An overdue update

I can't believe the last update was in July.  Time has flown by!  The biggest news is that Peter had his FIFTH birthday last week!  It was wonderful, and our favorite part was his understanding and excitement about having a birthday.  He had some healthy anticipation and did much of the planning for his big day, including making the decision that he would prefer to have his candles placed on a cake instead of the food he prefers to actually eat, which is mint-chocolate-chip ice-cream.  He also wanted to go to Mass and to Longwood Gardens, which we gladly honored.  Peter had a great time opening cards and gifts this year too, including one from the Coram team that prepares his TPN week after week after week!

The fistula output has returned with more volume than he had last Spring when we were talking about doing surgery to stop it.  Putting on the huge amount of ascites is what likely slowed it down over the summer, but now that the ascites is back off, the output has gone up, even with less feeds than he had in the Spring.  Peter has been on weekly labs for the last two months or more, as we try to keep electrolytes in balance.  We are supposed to meet with the surgeon again when we go back up to Boston later this month, to see if we should revisit the idea of surgery.  I don't know what else we can do besides surgery, as there seems to be no way to get Peter off TPN if we can't advance feeds due to the fistula output.  The last discussion about surgery ended with a plan where he would be scheduled once he is off TPN for several months, but we can't even get enough in enterally to stop TPN for one night, let alone 7 nights a week.  We can actually see and/or smell the enteral formula exiting the fistula, off and on most days.

Peter also has developed more red spots on his left upper chest and neck.  We had noticed these towards the end of last year, and now there are more, but no one is sure what they are.  His spider veins that are along his lower jawline seem to be more apparent now that his summer tan is going away.  Hopefully they are not actually increasing. 

Now back to more good news:  Aside from the fistula going awry and the spots and spider veins, Peter is doing amazingly well.  He is being reevaluated by his therapists to see if we can decrease his therapies now, from once a week to only once or twice a month instead.  He is now truly interested in things like Playdoh and trucks and coloring, whereas a few months ago it took a good bit of encouragement to spark even some interest in doing those things.

He also took his first bathtub bath since he was about five or six months old.  He screamed the whole time, and the next time too, but afterwards stated that he liked it and is agreeable to another bathtub bath next week.  We have a PICC line protector which prevents water from getting to his PICC line and makes a bath feasible.  It has taken a long time to convince him to wear it so he can get wet, and to be honest, it took me a long time to feel comfortable with trying a bath with Peter, as the risks of infection go up dramatically if the central line gets wet.  

Peter is also learning to ride a bike with training wheels, he is learning to swing, and he has started taking interest in using his little outdoor tools to help his daddy when they are outside together.  He is also running now, and he likes it too!  To top things off, and remember, he has just turned five, he knows all of the states, by shape and location, and their capitals.

My favorite part of all of the changes though, is that Peter has become very outwardly affectionate with us.  He comes up a couple times a day just to give a hug, or to say, "Oh, Mom!" and grab my hand for a loving squeeze.  I smile even just as I am thinking about it!