Super hero face
One of the many uses of paper medical tape : escape button, speaker, laser button
ahhhh, one of my best friends. One because it tastes so good, and two because it blasts through any clogs that are in Maddox's tube.
What our kitchen counter looks like. I just put some pictures of boring stuff on here for myself (well, I suppose that is what blogs are mainly about anyway), so I don't forget some of this stuff when I finally get to Maddox's scrapbook about 10 years from now.
A whole lot of formula to be mixed up. And it stinks.
Bottles filled and ready for the night.
The syringes we use to flush out his tube and to make sure the tube is in his stomach.
Fall Fest at a facility near our home. We were pretty much the only ones there and it was gorgeous outside!
I love these two!
He had fun watching Mason do archery. Look at his poor skin though :(
Corn Crib!
Soccer.
Little farm boy.
Hay ride. Maddox:"That was the awesomest mom! The awesomest!"
They even had canoes to use on a little river thing.
It felt like we were in a jungle.
Up the Shore on Monday picking agates. This weather couldn't be better.
ummm, I have NO idea who this is. hmmmm. someone's picture somehow was loaded onto my page. that's strange.
Uncle Dom came with us.
A huge see saw made out of a huge piece of driftwood.
skipping rocks.
Uncle Dom giving pointers on how to skip rocks
Ha! I made us cross highway 61 and crawl over a guard rail and climb down a super steep incline, when there was this nice tunnel with stairs we could have taken.
Things are going better since my last post. We now change the food every 6 hours instead of 4 and we don't have to unhook Maddox. We just dump it in. You have no idea how much better that is for everyone. Maddox just gets up 3-4 times to pee at night, but usually goes right back to bed. We are still taking turns sleeping in his room. If we aren't in there, he wakes up weeping and frantic and scared because he is alone. I keep reminding him that we will not be in there once the tube is out.
Maddox is also hooked up for 15 hours instead of 24. We are at our goal rate now. It's a lot of fluid to have pumped into his body at night though, so that's why he's up so often to pee. And he's too afraid to pee by himself while hooked up.
Last night I turned his pump off because he was complaining of a tummy ache, I layed down and fell asleep, until 7:00 this morning! In my clothes and everything. Maddox also slept through the night. Oh it was glorious. However, i was freaked out because he did not receive any of his food all night. And wouldn't you know it he wasn't hungry this morning. And was grumpy and tired. I took the boys to Hawks Ridge to see the migration and hike. He could have cared less about any birds and was too tired to hike on the trail. Those calories make such a difference!
On Tuesday we went to Moose Lake State Park and he was able to hike quite a bit, so I know it's the food that is the issue (or lack of food I should say).
We may be able to tweak his feedings too. I talked with the GI doc's nurse today and she said because he has gained so much weight already, we may be able to start decreasing the amount of food he receives through is tube, since it is obvious that he can gain weight with the right amount of calories. my fear is that he will not eat. The other obstacle are his feeding aversions. The tube has increased these aversions a lot, and he won't eat many foods he ate before the feeding tube. The nurse said that he may not really start eating well until the tube is removed because of the aversions. ugh Poor guy. I think he is also feeding off my anxiety over the eating too. I really need to chill out inside and not think about the eating and calories and such. It's so hard though. If he can't grow and gain weight on his own, he will probably need a g tube. A tube that goes directly into his stomach. I do not want that to happen. I really don't.
But overall, I am doing much better. Sleep makes all the difference.
We are in full swing over here with school. The weather has been gorgeous and it has been so hard to stay focused and not just leave for the whole day, but we are doing what needs to be done. This curriculum is pretty hard core and it's third grade, so it's a lot more everything. Mason loves it though and loves the challenge. I have so many different schedules to synthesize, that I really need to be on top of things. Once we are used to this curriculum I think it will be easier than than the other curriculums I have used. I really like it and feel he's getting a lot out of it already and I can tailor it a bit to his level. Which is nice. And it just feels so right when we are doing school. I can't explain it, but it's a great feeling to feel deep down inside that we are doing the right thing for our family at this moment in time (I am not saying that this is right for everyone, or that it will be right for us forever, or implying that public school is bad).
Time to go whip up some formula. Hope everyone is enjoying this incredible weather!
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