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erinhermes · 08-11-2008, 04:15 PM

Hey Heidi! I'm so sorry to hear about Dallas! I think about him (and you) all the time and still keep you in my prayers - know that there are a LOT of people praying him. So, his eyes are doing that weird "twirly" thing? That's what made me go into the hospital again for plasmaphoresis and THEN IVIG for a total of 9 treatments.....I loved the IVIG - hated the other - too invasive for me

.........It has been rough, but I know that remission is just around the corner for both your precious son and myself - I just keep praying daily

.......Are the docs thinking about IV IG for Dallas? Now you will hear from others that have not had good experieces with it, but for me it was a life saver - truly. If the docs sign off off on it, it may be a good thing to explore. Plus, when they do get the PICC line in it will be a breeze to get his labs done. What are the docs saying about him feeling so yucky so soon after the thymectomy? Are they giving you any info? You do have good docs, right? They are key, b/c half the people that I have heard from seem to have crappy docs that aren't nearly aggressive enough, and they suffer needlessly........ whereas my doc gets me into the hospital whenever I start to feel sick, but the medical kills are really starting to pile up........Please know that you and your baby are in my prayers and thoughts daily, and I'm so sorry that you are having to go through this. If/when you do go back let me know where you are so I can send Dallas a little something to keep him occupied in the hospital - what type of stuff does he like? Let me know if you need anything

.....Erin

Quote:

Originally Posted by HiHo

Thanks for encouragement and info. Dallas is having a bad day (weekend actually). Muscles very tired and cramping...eyes doing their funny thing they like to do and problems swallowing...so doc is calling his neuro team in birmingham again...probably going back.

will let you know...thanks again... Heidi

p.s. erin, are you feeling better yet? I know you have been going through a rough time, and I have just been thinking a lot about you. I hope you are on your way to feeling better!