Saturday, June 28, 2014

Cheap Summertime Entertainment

With Zeke all casted up, our summertime fun has been kind of stymied.  We haven't done a lot that involves water.  So no pool, no sprinkler, no water guns.  We did do bubbles a couple of times.  It also means Zeke can't ride his bike, play on our playground, dig in the rocks, or swing on the swings.  (All things the kids do constantly.)  We've also tried to stick to a somewhat structured morning with an art and building time, a writing time, a puzzle and board game time, and a math time.  The big kids are reading in the afternoon and doing a few pages of phonics but they also usually read before bed.  Too much free time ends up with my kids fighting constantly or the kids just hanging out not really playing anything.  I think we've come up with a good balance of 30 minutes of an activity and then free time before lunch and most of the afternoon.  The big kids have pushed Zeke in the stroller in the street.  They've played traffic cop, with Zeke giving them directions as they ride their bikes.  I taught them out to play Kick the Can (but with a whistle instead of a can).  That lasted maybe ten minutes.  They've learned how to play War with math flash cards.  They've made roads and shapes with sidewalk chalk.  We used cornstarch to make our own sidewalk chalk paint.  They've played hockey in the street with bouncy balls.  They've played soccer and t-ball.  They pilfered all of the greeting cards out of our summer writing supplies and jammed the neighbor's mailboxes with notes.  The big kids have patiently obliged Zeke's whims and drawn him whatever picture he wanted at art time since his own drawing ability is pretty limited right now.  Conleigh's come in several times with purple stained fingers from stealing mulberries off our neighbor's tree.

And we've still got lots to do.  I picked up a giant game of jacks at Target that has 2 inch rubber jacks so I think even Zeke will be able to pick them up.  We've still got a couple of new board games to try out.  I haven't yet showed the big kids how to create sticker stories, where you use stickers for the main parts of your story and then draw in the background and fill in your words.  I'm hoping we can make an aluminum foil river in our backyard without dousing Zeke's arm.  We haven't touched our watercolor paints yet or the precut tissue paper squares that I found at Michaels' on clearance.  The garden is just starting to produce; we just had green beans out of it yesterday.  We hit the Omaha zoo when we were there a few weeks back but we haven't done the Lincoln Children's Zoo yet.  And I'm hoping once Zeke gets his casts off to have a big old "No More Casts" water party with friends.

The summer reading program at the library had the kids make robots as one of the activities in their reading logs.  Conleigh's is named Lucy.  And Zeke's is a shark.

The kids seriously thought this was so funny.  Conleigh was pretending to be Kenson and Kenson was pretending to be Kenson.  The clothespin earrings are a nice touch, don't you think?  Look how Conleigh is standing.  She just did that all on her own, because apparently that's how boys stand.

Tie Dye

While Zeke and the grown ups were at Mayo, Kenson and Conleigh were at Grandma's.  They worked on one of their 4-H projects, tie dyed t-shirts.  They ended up making 2 shirts each plus 2 shirts for Zeke.  Grandma even helped Conleigh sew on 26 sequins.  She was brave and held the fabric while Conleigh poked the needle through it.  And she made a shark applique for Zeke.  He may or may not have slept with the shirt under his pillow last night.  

This photo completely cracks me up.   It is just says so much about the three of them.
Zeke is grinning like it hurts.
Kenson is striking a pose and being his laid back self.
Conleigh is mad about something and sulking.
(Not that she is always sulking.  Just that she wears her feelings on her sleeve.)

Thursday, June 26, 2014

Tegaderm Schmegaderm

Zeke's skin grafting may turn out to be the most difficult part of this whole toe to finger transfer.  They used a 1 1/2 by 4 inch section of skin on his upper thigh to cover the sides of his new finger.  They describe it as shaving up this section of skin.  It sounds kind of awful.  To be honest, it also looks pretty awful.  They apply a clear dressing of Tegaderm which allows the blood to not scab but sit just under the dressing and be reabsorbed back into the skin graft area.  This means that there is a pretty bloody mess on Zeke's thigh. I'd take a picture but it is not something anyone wants to see. Without being too graphic, the blood can start leaking around the edges of the dressing so we were instructed to put more Tegaderm on the edges prior to this happening in order to reinforce the dressing.  The dressing has to stay on until July 1.  Then we are to take it off and if the skin has started to heal, it should look a bit like a sunburn.

