About Me

My photo
Welcome to my blog.I like writing,music,the great outdoors travel,shopping , new places,the adventure of marriage and the small pleasures of life.im just out going love to meet new people probobly the sweetest person ull ever meet!!

Sunday, July 24, 2016

Cristian's Surviving Neurofibromatosis part 7

After 4 years past and Cristian has more  café-au-lait spots on his body he always asks what they are Dixiana tells her son it's what makes him special & unique. All children are special Dixiana says but she explains to him daily how he was born gifted.Dixiana finds that this also helps him with self-esteem issues that he was already began to develop. Doctors told Dixiana at age 10 Cristian will start shaving his face and other parts of his body that can't be stopped.April 28 he seen his specialist to check up on him see how he's growing he says Cristian is taller than 97% of boys his age. Cristian weight in December 85 pounds and height was 4"6 now in April he weight 91 pounds and height was 4"7 . On May 10 he got his eye checked to see if tumor  was making any affect on his vision all came out fine eye sight changed alittle. On June 10 he had his next MRI all came out fine tumor is still small. His last visit with his other specialist was July 21 Cristian weight was 91 height 4"8 he has blood work done and X-rays still waiting on the results. Specialist told Dixiana he will have one more last surgery the implant in his arm and then when he turns 10 they will discuss to see if they'll just let him go through puberty. It is scary and it is what keeps Dixiana up at night trying to learn everything she can what to feed her child, because he gains weight fast what therapist you must get your child in to see to stop this thing from taking over his life so he can have someone to talk to. Like any parent you obsess and research and try to feel like you can control at least a small piece of this rare condition NF1 Because with that control, comes hope and hope, well, that is something we parents with kids with NF1 desperately need.
 Cristian still stays strong and brave with each and every challenge his future brings. Dixiana and Cristian's family members are making this whole experience as positive as possible for him.

No comments: