Grief

Grief 

A silent hollow heavy heart. A moment in time where everything stands still. A moment you cannot comprehend why the world is continuing to go on around you. Without them. 

No one can see your pain that pours tbrough your soul. Life to ongoing yet time is standing still. Everything stops. The emptiness. The darkness. The immense pain. 

Much like birth it's an experience you can not explain unless experienced. Much like becoming a new mother the shock is horrific. The deeper the love the bigger the hole remains in your heart. You cling to time to stand still as it's closer to when you saw them last. You cling to possessions and memories as it's all that is left. 

When my Mum commited suicide when I was 27 I was grief strickened for a very long time. Everything was blurry. I couldn't cope. I couldn't go on with a daily 'normal' lifestyle. I was told by my an x-boyfriend's parent (he dumped me 2 months later as it was too much for him) that it was exceptable to grief for about 6 months! Wow 

I truly didn't really except it for about 8 years. Although the first 12 months was very blurry. 

Grief is so very personal and yours alone. You must grieve in your way. In your time. After several months a friend took me Latin dancing weekly. This was immensely helpful and I felt during those hours no one knew my story, my sorrow and I could allow myself to enjoy.  

If you have a friend who is experiencing loss don't be afraid to say "I don't know what to say, but im here". Lots of people lose touch as they don't know what to say. This can be very hurtful. A meal, done shopping, a kind gesture or just silent company can be very helpful. 

Passing on the love (bacteria)

With all the mamma guilt I often wondered if some of Jimmy's health issues are due to the way he entered the world. Via C-section.

It made sense to me when I heard Cyndi Omeara talk about gut health and the start up of our biome through labour. So I did some more digging. 

So a natural delivery introduces the baby to good bacteria through the vaginal canal. Breastmilk helps feed the bacteria. Although the sugar in breastmilk is not easily digested it feeds the gut bacteria.  

Thinking about this makes me again question what society is doing to ourselves as humans. I had to have a c-section after loosing a large portion of my uterus  through myomectomy the previous year. I was very lucky to fall pregnant at all, and when I did I knew I had to have a early c section to ensure I could have this baby. 

But if I'd had a drug free natural birth would he have asthma? would his immune system have been stronger to deal with his first Cystic Fibrosis infection? 

So many questions. Im not meaning to mamma guilt myself, but I'm looking at these facts as questions. It's so very interesting. 

In South American they are doing research into passing the mothers viginal fluid manually with gauze after birth to new borns who missed the good stuff via natural labour. What exciting research! Makes me wonder if it would assist other children in later infancy ;) 

Links 

http://commonhealth.wbur.org/2014/06/birth-canal-bacteria-c-section

http://www.abc.net.au/catalyst/stories/4067184.htm

https://itunes.apple.com/au/podcast/up-for-a-chat/id584063992?mt=2&i=279720807

Healthier Alternatives for NG tubes

Healthier alternatives for nasal gastric feeding (although can be used with a peg too). 

I argued with J's pead for months on getting an NG tube. As his parents we see a child who is genetically small, who was premmie, has a high metabolism and does not stop for a single waking moment. The Rch though see a child with CF who needs weight on him for "stores" incase he gets unwell. Research also indicates a healthy bmi supports lung function. So eventually I gave in (a little threat about calling docs clearly persuaded me too!).

Now that the tube has been fitted (that was a tough bit!) it's hooked up over night to give him extra calories as he sleeps. It's pretty fool proof to use and during day naps I even manage to get done goodness in to with a green shot full of flax seed oil, coconut oil, probiotics, super greens, water kefir, bone broth and more. 

