Monday, April 13, 2009

Purple Haze.... Day 152 13APR09

Joshua has looked better.

Yesterday really took its toll on him. We noticed  yesterday afternoon as the day progressed that he was looking more and more tired. Renee and I sense how Joshua is feeling, we notice things that normal parents would never see. The slight little miss-steps, the tired way he picks up his foot. Little grimaces that cross his face and disappear in the blink of an eye. The way he will murmur when we are holding him or the little shivers that will sweep his body on a warm day like ripples on a pond. I will notice one of these things and look over at Renee. Our eyes will meet across the room and I know that she saw it too. We don't make a fuss about it, we just adjust and quietly start keeping track. You become an expert on noticing these things. On watching every small thing that your child does. We never have to discuss our plan of action when we are out in public, we both know when it is time to leave or have Josh take a nap or maybe just time to scale back his activities.

His ANC today has dropped to 697 and his platelets are down to 95. He is still having stomach pains so he was prescribed Ativan to help out. It helped all right. Ten minutes after taking it Joshua was stoned. He was siting on the bed with glassy eyes watching TV with a large bag of cheeto's tucked under his arm. Periodically wiping his hand off on his shirt when it got too cheesy. Stomach ache a distant and I am sure hazy memory. Next thing you know he will be asking for a black light and a lava lamp for his room.

Renee went out in the hallway to talk with the child life specialist and she heard Joshua talking away in the room. When she opened the door and asked him who he was talking to he looked at her dumbstruck. He looked over at the bed where she normally sits, back to the door, back to the bed. He could not figure out how she got out of the room. At this point he began to giggle in one of those silly, I am wrecked out of my mind, ways. Renee swears he was humming the melody to Purple Haze under his breath.


Right now we are stuck in waiting mode. Waiting to see if we can figure out what is giving Joshua all the problems he is currently having. The fever is still there and the stomach pains have been going on for quite a while now. He may get an abdominal CT tomorrow to take a look at the lining of his intestines and stomach. Renee and I would really like to finally have some answers. He looked really bad today and is back to being the frail little man of weeks past. If he sits up he gets a really bad headache and the Ativan makes his eyes really dry and scratchy. He was resting tonight when I talked to Renee. Hopefully he will get a good nights sleep and maybe we will be closer to an answer in the morning.

Until then we wait and kiss the sky.





3 comments:

Miss Laura said...

Josh, I'm so sorry that the purple haze days are here. glad you're eating cheetos, though. Has to be esier than popcorn to digest. If they could just make popcorn without the kernels in it that would be marvelous. An experiment to Jarrod to think about - those of us who have stomach problems would eat it every day.
I hope and pray all goes well with the doctor meeting in the morning and they figure out what is causing this. A little ativan isn't a bad thing to calm your stomach, but at your age it would definitely bring on the giggles for sure. I love all the photos from Easter and can't get over how much all your cousins have grown!
Not to mention your niece in Jamie's tummy. Know we are thinking about you and love you! Laura and Frank

Nonna said...

Hey Snaggle Snuggle Monkey,

Do you have any idea how many people would pay exorbitant amounts of money to be able to "fly" with you? Just wish you didn't have the need to fly on this particular vehicle!

I am crossing everything available that the doctors are able to give all of you some answers. And that the answers are ones you want to hear.

Giggle away little Warrior, eat Cheetos by the truck load and kick that fever square in the teeth!

Tell Jamie her next holiday is April 25 (Liberation Day in Great Britian).

Tons of Love, Hugs and Kisses (and another truck load of Cheetos),

Nonna

Jamie(Sister) said...

Im sorry monkey that today wasnt such a good day for you love bug.
=( I hope you have a lot better day tomorrow. That doesnt sound very fun when you take the Ativan that makes you a little goofy. ; )But at the same time its good to see you be goofy just not when medicine is the cause. Well we are hoping that you get to go home soon love bug and hope they can give you some answers about why your tummy is hurting so much. =) We love you tons and hope to see you soon k Joshy. =) We love you mom dad and Jarrod keep up the great work and keep your heads up.=) See you soon.

LOVE JAMIE BELLA AND CHRISTIAN.