Remicade Approved

Phoebe got approval for 1 year of Remicade!  Phew.  Apparently they are mailing me a letter.

EDIT: Letter actually arrived later today.  It's a little confusing.  It says they approved her for something, but denied her for something else.  The only difference I can see is that they put a time limit on it, of one year, while the original (denied) request was just left open-ended.  Which is apparently a pretty good offer, from what the guy who called me said.  The letter also said that she could have infusions 2 weeks apart, then 6, then 8... I think Dr. B was talking about every 4 weeks after the initial 2 weeks, but we'll see what she says.  Overall, seems good.

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On the boards, moms were discussing how they have more than one child with JIA, or children with different auto-immune conditions.  Man, that is kind of alarming.  I was really hoping that with Jason and I having such a huge mix up of backgrounds (Greek/Scottish/Irish/English/Croatian/Polish-Romanian Jewish/Japanese) that'd we'd totally luck out and have a great genetic combo.  At least we know we make exceptionally adorable children!

Yesterday Phoebe was going around and giving hugs to everyone and Cordelia was rejecting her and not wanting to be hugged.  I said that she didn't need to hug her, but she did need to be kind and acknowledge Phoebe, with a hug, handshake, or high five.  Cordelia said that Phoebe was "icky" and that she was a scared to hug to her.  Eventually, she came out and said that she did not want to hug her because she would get arthritis. Now, I think that on one level Cordelia was just being rude and not wanting to be nice to Phoebe because they generally interact that way, but it was still insightful to hear her voice that concern.

I assured her that you can't get arthritis from another person, like germs.  Instead it is a problem that happens inside our bodies, that part of Phoebe's body isn't working right so it gave her the disease by making inflammation by mistake.  I told Cordelia she would not get arthritis..... though now that I think about it, I just hope really, really hard that will be true.  In the end, Cordelia suggested she give Phoebe a kiss, which was also acceptable.

I think Phoebe overall tends to be much more affectionate because she can observe Cordelia.  She is definitely much more aware of emotions and watches to see what is going on, while Cordelia is still extremely ego-centric.  Which I know is a developmental stage, but by being a second child, Phoebe is getting a lot more practice than Cordelia at an earlier age.

Though originally, I had thought that by being a second child, I wouldn't have to worry about her as much. You know, with the first one, everything's new and you worry soooo much, but by the time, you have the second one, you can relax a little bit, because you know they'll be fine...... But NOPE!  She was totally NOT FINE. NOT FAIR!😡  But again, just have to be glad we caught her disease so early.

The other day Cordelia got in trouble with my mom for putting legos in her mouth to break the pieces apart. She knows she is not supposed to so my mom took the legos away.  Cordelia started to cry.  I was giving Phoebe a bath, and my mom checked in to relay what had happened and why Cordelia was wailing loudly in the living room.  Phoebe listened to the story.  After my mom had left, Phoebe turned to me and said something like "Mom Mom, DeeDee (Cordelia)"  Then she put her fingers in her mouth and then made her fake crying noise.  She was totally retelling the story she had just heard!  Such a smart little baby!    My mom and sister left today and Phoebe is going to miss them a ton.  Her last words falling asleep were "Mom Mom" and she said it again as soon as she woke up!  We miss you, Mom Mom!

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Tonight was Phoebe's 8th shot of methotrexate!  We managed to have it all prepped before Phoebe really caught on too much, although I was letting her play with bandaids.  I think that really helped because she didn't go through that stage of realizing what was going on and then having to wait, while whimpering sadly.  I still sat her down and told her it was time, right before and she still gets scared and cries.  But we got through it quickly and then watched Cookie Monster.   Right before the shot Cordelia was going around telling us all to "Stay Calm," and then after she came and gave Phoebe an unprompted hug, which was REALLY nice after that conversation yesterday.

 Phoebe did not want her ice cream, which was tricky because that was what I'd put her folic acid in it.  So I switched to yogurt and even then it was a battle to get her to eat it.

Ok, this was just kind of a rambling journal-y post, I don't have any pictures or anything else to share. Good night.