It just looks brutal though.  It also has completely worn me out today.  It started leaking yesterday.  I reinforced it with some giant sheets of Tegaderm that the hospital sent us home with.  (Which I could have cut into smaller pieces but I didn't know that at the time.)  It leaked some more.  I added more Tegaderm.  By noon today it was clear that I probably shouldn't have reinforced the dressing but should have just changed it instead.  Regardless, I was fast running out of Tegaderm.  I spent most the my afternoon trying to figure out what to do.  Tegaderm is available through medical supply stores but it is about $20 fora  4 inch by 4 inch patch and not covered by insurance.  The actually dressing kept looking worse and worse which in turn made Zeke anxious because he could see the blood and because he was worried about us having to take off the sticky dressing.

In the end, we ended up at our local hospital where a nurse changed the dressing.  It wasn't nearly as bad as I thought.  I really thought it was going to stick something terrible, which it didn't.  I was also really concerned about it being a huge mess of blood when it was removed which it wasn't.  Seeing the nurse change the dressing gave me a lot more courage about dealing with it which was good because we only had that dressing on for a few hours before it started lifting off the skin and coming loose.  So I ended up taking the new dressing off and reapplying an entirely new Tegaderm.  Mayo is supposed to be sending us more and the hospital sent us home with a bit so hopefully we will not run out again.  The graft site is also supposed to drain more during the first two days and then let up.  So I'm hoping that holds true.  Seriously, this silly sticky dressing has stressed me out!

Tuesday, June 24, 2014

New Casts and Skin Grafts

The old casts are off and the skin grafting is done.  Zeke is now sporting a new cast on his hand and a walking boot on his foot.  It was a long day, with a 6:15 am report time but we were out of the hospital around 5, in time for supper and Cherry Berry yogurt.  The skin graft site is pretty gnarly looking and we are in charge of keeping it from "leaking" which makes me feel highly unqualified.  But he will be able to take the dressing off in a week and I can do anything for a week.  Right?

Sleeping at the hotel-can you guess what animal Dr. Moran created for his new cast?

Sunday, June 22, 2014

Rochester Round 2

Today was an odd day.  USA played Portugal in the World Cup so we had D's soccer boys over.  We only ended up with like 5 boys plus a couple we are friends with who stopped by to show off their new babies.  But Kenson and Conleigh are already at Grandma's in anticipation of us leaving tomorrow for Rochester for another appointment for Zeke.  So it was strangely quiet.  No big kids and not a huge horde high school boys.  We actually had leftovers of everything.  (Chicken burritos, watermelon, and brownies...all left over.  That never happens.)

Anyhoo-big kids are off to Grandma's for a few days and the rest of us will depart tomorrow for Zeke's skin grafting procedure on Tuesday.  The surgeons did not have enough skin to cover the sides of Zeke's new finger so on Tuesday, they will shave a small portion of skin off of his thigh and use that to cover the sides of the finger.   That means they will do that procedure and then recast his hand yet again. If we have understood everything correctly, they will remove the cast on his foot and he will get something less castlike, hopefully something that is removable.  If he gets that off, then perhaps we'll be able to wrap up his arm and let him be a bit more adventurous in terms of water play.  We are then hopeful that he will just need one more appointment, a few weeks from this one and will then be cast free.

The procedure on Tuesday will require general anesthesia but is an out patient procedure.  The anesthesia seems less scary the more times we have had to have Zeke do it but it still is a bit unnerving to me.  It's always a bit hard to send your little guy off with the anesthesia team.  We'd still appreciate your prayers for a successful procedure and no issues with the anesthesia.

Wednesday, June 18, 2014

Of Birthdays and Boogers

For birthdays, we let our kids have 3 birthday wishes instead of a ton of presents.  They wish for things like specific cakes, having friends over, a specific toy, or eating at a certain restaurant.  It's not uncommon for my kids to talk about what they are going to wish for months in advance, dreaming about the possibilities.

This morning, the conversation started like it usually does, with Kenson saying "For my birthday, I'm having..."  But then I heard "For my birthday, I'm having a cake with boogers on it."  Then some giggles and "No, I'm not.  But if I wanted to I could."  This was followed by the ever encouraging Zeke chanting, "Do it!"  Do it!  Do it!"

I'm just glad to know that he still thinks I am capable of all things, including putting boogers on a cake.

