Post 100 Days

Our appointment this week was very good.  We were really getting antsy about what Mireya's body has been doing since our last appointment.  We were happy to find her counts are holding relatively well.  We're continuing to wean her immunosuppression meds with little incident.  Her magnesium levels were low, but as we wean her off the tac, we've had to lower her dosage of oral and iv magnesium because her mag levels are increasing (as expected).  Mireya's been experiencing some issues with skin irritation around her line, but she's been really good about telling me when her dressing is shot, so I've been having to change it more frequently.  Due to a shortage of pentamadine, Reya will start taking an oral medication Bactrim to prevent a strain of pneumonia called PCP, which commonly affects immunosuppressed patients. 

Attending school was another point of discussion. Mireya will continue with Homebound instruction until the Spring.  Originally we talked about the possibility of her physically going to school in January or February.  After a lengthy conversation with her Medical Team, we all are on the same page and decided while it 'might' be okay for her to go back sooner, it's not worth risking her getting sick and her treatment being sidelined.  According to the Docs, this cold and flu season is showing itself early and not only out of control, but with resistance. 

I attended a Parent Forum through ASK about a week ago and learned about an awesome organization called Hopecam. Hopecam is working with Mireya's school to install software and a webcam in her class so she can be a part of the classroom experience.  It will be great for her to participate in lessons as well as see and interact with her classmates.  We're looking forward to being able to exist within the class through Hopecam!

We're back in clinic just after the New Year!  Having our appointments stretched out is a good thing, but it's hard for us to go these longer stretches because we don't know what Mireya's body is doing. Sounds a lot like doubt, which is the opposite of faith...it's not, just a reminder that during these 'stretches' earlier this year, Mireya's graft starting failing. God is a healer and we are totally relying on him and counting down the days to total and complete victory.   Continue to keep us lifted and pray over/for Mireya's body.  All things are working together for the good!   

Higher Higher

Over the last few weeks, Reya has been putting out the best counts we've seen in over a year!  We're still remaining very watchful over delicate skin issues, but overall Mireya is tracking well. She had her first pentamadine treatment since the summer today.  She was not thrilled, but she managed to get through it quickly.  It was a long and tedious day in clinic, but we're thrilled to have such a positive response happening.  Chimerism testing shows a slight decrease in Mireya's cells count, which is very favorable.  We trust that everything we've been standing on to for over 18 months will continue to come to pass.  Healing and victory over Aplastic Anemia!

I can't believe the first nine weeks of school is almost over.  Jalen is making it happen and we're so happy about Mireya's Homebound instruction.  It's really wonderful for her to have this time daily to focus on learning.  Some days she's for it, other days she's less cooperative, but she is doing extremely well.  

Isolation continues to be a struggle. The children don't always understand why certain things are not an option for us right now, but we do our best to keep them engaged and keep it moving.  Isolation won't last forever (even if it feels like it) and brighter days without restrictions are definitely in our future.  Can hardly wait......thank you for continuing to pray for and with us.