Beverly got her Orencia infusion yesterday All has gone well so far She...

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  • Oh age and weight might not allow this...didn't think of that. How old again?

  • She's 6 years old and 35 pounds. Probably too little. Do you know age/weight limits?

  • Oh I am pretty sure that is too small...ugh. has she tried tramadol? That might be ok...I hate that she is shaking in pain. Pain use to do that. My heart aches for you.

  • Thank you. It's the worst :-( Never heard of tramadol but will ask about it. Might not be given because we need to know if Orencia is working. . . just thought of that. She didn't cry as much this morning... and to me she might look a little less puffy. Maybe it's just my hopeful eye because I want this med to work. I don't want to switch meds again.

  • I TOTALLY understand...stay hopeful. It helps to have it. :) and happy mother's day.

  • Well.... I had to reposition her at least 10 times during the night. By the sounds of her waking up, it will be a rough morning. I think the pain might be a LITTLE bit less. But it might be the weather changing too.... Side note: her right ankle is now bothering her so much she warns me about touching it. :-(

  • Eleanor is 5.5 and weighs 24 pounds, her dr finally wrote an RX for lortab and it works very well for her when regular Tylenol just won't cut it.

  • Thank you Ashleigh. Sounds like something we could get and use :-)

  • Today she is moving around! She's such a trouper. Her ankle swelling is so bad her ankles look bruised, yet she still wants to move around. I have a thick mat and some other cushy things on the floor she like to crawl over. We had her teacher over here and a social worker, then the speech teacher, then the PT who brought her adult daughter for a Beverly viewing. haha... the daughter is going to school to also become a PT and she was very nice. Between teachers we walked over to see my "big ball of negativity" sister. Catch that woman on the wrong day and you just want to run away! Then, after my dad yelled at me for something that is not my fault, I got a call that her Make-a-wish is probably going to have to change...felt like telling them, Oh, can't do an adaptive playground? Because I could go to the store and BUY a swing set....ok...ok... then her next wish would be entire home makeover. so she has a totally safe and comfortable place for her to live... how about that?! Also about to be boiling over is a little difference of opinion with her dad....is this board private? Let me just say, I'm not having a great day here. But my son, Bruce, loves me and my little b is feeling better then yesterday and probably even last week,for .that. I am very grateful. :-)

  • Wow, that is an awesome idea. I just have to get skype.... and a camera?