July festivities

this is how Caleb shows off his muscles

all the better to hear with (they are hockey balls)

waiting for fireworks

lovely sunset

waiting for the parade

Heidi is shorter, but not by that much, she must have been on a hill

this was Caleb's first parade

I do like the sport setting for these kinds of shots

doing a few sparklers and smoke bombs

back to parade watching

the cool way to play in the sprinkler?

Caleb pleased with his winning shot

and Luke wins

this shot cracks me up, it looks like Luke's head on Justin's body

Caleb attacking with Justin's shoe

everybody is smiling

Luke does not like taking pictures

at the fireworks

Ha, kinda goofy that these pictures get so out of order, but also kinda fitting that this last picture is in front of me while I type.  Boy, do I look tired here.  It has been a much rougher week.  I was so grateful for the break of last week, minimal leaking, things vented the way they were supposed to, we all got some sleep.  And we had healing, but then we had leaking.  Ugh, our house just stinks of stomach bile.  Just so much leaking this week, and pain, and no more patience.  I finally, after much monkeying around got farrell bags, so that Emily can constantly drain.  I am also trying some different products from recommendations from the feeding tube awareness site on facebook.  Everytime we have an overflow I am ready to give up and call the surgeon and do the big intestine surgery, then rethink and retry.  At this point, I have no idea what the next month holds.  As the GI said, "this is an issue of quality of life".  Again, hate making big medical decisions!  Other than that drama I think the rest of us are good, it was nice to have an extra day off during the week! 

June photos

at our very warm picnic for their birthday lunch

14

14

resting after some Father's Day street hockey

I spy "red, white and blue"

back to Father's day

Father's day was only a week after putting the dog down and the day after our big car broke, plus the radiator busted on his work car, so Justin didn't feel much like celebrating

at the butterfly farm (it's inside a greenhouse and I didn't compensate with my camera, oops)

we have several options for places to hang out while we party, a big praise!

Well, it's the end of June and half of 2017 is done!  In some ways the month flew by (the kids have already been off for a month), and in some ways it went really slowly.  We had a rougher month, so I am hoping July brings some rest and relaxation.  First we had to put Denali down, then the following Saturday our car (remember, also a Denali) suddenly lost all transmission fluids.  We had the transmission rebuilt a few years ago, so this was an unexpected and costly repair.  We have reached the point that we are thinking about replacing the car due to age, mileage, and multiple issues that we don't want to put money into (we just had the dash rebuilt last month).  We didn't really have a choice but to have it fixed, so a week later we got it back, and we will see how long we keep it around. 

And in between all of that we had Emily's button changed to what I was hoping was the final fix to all her gj tube drama.  It is a smaller button without the cumbersome extension tube and is the same depth size that we used for the last 9 years (because she has not fat it is very hard to get a size that is small enough for her body).  Well, go figure we have had leaking galore.  I can change the dressing as soon as it's wet, and keep the thing tight so ideally it shouldn't leak, but the issue lies in the stomach juices that don't want to come out the right way.  Because there is limited space for stomach contents to go (and now there is also a tube in that limited space) the juices like to come pouring out the sides of the gj tube hole (path of least resistance).  And those are some pretty acidic juices so they are causing damage to the surrounding skin.  I was afraid the neighbors might call the police a few times after hearing Emily scream while I tried to clean up the leaking.  Praise God this last week has been much better.  I changed how I was "dressing" the area and really by the grace of God the stomach fluids have been venting as they should be, out the tube rather than around it, and the skin has had some time to heal.  We saw the GI yesterday and his suggestion is to go back to the NJ, which is a tube thru the nose all the way down to the intestines (or do the big surgery and move the intestine).  At the moment that is a last resort option that we don't plan to utilize unless we are in a really bad belly situation.  The whole thing is very touch and go, since it really only takes one time of the juices touching the surrounding skin to undo all the healing that has been accomplished. 

Luke, Anna and Heidi were in Kentucky this week, so that gives some financial breaks, and just slightly less drama for a few days.  Emily, Caleb and I laid low for the most part, aside from one trip to the city for testing.  Emily is very sensitive to how we spend our time together, which I can understand in a big family.  She is not interested in going out and about, and was really upset about having to do some doctor things.  She would rather play games and dolls with me the entire day.

Oh, and we had our big birthday bash a week earlier this year.  We are not living as near the fireworks so we scheduled a time when Justin's parents could be here instead.  We had beautiful weather and it was fun to have the first gathering since we have moved in!  And this time we might have the energy to actually go to the parade on the 4th (not to mention we could walk there)!  Well, we are off to enjoy a long awaited (and much deserved?) date night!  Hello July!