My 2 month old daughter may have to get a transfusion soon .....

Best of luck today Bostonian!!!
 I will be thinking and praying for all of you.
I can and can't imagine what you are going through.
Someday i will be in your shoes,and I will be looking to you for help and support:) as a matter of fact i might have to take lauryn in for a cbc b/c she has been soooo cranky, it is so not like her. shes eating, but stopping in between.
Please hug your wife for me and tell her Piu will be okay.
From what ive heard, she will be feeling so much better after the transfusion.
Ya know, every hurdle will be hard to get over as they arise. the shock of her having thal mightve been the worst believe it or not.
now its time for the transfusions.the first time she chelates....eventually  all of these things will become second nature for us, so to speak,.
its just expieriencing them INITIALLY, that will be the hardest.
This is what i keep trying to tell myself. THEY WILL LIVE,LONG FULFILLED LIVES>. its just up to US right now to help make that happen.

Good Luck, and God Bless,

  Christine and Lauryn
 

Dear Bostonian

Good luck and hope all goes well. My wife is Thal Intermedia and just to see her get needles poked all the time is heartbreaking. As Shikha said, there WILL be a cure soon.

Shikha, you're right, Dr Agarwal is wonderful. He diagnosed my wife when she was in India. He also did my blood tests which were negative. We are expecting our first child. She is going into her 7 th month.
We visit the Perinatologist today. Will keep you guys posted.
Bharat

Hi all,

My daughter's first transfusion finally completed today. There were some hiccups on the way, but everything worked out in the end (although we ended up spending close to 24 hours in the hospital, to get 6 hours worth of blood transfusion).

She is doing much better now - looks more alert and has some color in her cheeks. She is a real brave girl .. she did not cry a lot when they put in the IV for the transfusion or during the whole process (she had the IV in her for close to 24 hours !!!).

We are keeping a close watch on her to monitor her progress. We will be going in for CBC again in two weeks. In case the RBC decays faster, then we will have to go in earlier.

I am glad to have the first one behind us .... provided us with lot of strength to face the future ones.

Regards,

Bostonian

  To Bostanian and wife               
I'm  praying for all of you and your little daughter ,I hope the transfussion gives her the strength she needs to florish.
Kathy

GOD help you and your wife am realy sorry a bout that even me i got shock first time i made transfusion for my son ...but i recovery fast because i know only this way for this kind of problem ..just notice her and notice her iron in the blood ....
     
                                              GOD HELP YOU
                                              khalifa  :hug

     Hey you made it through! Strength seems to come when it is needed. I'm curious as to why the whole process took 24 hours. I know it takes a while to cross-match the blood, but was there a reason they didn't do that ahead of time? Did they just want to keep an eye on her because it was the first time?
     Glad everything went without a hitch. She should be feeling pretty good - I always feel so much better after I get transfused. Congratulations for getting through a hard 24 hours. You are loving parents.      Jean

Dear Bostonian and wife

Congratulatios , you were all brave. Hope shw is doing fine now.

How will you decide the time of the second transfusion?? I mean ases on what? Shall you test the HB every three weeks? What is the plane?

Manal

The doctor has asked us to keep a lookout for symptoms which indicate that the RBC is decaying fast. He has indicated that we should be keeping track of her feeding, fussiness and especially her color, once she start getting pale, it's a sure shot sign that her Hb is low. We have a scheduled appointment in two weeks for her complete blood work, but in case we see some of the symptoms, we will consult the doctor immediately. That's the plan as of now ....

Regards,

Bostonian