The hospital will recommend Nutrini (750 calories) or pedisure along with others. These big pharma products are full of my worse nightmare ingredients -

Water, maltodextrin, vegetable oils (canola oil, sunflower oil), sodium caseinate (from milk), whey protein concentrare (from milk) emulsifier (soy lecithin), fish oil, acidity regulator hydrogen phosphate, sodium chloride, calcium hydroxide, tri potassium citrate, choline chloride, carotenoids (contains soy) (β–carotene, lutein, lycopene), sodium L- ascorbate, magnesium hydroxide, calcium hydroxide, potassium hydroxide, taurine, ferrous lactate, zinc sulphate, L-carnitine, nicotinamide, DL- αtocopheryl acetate, retinyl acetate, copper gluconate, sodium selenite, cholecalciferol, manganese sulphate, D-biotin, calcium D-pantothenate, thiamin hydrochloride, chromium chloride, riboflavin, pyridoxine hydrochloride, pteroylmonoglutamic acid, potassium iodide, sodium fluoride, sodium molybdate, phytomenadione, cyanocobla 

Hmmmm yummy! NOT! Not sure what you read, but for me I see GMO, additives, preservatives, refined, processed crap laced in endocrine disturbers. I am disturbed. This is to aid health? 

Anyway so back to my quest for a natural alternative.. I found a few to share the love! 

 Functional formularies seems a great product for illness feeds but not high cal / fat. However if you have a friend / family member needed additional feeds (oncology, icu etc) through a peg this stuff looks fabulous! And they will ship to Australia. 

http://functionalformularies.com/liquid-meals/

Pediasmart 

This is our choosen favourite. It tastes and looks like pedismart but it's organic and tastey to even add to milkshake. 

The first order I got from the U.S. I was ripped off by some sharleton charging $55 and took 6 weeks to ship! At the time I was desperate as the tube went in earlier than expected. 

Iherb later got it back in stock at a much nicer $13.65 a can. 

Ingredients 

Organic rice oligodextrin, organic evaporated cane syrup, organic lactose free milk protein concentrate, organic high oleic sunflower and/or safflower oil, organic soybean oil, organic coconut oil, organic vanilla, natural flavors, potassium citrate, magnesium phosphate, potassium phosphate, potassium chloride, choline bitartrate, calcium phosphate, sodium chloride, organic soy lecithin, ascorbic acid, magnesium chloride, taurine, natural vitamin E acetate, ferrous sulfate, inositol, biotin, l-carnitine, calcium pantothenate, niacinamide, vitamin A palmitate, phytonadione (vit. K1), zinc oxide, cholecalciferol (vit. D3), thiamin mononitrate (vit. B1), manganese sulfate, pyridoxine hydrochloride (vit. B6), riboflavin (vit. B2), copper sulfate, cyanocobalamin (vit. B12), potassium iodide, sodium selenate, folic acid, chromium chloride, sodium molybdate.

Contains milk, soy & coconut

Gluten Free. Suitable for lactose intolerance.

Made without corn & GMO ingredients.

Pasteurized during processing to unsure safety.

There are still a few questionable things in the list but my goodness better than nutrini energy being shipped to us in 8 cartons! 

I believe nothing 'packaged' is the answer but when you are in hospital you can't make your own and need alternatives! 

Lastly ENU

These guys looked great! But they sadly didn't ship to Australia. 

http://www.drinkenu.com/

I'm aware there is another company in the process here but not yet!

Of course you can make your own too but you must make sure it's super blended to avoid blocking the tube. 

💋 Katherine  

Hand sanitizer

I don't love using antibacterial. I would prefer good old hand washing, and research does suggest this is ideal. However my son had cystic fibrosis and the debate between killing off good bacteria and the bodies biome or killing bad bacteria that could land him in the Royal Children's Hospiral (again) is sadly a no brainer.

But alas there are at least more natural alternatives to some of the mainstream toxic antibacs. Buy one from organic grocer, use colodial silver in a spray bottle, water and essential oils, buy an organic or natural one online @nourished life, @theresakerr (expensive!) OR make your own!

What do you need?

Empty pump bottle (glass preferred)

Essential oils (I used lavender, theives and clove oils)

Witch hazel 

Aloe Vera  (fresh or bottled)

I used my Thermomix too but you really don't need too. 

 

Step one 

In a bowl add 1/2 cup aloe gel, 40 drops of oil, 1 tbs of witch hazel and mix (shake, whip, mix, stirr).

However if the aleo is fresh he's a few more steps. I did find it a bit fiddley to be honest, but I grow lots of aloe!

I found it easier than scraping it out 

To cut it out as shown in the pics. 

Then I scraps the remaining skin afterwards. 

Blend it all together and you're done! Non toxic (a little sticky) natural antibac!

♥️

Keeping James healthy

An overview for visitors especially staying with us ..... We love having visitors so this will help understand James health to make people less anxious and feeling unsure. 

There are lots of simple things that you can do to help James and his family stay well. Washing hands is the biggest aid in stopping germs. Everyday washing prior to eating, sneezing, after touching mouth, nose, face, prior to food preparation and before touching James etc

If you feel unwell, off or have any cold or flu symptoms please let us know we will never be offended but happy you let us know. Stomach bugs can also land James in hospital due to dehydration. 

Please cover your mouth when you sneeze and wash your hands after. Please use our fresh tissues and not a hanky (these are bacteria ridden). 

No sharing food, drink or utensils. 

James has to have 1 panzytrat for every 15 grams of fat of food. However this does not include fruit and vegetables (potato is the exception). 

His diet contains high fat and high salt. We use Himalayan salt and whole food natural fats and oils. 

Its not just colds and flus that are scary for CF. There are many bacteria's in our environment that don't affect most people, but with CF they are detrimental.  

James is to avoid at all costs: 

Stagnant water

Spas

Bath toys that can contain water

Raw Mushrooms 

Raw onion (black on onions is deadly)

Raw lettuce (holds stagnant water)

Avoid cut flowers in vase

Fish tanks 

Tadpoles 

Algae

Mould 

Digging holes in soil

Composts 

James can not be near cigarette smoke and preferably not near someone for 2 hours after they have had a smoke. 

It does seem like a big list but it's truly not. Please love our boy and treat him as if he was no different. Let's just keep his lungs healthy to love him as long as possible 

Thank you 

♥️♥️♥️♥️♥️♥️♥️

Kicking some PA butt!

Yesterday we got the results we cleared James' pseudomonas bacterial infection in his lungs! We could not be more relieved! 

The last 4 months have been crazy and when round one eradication didn't clear it we stepped up for round two.

Other than the Tementin and tobrymicin Iv antibiotics followed by inhaled tobrymicin we used colloidal silver orrally twice daily (making sure it's is colodial and quality), we used garlic with hemp oil on feet, attended salt caves regularly and the beach almost daily we also  used therapeuduc grade essential oils.

Alternating we used lemongrass, oregano, lavender and blends : theives, immune booster and RC (young living blends).  We used these via diffusing, chest rub (with coconut oil), orally, bath and feet. There was no set routine just lots of oils a lot of the time. 

Essential oils are all antibacterial and each play different roles in nutritional value, anti spasmodic / inflammatory / microbial etc. When using antibiotics they aid the antibiotics to work more effectively. You can also never build resistance to essential oils as they are produced from different trees (Phytomedicine, 2013)

We have started using Reversatol as a cftr corrector so maybe this also played a part in clearing the mucus

(EMBO Molecular medicine, 2013, BA Journal pharmacology, 2011).

Hubby wasn't on board with silver first round and we argued a lot. He was worried James would turn blue. But after not clearing it he was on board and in combo with everything it worked. There are academic papers in the uk that silver and Toby together are very effective. 

(Science Trans Medicine, 2011).

So long pseudomonas! 

*** 

Please note only young living essential oils where used. They are biodynamic pure therapeutic grade. I joined as a distributor to get the oils 24% off retail. Distributor number 

1425358

Please note we have never nebulised silver or oils nor recommend this. We advocate for oral and or topical application. 

