update

I feel like a loser.  I have totally neglected this space and, truth be told, I don't think I've been in a very good place to give an update on what's been going on in our life.  I've sat down at my computer numerous times to try and write it all out but the right words just never seem to flow.  My mind has been flooded with what seems like a thousand different thoughts and emotions and trying to make sense of it all has been extremely overwhelming.  It probably doesn't help that those thoughts and emotions seem to change on a daily basis.  I think I've finally found a topic to write about that seems somewhat manageable, and that is a question I get on a near daily basis:

How is Cale doing?


I never really know how to answer that question.  My base line for how he's doing is so skewed because he's never doing well, good, or great.  We are at a place in life where I never wanted to be and even though Cale can't express his thoughts, I'm fairly certain he is sad about where we're at, too.

It's been three months since Cale's surgery and it seems as though that surgery fixed absolutely nothing.  Okay - not nothing - but the pain and discomfort with eating is still present, if not worse, and we've found ourselves taking several steps backwards in order to try and maintain his quality of life.

After much trial and error Cale is now being tube fed continuously through the night.  We have eliminated all daytime feedings, with the exception of the few bites of solid food he gets when he sits down at the table with us, but we now have to come to terms with the fact that Cale is 100% reliant on a machine to feed him and give him the nutrition he needs to grow.  That stupid pump is still an eyesore in his bedroom and I have yet to get used to seeing it beside his bed.  The good news is that he has been a tremendous trooper with everything and he tolerates being hooked up at night like a champ.  He has only turned off his pump once, which is highly amazing considering the fact that he loves anything technology, and he waits patiently for Alex to come and unhook him in the morning so that he can get out of bed.  He truly has been the one thing that has made this transition bearable.  I can't imagine how we would do this if he were defiant towards all of the changes that have had to take place.

We made the decision to eliminate his daytime feedings because he was in so much debilitating pain after each feeding.  It was getting to the point where he would spend most of the day laying on the ground because of his level of discomfort, and even though Cale has his challenges, he's never been the type of kid to be so sedate and inactive.  It was heartbreaking to see him not want to play with his sister and even more heartbreaking to see him lose such luster for life.  Going places was almost not an option and we all were becoming incredibly stir crazy.  I felt extreme guilt for keeping Riley from play dates with her friends and after speaking with his dietician, we finally made the decision to quit feeding him during the day in hopes of making him more comfortable.  This decision hasn't been a quick fix because any amount of food or liquid to hit his stomach will send him in a tizzy, so that means one goldfish cracker or one sip of water, but we have noticed the past couple of weeks that things seem to be better.  I'm able to go to the grocery store or send him off to school without incurring a bout of severe anxiety.  We've been puzzled by the fact that he seems so miserable during the day when he eats and yet he seems to tolerate "eating" at night just fine.  I've only recently conjured that he's simply just used to the discomfort and since he's laying down the entire time at night he's able to "make it through".  I do think the continuous feeding is interrupting his sleep because he's back to taking naps during the day and when I wake up in the middle of the night to feed Cash I can hear him in his bedroom rustling around or kicking his feet against the wall.  All in all, though, it has been a huge relief to know that he's getting all the nutrition he needs to grow.

Since the surgery wasn't the miraculous answer we thought it would be, we are now working on making a plan for what's next.  We have been diligent in documenting absolutely EVERYTHING that goes on in Cale's life.  If he gets a sip of water, we write it down.  If he goes to the bathroom, we write it down.  Anything and everything gets written down in the hopes that whichever kind of doctor/specialist we decide to see next, we will have the absolute best information to give them so that they can have the best chances of helping Cale.  We are also in the beginning stages of getting Cale approved for in-home nursing.  This step in our journey is almost due an entire post of its own because there are so many emotional hurdles that I've had to jump over to come to terms with this, but our goal of the nursing is to have a medically correct documentation of what life is really like for Cale.  It's one thing for me or Alex to tell a doctor what's going on, but I think it will be entirely different coming from a nurse who can observe Cale during his feedings.  Having a nurse in our home will be extremely invasive and I can't even really wrap my mind around what this will be like, but I have to remind myself that this is only temporary and it's serving as an important step in reaching our goal to make Cale's life better.

All of this is to help make his life the best that it can be and I truly believe his life can be, and will be, great.  It's just taking an awful lot to get there.

I'm not really sure I did the best at answering the question of how Cale is doing.  Aside from the pump feedings and the hassle that goes along with that, he's doing okay.  The surgery didn't accomplish what we thought it would and he isn't magically surviving off table food like some people imagine.  He's able to chew and swallow five or six bites of whatever we're eating but it's going to be a long, hard road to not only eliminate the pain that comes from eating, but also learning how to eat since that's something he hasn't been able to do during the last five and a half years of his life.  We're making progress and we just take it one day at a time.

So there it is.  An update on Cale!  Hopefully my next post can be lighter and more positive.  I can't wait to write about Cash...can you believe he is going to be nine months old in just a matter of days?!?!