Thalassemia Patients and Friends
Discussion Forums => Thalassemia Major => Topic started by: Christine Mary on December 14, 2006, 05:39:54 PM
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Hello to all:
I have'nt posted on here in a while, and I thought I'd let you know Lauryn is doing fabulous. We go to the dr. on Dec. 18th, and I am not worried at all.
She is eating 6 ounces now (every 4 hours) and she's awake almost all day long! She laughs constantly,she coo's, shes trying to sit up!!!! :biggrin
Her nails are purplish/red. Her skin is so rosy and I'm thinking she will last hopefully a few more months without a transx.
Every morning when I awake, I thank GOD for another day and her being perfect.
I think Kathy mentioned the movie"the Secret" a while back. Let me tell you that I STRONGLY suggest everyone on this site,WATCH IT!!!!!
It will change your life forever.
I honestly believe that positive thinking WILL give you positive results.
I am at a peaceful place in my life right now, and I dont know if its prayer, or just mind over matter. Whatever the case may be, I have hope for all of us and our children!
:hug
Christine
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Dear Christine :hug
Very happy to know that you and Laurne are doing fine. May you always have peace in your mind and heart.
Manal
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Hi Christine'
I'm glad you saw the movie, and you got the benefit or knowledge from it, in returned got peace of mind.I also benefitted from it and I always go back to it for referrences.Its like a good book or an older tutor (LOL)
Good to hear that Lauryn Is doing well.give her a hug from me. :bighug :bighug :bighug
Love Kathy
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Good to know that your little one is doing well :)
You have every reason to be happy and hopeful.
Your daughter may not need to be transfused for a long time,
and even if/when she requires transfusion she will be just fine.
More good news, the meds seemed to have worked (to control antibodies)
my son hasn't needed a transfusion in 5 weeks! It looks like he will need one next
week, but during past 6 months b/c of the antibody he has been needing them
biweekly. I hope that the effects of the meds last and he is able to go 4/5 weeks like
he always has. And one day I hope that our kids will all be cured and then we can
all do this - :rotfl Love u all Sharmin
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Christine,
I am so glad Lauryn is doing so well - that's wonderful! She is adorable in her photo. It's great to have good news in this crazy world. We have to take it whenever we can and enjoy every minute of it. Love to you and Lauryn, Jean :heartpink
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I am a new comer to this chat room n have read the message posted.
Is good to know the baby is doing well...
Let me tell you guys about my story..
I am pregnant about 30 weeks...n only then the doctor tell me my baby is thalasemia alpha major.
The baby will not survive!! i am so sad at that time..and the doctor advice me to do an operation to take out the baby..at 31 weeks.
So, I gone thru with the operation. and my baby pass away that day as well.
But some other thing happen...my womb keep on bleeding non stop... and the doctor can not stop it..the last resort..my uterus being removed as well..
I can not have baby and i am just 30 years old. I can not accept this fact...but time do pass and it is a good cure for me..
I am doing ok now..and feeling better....no worry!!
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Hi wonglk_1 and welcome to our family,
I am so sorry to hear about your loss. It is very sad that most babies with alpha thal major don't make it even until birth and those that do, die shortly after as their bodies can make no useful hemoglobin.
I'm sorry the doctors had to remove your uterus but it may have been the only way to save your life.
Thank you for sharing your story and I hope you will make many friends here. :smile
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Christine, I am so thrilled to hear that Lauryn is doing well! How wonderful! :yahoo And, by the way, her Christmas picture is gorgeous! :wub
wonglk_1, welcome to the forum. It's really nice to have you here with us. I'm truly sorry to hear about the passing of your beloved baby and also having your uterus removed. I hope you will stay here with us. Share your thoughts at any time. We are always here. :hug
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Hey Christine!
Thats a great news !
:clap :clap :clap :clap :clap :clap :clap :clap
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Hi Wonk-1.
Welcome to our web family.
I am so sorry that you lost your baby, I can't begining to comprehand your pain but I know for certain that everything things that happen to us has a reason and its no coincedence.I have heard that time heal all pain.Give yourself time all is not lost,you will survive
Maybe after you have gone through your grief and come to term with it .you will see more clearly and consider some other option.
you still can become a mother despite that you cann't give birth any more.
It is better to have the uturus out than to bleed to death.sound like the doctor did the best he/she could for you.
May the power greater than us bless and give you courage and strength to overcome your lost.
We are all here for you anytime you wish to chat.
again I'm truly sad for you. :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers
good luck.
kathy
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Hi Christine!
It's soooo nice to hear that our little "Cuppy Cake" is doing soooo well. Lot's of hugs for her :hug
Hi wonglk_1,
Welcome to the site. I am really sorry to hear what you are going through. I hope God All-mighty give you the strength and courage to go through all this trauma.
Take care, Peace!
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Hi wong,
My heart goes out to you! I am so sorry to hear about your loss. Like Kathy has said, you can still be a fantastic mother,without giving birth. There are so many babies in this world who can use a mom like you! :biggrin
I am happy to hear you are feeling better after the surgery,and may GOD bless you!!! :hug
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Wonglk_1
Sorry to hear about your loss and the pain you are going through. We are here for you.
