another huge and frustrating week

hi everyone
mum here...
after seeing very very small steps forward with eli, we felt like we went back to square 1 with some bleeding from his gut and bowel. It was quite full on by thursday and friday with the dr's indicating that they wanted to see what was happening to him from the inside. He underwent more 'testing' on friday afternoon with a scope to see what they were both doing. The dr that did eli's scope was one of the most beautiful men i have ever met. He was truly amazing.
He told us that early indications were that his tummy was very inflamed and congested (whatever that means) with evidence of some bleeding. His bowel also indicated some bleeding had taken place (we can confirm that!) and that part of it was 'pale and wrinkly'. We were told we would have to wait for pathology to come back to rule out or confirm what was happening.
the three things still floating around in minds are infection (viral or bacterial), graft vs host disease or the return of his original condition - jmml.
this week has been again a very difficult pill to swallow. We have seen some stuff that will be with us the rest of our lives and every day makes us embrace what we have.
Eli has been really uncomfortable at times and has been very lethargic and still sleeps a fair bit. Very difficult to watch a little bubba go through what he is going through but we hold onto the hope that we will see him take his first steps are what keeps us going. Very very tough gig.
We suspect they will not be able to pin point what has gone on, but perhaps more 'excluding' those things that we think he may have. Im sure they have enough little 'pieces' of him to find what they need.
My gut thinks its probably an infection of sorts which makes it very difficult to treat when they cannot pin point it. One thing im sure he does have is another urinary tract infection...poor little thing. when it rains it pours. Hopefully they can confirm that tomorrow and give him a bit of treatment.
He is truly the most amazing little boy (and not just cause he is ours!)...but im sure if anyone knew this kid he would be an inspiration to anyone. Its going to be extremely small steps to get better and i think pete and i would be completely stoked to be home by christmas. Now that would be awesome.
will keep you posted and thanks so much for all those who continue to send their love and best wishes. For nearly 9 months people have continued to let us know that we are in their thoughts. It makes us appreciate what we have around us and how important you guys are in giving us the strength we need. We definitely have our bad days and we know that many of you are just a phone call away - so thank you!
love and hugs
the simpsons
xox
a sleepy mmmmwwwwaaahhh from eli!
.