In three weeks we take our trip to the mountains. Although I am excited for our time there it means when we return we have a short time before school begins. Rachel will start her senior year of nursing school... senior
year... how did that happen so quickly? And Hannah starts high
school. Every year is an adventure every year seems to be filled with
challenges and accomplishments.
Yet I am not sure I am just ready yet for the hustle and bustle of
school.
Hannah was started on Humira in April and it has not been fun. It
causes much frustration and tears on both our parts. So the
rhuematologist is switching her to Orencia infusions. Humira
is a TNF blocker meaning it blocks the effects of tumor necrosis
factor. Orencia on the other hand does not block inflammatory
proteins like TNF. Orencia attaches to the surface of inflammatory
cells and blocks communication between these cells. By blocking this communication, Orencia lessens inflammation. More science than you
wanted right?
Orencia is one of the meds Cody did very well with for a long time.
Fingers crossed Hannah will do so as well. I so wish for the results of
Codys exome sequencing to be done so that we might have some
direction for him as well as everyone else.
So what do infusions mean. Well instead of a sub-q injection she will
have an IV placed, labs drawn and pre meds and meds through the IV.
In all it takes about an hour and a half for Orencia. We will have to
travel to Hershey for the first four sessions and after that a home health
nurse can come out and the meds can be given here at the house.
For now this is the only big medicine change. Lucas will have an x-ray
to discern whether any joint damage has occurred in his hip, so for now
we are staying the course with Enbrel.
It is a constant battle to not give in to fear, frustration and plain
just keeping my head above water. I am so thankful that I do not walk
this path alone. I am also thankful for the small day to day victories
that make life joyful.
