It's been a while...

I haven't updated here in a LONG time, but I thought that now would be the best time to do it with all of the recent changes we have had!


We got the call on June 23rd that there was a kidney available for Eryn!  We quickly got packed and drove to the hospital in Orlando (about an hour and fifteen minute drive from our house).  We spent the night in the pre-op department while they ran tests to make sure that everything was good.  


On June 24th, Eryn went into surgery for the kidney transplant.  She was in surgery for about 3 hours and all went well.  We saw her a few hours later in the PICU (Pediatric Intensive Care Unit).  She looked good and was doing well.


Unfortunately, on June 25th, we got the news that the disease (FSGS) had returned in the newly transplanted kidney.  They immediately got her scheduled to start a regimen of plasmapheresis.  Her levels have become better while getting this treatment, but the disease has not gone into remission.  We will be doing plasmapheresis treatments on an outpatient basis at the hospital once she is discharged.  It will most likely continue to be every other day, but we will have all of that figured out once we are ready to leave.


The day we received the call I had gone into our school district office to place Eryn's paperwork for her to enter the BVIP (Brevard Virtual Instruction Program) through FLVS (Florida Virtual School).  Eryn had received her report card and was promoted to 4th grade.  If I had pulled her out to be "homeschooled" without the virtual program, there was a very good chance that she would lose her status with the school.  Thomas and I had agreed that putting her into the virtual school would be in her best interest.  Luckily, I submitted that paperwork that day!!


She is already enrolled and I have to be in contact with an advisor (they called on Friday on my home phone).  Hopefully, I will be able to get in contact with them this week so that we can figure out exactly what our next steps are.  We will have to have another IEP meeting in the beginning of the year to make accommodations for her learning.  But overall, we think that this is in her best interest and I know she will continue to learn through the online environment.


The best part is that our district uses the K12 curriculum as well!  So there shouldn't be much change for her other than a new shipment of books.  I have noticed that she definitely needs to be on the 3rd grade level for reading and history and can probably move up to the 4th grade level for math and science. She will also get art and music through the district, which she is not getting right now.  She will continue with the Elementary Spanish I through the school year...


Lots of things are changing, but everything is changing for the better!!


I hope everyone has a Happy and Safe 4th of July!!  I can't wait to update more as we get out of the hospital and settled in our new life!!