Thursday, June 12, 2014

Zeke Update and Shrine Weekend

Zeke's a bit past the two week point after his surgery.  Whenever we're out and about, we almost always have someone ask us how he's doing.  The answer is terrific.  A few other parents of kids who have had extensive hand/foot surgeries said he would be up in no time but I was a little unsure.  I think he only took the heavy hitting narcotic pain killer maybe twice once we got home, then he took a couple doses of regular strength children's Tylenol, and after that, he hasn't taken anything.  He's had no complaints of pain at all and is walking around like normal.  So far we haven't had too many complaints regarding being in a cast either. He was pretty demanding today, wanting one of the big kids to push him in a stroller and he just doesn't get why the grown ups won't let him swing but in general, that has not been the case.  We actually could have returned to Mayo last Thursday to have the skin grafting done but we had plans we couldn't change for the weekend.  Unfortunately, Dr. Moran is out of the office this week so we will not be able to get in until June 24.  Kind of a bummer since that's ten extra days in a cast but there was just no way to get around it. Trust me-I tried.  My biggest worries have actually been related to infection since there is just minimal dressing around his toes.  We've been covering the toes with a sock but it just seems so vulnerable.  Also on Thursday night, he broke his cast on his foot.  As in a large 3-4 inch square section on the bottom just broke off.  So Friday morning we were scurrying around to get it recasted before the weekend because...

This weekend we were actually off to the Shrine All Star Soccer game.  Hard to believe that we did that only two weeks after surgery.  D was asked to be an assistant coach and since Zeke is a Shriner's patient, he was the honorary captain.  (They always ask a couple of Shrine patients to be honorary captains.)  Zeke helped with practice, walked in the parade, and helped on the sidelines during the game.

Big kids waiting for the Papio Days parade to start

All the folks from our town-#1 is our regular season goalie, Matt, then there's D and Zeke

Getting a trophy and medal for being honorary captain

Zeke with the whole Shrine South team

If you don't know about Shriner's, we would be the first to tell you that they have a great mission:  to help kids get access to free medical care.  As part of this mission, the Shrine chapters in Nebraska host both a football and soccer all star game as part of their fundraising.  This fundraising then supports the various Shrine hospitals around the U.S. and also helps off set the costs associated with the local Shriner programs like costs to transport patients to the hospitals and children's events for the kids serviced by the Shriner hospitals (like trick or treating at Halloween).  Zeke's care has all been provided free of charge by Shriner's Children's Hospital in Minneapolis.  His actual surgery was too complicated for the Minneapolis hospital so it was done at the Mayo Clinic since that is where his surgeon normally practices but the actual billing is supposed to go through Shriner's.  We did have to pay for his MRI which was a pre surgery procedure done at our local children's hospital.  Shriner's does bill insurance but after that, they bear the full financial weight for any procedures.  Depending on the hospital, Shriner's specializes in different types of care.  Some specialize in helping kids with orthopedic issues including prosthetics.  Others do burn care.  Others work on cleft lip and palettes.  They want no child turned away for medical care simply because a child's family can't pay for the services.

We ended up spending the whole weekend in Omaha and hitting the zoo and aquarium on Sunday.  Considering that my kids have had a wild last few weeks (Minnesota trip and surgery, late night VBS,  late night t ball game, plus the Shrine weekend) they did great.  We only did the rainforest, the butterflies, the aquarium and lunch but that was plenty.  So nice to be home though.  With D gone on Thursday and Friday nights, it gave the big kids and I a chance to decorate the dining room for Father's Day.  We didn't do anything to spectacular but the kids had fun blowing up balloons, making the banner, and hanging streamers from the door.


Wednesday, June 11, 2014

Wash, Rinse,Repeat

One of the things about being a stay at home mom that is hardest for me is the seemingly endless repetition of my days.  Laundry, dishes, sweeping the floor, rocking the baby, feeding the kids, getting everyone to sleep, collapsing in a heap on the couch until my own bedtime, then waking up and doing it all over again.  It wears on my soul.  I am a classic overachiever.  I do not idle well.  So many of the tasks I do during this season of my life seem small and insignificant, menial.  It just seems an ill fit.  While my heart knows that what I am doing is important, there is still a huge part of me that feels unfulfilled and abandoned.  It is easy to long for a different type of day, one that is not so wrapped up in the monotony of keeping house.

Left to dwell on all of that, it's easy to sink into a pit, mired down by self pity and envy.  Which then leaves me with a choice regarding the pit:  do I want to live my day and night in the pit or do I believe God intends something better for me?

My daily to do list of things that are ultimately never done is so closely linked to worship because worship in and of itself is never done.  Kathleen Norris writes in The Quotidian Mysteries, "Dailiness can lead to such despair and yet also be at the core of our salvation."  How?  Because our personal spiritual walks are always about the daily task of staying close to God.  This God who knows everything somehow knows that the repetitious tasks of our daily lives mirror our need for the repetitious tasks of Godly living, that without such repetition we would surely walk far from Him.

