It has been a good week and weekend.  I mentioned earlier in the week I was worried about Nolan.  I am so excited about how Nolan has fought back from what was starting to seem like a threatening illness.  Given his weakened state, something as simple as a cold with drainage in you and I, can become a pneumonia situation in our boys.  Nolan doesn’t cough nearly as much as he should, and he is less capable of protecting his airway.  So when mucus comes in to play – we worry.  He sounded pretty bad earlier in the week, with very crackly/labored breaths, no energy, and a fever starting.  But between an antibiotic, nebulizer treatments, and a lot of percussive therapy, he came through this one without any big issues.  I am so proud of him. Judging by the increased smiles and smirks, he is pretty proud of himself too.


This event, combined with the fact we’ve been talking about needing these things for a while, led to a spring to action from an equipment aspect.  Thanks to our home health nurse, local pediatrician, neurologist, and a lot of phone calls, the boys now have suction equipment on hand, and a vibration vest.   So next time, we’ll have even more tools in our tool box to hopefully help avoid hospitalizations.  It’s been a busy but successful week all around!


Now – we exhale, and we move forward!  Tomorrow is an appointment day. We have a neurology check up and another pre-ketogenic lab. I am handling this one so the boys and I are excited for a mom and boys’ day out!