It’s All Fun and Games Til Somebody Loses a Cast

It's all fun and games until somebody's cast falls off. #newleg #theamazingjp #uvaorthopedics #dontworryitsallgood

You know those days when everything goes as planned? Really? What’s that like?

I had been kind of nervous about JP’s new cast for a few days prior to this morning. He seemed to be increasingly uncomfortable, especially when we tried to pick him up or touch his cast in any way. In addition to this, I had started noticing that his little toes were inching their way into the bottom of the cast, and, as of yesterday afternoon, part of his incision was visible at the top of it.

I had this conversation with  my sister Joannie last evening, in which she gave me some sage advice:

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Of course, I didn’t call. The clinic was closed, it wasn’t a real emergency, and there was cleanup, and dinner, and cleanup and bedtime and by then I decided to just wait until morning.

John Paul had a fitful night and cried out several times – probably everytime he rolled over. By morning, I could see well over an inch of his incision scar and his toes had all but disappeared. Yikes!

I made the phone call before the clinic even opened and left a message, but I assumed that there was no way they were going to tell me anything other than BRING HIM IN HERE NOW, because that cast was doing nothing for him at this point.

By the time I showered and packed, Patrick arranged to stay home with the boys for the day (best husband ever!), and brought John Paul to the car, (with JP screaming and me panicking the whole time) the cast was off. It just slipped right off his leg into my hand with little to no ceremony. EEK!!

The clinic was very busy, and Dr. Romnes was actually in surgery all day, but his wonderful, fabulous nurse took care of us and got an x-ray and sent it to him to view between his operations. He was so pleased with what he saw that he and the nurse decided that another cast was not necessary. Instead, she cut apart a knee brace, took out the metal brace part, straightened it out a little, placed it on the outside of his right leg, and wrapped the whole thing in an Ace bandage. And sent us back home.

So now his little foot is free to move at the ankle, and we can take the bandage off and bathe him periodically and let his skin breathe a little.

As for the x-ray, there was a noticeable difference in the bone growth at the new site, where the pins had been, and the bones had not shifted at all, despite the shifting of the cast. This was a huge relief! So John Paul is healing quite nicely despite himself and his squirmy-worminess!

Little stinker!

..And now back to our Regularly Scheduled chaos…


Update on John Paul’s leg

Goodbye old nasty smelly cast! #theamazingjp #newleg #uvaorthopedics
A week ago, we went down for a post-surgery follow-up to get the cast off. It had been almost 3 weeks, and the doctor was pleased with the rate at which the bones are healing. He said there is already new bone starting to form at the break site.  (Remember there is no joint at the knee, so John Paul won’t have any more movement at the knee than he did before, but the leg is at a more suitable angle for function.)

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They took an x-ray with the cast partially removed, then removed the cast completely and took out the two pins holding the bones in place.  One of the pins had already worked its way out on its own.  Then the nurse cleaned up his leg a bit and the leg was re-casted for three more weeks. We got blue this time!

Hello, new, cleaner, lighter cast! #newleg #theamazingjp #uvaorthopedics
Here he is with a new cast and his stickers!

It was nice to get rid of that nasty, smelly cast! Without all of the post-surgical gauze wrapped around the incision, this new one is lighter and less bulky. John Paul isn’t hopping around like he used to; it’s still too heavy.  But he does seem a little more comfortable.

He was so brave that we stopped at CookOut on the way home and got a chocolate milkshake.

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And when you’ve had enough chocolate milkshake, there are always people waiting in the wings to take care of that for you:

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(this photo was a selfie so it is a mirror image; it looks like the cast magically switched legs and John Paul moved to the other side of the couch, lol.)

It’s funny how surgery affects other things that you don’t anticipate.  His appetite has totally changed and for the past 3 weeks has become such a picky eater! He used to at least try everything you put in front of him, but now he’ll turn up his nose to most everything. I guess it could be the fact that he’s approaching 2 1/2 and have nothing to do with the surgery.  It’s just funny that it coincided with coming home from the hospital this time.

The other thing is that since the surgery he will not go to sleep unless his door is open. Of course now that I’ve figured that out, bedtime is a lot easier, but until I did, he would cry and cry and we were helpless to figure out what the heck was wrong. (He’s still not really talking yet) I wonder if he was just lonely in his room all by himself.  He’s the only one with his own room! He probably just missed his friends.  Anyway, now we leave the door open and the light half-on (it’s on a dimmer) until he’s asleep and he’s just fine.

I tell you what, toddlers would be SO EASY if they would just figure out Eating and Sleeping. And Talking. ha!


What We’ve Been Watching

Just a few things found on Netflix ….

chefs tableThe Chef’s Table – Netflix original documentaries profiling a chef andhis career. Patrick and I have watched two so far and enjoyed both of them: The first, about Massimo Bottura, particularly about his love affair with Parmigiana Reggiano (and who can blame him), and his remarkable 3-Michelin star restaurant in Modena, Italy; and the second episode about Dan Hill, one of the first chefs to pioneer the “Farm-to-Table” foodie movement in New York in his restaurant Blue Hill, which is named after his family’s farm. What we liked about it: They are very well produced and we had really fun discussions afterward about food and travel and cooking.  We’re looking forward to watching the rest of the series. You’ll enjoy them if you’re into food, where it comes from, and people who are passionate about doing it well.