How ironic it is that the very tasks that create such annoyance in me, the constant stream of dishes, the overflowing laundry, that these are the things children long to play?  Five, six and seven year olds could spend hours pretending to do these tasks, engaged and active, not caught up in the adult feelings of drudgery.  Ask a child to pick a book or a movie and what might he or she choose?  Not a new title.  Instead, he or she is likely to pick a familiar story, one he or she adores and loves.  "Again, again!"  is the mantra of childhood.  Children who are free to choose choose the spirit of routine.  As adults, though, we long for the freedom of childhood but bristle at the thought of the day in and day out tasks required of us.

Yes, there should be something sacred in my everyday.  All too often the sacred gets lost in the clutter on the counter and the tears of the baby.  The day seems endless.  Norris sums it up through the words of a monk who wrote "the sun hardly moves, if at all and that the day is fifty hours long."  For me, the days do not necessarily drag on but this season of young children and motherhood surely does.  Yet, this liturgical rhythm of my day is sacred and holy, something I all too often miss.  I need to see His presence in my sleeping seven year old whose eyes flutter as he turns over, stiffling a yawn.  "How on earth did he ever fit in my lap?  God has grown him so tall."  I need to see His presence in the fuzzy hair of the baby.  "Chubby cheeks, coppery hair, a dimpled chin-somehow those things make me smile.  How did God know how to put this little guy together?"  I need to see His presence as I sit in the rocking chair, endlessly rocking, because those quiet moments are opportunities for reflection and gratitude.  Because all the endless moments are moments for that, for finding the sacred in the mundane.

Tuesday, June 10, 2014

Patio Redo

With D done with school, I can actually get a bit more accomplished, including this redo of our patio.  The short version is 1.  I straightened things up a bit. and 2. I gave some old patio furniture new life.

The low down on the straightening-our patio was a mess.  We have a ton of stuff that needs to go in a shed but having limited time to do yardwork and outdoor projects on a new construction, we had to prioritize and a shed did not make the top of the list.  So a lot of our outdoor stuff is shoved under the patio steps.  Hoses, flower pots, outdoor toys-it's kind of a big mess.  We had just been using an extra large Rubbermaid tote for the kids' toys but it looked super sloppy.  So this spring, I ordered two storage benches with lift up seats.  Not only do they look better than the large blue Rubbermaid box but they also will give us some extra seating.

The low down on the patio furniture-Many years ago we purchased a cheapy patio set with a glass top table, umbrella, and fabric folding chairs.  The chairs and umbrella are long gone but the table was still hanging around.  It was the traditional hunter green.  Last summer we bought some wicker like stacking chairs which we liked but that really didn't go with the table at all.  Really the table just didn't do much for us anyway because it was small and only seats four.  We also need more seats than the 4 that we bought.  So I bought another cheapy patio table secondhand for $20.  I also bought a used set of 8 metal folding chairs.  A little spray paint, some new outdoor fabric for the seats, and we've got two matching tables and a bunch of extra seating that also matches.    The chairs are seriously cute and such an easy fix.  Really makes me want to buy more chairs and do more but I don't think we need that many folding chairs.  Total cost for the patio furniture (spray paint, fabric, the table and folding chairs)-less than $50.

We ate supper outside tonight.   The kids were tickled pink.
We hardly ever eat outside, mostly because it's always felt messy.

The green bench is an old piano bench but it works great as a spot to plop my herbs.  
And yes, there are herbs in the large container, they are just not up yet.  Soon we'll have parsley, basil, and cilantro.
The other container has two kinds of mint.

We now have 4 olive green folding chairs and 4 aqua blue ones with a combination of 3 fabrics, including some that was leftover from when I covered the cushions on the front patio furniture so not only do they match the stuff in the back, but the chairs match the couch on the front porch.
I really ought to take a better picture because they are just so cute.  (I know, I said that already.)

Saturday, June 7, 2014

Friday, June 6, 2014

Summer Haircuts

New haircuts for the two big boys

Kai is trying to "kiss" Kenson

Zeke had just woke up from his nap and wanted none of the picture taking.

Maybe they are both sort of looking at the camera in this one

Thursday, June 5, 2014

Return to Real Life

We got back home late Monday night.  Zeke's been doing great.  He hasn't had any major pain issues and has not yet had any major melt downs over the casts.  Today, he's only had one dose of pain medicine, just regular strength Tylonel.  It's hard to believe that just a week ago he was doing 9 hours of surgery and was intubated.   He has climbed on the sofa, went down the toddler slide, and tried to fish a bouncy ball out of a mud puddle, all of which have given Mom reason to worry.  (It may be a long 6 weeks of trying to keep a busy 3 year old from doing normal 3 year old things.)  Ty at Robohand also made us a device to use with silverware (or other small things) and it has been a lifesaver.  When he uses it, Zeke can feed himself most things.

