End of Summer!

WOW!!! End of summer!

I really have been avoiding updating Zachary’s blog…..simply because nothing has changed!

Zachary has enjoyed a fun summer. He was very busy at his Special Day summer school class in the mornings for a few weeks! He had an amazing summer school nurse, and he did really well. He is starting school back up on Monday at Walt Disney.

We decided to take a trip to Southern California for six days in August. The trip was really about Dominic and Garrett having some sense of a normal childhood! They had a blast and enjoyed every minute of it  Zachary was able to make it for about three hours at Disneyland, but he skipped California Adventure. He really had a good time looking around at everything. I would have to say he enjoyed Small World, but he really didn’t decided until at the end, so we went around one more time…..and he loved it.

Medically- he is doing the same. The PICC line has stayed in and he is receiving his nightly nutrition (10 hours) through his PICC line and is “hooked up” to his stomach feeds at night. He is still getting enough nutrition to gain weight, but he isn’t! His GI doctor said, “but he should be gaining.” AHHHHHH, yes we know this, and that is why we are still here! Really, there is nothing else to do at this point. His body will either “kick in” on it’s own without the need of the TPN and PICC line, or it won’t. Right now we are sustaining his life. The TPN is starting to take a toll on his kidneys and liver. Yet again, we really can’t do anything. There are no more surgeries, procedures or things to try, so we are just going day by day. If, the TPN stresses his organs to much….they will stop the TPN, but he can’t survive without it. So, we are simply waiting to see what his body will do. This is up to his body! We will see what happens  It is very difficult as his mother to not be able to “fix” or “help” him, but I think I realize I’ve done all I can and it really is out of my control.

I am looking forward to starting another school year! I can’t wait to start the year. It was a hard year last year with all of Zachary’s medical issues, but it can’t happen again! Dominic will start pre-school again, and Garrett will start first grade.

Zachary also has two fantastic nurses. Without these two ladies I don’t know what I would do, or how we would keep it together as a family. I really believe that God put these two women in our lives to make this difficult journey a little bit easier. THANK YOU BRANDI and BRENDA!

Again, I will continue to keep everyone updated as things happen. Even though there hasn’t been improvement--- at least nothing critical is happening.

Thanks again to everyone for your support, prayers, donations, gifts and thoughts!