The fight!

As early as 6-8 weeks old I noticed "something" was just not right with Jaylyn. Hand dominance is not established until a child is 2 or 3 years old, and at the youngest 18 months old. Hand dominance in infancy is a huge red flag, but I was doubted and told I"I worry too much", "I know too much", and "I research too much". No...I am a seasoned special needs pediatric nurse with amazing assessment skills, and most importantly,  I AM HER MOTHER!  But apparently that doesnt trump the "experts" that assessed her for a whole 10 minutes and brushed off my concerns at every turn...for 8 months. Yes I do admit the concerns were subtle signs of an issue, but they are serious signs of serious issues. Lets see, shes left hand dominant, right hand is almost always in a fist, has right eye exotropia, right side weakness and size discrepancies between her left and right legs, AND a history of thrombocytopenia.  Hmmm Im no effing genius or anything BUT wouldnt a child with a history of thrombocytopenia, which is at risk of a brain bleed and/or stroke get an mri to rule out said brain bleed and/or stroke?!?!  No, we were questioned and sent for an xray to rule out a leg fracture due to the size difference in her legs, and because that was negative we were sent to a surgeon to rule out lymphatic disease. All along it wasnt her left leg that was swollen, it was her right leg that is underdeveloped. At every well visit, I mentioned my concerns and was told that if I am so concerned,  to call Early Intervention.  And then there came the delays in milestones. Yet not delayed enough according to early intervention, to be eligible for services...at her 4 month eval anyway. It wasnt until her second early intervention eval that we made any head way. Thankfully a physical therapist had also come out and had given her informed opinion to over ride Jaylyn's eval scores, because again she would not have been "delayed enough" to be eligible for services although her mobility issues were worsening by the day. Even after being found eligible,  it had taken several weeks to get services started due to the amount of hoops the state requires parents of special needs children to jump through for any kind of help. So in the mean time, I had called Jaylyn's pediatrician to let them know she was in fact eligible for services and can she now please get an mri?!?! I was fully prepared to hear she had a bleed, and/or a stroke which led to cerebral palsy. When her pediatrician told me that she needed a specialist to read and interpret it due to the technicality, I became nervous.  Even after the pediatrician spoke with the neurologist,  she still had some difficulty grasping just what the report said. In addition to old blood particles and signs of a stroke, Jaylyn also has a few brain abnormalities that are extremely rare. If you thought neonatal alloimmune thrombocytopenia was a mouthful, try saying "bilateral perisylvian polymicrogyria " 3 times fast! "Malformed hippocampi " , "bilateral schizencephaly ". "Temporal and pariatal abnormalities ". Needless to say...the prognosis is devastating.