Logan's Update

We are home after a long day up in Miami.

I think we were at Miami Children's Hospital for about three hours when all was said and done.  Filled out lots of paperwork, met with Dr. Baitner, and took more x-rays of Logan's troublesome right arm.  Overall, I feel pretty positive, but my husband is still really upset with Logan's situation.  It does seem as if the doctor kind of minimized the disease and acted like it was not a big deal which we know it is!

Dr. Baitner reviewed Logan's x-rays, felt the bones in his arms and legs, and explained a bit more about the disease, MHE.  He was most concerned about the tumor I felt on Logan's arm that originally brought us to the doctor last week.  We are definitely looking at surgery for that tumor, but he didn't think it would be in the near future.

Dr. Baitner showed us the surgical x-rays of another boy's arm who has the same disease and similar arm tumor.  He explained what to expect as far as that surgery is concerned.  It is not easy, that is for sure.  And I am sure there will be additional surgeries for Logan; it is just hard to know where and when at this point.  The tricky thing with MHE is that it is near impossible to give a prognosis for Logan's disease and to know what it will be like a year from now, two years from now, etc.  It is constantly changing as he continues to grow.

We have our next appointment in six months and Logan will have specialized body x-rays completed at that time.  I do plan to have another eval done from a different doctor, possibly at Shriner's Hospital in Minnesota over the summer.  I think that is a smart thing to do.  

Thank you to everyone for your thoughts, prayers, support, emails, phone calls, everything over this past week.  They have truly meant the world to us.  I am trying to remain strong and upbeat throughout all of this and you have all helped immensely.