In the past week Lauren has undergone a CT scan, MRI, EEG, EMG, hearing tests, opthomology examinations, a plethora of blood work, several urine tests and countless physical exams by a dozen or so doctors. The good news is that the team of doctors at the Montreal Children’s Hospital are leaving no stone unturned in the search for Lauren’s diagnosis. The bad news is that there is no good news to be found underp any of those stones…
Like the CT scan the MRI confirmed that there were abnormalities in Lauren’s brain. The white matter appears to have degraded. White matter helps the signals in the brain to travel, this is why she is displaying a loss of motor skills. When we first arrived the Neurologists had suspected a brain disease and the testing that we have received back so far have continued to support this theory.
At this point they are pretty sure that Lauren is suffering from Leukodystrophy. A disease where the white brain matter degrades. As there are many forms of this particular disease we are now waiting on the results from our blood work to determine which form Lauren has. Unfortunately no matter which,
the prognosis is bleak, the disease is incurable and progressive.
So far Lauren seems to be doing well, still smiling at us and trying her best to talk. Up until today that perfect little smile would send me into a convulsion of tears. I constantly ask myself how such a beautiful, perfect and “healthy” baby could be going through this.
Since Lauren’s 6 month checkup she has not gained much weight or height. In order to ensure her strength the doctors have hooked up a feeding tube to supplement her regular breast feeding. I never in my life thought that I would ever need to learn how to operate on of those but I have to say its not as terrifying as it looks.
At this point we want to thank our family and friends for the amazing amount if support and prayers and ask that you continue to keep Lauren in your thoughts and prayers. It has been repeated to me many times this week that God is bigger than any doctor or disease and that we shouldn’t lose faith. I will continue to pray and hope for more time with my angel.