Pre-Transplant Testing 4-23-12

Hello everyone,
I have to be honest here- I am not much of a blogger - and don't really know what I am doing. And we as a family are the the worst at taking pictures so I will try to include more pictures as we go along but not sure how to do that at this time.  I started this to update everyone on Connor's BMT journey as we have received so much support, encouragement and prayers from wonderful friends and family along the way.  So many people helped us to run Bone Marrow Drives to find a match for Connor and I only thought it was fair to share the transplant journey with them as well.  Also, in my own research on Connor's disease and bone marrow transplant process, I have read many blogs and caringbridge pages that have helped me have a better understanding of the disease and the process and I wanted to be able to pay it forward to other parents who may have to make the tough decisions that we have had to.  So here goes...

After spending a wonderful week in Denver Colorado playing with his 5 cousins, Connor came back on April 23rd to spend the entire day getting tested, Echocardiogram, Audiology, Pulmonary Function, 24 vials of labwork and chest and sinus x-rays.  We are still waiting for some of the results but he was a true champ!  He was happy to be playing his lego star wars to his hearts content.  Then he spent the next day all day at the hospital getting his IV infusion and then the 25th back for a visit to the ENT.  He is now sick and tired of his DS and is happy to be playing outside with his friends. The DS and electronics only lasts for so long. Found out that he has a little bit of hearing loss, maybe due to all of his ear infections as a baby or it could be the minor fluid in his ear.  We are hoping for the latter but now he has a good excuse when he "doesn't listen" to us :).  We found out thru the ENT that this will not delay the BMT. 
We also had a good meeting with our transplant doctor, Dr. Tse, and it was all the formalities of signing paperwork that really made it seem like it was OK to breathe a sigh of relief and that this transplant will really happen this time.  It is also so very scary at the same time b/c as part of the contract signing process they warn you of all the side effects, which includes, Graft versus Host Disease (GVHD) where his body will reject the donor's stem cell and the symptoms can be as mild as a skin rash to permanent liver disease and possibly death.  Then there are all the side effects of receiving chemotherapy for 10 days.  We are so happy that there is this generous wonderful donor in Japan who is willing to donate his stem cells to help save our little boy but at the same time it is so scary since Connor has been relatively healthy since starting his IGg infusions.  And now we are going to make him sicker than he has ever been and have to explain to him that this is all for his own good for his future health.  How will he be able to understand any of this when it is difficult for me to wrap my brain around what we are doing?  We know that the journey ahead is going to be a very long and difficult one and know that we have NO CHOICE in the matter, I just hope that Connor will also see it this way when he is older.  And that he will find some peace with God's plans for his life and that something AMAZING is at work here. 

If anyone can tell me how to add some pics to this thing, that would be very helpful.

Thank you.