Take care
Bharat
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Hi wonk_1.
I would like to thank- you and at the same time share with you a little bit of something that I didn't make the connection untill I read your postings yesterday. ??? ??? ??? ???.
It help me to deeply undestand my family tree in relation to thalassemia.
Seventy-two yrs ago my grand-mother whom I've never met died of heamorrhage post giving birth to my mother whom was a premature baby,then several years later my brother died when he was 3years old from fever .I think he was the fourth child with thal major, that was in the sixties.thalassemia was unheard of in my part of the world where I spent my childhood and its still the same I believe.
yes ,one can say that my mind work overtime in finding the source of my health problems .
Its like a puzzle and everytime I get a piece of information it fits and upon completion my reward will be acceptance
Maybe then then I will accept what I cann't change .Its hard work.
Thank-you to all of you .
Lots Of love from
Kathy.
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Kathy,
Have you ever been tested for alpha thalassemia? I'm curious whether any doctor has ever considered this. It is actually more common than beta thal and is predominant among those of east Asian or African descent.
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Hi Andy.
I'm sad to say that ,Ive lost faith in doctors and I am doing it on my own.
I am tired of visiting doctors after doctors and it appears as if they are inducing my pain and illness that is because they are giving me medication that is causing me more harm than good.
I was told that I have thal minor and sickle cells traits and I shouldnt worry because it shouldnt cause me any worries at the same time I'm experiencing most of the signs and symtomps associated with this specific blood disorder.
The doctors was not interested in my childhood or family health history that is because they never asked me or show interest.they told me I will need to have genetic counselling but that was as far as it went.since then I have found out that my 26yrs old son has thal minor too.
I found folic acid and fish oil is helping my circulation that is because I have less pain than I use to have before commencing the supplement
Although ,I still take the blood pressure and cholestrol medications that is to minimise the risks of getting a srokes.
thanks for you concern.
This is the second time I type on this issue I think I've lost my first post if not please exuse me getting senile :rotfl :rotfl :rotfl :rotfl
kathy
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Hello Andy.
I'm a creole, :smile :smile born in the seychelles .decendant of French ,African,Indian and I dont know what ???.I have mixed blood. :-\ :-\ :-\ :-\ :-\ :-\
Kathy
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Kathy,
Your picture is very beautiful!!!! :biggrin
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Kathy, i too agree with Christine. It is very nice :hug
Manal
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THank-you to Manal and christine ,
Kathy :hug
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((Hi Andy.
I'm sad to say that ,Ive lost faith in doctors and I am doing it on my own.
I am tired of visiting doctors after doctors and it appears as if they are inducing my pain and illness that is because they are giving me medication that is causing me more harm than good.))
HI Kathy
me also i lost my faith in Dr regard my son but not all so for this reson i start to learn my self a bout what the thalassimic child need ,,, even when i went to UK the Dr. he get surprise when i told him am a pilot not a Dr because he was wondaring how i understand almost everything for this reson Dr.Paola told me you are the Dr.for your son,, my advice is we must learn our self well to face this kind of desise ..
khalifa
state of kuwait
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Kathy,
Your picture is so beautiful! It's nice to put a face to a name. I understand how frustrated it can be going to doctors who really don't know that much about thal, but act like they do. If they would just be honest, it would be better. You have to be your own advocate and researcher. I'm glad you are finding some things to help you, Kathy. Take care, love, Jean :wavey
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hello Jean,
Thank-you for the compliment, I took this photo yesterday with all my 52yrs of glory, just as I was wondering about you,you post messages.
I'm glad you are doing well too.Nice to hear from you.Take good care Jean.
Hi Chritine.
Good news about Lauryn keep our fingers cross for her.
I know there is a different between the blood from the heel and veins blood but donot know what it is ??? ??? ??? ???.
This is for a laugh ''the reason I know is because on occassions when the nurses couldn't not found my veins to withdraw blood I offered my foot ,they told me its no good but never told me why. :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl,I thought because my foot was old, now it seems that it has nothing to do with age because Lauryns foot is the most pretty little foot ever.
I hope you do have a good laugh, I'm a clown :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl
Kathy
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i hope i'm as lovely as you when i am 52!
you have such a great face. Sharmin
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Hi Sharmin.
Thank-you. :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers
Guard well within yourself that treasure,Kindness.
Know how to give without hesitation,how to lose without regret,
how to acquire without meanness.
Dont worry too much about small stuff .
with god help you will always look prettier, even when you are a hundred ,
the secret is in all of us.
good luck my friend.
with love from Kathy.
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Thank you Kathy,
Those are wise words, I will keep them with me.
I hope you have a wonderful holiday! :hug :hug :hug
all the best Sharmin
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Hi, All,
Thanks everyone for your kind reply and I feel much better now. This is a very good place to release some pressure to all that understand.
:hug
wonglk_1
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im so sorry about what had happen with u.my cousin she is only 25 and she has her utruse taken out she had simler problem as u.after the birth of her first and only baby,her bleeding would not stop so they had to do operation on her.
welcome to this site,im also new in here,i find it really helpful.
Alia