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Hey all:

I have been very quiet on all list cause just a lot going on here. Monday we are going back to baltimore as CLay and Jake have endoscopies and colonscopies scheduled for tuesday morning. Jake (10) is really having a hard time dealing with things. He does not understand why HE has a mitochondrial disorder and why he cant gain weight - he has been 49-50 pounds now for about 4-5 months and he does eat. They are seriously considering putting in a feeding tube cause they think he cant process the food he is eating and that he is burning up the calories trying to digest it. This is something that I know will be hard for a very smart 10 year old to deal with and been stuggling with this - how to make him "understand" and that it will be only for nite and hopefully wont affect his ability to play and do sports, etc. He will also be in patient at Kennedy Kreiger sometime after June 18 (when school is out) for 2-4 weeks. They want to look at what he eats, is there anyway to get more calories in him. THey also will be doing a bunch of endocrine testing as he is completely off the height and weight charts, some neuro issues and try to adjust his adhd meds so that maybe he can get on one of the new non=stimulant ones and see if that helps to. Also we want to try to get him some counseling when there to deal with these issues. He has also started to get headaches 2-3 times a week. I am hoping that is its just school related - he had standarized testing last week (luckily his IEP allowed him 1 1/2 time to complete it - plus a scribe to help with his writing, taking the test in the resource room, etc) BUT not sure.

Also, Clay is doing pretty good BE he is also not gaining = so I have this strange feeling we will be going from having no g-tubes (clays was taken out a year ago) to having two this summer.

The endocopies and colonscopies are to see what is going on inside. I have recently been diagnosed with Chrons so they think they may have this in addition to mito and all else. DOES IT EVER END.

Love sharon. mom to 6 wonderful boys - twins (6) Clay (mito, DD, etc) and cole (NDA at this time), Jake -(10) (mito,adhd) and step kids - (15 - and and anst ridden teenager), Nick (14 -adhd) and RJ (13)