MRI and IEP

MRI and Update

Sorry it has been a while since I have posted. Life has been crazy as usual. We are still waiting for Kylee's bone marrow to kick in. Until it does we continue to have labs done twice a week and platelets and blood transfusions. One nice thing is that Oncology has decided we can have our transfusions done in Neenah (about 30 minutes from our home) instead of Milwaukee (about 2 hours from home). This safes us a lot of time and stress. We have had a few bad weeks with Kylee but things are better. She was in a lot of pain and needed medicine every 3-4 hours. She was also throwing up a lot and having lots of seizures and increase in her blood pressure. She had a CT scan and it came back as she was having some swelling in her brain as well as several "new spots" that were not on her previous CT scan. After they reviewed her last MRI with her CT scan they think she may be having some bleeding in her brain from her high BP's and low platelets so we are having to keep a close eye on her BP's and keep her platelets high. They have scheduled her for a new MRI to see what the new spots are and if she is having some bleeding. It was scheduled for last week but of course she got sick so we are now having it on December 2nd. She has been feeling better so we are assuming the swelling the brain has gone done. So now we just wait and see.

IEP

Kylee's IEP for school is on Monday. She hasn't been to school yet this year with everything that has been going on. The first part of school we were pretty much living in Milwaukee so it wasn't possible. Now that we are not able to go any further in treatment we are home more but now I am worried about cold and flu season and with her bone morrow not working she is more at risk for getting sick. So I am so undecided but she really needs therapy so I am going to have to ask about home bound services or see if we can do outpatient therapy if we don't send her back to school yet.

Thank you everyone for all your prayers and support. We could never thank everyone enough.