Thursday, December 22, 2016

That Darn Hip: End of an Era (hopefully!)

Today we drove back from Missoula after Jack's recovery from the final surgery on his hip. Surgery was Tuesday morning. Maybe you've followed along on the whole Darn Hip saga, but this was a minor surgery where plates and screws were removed using the same incision from last year's doozy of a total hip (where we had a subsequent 6 horrible, stinky weeks in a body cast). Although "minor" never seems the accurate description with any surgery, anesthesia, and pain, we put it into the "Jack perspective." Comparatively, not a big one. And we are so happy this whole hip drama is over. Of all of Jack's health issues, I never thought much about the hip. Boy was the rug pulled out from under us! This has definitely been a hard year for him and my prayer is that 2017 is one filled with health. I know many of our readers are in the same boat - we just want health. Our baseline may be different from the average, but healthy for us means managing conditions, pain, growth, and no major flair ups, emergency surgeries, or general scariness. May HEALTH be in our future, yes and amen.

We had an early morning slot for Jack's surgery and still managed to spend quite a bit of time waiting for things to get going. Is there some sort of group with sway out there that wants to hear a mom complain about waiting rooms? Oh there isn't? Well, too bad! Here goes: why have us arrive at 7:30am and sit in the outer, tiny waiting room for 30 minutes? Then why have us come to the next waiting area for an additional hour when it's only in the last 5 minutes that they ask questions, have us sign the paperwork, take vitals, administer the Versed, and get the ball rolling. Is this to torment us? Is this to make sure we have adequate time to show up? I'm sure there are great reasons, but SERIOUSLY WHY????????????????????

Anyway, cute boy. Cute husband. Nervously counting the minutes until surgery.

Once they finally wheeled him off to surgery, it was less than a half an hour and done. Oh what sweet relief when we were able to head back and see a happy/agitated/confused/giggly boy. This kid has been under anesthesia too many times to count, and he does pretty well. I thought he would crash as soon as we got back to my parent's house, but he was too excited to be at Grams and Cheeks house, so No Nap Jack, who was loopy and thought he could just walk around, was the rest of our day. He did so well, though. And look what they took out of his hip! Can you imagine how good it will feel to not have that hardware in his teeny tiny body?

The next morning he woke up very sore, with all the numbing meds totally worn off. Thank God for narcotics and fun things to do like watch the same Elmo 6 times. Besides keeping Jack entertained, we also spent most of the day on my annual puzzle-around-Christmas and had lots of fun celebrating the holiday with my parents. We had a yummy Christmas dinner and presents afterward. It's just second nature to schedule most life/holiday events around Jack's surgeries and since we were in Missoula, why not do Christmas?!

I'll leave you with the photo we used on our Christmas/We've Moved card. I wish I could send one to each of our readers. Many of you have become friends. I don't write as much as I used to, but I just can't seem to let this place go. You have been such an encouragement to us, especially through 2016. And even with the rough effects of cerebral palsy (I'm looking at you, hip), we count our blessings of being able to move into this new home built for Jack's needs. So I want to wish Merry Christmas to all of you. And yes, to a healthy New Year.

All our love,

The Bennions

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Tuesday, November 22, 2016

A Good Season

Our little first grader

Get this dear reader - I am sitting in a coffee shop and I am writing to you. Just like old times. Remember back around 2010-2013 when I would write almost every day? In the thick of so much uncertainty about Jack's health, you saved me. I so looked forward to my writing time, my therapy time. Today I contemplated a quick FB update, but then it would either be 20 minutes there in FB land or 20 minutes here. Here won.

This makes me exceedingly happy. Last week I got a nice comment on the last blog post that said "We miss you Jessi, Jon and Jack! I hope everything is okay with the three of you xx." And I realized I haven't written since September and really, haven't told you much of anything for about 6 months! As always, Instagram is about the only thing I keep up with on a regular basis. It is where I post what we are up to more regularly. Lots of cute Jack photos and (possibly) too many photos of my coffee.

