Cristian's Surviving Neurofibromatosis part 5

March 5 Cristian  went to see one of his specialist that knows more about his NF1 condition DIxiana  had a list of questions to ask him and he answered them one by one for example Dixiana asked what part of the brain was Cristian tumor in He responded  in back of Cristian eyes very tiny but he explained this tumor affects Cristian hormone levels his  hunger sleep cycles moods and blood pressure also body weight. The only concerning thing for Dixiana  was that Cristian her son will develop small tumors  on his body while he grows under or on top of his skin when specialist can't specify when or at what age  but if it bothers Cristian he can get it removed with surgery. Specialist also gave  Dixiana support groups information help her connect with other families with kids with NF1. Cristian had his blood pressure high that day and Dixiana asked why specialist explained sometimes with his  condition it may happen this all had to do with tumor in his brain. The same day Cristian got seen by the eye specialist his vision got a little worst but tumor is not affecting his vision.April 10  cristian had a MRI done weights  80 pounds and height  4'5 the results were the same tumor is still the same size hasn't changed.  April 28 Cristian seen his physiciatrist  she seen improvement  with cristian  so she is seeing him one last time in June. May 21 Cristian  seen  his specialist that gives him a physical and checks his growth and how puberty is going Cristian weighs 82 pounds n still 4'5 height by now Cristian growth the specialist says is fine Dixiana explain how she noticed mustache on Cristian and more hair on his legs and strong odor on his armpits the specialist explains that theirs another part of the body not the brain that makes hormones that it can't be stopped by his implant so he will be growing more hair while he grows also he will get more appetite she told Dixiana just to try control what he eats. This same day he had blood test done and got his spine checked  for any tumors. The Cabral family says Our journey is far from over in the world of NF, We are making this whole experience as positive as possible for Cristian even with this NF1 medical challenge. Cristian is very strong and brave and happy boy that's what makes him so special.

Cristian's Surviving Neurofibromatosis part 4

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.... 

My new perspective of love...

I no longer believed in the idea of perfect relationship like I use to but I do believe in love at first sight and soulmates. But lam  beginning to believe that very few times in your life, if you are  lucky, you might meet someone who is exactly right for you. They aren't the one because he/she is perfect, or because you are but because your combined flaws were arranged in a way that allowed two separate beings to still fall in love with each other.We’re all seeking that special person who is right for us. But ive seen n have my relationship  to begin to suspect there’s no  perfect person but for some reason their is that person That is perfect in your eyes! I seen the most beautiful movie called "Fault In Our stars you can tell hazel fell in  Love not for   Augustus looks, or his clothes, or for his fancy car, but because he sang a song only she  can hear. Hazel was thankful for the little time she spent with Augustus she said" I am thankful for our little infinity. I wouldn't trade it for the world. You gave me a forever within short numbered days, and I'm grateful. What makes this movie so different from the rest n his it touched my heart is that their is no happy ending but still so beautiful how their love was even if it was a short time.. They both dedicated their each day to each other n showed love to each other in few days more than ppl do in a life time... Now n days ppl forget what real romance is anyone can buy you things like jewelry candy  their is no love in that if you think about it the truely romantic things in life is those little things you do everyday to show you care and that you thinking of them. Is doing all you can to see them happy like holding their hand and sending a random I love you or I miss you text in the middle of the day the way when he/she passes by they  kiss you . It's the way they dedicate a song to you and putting on pause your  favorite movie just to hear how their day was. Truth is relationships are never easy no one tells its going to be hard the only way you can make a relationship work is if you work on it every single day and never give up on it ! Don't give up on a relationship because you feel it's just not going to get better  great relationships aren't great because they have no problems they are great because both people care enough about each other to find a way to make it work! Theirs a quote that says " Couples  who fight are stronger  than the once that don't it's not the fighting that makes them stronger its what takes place after the fighting it's the making up its coming to realization  that your relationship is more important than your differences it involves act of forgiveness and acceptance of ones mistake you fight and you learn something new about that person that's how it works real relationships aren't perfect and perfect relationships aren't real!"you can get mad at the person but still think how you can't live without them and that's the kind of love that lasts forever....

What screws us up most in life is the picture in our head of how it's supposed to be.

We all have a picture in our heads of how we think our lives should go.  We plan it out perfectly in our minds, laying out what seems to us to be the ideal plan for our lives.  We set goals toward it, we take action based on it, and we kneel down at night and ask in prayer for life to go the way we want it to. Their is this song called "Let her go" by Passenger it has lyrics that  teaches an amazing life lesson. Sometimes the little opportunities that fly at us each day can have the biggest impact in our lives! Has Hans we let the important things pass us by but when we see that their gone we start to miss them even if they are little things a the end of the day we figure that those were the big things in our lives! Lyrics say Only know you've been high when you're feeling low!Only hate the road when you’re missin' home!

