• Cards and driveway bubbles

    Cards and driveway bubbles

    Nora's progression towards getting better has kind of stalled out.  We're not sure if she will ever be able to return to her previous abilities.  Each time Nora gets sick, the effort of the whole thing... she looses something.  She grows a little weaker each time. ...but I'll go more into that in a future post.  
    The other day, Nora got a bunch of "get well" letters... Continue reading...
  • Road to recovery

    Road to recovery

    So we're a couple weeks into this now.  I'm not sure what to call this exactly.  Sickness isn't accurate because she was never really sick.  I guess, maybe call it her lung issue?   Well whatever it is, we've been at it for a couple weeks now at least.  Nora is still on her mask full-time - she absolutely... Continue reading...
  • Jaime's birthday

    Jaime's birthday

    Jaime had a birthday on the 2nd.  We celebrated at home, because Nora was still recovering.  We had Pizza, presents, and cake though [of course].  Jaime adores cake.  Nora even got a present because she felt left out - Nora does love presents.  Nora also told us she was a bit upset about Jaime's birthday Continue reading...
  • Nora struggling update

    Nora struggling update

    First off, Nora is doing better.  We are basically fighting a minor case of pneumonia or most likely, atelectasis of some degree.   At times her sats are completely normal and yet she's not quite herself still. We know it is going to take time for Nora to fully recover.   
    In Nora's current state, she cannot tolerate... Continue reading...

About

My wife and I had been married for three years when we decided to start a family.

To prepare for this life-altering event, we moved across the country to find jobs that were stable and a city we felt was safe to raise a child. Once the decision was made to begin trying, we got pregnant almost immediately. Like all expectant parents, the next nine months were exciting; we decorated our nursery, bought cute baby clothes and toys, read every baby book Amazon had, and worried about being good parents.

SMA

What is SMA?

Spinal Muscular Atrophy (SMA) is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing.

It is a relatively common "rare disorder": approximately 1 in 6000 babies born are affected, and about 1 in 40 people are genetic carriers.

SMA affects muscles throughout the body, although the proximal muscles (those closest to the trunk of one’s body - i.e. shoulders, hips, and back) are often most severely affected. Weakness in the legs is generally greater than in the arms. Sometimes feeding and swallowing can be affected. Involvement of respiratory muscles (muscles involved in breathing and coughing) can lead to an increased tendency for pneumonia and other lung problems. Sensation and the ability to feel are not affected. Intellectual activity is normal, and it is often observed that patients with SMA are unusually bright and sociable. Patients are generally grouped into one of four categories. The determination of the type of SMA is based upon the physical milestones achieved. It is important to note that the course of the disease may be different for each child.

SMA

SMA Carrier Testing

Spinal Muscular Atrophy is a genetic disease.  It's something you're born with, it's not something you catch.

Certain people carry the potential for the disease - these are called carriers.  Carriers do not have the disease themselves but are the building blocks to create a child with SMA.  If two carriers,

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What exactly is a mucus plug?
Mucus plugs are the single scariest thing to a parent or a caregiver of a child with SMA.

It is a condensed ball of very thick secretions that blocks your child’s airway. To put it in simple terms, it closely resembles a hairclog occluding or blocking your sink drain. There is enough room for some of the water to pass but not enough to keep the sink clear.  The plug itself may not be reachable by a suction catheter.  Plugs can occur in the bronchial tree deep into the chest.  This is why the Cough Assist is so vital to restoring their airway.

SMA

keeping SMA healthy

How do we survive sick season?

No, people probably aren’t going to like it and, yes, they are probably going to fight you the whole way

The CDC says that cold and flu season PEAKS in November and goes through April. However, for SMA families the preparation begins long before that. We can’t wait until there is a sickness already upon us because by that time it may be too late. So we prepare. We prepare to become anti-social hermits, all to save the lives of the children we love so dearly. Whereas you can control who will socially enter our home, such as friends and family members, what do you do about those that are directly involved in the care of your child, i.e. therapists and nurses? There is a process that will help insure that your child will be exposed to as little potential for infection as possible.

goodentree    /ˈgo͝odənˌtrēˈ/   noun

derived from our last name: Gooden and the idea of a family tree We came up with the name after we made the decision to start a family (have a child).
When Nora was born and diagnosed with the terminal disease SMA, her story quickly spread, and goodentree became established.