Jerry rigging and fun

So, Maddox is Not sleeping through the night. The alarm on his pump wakes him up now. sigh. He is still too scared to sleep alone, so Craig and I are taking turns sleeping on an air mattress in his room. double sigh. When Maddox is awake in the middle of the night, he is often turning his lantern on, looking in a little mirror and combing his hair, or rearranging the stuff he's sleeping with. triple sigh. He'll also shine his lantern on the air mattress to make sure someone is sleeping there.

Hopefully this will get better soon.

I did notice his thighs were looking a wee bit chubby tonight. And the scale read 29.0 tonight. Yay! And he ate some steak and pork chops tonight. Which is significant because he has avoided hard to chew foods since he got the feeding tube. He still hasn't eaten close to 300 calories in the last couple days though. I am hoping that will improve once he on the feeding tube for 15 hours rather than 24.



















Climbing trees at Hartley. I love the Hartley Nature Center, as do the boys.

We went to Lester Park yesterday and had a blast. Maddox does not let the feeding tube slow him down.






This taping job was done by the nurse. I'm thinking I may not suck as much as I thought with the taping.





Oh man, i do love these two!







This warm weather has been incredible. It's a little hard for Maddox because he gets sweaty under his pack and itches. But we are enjoying the sun!





Mason picking apples in the tree at the park.











Maddox getting his cool on.





With all this weather, we had to find a way for Maddox to get wet.





Mason helped me figure out how to rig up Maddox's pack. We wrapped up his feeding pump in a large baggie and taped it all up. Then we wrapped his pack in a walmart bag (classy I know) and wrapped his connectors in a snack baggie and taped the crud out of it. And it worked! And Maddox, bless his heart, didn't care. He was too excited to run in the sprinkler. Tomorrow I may try the beach.





Look at that fashionable waterproof pack. Maybe I could market this? haha











He had to wear his fireman mask. Gotta love this boy.

















Making a mud puddle.




Muddy Buddies

All of Maddox's equipment stayed clean and dry. It may not be pretty, but it's functional.

Awwwwww, Maddox fell asleep in his room tonight without anyone in there and he needed his lantern on. He has 2 night lights and a lamp in the hallway on as well. I suppose the dark seems a lot scarier when you have a tube coming out of your nose and you're hooked up to a small machine.

Mason is also demonstrating a little anxiety. Which is unusual for him.I think part of it is the age and part of it is related to Maddox's feeding tube. Thankfully he talks about anything he is worried about.

Other than a little anxiety, the boys are doing great and we are enjoying the gorgeous weather. We'll see if we hit the beach tomorrow. There is also a lot of family events going on, but I think the stomach flu is going around, so I don't know if I want to have Maddox hanging around a lot of people.