Only know you love her when you let her go! Sometimes we have to thank god for not granting us some of the things we pray for! We come to recognize after that life turns out far more better than it would have if God would have granted us what we think is best for us! At out hardest times our struggles we need to learn the gods plan for each of us is so much better. Gods wisdom is never giving what we want! I love the lesson the song teaches because it reminds us that We need to let the little things that would ordinarily bore us suddenly thrill us!Also when we pray for something we want at the time, and we don’t get it, we need to recognize that God is granting that prayer because He has something far better in store for us.It just takes patience and faith.  So often when we kneel to ask for something we don’t have all the facts, and we certainly don’t know the bigger picture of what could be in our lives so we are lucky to have someone wise enough to know when to say “no” or “not now” or whatever it is that we need to hear in those moments, even if it infuriates us at the time because we aren’t getting what we wanted based on our own understanding of the options that exist.  We need to realize that there must be other options out there that we aren’t aware of yet, and it’s our job to hang on patiently and wait with confidence and enjoy each of our lives every moment  because each day as a beautiful  lesson for us.We need to remind ourselves to be grateful that someone is watching out for us and making sure we will have the very best things instead of the thing we think we want. I can count so many examples in my own life when I thought I knew exactly what I wanted to have happen in my life. I would get on my knees pray my heart out for something only to get disappointed when it didn't happen inevitably every time I went through this time passed and facts came to light it became incredibly clear to me 

why things needed to end up another way that was better than what I even knew existed... 

I  have hundreds or even thousands of times I have learned lesson in my life.  Now whenever I find myself disappointed that something didn’t go the way I wanted it to, or the way I thought it should, I have to step back and tell myself that there is nothing to be sad about because whatever is coming is going to be better than anything I have yet imagined.  And it always is…better than anything I have yet imagined, and I am forever grateful for that.

In your worst days don't let the picture in your head be limited to your current understanding of things. Trust in the fact that if you are doing your very best then things will go the way they are meant to go, even if it doesn’t look the way you thought it should.  Remember that your view is limited, but God knows everything, so do your part the very best you can – then Trust Him to do His!

stuck...

Why does life gets hard at some points? It comes to a point where you think will it ever change will it get easier?It comes to a point where you sit down and think wtf happened to me? Start to say where's my faith? Where's God when I need him the most! Is he helping someone else way more important than me? Last time I checked he was the one who gave me this beautiful life! You start to think then you start to cry because you are so lost in so many emotions.. You start to believe in what other ppl told you! You start to loose faith and who you were! And you try to find yourself again so things could get better again but it takes forever because your so scared out of the experience you been though you don't want to hurt anymore or be a disappointment to your self or others! You don't want to feel broken or like your nothing! You want to be saved but you know that you need save yourself first! But your blank headed dk what to do! So you sit their crying because your so lost! Makes you think of the past and all the ppl close to you hurt you then you think how much they ment to you but in a way the never cared for you! Then at that point you want to fall n break even more! Life been a struggle for me since I was young so you just get use to the hard times act like everything's ok n remind yourself your use to it n walk around with a fake smile I'm tired pretending that everything is alright im tired of feeling lost of giving up so you try one more time this story called life but when you least expect it you fall apart and you end up saying "why did I even try!"

Cristian's Story: Surviving Neurofibromatosis updates...

When  your child is  ill, the whole family feels the pain, particularly the parents. Regardless of the condition, the stress and pain families suffer!9-18-14 Dixiana got taught by a nurse how to start to give shots 3 x daily on Cristian for a few weeks  for his growth hormones and if he has no side affects such as diarrhea and stomach pain that can lead to gall stones! If he can tolerate with success these shots he will then get one once a month....  This now is the first of many times he will miss school for doctor visits! Dixiana says it's hard sit by your child  bedside  him in the MRI visit knowing what the doctors are  looking for—a brain tumor— which was found! “Dixiana tried her best to digest t'her son NF1 diagnosis, take it all in!,” she said. “Being thrown into a situation where all I could do was sit by and watch as my precious child changed from a healthy, normal kid, to sick,  child with so many tests and doctors visits v it's difficult!Dixiana  said it was hard  when she began giving Cristian stop growth hormone suppressant injections for his condition. Every eight hours for a few weeks, i have to poke my 6 year-old with a needle full of a painful push of medication that burned going in. No one else did the shots, just Me , i cry after doing it : injecting Cristian as he slept, waking him up late at night, and then giving with another shot in the morning n then in the afternoon n repeat the next day.

“Dixiana says felt like I was torturing him, and no one could relieve me from the pain I had to cause my own child,” Dixiana said. “Its agonizing..Dixiana and the Cabral family biggest challenge is dealing with the anxiety about what’s coming next... To be continued 

It’s Never Too Late"

It’s Never Too Late"

