BIG NEWS

There's a conversation that I've been re-playing in my head for a couple of months.....

When we returned from Phoenix, after Zeta's brain surgery, a doctor said something to the tune of- "yeah, why shouldn't even Zeta have been afforded the same treatment as any other child with this type of tumor?".......

Now, as a typical parent you might become a little defensive because.... of course your child deserves as much as any other child.......As a parent of a special needs child D-E-F-E-N-S-I--V-E-N-E-S-S  can only be explained as an understatement...

                                  Because.....
                                     Because.......

HECK , Yeah - my child deserves an opportunity to live life to the fullest.  Heck, yeah - my child deserves a shot at a chance at life without seizures ravaging her body.  Heck, yeah my child is WORTH it!

Now, I understand that the doctor (whom I really like) did not mean anything negative in his comment..... but as a parent who - at times - has had to fight tooth and nail to have my child's needs heard and met..........well, let's just say sometimes I can take things a bit personally..........

Now, all of that aside - I relish in how much improvement we have seen in Zeta since surgery.  Just this week alone she has all of a sudden gained so much more head and trunk control.  She seems to become more active everyday!  I stand in amazement at how her health has improved overall.  I rejoice in the fact that we haven't had any sick hospital admissions!

NOW - Here is the BIG news---------

We talked with Zeta's pulmonologist yesterday and had some lab work done.......
         
                          Zeta's blood gases were   * quote    BEAUTIFUL   unquote*.

What does this mean???

It means we will begin working toward the ultimate goal of taking her completely off the ventilator!!!!!!!!

It seems as though this will be a PROCESS.....maybe a s.l.o.w. process.....but still a process which equals PROGRESS!  We will start tonight by letting her sleep WITHOUT the ventilator (first time since January).  Then we will repeat the process every fourth night and have her blood gases re-checked in 2 weeks.

Putting Zeta on a ventilator saved her life (on more than a few occasions) and made her quality of life at home much better than it had been without it........this is a bittersweet feeling.....we may finally be working toward getting rid of a machine that we have depended on (and were so thankful for) for so long.....at the same time I am scared out of my mind...I definitely don't want to go back to 'where we were'......Ironically, though, I don't think we'll be there....I think so many of her problems could be attributed to the neurological stuff going on that now that the tumor is gone we are definitely going to remain on the road to recovery.......

EXCITED? - Heck Yeah!!

NERVOUS? - You betcha!

 

FAITHFUL IN GOD'S PLAN? - Without a doubt!!!