Update on Kylie from her momma:
“We met with our new complex care team at Children’s National in DC. Our new doctor and team is absolutely amazing and very helpful and kind. I’m grateful they are now apart of Kylie’s care.
We have been desperately trying to get Kylie in to retest her for rejection but have had a lot of issues with insurance. Our complex care doctor has been trying very hard to get it taken care of. As of right now Kylie is scheduled to go in next Thursday, please pray we don’t have to reschedule again (it would be the 4th time).
This is the first time since Kylie had her port placed that she has gone two months without having it accessed.
She is required to have it accessed at least once a month to prevent blood clots.
Kylie also needs high dose IVIG once a month to help give her some good antibodies to fight against infections.
Remember, even a small infection or virus can push her farther into rejection.
Because of the issues we have been having with insurance, Kylie has gone two months without her IVlG dose.
Needless to say, we desperately need the appointment next week to go as planned.
Some good news, Kylie made it to the next round in the baby of the year contest!
Thank you all so much for voting.
Please help us win this round by clicking the link below and voting. Then, please share the link. You can vote once a day for free.
We really appreciate each of you so much and couldn’t do this journey without you.
We love you all.
XOXO
Let’s continue prayers for this sweet child and family!
Lonnie