We moved into the home designed and built for Jack this August. I gave you all a quick tour and since then we have been making it feel more like home. It has been such an answer to our needs, some we didn't even realize we'd have back when we first purchased our little plot of land. Jack still isn't walking independently and our backs, each and every day, are so thankful to not have any stairs to contend with. Jack can get anywhere he wants (he's a master scooter) and we are loving the simplicity of our space. For a new home, it is still pretty small, but that only helps us on the hoarding tendencies. We are really in love with Jack's One Level - our white house with blue shutters a minute from school.

Just this week marked the year anniversary of Jack's major hip surgery. I gotta admit, it's not easy to see the photos from this time last year. Jack in his body cast is something I never want to repeat. Of all the dozens of surgeries, this recovery was above and beyond the worst to go through. We are still feeling the reverberations of it to this day. Jack is not walking independently, a skill he sadly lost. He also gave up eating. I don't think it's too far out to say that he will become brave enough to take steps by himself again, but it has been really slow going. A sad side-effect of the surgery was losing about 4 inches of bone in his affected hip. That means that walking is that much harder, with one leg so much shorter. Now he has his nifty "lift", but it is still difficult to relearn something that took so long before.

Same with eating orally. Jack has been on a hunger strike since hip surgery. Just yesterday we had our first meeting with a new gastroenterology team here in our town to tackle this big issue. I feel like I need to pause and praise sweet baby Jesus that our small town finally has a pediatric GI team. We spoke with the specialist for over an hour! I have never, in all of Jack's medical stuff, spent a full hour strategizing and discussing each detail of Jack's eating and digestion issues. It was a breath of fresh air to come up with a plan. We have hopes that Jack will become an eater again, but we also have the right team in place to make sure he is getting everything he needs in his tube feedings.

Besides Jack's hip and eating issues, his shunts are looking good. He is seeing PT, OT, and Speech therapists at school, as well as private therapy here and there when we can fit it in. Jack LOVES school like I've never quite seen a kid love school. We happened to land about the best aide we could have hoped for, who dove right in with tube feeding and lesson planning and making sure Jack is with his classmates as much as he can handle. It's pretty special. I don't take any of these blessings for granted. School has been the bright light this year in Jack's life. We are grateful and intentionally soak it all up because we know things may not always be so wonderful. When your medically fragile kid is healthy enough to love school and his team is about the best it could be - you pause and take notice.

Medical fragility is different than special needs. I have been pondering this a lot this year. Not only do our med frag kids struggle with special needs in the typical sense, they are also not guaranteed their very health. As parents, we spend our energies worrying about their very physical health, the next surgery, their next medical life or death crisis. I am fully aware that Jack's health is precarious. I have seen many like him struggle with living, the next breath is not guaranteed. I have been telling my close friends that we are basking in a good season. When I say that, I am talking about Jack's health. Sure his baseline is very different than other kids. His "health" is different, but when it's good, it feels like heaven.

So we take each of these seasons as they come and try to enjoy the good times. I love that we are in a good season (even with the reverberations from hip surgery) and as I used to do, here I am, tears streaming in a coffee shop.

Thanks for not forgetting about us and checking in. We are well.

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Thursday, September 1, 2016

There are some things you can only dream of...

When you're counting the days, weeks, and months while your child is in the NICU, there are certain things you dream about. Sometimes it physically hurts to even dare think about. For me, sending Jack to school was right up there. I love school. And I've always wanted my child to love it, too. 

The reality of being born so very early, is that there is no guarantee to make it. There were some days were I was certain he wouldn't. Wouldn't get up one crisp morning, put on his backpack, and head to school. 

But then it happened. Preschool. And seeing that this kid can be in the world. Out of isolation. (Barely) Strong lungs, breathing in that school air. 

3 yrs old 

To experience the joy that finally! he gets to be around other children. He gets to learn his ABCs and 123s just like any other kid.

