I am okay and Brayden

Yes, I am doing fine.  Last week was not my best week.  A summer that was supposed have only one doctor appointment for Brayden has turned into much more.  I feel overwhelmed at times but cannot even take the time to be overwhelmed because I have to be on my game at all times.

Brayden is going in for Botox in both legs, on Tuesday Wednesday.  He will be sedated.  Since he now has listed on his file, respiratory failure after a procedure (happened back in the spring), they take procedures WAY more seriously.  Although it was my understanding he went into respiratory distress because of having two procedures, being intubated for both, in a matter of a couple of days.  He has been sedated more times than I can actually count and only one time had problems.  Anyway, Brayden had to have a pre-op meeting.  Not over the phone like we have had before, this required a full trip downtown to Children's...a  2+ hour drive in traffic in which Brayden SCREAMED the entire way.  Then at the appointment he went into a big seizure that he could not shake, so we gave him Diastat (emergency seizure med) and we waited.  It lasted about 30 minutes.  We were about to take the elevator straight to the ER and then he came out...we left the hospital knowing that if he went back into the seizure we would pass two other hospitals on the way home.  I had to rush back to get Carter and Luke from camp.

Brayden was also fitted last week for a DMO suit.  This is a full body suit, like a short sleeve and shorts wet suit.  The idea is to provide much more stability to his core and help align his spine.  I cannot even begin to explain it because I have yet to see one (you can check out this link, if you are interested).  It required a lot of little tiny measurements.  It will have snaps at the legs for diaper changing and flaps on his stomach for his two feeding tubes.  The goal is for him to wear this suit all day, only off at bedtime.  It sounds like a big pain but if it helps Brayden, we will certainly use it.

Then the vomiting....honestly I am just going to get him past the Botox procedure and then really talk to the GI doctor.

On top of things, my birthday was last week, which was just another day.  Carter and Luke started their football season (practice every night), my car had big troubles and I spent quality time with the AAA guy because I could not even make it to the car shop...I felt like I was loosing myself in the chaos.  And if I had one more person tell me they were tired, I was going to loose my cool.

Being a mom is a full-time job, any mom knows that...it is not something that ever stops.  On top of that, being a mom to a special needs guy...well, it is all consuming.  I operate at a level of stress that is just always there, sometimes it feels like it is just too heavy or times it is just "normal".