cobbiemommy Posted October 14, 2012 Report Share Posted October 14, 2012 We made it through three airports and one rental car company and are now sitting in the hotel getting ready for IVIg #3 tomorrow. If anyone else is going to be at Dr. B's I will be the mom with the tall good looking 13 year old with dark hair and a brand new 3DS. Bribery can be a good thing if you think of it as Positive Reinforcement!! Would love to talk to any other parents while we are here. It is a long two days. Cobbie Link to comment Share on other sites More sharing options...
landamom Posted October 14, 2012 Report Share Posted October 14, 2012 We were there two weeks ago but I just wanted to say good luck and lots of happy thoughts! Link to comment Share on other sites More sharing options...
DeterminedMomVA Posted October 14, 2012 Report Share Posted October 14, 2012 (edited) Good luck! We would have been there tomorrow, but they squeezed us in last week instead for DS's first IVIG. DS is still fighting the intermittent headache side effect, unfortunately. Edited October 14, 2012 by DeterminedMomVA Link to comment Share on other sites More sharing options...
colleendonny Posted October 14, 2012 Report Share Posted October 14, 2012 I will be there tomorrow as well . But just an appt, no ivig. Good luck tomorrow. Hope all goes well. Link to comment Share on other sites More sharing options...
Kimflow Posted October 14, 2012 Report Share Posted October 14, 2012 Cobbie, can you share how things seem to be going after the first 2 IVIG's? Thanks, Link to comment Share on other sites More sharing options...
cobbiemommy Posted October 15, 2012 Author Report Share Posted October 15, 2012 Cobbie, can you share how things seem to be going after the first 2 IVIG's? Thanks, Better, much better. We are nowhere near "cured", but he is getting better and having some much better days. We had a great last couple of weeks, which I think can be attributed to a steroid taper. Little things are changing: like not being as irritable, being more interested in the world around him, and dealing better with adversity at school. He is also taking abx for bartonella/lyme and to cover him for strep. No one thing is helping him, lots of big things are helping him. He still has a lot of fatigue. He is pooped by the end of the day and by the end of the school week, he is wiped out. Link to comment Share on other sites More sharing options...
EmilyK Posted October 15, 2012 Report Share Posted October 15, 2012 Our appt isn't until Thursday. Good luck! Link to comment Share on other sites More sharing options...
bulldog24 Posted October 16, 2012 Report Share Posted October 16, 2012 Hi We met today! My son is the little guy. lol. anyway we are back in the am as well see you then. might be nice to talk. Day 2 for my son is tougher with headaches etc. Link to comment Share on other sites More sharing options...
colleendonny Posted October 16, 2012 Report Share Posted October 16, 2012 Good to see you today, Melissa!!!!! And nice to meet you too, Philamom Cobbiemommy, I didn't meet you, but best of luck tomorrow Hang in there ladies! Link to comment Share on other sites More sharing options...
cobbiemommy Posted October 16, 2012 Author Report Share Posted October 16, 2012 DS, was out like a light by nine. He made it through the false alarm fire drill and went straight back to bed, didn't say one word-just went to sleep. His Bart rash has already flared in just a few hours. I look at him and think, "What will it be like, when you are well??" He is sleeping so peacefully and I am praying because I do not feel peace. Hopefully one day, all our children will be well. Cobbie Link to comment Share on other sites More sharing options...
bulldog24 Posted October 18, 2012 Report Share Posted October 18, 2012 Thinking of you both today Link to comment Share on other sites More sharing options...
cobbiemommy Posted October 18, 2012 Author Report Share Posted October 18, 2012 So good to meet you and Philamom. I am always amazed to hear how our stories are the same and yet so different. Ds really enjoyed his time with the other kiddos! Link to comment Share on other sites More sharing options...
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