Lakelyn Strong

Where do I begin …. First I will start off by saying Lakelyn is a Di-Di twin. Meaning herself and her twin sister was conceived on two separate days. Overall I had a healthy pregnancy they were born at 35 weeks at Mercy Medical Center In Baltimore MD not to bad for twins! When Lakelyn was born a few hours after delivery she just didn’t seem “ normal “ to me she was breech and I had them vaginally so at first I didn’t know if that played a part in her unusual ways. She would make these faint cries that sounded like discomfort then as time passed on the cry sounded like pain! She would turn her head to one side and tense up these movements would last for less than 30 seconds. Literally every time my husband and I would call the nurses in and tell them about her movements and cries they didn’t seem worried at all they said that because she was a twin it probably hurts to turn her head because she may have a kink in her neck pretty much saying it was a positional thing. They sent physical therapy in and everything! Still as time went on she went on with no signs of improvement in 24 hours it had worsened. Lakelyn failed her car seat test another red flag because she kept desaturating. We had to stay an additional night for her to redo the test then we could go home the next morning she did those same movements and that same cry but this time she turned completely blue and snapped out of it in seconds. I panicked and called the nurse in they took her for evaluation and less than 10 mins the nurse came back in tears apologizing for not taking our concerns seriously and told us that our baby have been seizing for two whole days and she would have to be transported to University of Maryland Medical System in Downtown Baltimore our lives have not been the same since. Her seizures were out of control the doctors did not know why the medication was not working or why she was seizing for a whole month. Finally genetics got involved and told us that she as a severe case of KCNQ2 it is rare and the doctors don’t know much about it so only time will tell. She is developmentally delayed in many ways she is on 3 seizure medications right now with no signs of seizures! Lakelyn is now 10 months but she improves daily but I do know this will be a long journey for us this is our new normal this is our reality. #KCNQ2MOM