delicious dishes, they will help you stay on track with your weight loss goal because they follow the Chinese Medicine philosophy of 5-Flavor Eating. There are recipes for every aspect of your meal, including drinks. If you haven’t looked at it, please ask about it the next time you are in the clinic, or just go ahead and order your’s today from the HBC main website (click here).
Office parties: make your own sweets so you can resist the sugar. Check out the Cream Cheese Chocolate Chip Christmas Cookies I posted over the weekend. They have all 5 Flavors in them! You can subsitute GWF Baking Mix plus a couple of TSP of stevia powder into almost any cookie recipe and cut out the sugar completely! Just use the same amount of mix as flour is called for, and don’t worry about any other dry ingredients (except spices–add those).
Holiday dinners: if someone else is cooking, I always ask if they used sugar. When you start paying attention, its just incredible how much we use, isn’t it? If the main event is turkey–my favorite–skip the crispy skin (its fine, but I’d rather have my mini cheesecake later on). White, dark, whatever you like, have some. The vegies on the table (sans the marshmallowed sweet potatoes–my eyes are rolling) are probably fine (if it looks saucy, be suspect unless you know what’s in it). And repeat after me: stuffing is NOT going to help me with my weight loss goal! How I have always loved it, though. Instead, I am going to make some of my GWF Herb Loaf–that has all of the same herbs we love so much in stuffing and will totally satisfy. That recipe is in the GWF Recipe Book, also on the website. Other great side dishes from the original HBC Recipe Book will be on my table, like Roasted Asparagus with Cranberries, Kale with Garlic and Bacon (recipe), and maybe even Roasted Brussel Sprouts . Remember, if you cover the 5 Flavors in your dishes, you will be less likely to overeat.
As for desserts, how about a pumpkin pie using the Almond Flour crust (recipe), or Mini Cheescakes from the original HBC Recipe Book. You can make these as your contribution to the office potluck so you know there’s no sugar in it. For coffee afterward or a great gift idea try Chocolate Biscotti (recipe) or the HBC Truffles.
Make informed choices and you will be thankful that you feel great and are healthy for life. Save that resolution for something else because you have your weight conquered!