Grateful and Praying

Last night Dave and I were lucky enough to attend the POTCF annual retro dance fund raiser.  A very good friend of ours puts in a lot of time and effort to pull off a very successful fundraiser for ill children who need that extra lift in their day when most of their time is spent at hospitals.  It was a great time and the laughter and love that we are blessed to be a part of with friends who have been in our lives for many years is truly something to be grateful for.  So today we still carry that love and presence in our lives with us.  They say you only need a handful of truly good friends and we certainly have that.  I cannot tell you  how many times we were told that people are praying for simon.  It always warms your heart to know that and allows you to focus on the power of prayer and hope that someday it all comes into its own with healing of Simons gut issues.  We continue to experience alot of stomach discomfort, which leads to not eating anything and running to the couch in pain complaining of a sore tummy.  With him running around naked prior to bath tonight I cannot help but notice underneath the clothing how thin and frail his little body looks.  It really rips my heart apart.  Its so hard to find the balance with the how much to try and get him to eat and how much we need to infuse him to get in calories.  With him complaining his stomach hurts its hard to say "I know bud" and push through another 20 mls of formula.  We do this from the time we wake up until well after simon has gone to bed.  Its really what keeps him nourished.  I don't know how long things will take to work or how long we will be in this position with his gut but I do know that it affects him alot and I can see that without his naps (as he refuses to take them) and the lack of calories of full feeling belly, he melts down quite a bit more these days.  When I remove his shirt and can see his venus port (the access in his chest we use for blood draws and iv infusions) sticking a good 1/4 inch out of his chest I have to ask myself "what more should I be doing?"  At any rate we continue to encourage food and infuse formula hoping, praying we can find the right mix to at least get this all under control and maintain a good flora within.  Please ask your God to will that onto Simon so that he can feel good, truly good.  Thank you so much for all your support of love.  It is enduring us to go forward. 

The girls started ice skating today.  They were both very nervous and when Marr  is nervous she cries so alot of that started off the lesson but I am the very proud mother of two girls who despite their fear, went out on the ice and slowly, very slowly, conquered that fear today.  It definately warranted a trip out to get hot chocolate afterwards.  Again, we are blessed.  Please pray for strength for myself and David that we can have the patience it takes to get through all of this without affecting everyone else in the process.  God Bless and enjoy your weekend.