Friday, May 18, 2012
It's been a long time since I posted. However; a lot has happened. As in my last post I mentioned my twins. They are two little boys; and their initials are BMW-and that was done on purpose. However; when we jokingly came up with the intials we never thought of the challenges we would be facing today. Our twins were born at 29 weeks; they took the twins because Brantley Marius wasn't get enough nutrients; and Brantley seem to be the one who would have health problems. As the months progress it was if my twins did the flip-flop that a lot of twins do to their parents; however the twins aren't identical-and it wasn't the flip-flop of pretending to be the other one. Braylen Marcus was diagnosed with a rare neurological condition of Lissencephaly-if you are out there and reading this if you have any knowledge on this condition it would be appreciated if you would share the information you have. The peditrician at first thought Bray had ceberal palsy-the neurologist wasn't comfortable with diagnosing Cebral Palsy before the age of 2. The neurologist did though ordered an EEG and MRI; with both tests the neurologist's office told me they were normal; then several hours/days would pass and that's when they called and said actually no-the eeg showed Seizure Activity; and the MRI showed Incomplete Lissencephaly-an MRI of Lissencephaly doesn't look normal-to say the least we have changed Bray's neurologist at this point; however remain in the same practice. Bray has intense seizures, after a 3 week hospital stay now has a G-Tube(feeding tube); and has not made any of the milestones his twin; Brantley has. This has been a tiring, and endless stream of appointments, phone calls, e-mails, and all the while trying to learn what our little guy is really going through. Brittany is 15 now; and has her own set of demands that require my attention-so our family is coping with our sick little guy; and going on life with a life as best as we can. We have to face the reality of the condition; however we do always tend to have family members who will tell you he is just a few steps behind Brantley. Brantley is talking, walking, driving every one nuts-Braylen hasn't meant any of those milestones. The neurologists feel he will always need full time care; and will never walk, or even sit up by his self. We do believe in miracles; but we can't just sit around and hope that miracle happens we have to keep Bray healthy, and keep on getting him help the help he needs.