Changing It Up

Just to keep me on my toes, Kean has gone from Olympic power eating to eating like a bird.

The docs had warned me this would likely happen. But how strange to now worry about whether he

is getting enough to eat after the gorge-fest we've gone through.

His therapist, Maureen (Momma Gump) was here this morning and we agreed the steroid swelling

in his face has gone down a bit.

 We also had a session with his brand new Physical Therapist, Katie (who I clearly failed to get a picture of).

I think we will really like Katie-- she got him to put a lot of weight back on those spindly legs.  But her coming is bittersweet for us-- it means we officially say goodbye to Pat, his PT who has been with him for the past two years.  Pat is part of our family and it will be hard (probably harder for me)

 to not see her or have her calming spirit in my home each week. 

Tomorrow we go back early, early to the hospital for Kean's weekly Spinal Tap.  The protocol he is on this month

calls for a weekly Spinal to put the Chemo drug- Methotrexate directly into his spine and brain.  This is the drug

Down syndrome kids don't assimilate, so Kean has to take another drug at precisely 48 and 60 hours after the Spinal.

So far, he seems to be tolerating it all.

He also gets another dose of Vinchristine-- this time through his brand spanking new port.

I have to put a numbing cream over his chest where the port is (under the skin) about an hour before we leave

for the hospital.  Once there, they will (thank heavens, not me) put a needle into his chest, right into the port to take some blood samples and later give him the Vinchristine.

I'll let you know how it goes.

Oh, one final note... we picked blackberries today.

They are winding down-- but the girls have made nearly $800 dollars this summer on the project.

Remember, half will go towards taking Keanut to Disneyland or somewhere fun when this Cancer business is all over

 and the other half will go

towards children's Cancer research.

This is what I made with the leftover berries....

Yes, Kean may have a problem with eating right now... but the rest of us will be making up for him.