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.

Do you know what love is does anyone?

Love is a word said to another person now and days  like a hi and a bye! When it's said it has no meaning it's just said to make that person believe they are special! Most people don't even experience the feeling and some of us are lucky to feel it!  

Love is a feeling that can be confused with being attached to someone but the only way you can tell that if it is love is time. If time passes and you forget the person it was never love because when you love distance or time can never make you forget that feeling that person once gave you no matter the months years sometimes you miss and love that person more.  Now sometimes when your attached feelings are like 10x more intense  it's this  feeling

 desperation for him or her 
It's a horrible its to have a craving that will never be satisfied. But the truth is your just so use to that person being there all the time that you can't function without them but you actually can.People say that you can be happy alone that's a lie you always need someone to make you see life different to want to be a better you  to make you smile daily. The truth is love is a word that should only be said if it's truly felt maybe that way we would have less heart breaks and more happy couples...

The marriage life

Most the time adults think the most exiting part of a human life is to be single you go out when you want to come home when you want to no schedule no routines no rules. When you get married things change you  have another person to care for and you make a family. Theirs where things get rough in a relationship theirs no time for the couple theirs more arguing than agreeing. But because us as humans never see what we really have until we loose it is where we make mistakes. Being single can be fun but till certain time it'll get boring after awhile and no one wants to be alone no one ! The thing about marriage is its like a contract you'll never be alone and you don't only have a person to love forever you have kids that are these little creatures that tell you how much they love you for no reason they makes you drawings and tells you how much they miss you these creatures make you want to live only because you know that no one can ever raise them and treat them better than you. Having a family can be so beautiful when your apart from yours you find yourself looking at another family and thinking how is yours doing and if the way your looking at that family is the way people look at yours when your outside. In a relationship staying together its not the hard part  is actually getting along and having patience and actually communicating with each other because everyone knows the easy part is to breakup and give up. In marriage no one is perfect we all make mistakes. For a marriage to last it takes memories to make the spark last forgiveness to move on from any mistakes made and togetherness to make love last.

Jayden story with Sensory Processing Disorder

Sensory Processing Disorder(SPD) is a relatively unknown and often invisible disorder that currently has no official medical diagnosis. But it is a real and constant struggle for estimated 5 percent of children and their families  affected by it.

For children who have  reactions to the sensory environment, the world can be a scary and challenging place.

affected when living with a child with Sensory Processing Disorder (SPD). As a parent of a child with SPD, I know how hectic it can be at home. 

Sensory seekers tend to be very active children, who are on the go. They often respond positively to very intense forms of sensory stimulation and look for ways to move, jump, fall, crash, kick, push, 

For such kids, the world is simply too much. Too loud. Too bright. Food is either too soft or too crunchy. The labels and seams on clothes too scratchy. These aren’t  complainers who need to “toughen up,” but children with a physiological condition that affects how their central nervous system processes input from their senses (sight, sounds, touch, taste, smell and movement)                                    

.When Jayden was born there were nights he spent  the entire night in a vibrating baby seat so she would stay asleep

.That year, I realized Jayden  extreme intelligence crawling 5 months walking at 10 months also climbing out the play pen 

The checklist of how I knew he has sensory issues! 

Bites nails till he cuts his skin

Tip toes when he walks 

When he is tired he gets mad  hits things or hits himself 

Bang head floor slaps himself when has tantrums 

Hates crowded places like the bus 

Plays with his cuts till he bleeds 

Dramatic tantrums 

Eats toilet paper n strings from cloth 

N likes to bite the walls 

Falls asleep jumping on bed first 

Extremely hyper runs jumps all day 

Calms Down with music or getting in the shower 

Very impatient if he's out  

Don't talk much 

He don't like socks 

I fret about going to the mall, to parties, to people’s houses, to new places, but it never stops me from going. I don’t want my boy growing up feeling ashamed or lonely. I want him to know it’s OK to feel how he does and that people understand. I want to teach him healthy strategies to cope with his issues.

SPD might wear you out moms but imagine how much more it wears out the child who has it? My job is not to compare myself  to other parents around me , but to figure out what works for my own family. 

Cristian's Surviving Neurofibromatosis part 6

Cristian updates on his NF1 

December 4  he went to see his specialist to do a physical on him he is now 85 pounds 4"6 height.

Cristian also got some blood work done and all came out good a little high on somethings but he is growing slower all the doctors and I want. On March 17 of 2016 he has an appt  to see his other specialist to see any changes on Cristian. On October 29 he got his 2 nd surgery replace his implant! I Dixiana the mother of this brave boy still remember the day we found out Cristian had NF1 I think it is one of those memories you wish you could forget. Unfortunately, that won't happen, so I and my family face each day with the hope that Cristian  will be ok. That he won't get worse, that he won't be different from other kids.Although, Cristian  has been really lucky so far, there is a constant question as to how long will he be lucky. Cristian  realizes already at the age of 8 he is different. He is different from the other healthy kids at school and different by size! Cristian and many more kids with his condition NF1 deserve to be a kids who are happy and enjoying life, not worry their future with NF1 but to me a mother of a child with NF1 my son is a warrior! 

Stop judging Young mothers!

I am sick to my stomach of people judging me for being a young mother! People constantly stereotyping young mothers before they know the whole story!

I’m not suggesting that society should encourage teen pregnancy. When girls get pregnant but what about mature teenagers Some teens are more mature than people twice their age.

My children are my world isn't that what mother hood should be no matter what age .

Yet now, looking back, I realize how perfect that timing really was. It taught me more about myself, about life, than I ever thought I needed to know and it also made me realize that becoming a mother at any age comes with positive perks. 

Dear My forever friend...

Honestly Maria, becoming friends with you… I should have done a hell of a lot sooner. You’re by far, one of the most honest, loving, caring, trustworthy, hilarious, spontaneous, joyful, gorgeous, smartest, realist, kindest and humble people I have ever met. I’m not just saying that, I really mean it. Somehow whenever I’m upset—sure people can make me feel better—but you also make me feel sort of… calmer, I guess would be the word. If I have an overly shitty day or some douchebag decides to start something, you’re the first person I go to because you manage to make me feel better about the situation completely, you manage to calm me down and help me be more rational, instead of what other people say telling me to just brush it off my shoulder and move on or don't be dramatic or the one i hate most "Things happen for a reason" You manage to get my mind off of it completely and sincerely, helping me to cease all over-analyzing and joke around to have a laugh instead. You have given me some of the best advice I’ve ever received, I can’t even tell you how smart you are hun omg! We laugh at each other more than is humanly possible. most people don’t know how crazy we are. Hehe!So, dearest Maria I’d like to also thank you for a couple of things:

Thank you for always being closest to me even when we were in separate places and most important separate stages in life. Thank you for not letting us get split by dumb facts like distance or time. Thank you for never giving up on our friendship, for never shrugging and being like “Eh, things change, people change” and drifting away! We all get distant to a certain degree when we make huge transitions but you didn’t let me get very far because you knew what was truly important our friendship!

Thank you for doing all the things a real best friend does; for letting me trust you any issue  on the phone, text or video chat  when I need to, for refusing to let me cry or feel alone.Thank you for always knowing who I am and reminding me of that when I forget. Thank you for being genuinely concerned with the outcome of my life and always listening, even when you’re tired. Thank you for telling me things straight up sparing the bullshit advice, by instead giving me real advice that I’ve never once regretted taking. I can say our friendship is the most awsome and fun because we are miles apart but it's like we are  always together!You’re my forever friend my sister my best friend  I have ever had, and I want to thank you ultimately, for being you...