FitOKay's Journal, 10 June 2014

Our week just keeps getting better /sarcasm

So my nearly 4 year old (in a month) already has damage in his lungs from severe asthma, as we found out at the previous visit, was put on qvar 80 2puffs 2x a day by his pediatric pulmonologist; who has nearly 50 years of practice and more then 30 years of treating the children with asthma in my family.

We found out today that the insurance company has informed his doctor that Trace does not need to be on the 80 qvar but instead half that, the 40 qvar.

Now, Trace also has a growth disorder that makes him smaller then a 2 year old currently and can not be treated for the growth disorder until we can be certain an abnormal growth on his pituitary (not related to the growth disorder he shares with his older brother) isn't cancer. So we have a child with lungs the size of a 2 year old's, that are already damaged (and if he's not being treated with a high enough dose will be stacking more damage on his tiny lungs) and insurance is going to play chicken with his breathing. Since he can't do pfts the only way to get him back on the higher dose is if he stops breathing again or otherwise lands in the er for breathing problems.

I don't even know how to deal with what I'm feeling at the moment. The screw around crap they do with Tristian's hormone shots is bad enough... at least that only (only!) affects quality of life- not the actual being alive part.

Obviously I would be able to process this better if we weren't already dealing with the renters screwing us around... but I literally think I am just numb atm. I would say things can only go up from this point... but I'm afraid what might happen if I dared to actually believe that o.0

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1409 kcal

Fat: 78.79g | Prot: 58.14g | Carb: 141.46g.   Breakfast: Coffee, Coffee-Mate Sugar Free Peppermint Mocha Liquid Coffee Creamer. Lunch: Fresh Pork Sausage, Sweet Onions, Kraft Ranch Dressing, Baked Potato (Peel Eaten). Dinner: Kraft Ranch Dressing, Tumaro's Whole Wheat Wrap, Old El Paso Steak Fajita Meal Starter. Snacks/Other: Aquafina Water (16.9 oz), HyVee Natural Fiber Powder, Orange Flavored. more...

1643 kcal

Activities & Exercise: Stretching (yoga) - 5 minutes, Sleeping - 11 hours, Resting - 12 hours and 55 minutes. more...