January 22,2015 Dixiana took to Cristian follow up with one of his specialist she was told he weight 78 pounds and height 4"5 he had grown an inch and lost one pound! Dixiana's happy to say her sons hormones and growth is perfectly normal now! She was told Cristian won't have surgery for his implant until the summer the doctor said its fine for atleast 2 years but they won't wait that long to put a new one in! On January 22 cristian also had blood test and x-ray of his arm! Dixiana has to go see Cristians other specialist in March and he may get his MRI done and his follow up with his other doctor and an eye check up to see if tumor affecting his vision! He seems to be doing so well but Dixiana's has some concerns in school wise with some behaviors of Cristian's that she will more likely help him out with follow up appt in February with Cristian's physiatrist! But Dixiana was told by his doctor Cristian ADHD caused by NF1 and the tumor on his head mass their just taking over his brain can at times make him say things without him thinking that can lead to him being most the time impulsive! Cristian doctor said he was born with NF1 only way in any way behavior wise he will be like other kids is with help and that's why She says its important he sees a physiatrist! I cristians parent want to share 2 stories I found in the Internet of 2 kids have this condition one teenage girl expressing herself towards this condition second is parent telling her son story...First story:I Was diagnosed with NF1 when I was about two. Before Kindergarten, I was in Special Ed for a year (I think) before going into mainstream school with extra help, speech therapy classes (which I was stubborn in). I had many, many MRIs in my life, probably a few a year, which has now waned down to one every other year or so. I'm lucky to be this healthy. I'm lucky to have the problems I have with coping. My problems are more psychological and how I look, how I talk, and how social I am. And yet still I struggle. I don't need tattoos. I have spots. I love my spots. It's so different and weird. As much as NF worries me about my health, I'm not sure I'd trade it in to be “normal”. It's depressing sometimes and makes me feel like a freak when I get socially awkward, which is all the time. I'm not sure how NF will affect my future. I just know it's going to kill me someday.
Second story:In 2008, at 2 years old, our son Koda was diagnosed with NF1. He's now 4, and we are dealing with the complicated and unpredictable parts of NF. I know things could be so much worse, but who in their right minds wants their children to deal with anything that affects their health, appearance, etc?
Dixiana says
Even after scary news Cabral family enjoys every day and happy to feel blessed that Cristian doing well our faith and hope grows everyday! Now 7 years old, Cristian is a sweet and affectionate boy. He likes to color , sing songs and loves movies. He currently playing soccer since January 20,2015. Dixiana says I don't want people treat him in any special way but I do just ask for patience because although he may look fine act fine he is a boy with a rare condition that can strike any time an illness and even though he has gone through painful things "also called different"he still stands looks at you full of life he is by far strongest human I know! Dixiana says I tell my son being different is like being called limited edition meaning you are something people don't see often....
