Back from the Univ.  Lots going on with little Owen.  First off, he did gain weight and he also grew in length since his last visit the end of April.  We were all thrilled to see this!  He is almost on that growth chart they are determined to measure him by! :)  We have also gotten his feeds up to 70mls for the entire 12 hours at night, with hardly any setbacks.  He did throw up one morning, a couple days after we started it, but since then he has been doing great!  These are all very positive things, and we are chalking them up to the injections.  The med we are injecting is Methotrexate, a drug normally used to treat RA, but it is also used for other immune disorders.  And, we continue to go down on the prednisone, hoping to be off it in 5-6 weeks.

On an interesting note, more of Owen's growth hormone tests have come back irregular.  We didn't meet with his endocrinologist today, but he knew we were coming and ordered retakes, and also some new tests.  He is also consulting with an endocrinologist at Stanford as the findings aren't something that, so far, have been documented before...so they might be on to something new.  We have no idea what this all means, when everything comes back, again, we will be meeting with the endo and hopefully, prayerfully, we will have some sort of an answer.  I am very wishy washy on this......some days I'm ok with no formal diagnosis...and other days I ache to have an answer as to what is wrong with my son.  On the days when we are out and about, and I've had the question, "How hold is he?" asked of me for the 50th time that day, I want a diagnosis, so I can say, "He's 2, and he's so tiny because he has "X".  Because, right after the how old is he question is asked, I get this question, "Oh my, how come he is so small?", or, "Is he a dwarf?"  But, we always get, "He is SO cute!"...because he is :)   I just want to protect him, I want his significance to be in how God made him, and not in how the world would have him to be.......

When we got home I received a call from his nurse stating his liver tests were elevated, and we will need to recheck in a month.  This could be from the Methotrexate, but this has been a pattern with Owen for quite some time, one day they are elevated, and the next they are normal, so we will see.

Thanks for the continued thoughts and prayers.