Monday, June 18, 2012


Not too much has been going on with Kendall.  I just got her an appointment today with the sleep clinic at Riley.  I'm hoping this will help us help her sleep through the night.  The first opening was the end of September, unless we could make it on Wednesday for a time that just opened up.  Well, I have to work Tuesday night so Matt will be the one taking her on Wednesday morning.  I hate that I will miss it.  As you may be able to tell from all of my posts, I'm the ultimate control freak with her health care.  I do realize that I would be worthless anyways without sleeping after work.

Kendall's MRI is coming up on Thursday.  It will be an all day event since she is having her complete spine, abdomen, and pelvis scanned.  It is usually a 4-5 hour scan along with the pre-procedure work and the recovery room.  All together I would guess we will be there for at least 7-8 hours.  She is also going to have another HVA/VMA test done.  This looks for the neuroblastoma.  The last two were elevated, which caused the doctors to think her cancer was back.  I'm really hoping this one is down so that they lay off of the cancer word for awhile.

Kendall is really working hard in physical therapy.  We have discovered it is best for her if I leave the room while she is working.  She seems to whine even more with me around.  I feel like it is time to start pushing her so that she can gain the confidence to start moving around on her own.  Hopefully she will get used to it after a few months and won't whine through the entire hour.  

Thanks everyone for the prayers for Thursday.  We don't worry too much anymore about scan days.  We are so used to hearing that the tumors are growing, we don't even expect to hear the word "stable" either.  It would just be nice to have little growth and no + urine so that we can go longer than 60 days between scans.  

Also, please pray for her kidneys.  I sense another kidney infection is on the horizon.  I'm putting off collecting her urine because I'm hoping it goes away.  Like that will really happen though.  I'm actually just hoping to make it until Thursday so that the urology nurses can cath her ureterostomies.  I hate doing it myself.


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