Phoebe Has Clear Eyes!

Phoebe's eye appointment was at 8 am.  I have learned this is the best time for her to get her eyes checked because that way she is not getting tired and ready for a nap.  Also, it means you get seen promptly and don't get stuck in the back up of other patients.  

Dr. C said Phoebe had clear eyes for the first time--- no inflammation or cells.  YAY!  Today is my birthday, so that was basically the greatest present that I could have asked for.  

Dr. C also had a new gadget that she had bought specifically because of Phoebe.  Well, she can use it on others too (and already has made use of it), but I guess it was after getting Phoebe as a patient, she decided she needed it.  It is a device that can read the pressure of the eye without touching it.  You just have to put it directly in front of the eye.... thisclose away from touching it.... but much less traumatic.  Also, you do not needed any stinging, numbing drops before hand.  Phoebe's pressures were 16 and 17, can't quite remember which eye was which, but those are both ok numbers.

Oh hey, look, here is a picture of the nifty new gadget.  The part with the green circle around it goes right up to your eye.  It turns red or green if it is reading correctly. Cool technology, right?!

We are discussing going off eye drops.  Is it weird that that now sounds traumatic to me.... Like, I should just be happy, but it's like we have eye-drop ptsd or something.  How can we not give Phoebe eye drops after all this time?!  Anyway, I have emailed Dr. N to see if he agrees that we can discontinue eyedrops sooner than his slow, methodical steroid reduction plan.  

Part of me is never going to be completely happy that Phoebe never got her eyes checked before starting Remicade.  Especially with this good news.  I know the doctors were basically in agreement that mtx alone would not be enough for her, but I just worry about the years down the road.  Does that make sense?  Hopefully Remicade is our "miracle drug" and continues to work for her.  But eventually it can stop working.  Or months/years into treatment, your body can suddenly decide to have an allergic reaction.  So when a medication fails, you have to move onto another one.  What will be her miracle drug when she's 10?  When she turns 18?  It's just such a long way to go.  

People have been posting pictures of their JIA children going to prom. Or stories of their teens giving themselves their own injections.  Is Phoebe going to be one of those warriors?

Speaking of injections, Phoebe took her shot tonight like a total badass champion.  Go Super Mouse!

We debated not doing it tonight, since it is my birthday after all, and also, her next dose will be next Friday, the 18th, when she has her second Remicade infusion.   But I also decided that my birthday celebration with cake after dinner would also be a great distraction, so we just went ahead and did it.  Jason prepped it and then I told Phoebe it was time for the shot.  She said no and whimpered about it.  She sat in my lap and opened her bandaid.  She wiped her leg and then I did.  She continued to whimper and fuss a bit as she did those things and then Jason came with the shot.  I held her hand and helped her turn on the buzzy bee and then Jason did the shot, BOOM, done.  I love that it was not drawn out.  Phoebe cried so little this time, like, she barely cried except for the moment of the injection. Then we watched Cookie Monster, got our hands stamped, and ate gummies.  And then we had birthday cake!  🍰

Back to thought on treatments...... Gillian and I were messaging today about Phoebe of course, and she did say this, which was really nice and best-friendy and kinda made me tear up.   

"The fact that the first things you've tried have been so effective is fantastic news, both for her condition now and because it means there are a lot more options left to try later on. It means that for her--for her childhood, when she's growing and developing so fast, her arthritis is a manageable condition that requires a lot of doctor's visits and a lot of scary drugs, but won't stop her from having a pretty normal childhood and pretty normal physical development. That is huge. It means that she's going to grow up remembering shots and doctors, but not spending her whole life in pain and struggling to move. You will remember that part, but she won't. She is so lucky to have you as a mom, taking her pain seriously and making sure she was diagnosed so quickly!"

It's true: Phoebe is already starting to get more comfortable with shots and eye drops and will only continue to do so.  It's just going to be a part of her life, even if she gets in remission.  And with all the advancements that continue to be made, the medicines that Phoebe might be on in the future might not even be invented yet. In the last 10-20 years, biologics have been game changers, what will be next?  It's what we are all donating for, to find better drugs, to find a cure!  

And so far Team Phoebe Steps has already exceeded my expectations and raised $2,980!!! Wow, I can't believe I know that many people who would help out!  Just need $20 to make it to $3,000! And we still have a week to go! :)