EEG

This afternoon Junior had an EEG to be sure his seizure medication is doing its job and we don't need to make any adjustments.
He did not like having all the goo and electrodes put on his head but still did great for everything. As you can see he was very happy to get out today he just didn't like the test. 

 I changed Junior's trach again today and I am so happy to report that he did awesome.  Just one big cough when the old trach was removed but no gagging or excessive coughing when the new one was put in. I was very happy to see this and know that trach changes are not going to continue being so stressful on him.

It was a blessing to see him a little more energetic today and very happy.  Baby steps but we are moving in the right direction.  His HMEs(heat moisture exchanger, keeps the airway moist and filters the air at least a bit) came in today so now we can consider some short outings while the weather is still warm(at the moment it is downright hot).  Sicknesses are already starting so we have to avoid groups of people but I hope to get out for some walks and other outdoor fun. I know Junior would love to take a trip to the zoo as well as the Aerospace museum before winter arrives. 

I wanted to do a quick update on how he is doing with the trach since we just passed the one month mark of when it was placed.  He is still very tired as I mentioned above but moving forward.   He is gradually becoming less sensitive to movement and I can lift and transfer him without it always triggering a cough.  His oxygen needs have dropped drastically since the trach was placed.  During asthma episodes he is like a little fountain with all the coughing but we are not ending up in crisis mode and it is something we can manage. He has not had an autonomic episode since the trach which is fantastic.  We suspect that now that his body is no longer having to fight just to breathe he is more able to cope with the day to day stress of things like doctors appointments, outings, etc.  The other thing I have noticed is a decrease in seizure activity.  He has not had a big seizure in 7 weeks and I am also seeing very little of the milder seizure activity that can be a daily thing(facial twitches, startles, sensitivity to certain sounds/motion/lights).

Please pray that this continues and the fall/winter are not too hard on him.