Thursday, November 21, 2013

Latest Happenings

So much has been going on lately.  I'm going to see if I can sum things up in a nutshell for you all here.

Bryce continues to do amazingly well.  He continues to do things that we never thought we would see him do again.

 5 minutes with his head held high! 

Um, Yes...that is Bryce SITTING on his own.  Sitting was the first ability that he lost over 5 years ago!   I honestly never thought I would see this day!  Miracles do happen!

A little motivation goes a long way!

Just a couple of kids hanging out watching My Little Pony videos.

The only real issues we are having at this time are his vomiting episodes over the past few months, the increase of apnea episodes over the past few weeks, and seizure like activity that we are keeping an eye on.  We don't know what is causing either of these things to occur.

The vomiting issues began about 8 months ago.  Within this time he has had 7 vomiting episodes.  The episodes are strange because of the timing of things.  It goes kind of like this:  Around either 9:30am or 2:30pm, Bryce begins vomiting without warning.  This continues for about 4 hours with him vomiting about every 8-15 minutes.  The first 2-3 times are quite violent and bring up his most recent meal.  Then it turns to just mucus type stuff that he is vomiting and, during the last 5 episodes, he also vomited blood.  He becomes pale and lethargic very quickly and has to be suctioned each time he vomits since he is not strong enough to "get it all out" on his own and will begin choking easily.   Because it comes on so suddenly and he needs suctioning almost immediately, we now carry his suction machine around with him everywhere he goes.  During the night, Bryce moans and seems to be very uncomfortable.  About 1 in the morning, he begins running a low grade fever, around 101.  That continues until about 10:00 the following morning.  That entire day, Bryce is very lethargic and continues to appear to be in pain.  He sleeps most of the day and has no interest in what is going on around him.  That night, he sleeps fine and wakes the following morning good as new!  He is then fine until the next episode occurs.  No one else in the house gets sick, so we have ruled out a stomach flu.  Cyclic Vomiting Syndrome, among other things, is being considered.   For my own record, here are the dates of these episodes:

March 29
April 22
May 17
July 18
Sept 2
Sept 19
Sept 28

The apnea episodes are something he has dealt with for years.  He used to have them quite often, then he went for a period of time (almost a year) with only a few here and there.  Unfortunately, they have become quite frequent again.  These are times where he seems to stop breathing for a short period of time.  Scary stuff!

Well, this post seems long enough for tonight.  I will continue with Annalise's latest happenings and the latest in our genetic sequencing adventure soon.  Good night all!

1 comment:

Lex-a-roo said...

oh my goodness. Poor Bryce! I hope that sweet one starts to feel better and they find some answers for you