This was on our first night day home so we had to do a little experimenting with silverware types to see what worked best.  D took some athletic tape and taped around a regular fork so the silverware stays in better and it really works slick now.  

Of course, no homecoming is complete without some type of problem.  The baby is still not sleeping well (naps or at night) and has a cold and a cough.  Tuesday night brought thunderstorms and tennis ball size hail.   We didn't have any damaged to the house that we could see but both vehicles have some type of hail damage.  So that means we've had to file insurance claims so we could get someone to inspect our roof and to see what we can do about the dings on the vehicles.   Zeke broke his Robohand today (nothing major but of course something that requires fixing) and the new deep freeze has been doing weird things.  Sounds like life, I guess.

Monday, June 2, 2014

Surgery Shout Outs

My mom should get a huge shout out for coming with us to Mayo this week.  She's wrangled the two oldest plus the baby inside small places, with no schedules, and quick fix meals.  She's gotten up with the baby at night and wrestled him to sleep in the afternoons.  Without her, we would not have been able to bring any of the other kids.  Truth be told, one of the best gifts my parents have given me is that they are quick to help when help is needed, regardless of how it might interrupt their schedule or be uncomfortable for them.  I wish I could explain to you how much I have seen this modeled in my life, from the times when it has benefited me personally (like when D's grandma was dying and they took my kids for a week even though it would be my dad home with them) to the times when it has benefited someone else (like the time when a neighbor was about to be evicted from her house and asked us to help them clear it out about 3 hours before the actual event).

For some reason, this surgery has also conjured up some of my dad too.  Deciding to do this surgery was not easy.  Zeke's hands were useful and functional as they were.  Was it really a good idea to mar his foot in order to add a finger?  (Which by the way is actually a bit of a misnomer.  His toes looks so amazing.  You have to count to know one is missing.)  There were a lot of other parents in the online limb difference community who had been presented with this idea and turned it down.  It was a hard choice initially and those doubts resurfaced as the surgery got closer, as we sent him back for anesthesia, and as he emerged post surgery heavily sedated and with a breathing tube.  As we were trying to decide if we should do the surgery, we asked my mom her opinion but in her usual way, she was reluctant to offer up too much of anything.  She is almost always about staying out of her kids' choices and letting them decide without her influence.  And while my dad never meddled, it has occurred to me many times that he would have encouraged us to do the surgery. Without a doubt, my dad would have said "do it!"   Why?  Because so many of our concerns were fear based ones.  We were scared about the breathing tube and anesthesia.  We were scared the surgery might now work and his toe would be lost.  We were scared he would be angry with us as he got older because we agreed to the surgery.  We were scared of the opinions of others.  And for my dad, fear was never a good reason not to try something.  Granted, we did our due diligence and weighed the risks because there are some pretty serious ones in there.  We would have been remiss to not to do that.  But I am sure my dad would have said to try, that if you have a chance to improve Zeke's quality of life, to reduce the overuse of his existing fingers, that you have to try.

Maybe I am just getting old and sentimental (and maybe the teenage hormones have finally left the body for good) but I appreciate my parents more and more.

Sunday, June 1, 2014

Post surgery, day 4

No more big nasty splints and dressings!

Tada!  Two new blue casts!

Lots of progress today.  They came around 10 to take Zeke down to the operating room where they sedated him and checked out the surgery sites.  All looked great, better than expected in fact, and they replaced the dressings with two casts.  This means he is now off of bedrest, got to remove the pic line in his neck, does not need to keep his arm at 90 degrees, and as long as we are comfortable with it, will get to go home tomorrow.  (The going home part depends on how well his pain is managed tonight and if they can get us discharged early in the morning.  We were told it was doable to be discharged by 10 or 11 which would make driving home doable.  But it if is too much later, it might end up being too late for us especially since we haven't gotten a decent night's sleep in awhile.)

Ronald McDonald House Boys vs. Girls

Upon entering the lobby of the Ronald McDonald House and seeing the customary Ronald McDonald statue  of the clown sitting on the bench, Conleigh immediately climbed up on Ronald's lap, running her fingers over his arms and face.  Kenson just stood there, chose one finger carefully and quickly said, "Look, Mom!  I'm picking his nose."