4 yrs old 

Growing taller. Getting stronger. More independent. Not as afraid. Loving life. Loving school.

5 yrs old

Then kindergarten. This was the year where I was acutely aware that all those dreams in the NICU? Well, they came true.

6 yrs old

And this week. Our big first grader. In a mainstream classroom. Doing such a great job. So proud of him.

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Monday, August 22, 2016

Jack's One Level - Home

We are home. We have been in our house for a month now and I thought I'd better write about it before the rest of the year takes off from me.

Last fall, Jon was killing some time and took a left on a road he'd never been down before. He glanced over and saw this perfect little spot for sale. It's funny actually, because we had our eye on a different plot of land for years and the owners kept telling us it would be put up for sale. We waited. And waited. Then Jon takes a drive and calls me right away. He says to meet him after work to see this land. We could not believe it was available, one of the last in a sweet, tiny town south of Helena.

We took a walk along the creek behind the property and immediately fell in love. It was a minute from Jack's school. It was the perfect distance from Helena. All interstate and no frontage roads to contend with during our wicked winters. I remember shedding a few tears on this walk. It felt right.

And in the dead of winter, we signed on the dotted line and our new adventure began.

I documented most of the construction process (which was so much fun!!) on Instagram, but today, I want to take you on quick iPhone-snaps tour. Cause ya'll, it is DONE. We may not have a single thing on the walls and I may move our furniture around a hundred times, but we are moved in and loving every square inch of our new home.

I present... Jack's One Level!

This was right after the glorious sod was laid. Never underestimate the power of green grass, friends. Dirt flying and a white house don't mix! It's hard to tell from the photo, but that is a navy blue front door and shutters. And those are hanging plants from my parents that I have kept alive for 4 weeks!

The first room you see when you walk in the door is our dining room. We've already had friends and family over (yay!) and have had heart to hearts and numerous spills on this table and rug... because life! and we live here. It's so fun to realize this after dreaming about it for so long.

And then the heart of the home - the kitchen.

We spend most of our time around our green island.

One of our favorite things about the kitchen is the side-by-side gas ranges. We got the idea from chris loves julia. This saved us major $$ while giving us the look of a professional range. Jon made a batch of his famous pretzels for the neighbors last weekend and we got a taste of the time-saving that we'll have with two ovens!

And just a couple of my favorite little spots of the kitchen - the place for our cookbooks.

And our two open shelves, filled with such lovely housewarming gifts.

Here's the view from standing in the kitchen, looking into the living room. We have an open floorplan and wide spaces for Jack to get around.

We are shopping around for art for our walls. We have a lot of photography, but I need ideas for art to fill large walls. Send me ideas if you have any! We are slowly filling up our built-ins, too, and love that we finally have a place to display small photos and books.

We also have an office on the other side of the kitchen that has floor to ceiling built-in book shelves. For years we lived with our books in boxes or in make-shift bookcases here and there. A place for all the BOOKS BOOKS BOOKS BOOKS BOOKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

On that side of the house is the kitchen pantry, a laundry room, a guest bedroom and guest bath.

So far in our adventures of new construction ownership, we've had the delivery of a faulty washing machine that had to be replaced (here's my dad watching/listening/diagnosing the issue) and we also had the HAIL-POCALYPSE where our lawn was primed and ready for sod (this requires major delivery, placement, and smoothing of nutrient-rich dirt) when a hailstorm wiped out all the work in a matter of ten minutes and sent a mud river down the road.

Anyway, back to the house tour. Next to the living room is Jack's room!

This is a house built for him and his needs and there's nothing we like more than watching him enjoy his room.

And then the master bedroom, which Jack also thinks is his.

And that red barn view.

And finally, the master bath.

And my favorite spot most mornings, the back porch.

That's all the photos I have! I really can't believe we are here. Every step of this process smoothly fell into place. It is a dream come true and just in time for Jack to start 1st grade next week. We will walk along the creek, over the bridge and right to his school door.

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