References

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111688/

http://onlinelibrary.wiley.com/doi/10.1002/emmm.201302699/full

http://stm.sciencemag.org/content/5/190/190ra81

http://www.ncbi.nlm.nih.gov/m/pubmed/23537749/

http://www.ncbi.nlm.nih.gov/m/pubmed/22943401/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3346404/

My issues with Creon

James had terrible tummy aches nightly that woke him in his sleep arching his back. He also had a crazy rash all over his tummy. At first I assumed it was gluten or dairy intolerance, but when it didn't appear to be either I started looking at everything he was ingesting.

When I looked into creon along with his other meds I nearly died! 

Creon outlined side effects all which James was experiencing http://www.fda.gov/downloads/Drugs/DrugSafety/UCM152847.pdf

I was also feeding my baby a toxic substance with every meal or snack! And I has been since he was 3 weeks old. Surely he was not prescribed something that could be toxic? Surely not. So what is creon coated in? 

http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/Diet/Phthalates/Inactive-Ingredients-in-Pancreatic-Enzymes-2012.pdf 

Here's my findings about phthalates. This is what each granule is coated in. 

Phthalates are used in a large variety of products, from enteric coatings of pharmaceutical tablets and nutritional supplements to viscosity control agents, gelling agents, film formers, stabilizers, dispersants,lubricants, binders, emulsifying agents, and suspending agents. End-applications include adhesives and glues, electronics, agricultural adjuvants, building materials, personal-care products, medical devices, detergents andsurfactants, packaging, children's toys,modeling clay, waxes, paints, printing inks and coatings, pharmaceuticals, food products, and textiles.

"Phthalates are endocrine disruptors that have shown effects on reproductive   health and development. "http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2854732/

"Let’s Talk About Phthalates
Are Your Enzymes Hurting You?"http://cysticfibrosis.about.com/od/treatment/a/phthalates.htm

"Exposure to phthalates increases risk of asthma-related airway inflammation in children"http://www.news-medical.net/news/20120906/Exposure-to-phthalates-increases-risk-of-asthma-related-airway-inflammation-in-children.aspx

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2718776/

Creon fact sheet 
http://www.betterhealth.vic.gov.au/bhcv2/bhcmed.nsf/pages/abccremi/$File/abccremi.pdf

Pertzyer
http://www.marketwatch.com/story/cornerstone-therapeutics-initiates-pertzyer-pancrelipase-sales-and-marketing-efforts-for-the-treatment-of-exocrine-pancreatic-insufficiency-in-patients-with-cystic-fibrosis-2013-07-29

Phlathates and breast cancer 
http://www.ncbi.nlm.nih.gov/m/pubmed/20368132/

What are phthalates 
http://www.breastcancerfund.org/clear-science/chemicals-glossary/phthalates.html

Infertility
http://www.environmentalhealthnews.org/ehs/newscience/2012/01/2012-0206-infertile-couples-higher-phthalates/

"These findings call for more investigation, the authors write, particularly because some phthalates cross the placenta and cause reproductive and developmental effects in laboratory animals. In one study of male infants, increasing prenatal exposure to background levels of phthalates was associated with a decrease in the distance between the anus and base of the penis, indicating incomplete male reproductive development [EHP 113:1056–1061 (2005)]. The authors of the new study write that phthalate-containing medications are among some of the most widely prescribed drugs in the United States, which implies that many people, including pregnant women, may be exposed to high concentrations of phthalates."http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2649248/


What are the most common side effects with CREON

The most common side effects include: increased (hyperglycemia) or decreased (hypoglycemia) blood sugars, pain in your stomach area (abdominal area), frequent or abnormal bowel movements, gas, vomiting, dizziness or sore throat and cough. Always check with your healthcare professional and carefully discuss the risks and benefits before taking CREON.

Rash on creon 

So why are we buying phthalates free if we are giving it orally constantly through the day? 

So creon scared the crap out of me. I got him off creon and onto another enzyme called panzytrat and haven't looked back. All the previous symptoms cleared up within 3 weeks. Other kids with the same symptoms cleared their side affects within days!

❤️❤️❤️❤️