A big little gain for Emily
AnonymousJune 21, 2008 at 4:28 pm
As most of you know Emily has been doing pretty well lately. I thought I’d give a small update on her, if you all don’t mind.
Emily is now playing T-ball & was told by one of the coaches that she has “an arm of steel”. This thrilled her to no end & she tells EVERYONE who she comes into contact with this fact, LOL. It’s fantastic to see her out there hitting the ball & running the bases. She even got to play 1st base (which is where all the action is in T-ball) and she did really well with catching the ball. Honestly there was a time when I didn’t think it would ever be possible.
Her big little gain is that she used to not stand being “tickle rubbed”. That’s when I would very gently rub my fingertips on her legs, arm or back. The sensation drove her crazy. I’m guessing it was from her nerves being inflamed. I remember her crying & telling me that it hurt. Well…the other day she was laying across my lap & I “tickle rubbed” her leg & she LOVED it! She made me keep doing it! She couldn’t get enough of the sensation. Then she made me do it to her arms, back & tummy.
I cannot tell you how much this one little thing has meant to me. I try to not say anything to jinx us but I feel like I can see an end in sight. It might be very far off in the distance but I really do believe that she will get there! (KNOCK ON WOOD, of course!)
She’s still a bit behind her friends in things like bike riding, roller skating & riding her scooter but she’s working on them everyday. She can do them all, but not as fast or with as much precision. I secretly wonder if she’ll go off to college with her training wheels on her bike, LOL.
She just finished up her prescription of 20 grams of IVIG every 2 weeks then 20 grams every 3 weeks. She handled going 3 weeks really well & when we see the dr next week I’ll have him write the prescription for her to get infused every 3 weeks. Honestly, 2 years ago I never thought I’d see the day that she could go this long between infusions. It truly is a miracle.
Ever since getting her away from the mold in our old apartment she has gotten so much better. I’m just glad to be done with that place.
I hope everyone is doing well & enjoying the summer. If you happen to be outside at night & you see a falling star…make a wish on it & it just might come true.
June 21, 2008 at 8:16 pm
Oh Kelly this is awesome news! Little gains are HUGE gains for us 🙂
Give her a big hug from me, And one for you too. It is so great to hear of the good things and the great strides.
AnonymousJune 24, 2008 at 12:56 pm
That is wonderful news. Please tell her Dell and I say hello. Dell has a little fever. I think it’s a virus and not disease. We are supposed to redo some bloodwork. The dr. thinks there could be some interleukin involment in his fevers.
I need to call you but have not taken the time to do it.
June 24, 2008 at 2:42 pm
You know how I feel!!!!! how come you did not tell me about that this morning!
AnonymousJune 24, 2008 at 5:12 pm
Thanks everyone. It really is amazing to see how far she’s come. I keep thinking back to the morning she woke up & couldn’t even lift the spoon to her mouth to eat her yogurt. Then the days that followed thinking that she had something that was not curable, let alone treatable. It’s truly a miracle that we are here.
Emily saw her neurologist today. He seems to think that she is 100 % healed & in remission.
Yep, you all read that right. Remission.
We’re still going to give her IVIG every 3 weeks until August then we’ll stretch her to every 4 weeks. I’ve been talking to people who have diseases that go into remission & they all say that once you get there it’s great but you gotta figure out how to stay there. SO, Emily will NOT be stopping IVIG. We’re just going to space her treatments further apart at a faster pace than what we’ve been doing.
I’m going to have the Dr order an MRI of her spine in August. The last MRI she had showed that the only inflammation left was on her spine from the lower lumbar on down.
Remission. What a word.
Dawn – I forgot. I was just in shock over the dog, I guess.
Lori – I’ve been thinking about calling to check on you all. I think I might have misplaced your phone number.
Kelly (off to watch the “Arm Of Steel” play T-ball)
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