The neuro's nurse called tonight (5:56p.m) telling me all the test have come in and he DOESN'T HAVE LEUKODYSTROPHY!!!!!!!!!!!! Our prayers have been answered!!!!!
Wow am I relieved......I am so very happy about this news!!!!!!! YES I AM litterally DANCING with this news!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
There is still the small concern in the back of my mind since this was the same nurse I have been having issues with. She is the one who called last week after I called several times. She told me all his other lab results came in normal when in fact they didn't- as I found out a few days later by the doctor. I am TRYING to believe her THIS time--HE DOESN'T HAVE LEUKODYSTROPHY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
So right now---he does have some inborn (genetic) errors, missing white brain matter, parts of his brain are swollen, nystagmus, slight developmental delays, feeding issues, and sleeps too much, may be having absent seizures----BUT NOT LEUKODYSTROPHY!!! I can handle hard work and challenges w/development (just not progressive/terminal news!!!) Still need to figure out whats going on--but I am soooo relieved tonight;) We will be seeing genetic specialist, EEG, 2nd opinion from another neuro, and have another MRI in November to see if there has been a regression--but I have HOPE and FAITH that this will not be the case;)
Ryder is really sick today (103.8 fever) We had to cancel showing up to the fundraiser w/Holly, speech/oral motor eval, and vision therapist eval....we will reschedule when he is feeling better....
There are a few fund raisers going on right now.....even though he doesn't have Leukodystrophy (YAY!!!!!!!!!) we have still piled on medical debt w/only 1st MRI, eye dr. and a few blood test alone costing us over $1200 out of pocket (after insurance deductable!)........we are still waiting for Specialist, 2nd MRI, EEG, more lab work and 2nd opinion specialist bills--yuck---please know ALL money from fundraisers WILL go DIRECTLY to Ryder's medical bills:)