Let me introduce you to Diana.Diana is a twenty three years old with a loving husband Daniel, three kids and shes a stay at home mom but little do people know being a mom is one of the hardest job. Daniel works 3am to 6pm his job keeps him busy and slightly stressed most of the time. Diana lives in a fairly nice, modern home, in a ok neighborhood. With two cars in the garage (along with a car payment), and insurance an few other responsabilities. Diana is not exactly at peace with this situation of never having enough time. To put it more bluntly, Diana sometimes daydreams about freezing time because its stressing to not even have time to sit and breath  everyday she aleady knows what needs to be done the next day and so on this  is leading to consequenses upon herself and her family. Let’s just say that Diana's a little stressed.
But it wasn’t always this way…
Let’s go back in time to when Diana was  in middle school and ready to conquer the world. This was a time in Diana’s life that the responsabilities had not yet had a chance to pile up and the only one she had to take care of was herself. She had little stress and a lot of passion behind her dreams of having an amazing career and an even more amazing family to share it with. Diana was in a place I like to call ‘Pre-Paralysis’. A place where she had yet to become paralyzed by the pressures of day-to-day life. A time when the weight on her shoulders had barley even made itself noticeable.
When Diana met Daniel
Diana was blessed with an amazing boyfriend, Daniel. Diana met Daniel in New york on a summer vacation and fell in love faster than a person can blink. There was no doubt in their minds that they were meant for each other, each one completing the missing half of the other. Though they knew marriage was not an easy road, they had no doubt it was the necessary next step. Both Diana and Daniel loved children so talk of kids was an exciting regular conversation. Diana just knew her life was going to be even more amazing than she had imagined. The thought of taking on the challenges of life, side-by-side with the men she loved, was enough to give her goosebumps.
Before the wedding came came, Diana and Daniel frantically struggled for an apartment they both lived with their parents then with Diana's sister for a few yearrs. Diana pushed Daniel get their own place. They settled on a place that was small, but sufficient. While they were boyfriend and girlfriend their imaginations began ran wild with thoughts of what it will be like to live on their own as a couple, with no one to stop them from pursuing their passionate dreams. Diana squeezed Daniels’s hand to confirm their connection as they silently envisioned their future.
Making bad decisions, one day at a time.
One of the first things Diana did was plan a baby. They had needed to take that next step sooner or later, because Dianas parents were against their relationship. Blinded by the excitement of a baby, Diana convinced herself that this was a need. A month later,Diana seen how Daniel felt this unfamiliar pressure on his shoulders. Not knowing what it was, he disregarded it and quickly forgot about its existence. But maybe being parents so young was not the best idea..

IT’S A BOY!!!
Taking that natural next step, Diana and Daniel had a baby Boy.So excited and happier than ever, they both spread the news as if it were the cure for cancer. Daniel never thought he could feel a joy greater than what he felt when he met Diana, but holding his little blessing in his arms for the very first time sent a sensation through his body like he had never felt before. This was his son, his child. Daniel  looked over at Diana and they shared a short silence, communicating a new kind of connection. They were no longer just a husband and wife, but a mother and father to this beautiful little blessing. A year after came the next blessing planned only by Diana another boy!
The Daily Grind
Let’s fast forward a few years. Daniel been working as a truck driver.Great at what he does, Daniel made a good living making vacations and buying new things for the apartment. The problem was that he had to put in many hours a week to do so and the work was  exhausting  with his original pre-paralysis dreams for success in another job where he can work with a better salary for truck driving and paid vacations and paid over time. When he’d come home in the evenings, Diana  would be exhausted from taking care of their, now, 2 kids as well as making sure dinner was waiting for Daniel at the end of her long day. Their enthusiastic relationship had been diluted by this daily grind. Daniel was always tired and hardly had time spend with Diana and his kids.
The weekends were barely any better. Daniel sat in his most Saturday morning, writing check after check to cover all their monthly bills or Running errands for what was needed for the house or kids.  when I mentioned that first sensation of shoulder weight? Well, Diana and Daniel  now had a whole pile of bricks to deal with.
Somethings got to give!
Diana n Daniel talked about stress in life, because that the level of stress both were living  was literally going to eating away of their insides. Daniel and Diana talked about making some changes. Both completely agreed that they made a wrong turn somewhere early on and that for their own health and happiness they needed to find their way back to sanity.
“What happened?” Daniel asked in the tone of a statement. “I mean, how did we get here in the first place?”
“All I know is that we went from white to black with so many shades of gray that we never realized the tone of our life had changed.”
Diana smiled.
That night, daniel and Diana slept better than they had in years. Both at peace with their agreement for drastic change, they felt the shoulder weight lighten, even if only for a moment.
Undoing The Damage
Daniel and Diana are now learning from experience that one positive action leads to more of the same. Each step forward strengthens their stride and reinforces their foundation.
It’s not our location, but our heading that matters most.
People often talk about where they are in life, but I find that it’s where we’re going that is most important. Time is a relentless taskmaster who never listens to reason and just because we’ve made it to a positive life doesn’t mean that tomorrow it can't fall apart. Even more importantly, for those who find themselves in a pit of despair, everything feeling like a failure, I encourage you to focus on your direction, not your current place on the map.
That’s what’s so great about life! We can make our own choices and choose to live the life of greatest fulfillment. We ALL make mistakes and have to deal with the consequences, but that doesn’t mean we can’t, AT ANY TIME, decide to  make better choices for ourselves toward a more positive future. Stop focusing on the mistakes you’ve made and start planning for the future you’ve always imagined. Stop listening to the voice that says that you can’t and start chanting the battle cry for a better future. Stop reacting to life and start challenging yourself to push for greater forward progress. You can’t undo the past, but the present and the future, they are shapeless objects, waiting for your hands to mold them into the life of your choosing.