Nina
  • 38, Female
  • Winston Salem, NC
  • United States
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Crazy thing about SCD...

Started this discussion. Last reply by Sickle Cell Warrior Aug 27, 2009. 7 Replies

 

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Then Came the reality check....

Posted on July 9, 2013 at 6:20pm 2 Comments

Hi Everyone,

So sorry beeing away for so long. In fact it has been quite a while since I came here. Shamefull....

Yes, the reality of dealing with sickle cell just came to me as hard as it could. My son, who was crisis free until the age of 4, had a acute stroke 3 weeks after his 4th birthday. It was devastating and to make things even more painful, 6 months later he had the second one. We are worrking to have him a bone marrow transplant as quickly as we possivble can now,…

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It has being quite a while....

Posted on May 17, 2011 at 12:31pm 2 Comments

Hello everybody,

Sorry I have being so away. Actually I think since I got pregnant with my second child I didn't had much time to sit and share some about us. My son is already 2 years and 9 months old, and as good as it can look, we can say we had have never any problems with him. He only had swelling on his foot and hand once, when he started teething, and despite his hgb level being always lower than 6g/dl he is a hyperactive little one. Yeah, we had a little girl back on Feb.…

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How keep your faith....

Posted on August 9, 2009 at 4:55pm 1 Comment

J how difficult the life can become when we found that our love one born with a special condition. I think everything goes to the floor and you just loose your conscience when the doctor just look at you and say: "You know, your baby has some disease for life." I confess that for the first time in my life I questioned God's action, and I wanted to know why this was happen to me.

For while was difficult even to think about the doctor's words. I felt guilty and a looser.

But I thank God… Continue

He just turn 9 mo on Friday and Yesterday start to walk forward in his walker.

Posted on May 3, 2009 at 3:23pm 2 Comments

I'm to happy and I need to share it with you my friends. Yesterday I got crazy seeing my little one going after me in his walker.

It's amazing how his system works fast. Two days ago he was a little bit in bad mood. Is always like that after we went to see his Hem. He definitively doesn't like all the procedures, but soon everything goes back to the normal!!!!!

Despite everything looks fine and the only concern be his hgb level, we keep looking him very close. My husband says I'm… Continue

Hello everybody!!!!

Posted on April 28, 2009 at 2:07pm 7 Comments

How nice is find something like this blog. This will be very helpful, because by it I can communicate with people who live with sickle cell. First, I beg you pardon because my English is not good, then sometimes it will be confuse.

But any way, here I going to tell a little about me and my family.

As we, my husband and I, are carriers of Sickle cell trait, my little baby born with SCA. He was diagnostic in the first blood screening right after he was born, and 2 weeks after his… Continue

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At 6:28pm on March 1, 2016, Ade Dotun said…

happy birthday Nina, wish you and your son a blessed year!

At 12:08pm on August 23, 2012, Ade Dotun said…

wow, what an amazing little fella, i wish him continued great health and success, hes well on his way to greatness!

At 1:38am on May 23, 2011, Kavonda Jordan-Dean gave Nina a gift
Gift
Keep up the wonderful work as a mother!!!!!
At 12:21pm on August 31, 2009, loyses said…
Thank you so much for your strengh and kind words. May God Bless you and ur son.
At 12:13am on June 2, 2009, Paula Matias said…
Hi Aline!!!

No, He never had anything. He has sickle cell with HPFH. I have a friend in Brazil that the doctor didn't give them an answer until now and can you believe the baby is almost one year old. He is not even on Penicillin. I'll definitely call you.

Take Care
At 4:26pm on May 30, 2009, Paula Matias said…
Yeah, I saw your name, it sounded Brazilian (lol). I'm Brazilian as well. I was reading your story, and it sounded so much like mine. I found out my son had sickle cell after a week he was born and he is now 9 months old too. It was the hardest months, the first 5 months of his life. Not by him getting sick, but the news, how to deal with it, looking for answers....everything. What city are you from Brazil? I look for a lot answers there too.
When I was pregnant, I did the blood tests that the doctor asked for, and I found out I had the trait. By then, I didn't even know what was sickle cell disease. Then, I freaked out, because and you read about it, there is so many painful things that may happen. Right after we finding out my husband was tested, and he doesn't have neither the disease nor the trait. So, we were relieved. So, when they called us, I was so upset. I told them, there was no way he could have sickle cell. But, they assured to me that he had it. They explained that sometimes the person has a different kind, like talassemia and. So, we went to he first appointment at Children's Hospital. I asked them what kind he had, but they said it was too early to find out. Just when he turned 1 year old. There is no way I was going to wait that long. I told them to test my husband. Because, if I have the AS, my husband would be he decisive case. They agreed and my husband did test, which it took forever for the doctor to call me back with the results. I as the one calling and bothering. When we saw them again, she said she had at her table but there was no reason to call, because she was going to see us in person anyway ( after 2 months). I don't think they understand what we go through. The agony and everything else. To them it is like nothing. It really makes me mad.
Does the carao work? How are giving him folic acid? breaking on the food?
At 2:23am on May 30, 2009, Paula Matias said…
Oi Aline, vc eh Brasileira?
 
 
 

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