Getting Ready For Another Hospital Stay

First I want to apologize to all my family and friends for not updating sooner. My days are filled with getting Alec up on his feet and caring for Sean who is peaking a year old already, YIKES! In any case all good news, Alec's feeding tube was pulled last week. He is eating really well, although it could still be a decadrone effect, but we'll take it. We are off chemo for now. Biopsy on the brain is a definite negative for metastases. We are not sure about the c-spine though because once again we can't biopsy it. He will have a Ctscan in about 2 weeks and an MRI in about 2 months, we will be watching very closely.
He was put back on decadrone; a steroid not, not the kind you are thinking of that athletes abuse this type has the opposite effect and tears down the muscle walls and depletes vitamins and minerals. Sounds really bad I know but when we were weaning him off this he experienced really bad headaches and was crying. The wean was to fast and he still had meningitis, not bacterial so please don't get nervous. He still has some inflammation and water in the brain and just needs a little more time. In another week we are going to start to wean him again but at a much slower rate. He complained of a headache today on and off, but hey we all get headaches right. He appeared comfortable though.
His current meds are as follows:
Acyclovir 3x a day (prophylactic from transplant)
Bactrim Mon-Wed-Fri 2x a day (prophylactic for pneumonia)
Reglan 2x a day (helps move his digestion faster and helps with his vomiting)
Deacadron 2x a day (the evil steroid)
Holistic meds
Thymus spray 2x a day supports thymus gland which might have been damaged from radiation.
Selenium 1x day, helps inflammation
Ashwaganda 1x a day promotes stem cell production and brain repair, neurologically
Bosweilien 1x a day, for inflammation
NOW multivitamin 2x a day this is given 2 times a day because of his decadrone, sometimes altered though is he has a can of Nutren Jr.
Monavie (acaiberry)antioxident, immune support
Goji, immune support and known for it's happy berry effect
CodLiver Oil, in a yummy berry flavor he really likes this one
Mushroom extracts from 18 different types, ya 18 who knew there has been studies in which tumors have shrunk from using this method alone!
PaleoMeal, extra protein to replace what the decadrone is doing
GreensFirst, has grass, dandelion, anything you find growing out of the ground is in it.
Flavin7, berry extracts from Hungary
Flaxseed Oil
We are being admitted into St. Charles on Monday at there rehabilitation center. Alec can't walk at all, or even balance as he was able to do before. His neck muscles are still really weak from his craniotomy. He has a hard time reaching for things or even holding onto things he shakes a jerks his hands alot. He still wants to do everything himeself though, go him. He knows he needs help and he is fine with it, but wants that feeling of accomplishment. We will be at St. Charles for about 2 weeks. He will be getting intense physical therapy as well as occupational and speech.
He seems to be okay with going into the hospital, just concerned about getting his bologna we get at Wholly Natural, the local holistic store in East Moriches I shop at for him. I do get to Trader Joe's also, but for a quick pick up it's nice and close. Tonight when I was tucking him in he said, "make sure you bring enough food for the hospital". He has accepted his diet and doesn't mind it.
As for the butterflies, OH MY GOSH, I still don't have a total but tomorrow I will post a picture of Alec with all his butterflies. There has to be close to 2,000 of them though. Aquebogue Elem, our cousins friends and family. North Fork Bank, well Capital One now :0) it is amazing how many people showed there support. Thank you.
Well I need to go fold some laundry, what else is new.
Bye for now,
Amy