Week 24 Jan 17-23

It has not been the best week for Grayson. He is so sleepy. Taking 2 two hour naps all before I arrive home. He is eating a bit by 9 am (bologna, noodles, yougurt or cheese). Then he drinks the rest of the day until another hunger surge hits around 3:30 pm after he wakes from that second nap.
He hangs out on the couch and barely gets up to play. His joints must be sore (steroids will do that). Or nauseaus? To cover all bases I have lied a towel over the couch to catch any food crumbs or possible vomit (hasnt occurred yet). I have also brought out the Zofran (the anti-nausea med I havent had to administer since Christmas and before that August). I give him a dose before I leave ( along w his asthma meds, Nystatin and Dexamethasone steroid). Then another when I get home. It is one of those drugs that doesnt hurt to give even if nausea isnt the problem but better to curb that feeling just in case. It is like problem-solving/trial and error. You just cant tell, to be honest. Even though I can get him to laugh n smile when I need to, he is so blah. So drained and beat up looking in his face. Like all the energy has been drained from him by some evil alien. It is sad.
His asthma has really been a stinker this week. We are all fighting colds and he seems to still have a tiny bit left of it. His cough is off and on all day long. I have had to administer his Pro-Air more than twice a day to keep up with that cough which at times are actual asthma attacks. But at least it doesnt seem to peak until the early morning when he wakes and near bedtime so I am here to manage it.
It is all so hard to watch with so much else going on. Work is draining me more than I could ever imagined. And I haven't even begun the two types of report cards that are to be completed by next Friday. Not to mention my endless list of things to do since my return. I bring work home everyday and do not get to it before I want to cry from exhaustive headaches.
Triston is having a nice week at school. No emotional issues at school (frustration levels, stressful moments, trying to control situations) or crab ass moments here at home. He was told if he had a good week at school he and I would go on a date. I am looking forward to it. He told me he wanted to go to a restaurant and sit across from each other like other couples do". He has been super compassionate and lovey dovey with me this week. My biggest baby boy!
Grayson has also been Mr. Affectionate. He wants hugs, kisses and cuddles often. You can tell he just isn't feeling well. And when he doesnt look well we can't help but wonder if a fever is just around the corner. I am just not up for a impromptu hospitalization. Of course, I will always do what is best for my guy but we would really appreciate it if it just would not surface anytime soon. So when there is no fever you can't help but wonder...

a dip in platelets (even though his lips are nice and pink or bright red meaning they aren't dangerously low)?
low hemoglobin (and yet again-has some energy and good complexion)?
joint and bone pain? he does not like to be touched or bothered w. Scolds T for even coming near him! Physical battles to change his diaper when the past mos he has wanted them changed immediately bc it stings or is so uncomfy on that fat-free butt of his
nausea?
or just plain chemo drugs taking their toll on him this week?
or all of the above?
AGAIN, more unknowns.

But on the plus side;
he is eating (not "hide the food" steroid eating like in past steroid weeks but we will take what we can get)-this week taste buds have done a 360-rice, noodles, corn dogs-bread n butter. Blander foods.

drinking (almost 9 glasses of milk a day)

peeing

pooping

interested in tv and reacts happily to his favs and calls out to me to share in his excitement

hardly played off the couch today

laughed along w Bryley today as he played tricks on her

still inquisitive-the town nosey rosey asking me what I am doing at every turn

expressing emotions-no matter how drastic the mood swings are. I have been late to work the past two mornings bc he has tantrummed over one thing or another. Fits that make me jump in fear he is gonna hurt himself. He is so pissed off. Then the minute I get home it is waiting for him to wake and dictate what he may possibly have a taste for. I hate catering to his every need but food is that important and when he IS actually hungry you gotta jump on that wagon bc it passes so quickly, especially if nausea is the culprit. It is beyond frustrating. This evening I had 3 different noodles, rice and a corn dog all made within 20 min bc he has no patience and I can only take the screaming for so long. Wierd how I can tolerate at any amount at work but in my own home I need it to end. I am that dwindled of patience by that time of day. And this was all after I had run to Jewel in search of THE noodles he was consuming w/ out hesitation this morning and yesterday afternoon--and nowhere to be found! I cannot even recall where I got them! Some basil pesto encrusted type organic noodle. Who would have thought THOSE were the ones he'd be screaming for!

Maybe the weekend will be better. More energy. A typical train crazy kinda weekend. Hmm?