Christmas 2016

And meltdown for the toddler

Just a quick Merry Christmas from us!  It was a busy few days, but the 25th was spent quietly in our new home.  Justin is off for the next two days and the kids get back to routine next Wednesday.  We are just relaxing and enjoying time together, and cleaning up the mess.  See you in 2017!

The weather outside is frightful

We had a good snowfall this weekend and the kids were eager to play

Despite Denali's old hips he loved the snow

Emily's Christmas program

8th grade beauties with "the bulldog" (school mascot)

a small miracle to have all 5 looking and smiling (might actually come to a mailbox near you)

he moved too fast, but kinda an artsy photo

always rough housing

Anna is in the pile somewhere too

Just a quick one with some winter photos, we had a busy week with 3 concerts and lots of snow (some shopping with great Grandma too).  Only a week and half of school and 2 weeks until Christmas!!

Giving thanks

Here's a shocker, Caleb as a train engineer

Emily reused Anna's old red riding hood costume

Luke as a Whoopee cushion

The cool way to dress up for Halloween...animal pj's (Anna is a dragon and Heidi is a lion)

Caleb was watching the train down the street

Emily looks pretty good considering how icky she was feeling that day

Well, it's been over a month since I posted anything, and a lot has happened here.  I just haven't had the time or energy to write, so here goes a brief summary and a very late Thanksgiving post.

Most of you already know the details of November, so I will keep it short...Emily was vomiting more and more, and eventually didn't have enough energy to go to school.  I spent several days trying to get even the smallest amount of liquid into her, in hopes of keeping her hydrated enough to stay out of the hospital.  It became clear that we would have to take her, it was just a hard decision to make and thankfully, one that was made for us.  I strongly dislike making medical choices as it is, but trying to leave 4 other kids and figure out how to get to our downtown hospital and still have Justin work and not get stuck in the hospital for weeks on end was super stressful.  After barely keeping 8 ounces of fluids down Emily threw up and I had had enough, I gave up the fight.  I cried most of the way to the hospital, because I didn't know how long we would be going and how the hospital would handle the issue.  It's easy to re-hydrate (after just a few minutes on the iv, Emily exclaimed, "I'm pumped!"), but the larger problem was the lack of a fat pad between Emily's artery and intestine.  And doctors who still don't get it, who just don't get her condition.  We had no choice but to place a gj-tube.  We didn't want to, but there really was no other option.  Thankfully they could still use Emily's present g-tube "hole" and place 30 cm of tubing past the blocked area into her intestine.  She can get her nutrition, she can gain back energy, but the price was a lifestyle change.  Over the past 9 years Emily has had bolus feeds, every 3 hours she gets hooked up for 30 minutes and receives 9 ounces of food.  She has been able to hook and unhook herself for years.  Because the gj-tube goes into the actual intestine bolus feeds do not work.  Initially Emily had to be hooked up for 24 hours!  We have worked our way to being unhooked for school, which is much more doable.  And currently Emily has the tube instead of the button, which means she has 8 inches of tubing coming away from her body with a cumbersome 3 way port at the end.  So she really can't take care of stopping and starting herself and she is now hooked up while she sleeps.  I also have to vent her now, and allow the stomach juices to escape (otherwise she vomits that).  Bottom line, Emily gets her nutrition, no more vomiting, her weight is back up to almost normal (for her) and her energy has returned.  She has been back at school for a few weeks now and her regular teacher started last Monday, which has been a great change.  Our surgeon believes that we will be able to get back to a g-tube at some point, but I think she is wrong.  That fat pad isn't coming back, and so eventually we will have to find a permanent solution (the gj-tube is placed while doing an x-ray, so that is something you want to keep to a minimum).  We made it over that mountain and things are returning to our normal, thank God.

Usually I post this long list of things I am thankful for, and I really am thankful this season, part of me is just beat.  I am thankful for this house, and Justin's job and insurance, for good schools and kind teachers, for doctors and medicines, for family and friends eager to help us.  But what I really found myself thankful for this time, was just knowing that God is in control and working all things for our good.  Emily has had enough complications in her life, seen enough doctors, done enough tests, been poked enough times.  I was truly frustrated to be dealing with more and wondering why it's not fair.  After it was all said and done, I was just thankful that God knew what He was doing.  I still don't know why we needed this new thing, this new lifestyle for Emily, this new hurdle, but God is trustworthy.  God is working ALL things for our good, even when we don't see it, and right now, when I am tired and worn, I am so thankful I can trust God to be faithful.  He's got this, and everything else in His hands and boy does that gives me hope.  I'm not sure how people can go thru life without God, how people can live without that peace.  It ended up being a pretty quiet Thanksgiving weekend, and we slid right into December already.

So, here we are, just 19 days until Christmas and almost the end of 2016 and all is "quiet" once again!  Let's hope it stays that way for a while!

A little something besides unpacking

He likes to race everything, this is his "I win" pose

We made it to the other side, wahoo!  I think I once used that same phrase after a move several years ago.  I have equated the moving process to climbing a mountain several times (not that I have or ever will climb a mountain).  So, we made it up, over and down the mountain and are officially moved in to our new house.  Honestly, it still feels kinda surreal.  Like living in the other house was a whole other lifetime ago.  Like this is home, after only 3 weeks.  Like I cannot believe this prayer has FINALLY been answered.  And really, as God does, He has answered our prayers so well.  As we have been unpacking and finding space and spots for belongings, it is so cool to see how our things just fit right.  And the neighborhood, so sweet, we have met kind neighbors and found out last night that one of our favorite nurses from school (she has moved on to another school now) is the secretary of our "association".  Ha, and association, it's really just a little group or club for the neighborhood, but it ruffles Justin's feathers just the same.  And as you can see from the pictures we finally made it out to pick pumpkins, on a beautiful Sunday.  Once upon a time it was our favorite activity of the year, going to pick raspberries and pumpkins out west, taking lots of pictures and spending time with family.  Now it's a quick trip, and not everyone even wanted a pumpkin, boo.  At least they want to dress up still, I know those years are nearing the end!

I would say that everyone has adjusted well, except for Emily it seems.  Her vomiting issues had calmed down after the summer, but a few days after moving she threw up in class, on a library book no less, and she hasn't been the same since.  She is throwing up once a day, more or less, and is an emotional wreck, hanging out in the nurses' office a few times a day.  I don't think the move itself was stressful, but it seems to have thrown her off balance.  We will likely do surgery sooner, rather than later, if this doesn't slow down soon, but the scheduling has me stressed to the max (surgeons' schedule, Emily missing school for a week+, taking care of 4 other kids and a trip to NIH to all maneuver)!  Praying a lot of God's peace and wisdom as we start to plan this out.  We are trying to address the emotional side of things too, because there is definitely more than the physical going on (again, I think the move, the sub, missing us at school, etc.)   Thankfully all else around here seems to be calm for the time being, though it is scary to think that in a few short weeks we will have elected one of these yahoos to be our president and then who knows what will be happening!  Well, I have quite a bit to get done so happy fall!!