Playing around.

Just playing around with the blog trying to figure out hoe things work. I eeny meeny family picture will probably change again and again. the funny hting is no one is reading this blog because I still don't know what my address is!

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Saturday

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Henry has been pretty ornery in the middle of the night and today. He is sick of blood pressures, blood work, the pulse ox finger thing and any nurse or doctor or tech that comes in that isn't mommy or daddy.  I just want to express how greatful I am right now for the kind man who came in to do an x ray.  There has been a concern that Henry is constipated. With his meds slowing things down and the possibility of infection from a hard bowel movement causing micro tears in his bowel they have been telling g us he needs stool softener and we keep telling them that he really doesn't have much to poop. He hasn't eaten much since before we came and less after. The nurse told us the doctor ordered an x ray to see how much is in there, at least that is what I assumed because they didn't mention the order.  This man who did the x ray was so kind and gentle. Henry yelled and didn't want him to touch him or move him. The tech guided me how to position Henry and also made sure ...
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Seeing a bit of Light

When we were in the hospital in September the doctor said that we would see Henry improve once he started the chemo.  It seems counter intuitive because chemo meds are basically poison.  The first week after chemo he stopped having fevers as much and we were able to manage his pain until he didn't need much for pain medicine. The second week he has lost more weight and been in pain again and of course he had some serious hunger and anger from the steroid.  This week I feel like we are seeing our little boy again.  Mostly his personality. On Sunday he was happy and cheery. He got a tiny pumpkin from my mom and wanted to carve it and then went on a 4 day stretch of "have to carve pumpkins" fever. I don't know if it is still part of being bored or even some residual steroid fervor but he was adamant and we even went to the pumpkin patch and got more for everyone 😆.  Jeremy was making a second dinner because Henry wanted two different things and he sent our other s...
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Hangry Is a Real Thing

So the dose of steroid (dexamethozone) that Henry is on is higher/stronger than what he has been on in the past.  When he isn't sleeping and nauseous he is hungry.  At 5 am the first day home he woke up to go potty and wanted to eat.  He wakes up and asks for food and then when we don't have what he wants or my husband tries to hold him off and get him to go back to sleep. At the same time the next morning I got up with him. He ate most of a Nathan's hot dog (the kind they have at Sam's Club but regular bun length)  he ate that while he was waiting for his Totino's pizza to bake that he was crying for before we came downstairs.  He ate the cheese and meat off of half of the pizza and then was still hungry so he ate a bowl of cereal. After that he got full enough to go back to sleep. Sunday morning he woke up at 4 crying that he wanted sausages and he wanted his daddy to go down and check the freezer and fridge for some so he could have them. Jeremy knew we didn'...
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