Although modern rules of society have laid this out as a common pleasantry for us to exchange with one another as a follow-up to "hello"... it's really quite a loaded question, regardless of who you are asking. Most often, we simply reply with "good", even though many times things are far from being good. It breaks socialization patterns for us to REALLY say how things are... I think the answers we commonly give really reflect the current attitude of "HOW" we are handling our current life crises. Yes, I meant multiple yet separate collaborations of crisis totaling up to the plural form - crises. So the "good" we share with one another is hopefully more a reflection of our state of attitude in handling our current situations.
We as Braden's parents in responding to those questions about Braden, I think try to respect those who ask about him with a little more honesty into our current situation. We know you are asking out of genuine concern, and therefore we try to respect that with providing more of an insider's view into our current situation, without overloading you with all the details, unless of course, you ask:-)
With Braden we usually have a few standard pat answers: good,OK, struggling a bit, or not well.
"Good or really good" usually means his health is in decent shape, he is sharing a little of his attitude in being messed with, and his seizures are down to a minimal less than 3 a day.
"OK" usually means he might have a cold or fighting asthma, might be having about 5 seizures a day, fighting a fever and is crankier than usual.
"Struggling a bit" usually means we are fighting a bronchitis or pneumonia at home, fighting a fever, fighting a cranky baby who is restless and having more seizures than normal.
The "not well" is usually reserved for those times when we are hospitalized, because Braden's status can vary from one hour to the next, and we've not been well long enough to warrant a better status condition.
Braden's current status would probably fall between "Good" and "OK" these days. Mostly, we have overcome the respiratory viruses we were fighting this last month, but just when we think things are back to status-quo... Braden has thrown us a few challenges. For instance, yesterday, for unknown reasons he threw us a fever and started having multiple seizures back to back and he just couldn't rest or relax. Last week he decided to start breathing like he needed to catch his breath... obviously nothing a person on a ventilator needs to do. So we are reaching out again to the medical community and our medical team and really looking at everything for Braden including his diet and supplements/mito cocktail. We will be meeting with some new doctors and consulting with others who might be able to help us address specifically the needs of Leigh's patients. We know there is no cure, and we know the eventual outcome - what we are hoping is to find what HAS worked for other patients to make Braden more comfortable long term, as his disease progresses.
We thank you for your continued concern, support, and prayers for our little fighter. We will offer updates on the Fall Fundraiser later this week! The fundraiser will not only help us cover medical expenses... but we hope to raise enough funds to put a nice down payment on a handicapped accessible van with a lift and room for our family to grow by this time next year.