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| OUR STRONG KIDDO! Thanks Ashlynn for his very own Boggy M&M! |
A quick update to get all of you up to speed on the Purple Playas’ most valuable “playa”: Parker! We are so incredibly fortunate to have a team of doctors, nurses, and medical office staff that powers on right along-side of us! Through our appeals and persistence, Parker’s study drug, rilonacept, was approved through April. The office manager said she thinks he is the first kid in Florida to get this approved. Maybe now other insurance companies will jump on board and get this for the many others who also need it! Truly the miracle we were hoping for! We were so concerned about going backwards but now we can continue to move forward!
Another great piece of news is that this Friday will be his last overnight stay at the hospital for his IVIG infusion. No he is not discontinuing it but rather he will be getting it at home weekly and a little bit differently (not through his port or IV). The version he is getting is called Heizentra. If I am understanding it all correctly, this is why: by getting it weekly in a more concentrated but slower absorbing manner he will have less side effects and hopefully also better results. This is because there will be a more constant level in his system. There will be 3 probes (little needles) placed in his stomach and hooked to a small pump. It will run for 1.5 hours each week and he can do other things while it is pumping in (tele-class, TV, Xbox…). It also means less hospital stays, road trips to the hospital, and hopefully no more blasting headaches from the med. He will also learn how to do it himself. If we can get his levels up, he will also be able to be out and about without so much worry that he could easily catch something and land in the hospital. Way huge! We are very excited about this, especially knowing now that he is likely to be on this for life. This will give him some normalcy back and empower him. And we will all get to sleep in our own beds more often J!
We appreciate everyone who has rallied around us and supported us during all of this uncertainty. We are incredibly thankful for your prayers, thoughts, and positive energy. We know that Parker is an incredible and valuable “playa” and we are so happy you all are part of the Purple Playas Team!
I am so happy that you were able to get this approved! Yes, truly a miracle!!! :) I hope that the new way of IViG works well for Parker. That sounds a little.... hmmm. I hope it is the perfect solution!
ReplyDeleteAnd thank you for thinking of us with the article link on IViG for Lupus, SCL & JDM!!! I still haven't had a chance to read it all, but so far it's pretty interesting. Thank you!