I hope this post finds everyone in good health and high spirits!
Sorry it took me so long to update with u guys. Life has been so hectic to say the least. The airlines lost our luggage, coming back from the conference in CA.,
my babysitter backed out on me last minute
( so ive been searching for a clean decent daycare for Lauryn),. Work has been busier than usual, etc......
Let me start off by talking about the conference. It was an awesome expierience!!! Of course Lauryn was the baby among the group
Everyone was so kind and warm to us. It felt like a big family reunion,not a seminar.
It was VERY informative.... But to be honest,(and I don't brag much)
.... I did'nt hear much more than I already knew...THANKS TO ALL OF YOU!!!!!!!!!
They talked mostly of Intermedias. The panal was saying if an Intermedia stays at a level of 7 or below for a period of 3-4 months ( please dont quote me) they should be treated as majors and transfuse. They also spoke of Pulmonary Hypertension,and the narrowing of the blood vessels in the heart from the body overworking??? It was so much information, that was a little complicated for me to understand at this point.
At lunch, Dr. Coates (from L.A. Childrens) sat at our table. What an unbelievable human being!!!
He said that Lauryn transfusing monthly would constitute her PROBABLY chelating at 2.5-3 yrs. He says he is very excited about Exjade. He says it is the BEST overall chelater at preventing iron overload in the heart. He also says it can reverse the damage. In his opinion it is "very safe to use in little ones". He says Lauryn will be a very lucky little girl to not have to know what Desferal is. That comment made our vacation
They also spoke of Thal Major being cured in rats-via gene therapy.
(this is happening as we speak).
Tommorrow is Lauryns second transfusion. I am anxious about it, Naturally, but frankly I am looking forward to what happens afterwards! A brand new baby. She has a really good vein in her right arm. (the only one accessable, actually) and I'm hoping they wont use that for her labs. I hope they can draw the labs from her foot again, and save the "good vein" for the catheter. Its wayyyyyy better then her head! But........ Her head is a million times better than a port in my opinion. I was told I can give her Benadryl beforhand to help calm her and help her sleep.... THEN I was told by another-NO,b/c it can mask any reaction to the blood she might have?
What are your thoughts,please?
Question? they gave her 150 cc's of blood. Is there a reason why they waited a month to tx her again? Depending on her hgb tom. if its at what point,should we consider doing it every 2-3 weeks???
BTW.. did you guys know that minors can donate blood? I donated a pint 2 weeks ago at a blood drive. I guess it all depends on your iron level.And mine was ok enough to donate. What a feeling, knowing I will help someone
It's amazing how i've gotton past the "gross out" part of the tx with Lauryn (getting someone elses blood). I turned my uncertainty into gratefulness. I wish everyone could feel this way.
Also I was going to ask your opinion.... I dont have much choice in the matter, BUT, is it okay to put Lauryn in public daycare? The place we picked is extremely clean and safe. The infants in her group were so well behaved and adorable. I fell confident about it, but i was weary b/c of her having Thal. and her immune system. Are there any precautions I should take?
Besides the obvious.
Can I send her the day after her tx? Or keep her home and monitor her for any reactions? Wont I see any problems arise earlier that that?
I've talked your ears off long enuff!!! I love you guys and I hope to hear from you soon!!
