Tuesday, May 12, 2015

Going Ons

Whew, I'm overdue!As all of you are, we've been busy with life.

The boys started little league with Jason being the coach. They've had a few practices, got their uniforms and did photos. They start their first game this weekend, so that should be out-of-this-world cute. They use a pitching machine which isn't always accurate, so the games should be interesting. This is the league where kids start learning how to field... so again, this should be interesting!

The work around our house has been ongoing. We've had rain lately, so that's been pushing back our plans to stump-grind the front yard in order to move forward with fixing the yard and seeding.
Our cedar siding replacement and painting for a portion of the house is complete (only one more part of the house to go next year and we should be good for another 20 years). Our garage door was replaced today and those are one of those things that make you realize it was OVERDUE, so I'm extremely glad we did that.
Our attic insulation is finally complete and it looks amazing - let's see some great heating and cooling bills now! But we still need to get the ceiling in our master bath and tiled shower fixed, but that's happening soon, so that whole debacle will be behind us soon, but not soon enough!
Jay and I agreed to no more home-updates this year, except possibly replacing the front door this fall - we shall see!
We'll focus more on INSIDE updates next year... I can't wait!

Jay and I have worked a bit in our mulch beds last weekend and put some lighting up in the back. With having landscapers last year and this year, we get to do more 'pretty' things instead of necessary things. I usually wait until Memorial Day weekend to do annual flowers because we get so many chilly storms in May!

We celebrated Mother's Day and Jay's birthday this past weekend. It was really nice and we have left-over ice cream cake for the next week, so that makes Brady and I pretty happy. Too bad I didn't live by Sidney... we LOVE our cake :)

The boys have been well. We've noticed that a later bedtime for the boys doesn't work. At all. Sometimes we get flack for the boy's early bedtime (around 7:30pm) but Jax seriously can not handle going to bed much later. He runs hard all day and he needs to recharge for 11-12 hrs with sleep for his immune system. He can't focus or pay attention and both boys get moody and emotional. They got into a fight this weekend which was a first in a long time and there were multiple time-outs given for the emotional outbursts. I was considering moving their bedtime back to 8pm this summer, but I'm not going to since they still have to be up for summer school. It's interesting how sleep really affects them...

I plan to start Jax back up on his 'feeding medication' (Cyproheptadine). I had started him up on it after his last Feeding Team followup in January, but then he got the flu, then he got that GI virus that led to the horrible medical crisis. Then he got the flu again, then we were gone, and now he's had baseball each Saturday morning - which we have to time the first few days of the medicine around events he can't be sleepy for.  This medicine has antihistamine affects and makes him sleepy for the first 48 hrs of use and then he acclimates, so I need to start it on a Saturday night. We've GOT to get his hunger stimulated and to get him eating more. I've noticed he's lagging again with gaining and looking a little gaunt. He has his next Feeding Team followup next month and they're going to wonder why he hasn't been on this med!

I'm starting to get frustrated and defeated by his eating again lately. I think his recent medical issues have scared the beJESUS out of me so much that I slightly freak out on him if he's not eating. He will sit and daydream and not touch one bit of food if you don't sit next to him and drill sergeant him. 

There's a fine line between his feeding disorder and his behavior and it is so exhausting and completely fear based. I'm not sure what to do anymore. He has a feeding tube, feeding therapy, a dietician, feeding team and special weight gaining formula with hGH injections...
So... we're hitting this med hard now and holding onto some hope, because I just don't know what else to do. The thought of him getting dehydrated this summer freaks me out - blahhh, someone wave a wand and make this kid like cake!
He's also ground down his teeth... yes, you read right, his teeth are almost gone! His top front teeth are basically small slivers and I think he's going to expose his nerve soon. He has a dentist appointment in two weeks where I will be discussing what we can do to protect his adult teeth coming in. I have no idea what is up with this kid sometimes!



Jay at his birthday dinner with Dennis. Being weird.

The boys and I at brunch on Mother's Day. Being weird. Notice Jax's teeth :(

Too cute.

Some of the new siding last week. I need to take pictures of it all painted with the new door.

The arcade after brunch!

Our little monkey.

The moms.

Jay celebrating his birthday.

CAKE

This is funny. Or not. Jay had what he thought was a burn on his hand from Costa Rica last month. I noticed more spots the other night and was like, "um.." He said it was fine. So I publicly shamed him on Face Book. He went to the doctor and has cream for a possible bacterial infection. If not getting better by this weekend he'll get it scraped and tested for more invasive treatment, but the current cream will most likely heal it up. Just a random infection from traveling - huh!

Saturday was a donut and coffee kind of morning... or hot chocolate...

Baseball practice after... practice. Apparently they can't get enough.

Brady was the 'Apple of the Eye' at school last week. His poster was cool!

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