Prizewinnerohioposter1The Prize Winner of Defiance, Ohio I was home alone with John Paul one evening and scrolling through for a movie to watch after he went to bed.  This movie pleasantly surprised me.  IMDB summary: “In order to support her ten children, Evelyn Ryan (Julianne Moore) enters a commercial jingle-writing contest. Based on a true story.” This is actually oversimplifying it by a ton, because she won several contests – dozens, even.  Her husband had a bit of a problem with drink and so was often out of work, and she supported their family by entering contests.  There were some uncomfortable moments, because of the Dad and his alcoholism, which made him angry and violent.  What I liked about it: I found it interesting that they took pains to show that although he made life very difficult for his family, he was not a total villain. The writers could have easily painted him as flat character, cruel and abusive. But interestingly, it did not. Evelyn is utterly inspiring in her amazing patience, endurance, and creativity in loving her family.  All of this is enhanced by the fact that it is a true story about a real family, and the ending is particularly touching.

miss pettigrewMiss Pettigrew Lives for a Day I guess this has been out for a little while now, and I don’t know how I missed it, but I have had the book on my to-read list.  it is a really cute story, set in London just before the start of WWII. Miss Pettigrew, a middle-aged daughter of a clergyman, has just lost another job as a governess, and is desperate for work to stay off the street. At the employment agency she overhears a phone call inquiring for a social secretary, and she sneaks the address and answers the inquiry herself. Her new employer is an American starlet and socialite looking to make it big in the theatre, and she will do anything to get there.  Hilarity ensues.What I liked about it: Endearing characters (Amy Adams is adorable, as usual but Miss Pettigrew is fantastic), and the plot is simple and moves along quickly. I suppose some people might think it a little too predictable, but sometimes I want a movie that turns out right where I would like it to.  Halfway through, I had decided how I wanted everyone to end up, and it did exactly what I wanted. If only the real world were that nice and tidy!


Home, Healing, and Happy(ish)

Here’s an update about John Paul, post surgery:

We were discharged on Friday afternoon and we arrived home after picking up his pain medications from the pharmacy.
IMG_1329Since then, I’m not going to lie to you, it’s been really rough.  But they warned us that the first two days would be the worst . We hardly slept at all for those first two nights. Although he was happy to see his brothers again, John Paul was constantly frustrated because he couldn’t move his leg and I’m sure it was causing him a lot of pain, even with the meds.  Part of the reason he wasn’t sleeping well is because he likes to sleep on his tummy or on his side, and his cast keeps him from rolling over.  So he spent the weekend doped up on the couch watching show after show after show and just making it through as best we could.

IMG_1338Today, however, he’s doing much much better. I’ve hardly had to give him any medicine and he’s trying to move around more which probably means his leg isn’t causing him as much pain.

His hematologist wants to make sure his platelets stay above 50,000 for the next week or so, so that his  incision wounds have a chance to heal, and today he clocked in at a whopping 95,000. So far, so good!

Other than that he’s just resting trying to get used to his leg being straight.

imageHe discovered his right toes with his left foot the other night and he was rubbing his toes together. It must have felt so odd to touch his toes for the first time!

At the end of the post is a video that I took on the morning they discharged us. John Paul was sick of books and TV, and he needed some new diversions. The children’s hospital at UVA has a team of “Child life specialists” who help with that sort of thing. Basically their job is to play with kids and distract them from the fact that they’re in the hospital or hurting or sick. (And luckily, unlike some other well-intentioned folk who occasionally show up as play therapists, they weren’t dressed like clowns.)

Anyway, at one point, probably when the numbness of surgery was wearing off and he was at the peak of frustration and fatigue, he threw a massive tantrum and started kicking violently and biting at the foot that had his IV and all his bracelets.  It was not a pretty picture – very far from the photo I posted on Instagram of him eating his PopTart, haha. So they brought him a little piano to play with his IV foot and some bubbles.

IMG_1297The bubbles worked like magic, and after he calmed down, we jammed on the piano for a bit. Funny thing about the piano: John Paul is so used to pressing buttons with his foot, that he kept pressing the keys rather than hitting them.  Since the piano keys struck a bell when you hit them, pressing the button down harder after the bell has rung has no affect whatsoever.  So I had to teach him how to hit the keys instead of pressing them. (Does that even make sense?) At any rate, it kept him from ripping out his IV and clocking himself in the head.

Small pleasures:

 


john Paul’s New improved leg!

imageJohn Paul had a successful osteotomy today at UVA Children’s Hospital. This procedure took about 3 1/2 hours, but with the transfusion he needed before hand, our day was much longer. All in all, he did a really great, which is really no surprise because John Paul is really great all the time! The procedure  basically involved going in and breaking the bone at the knee, realigning it at the angle we wanted, and fusing the bone together again using too long wires or pins. The pins are temporary and will be removed in about three weeks when the bone heals. His leg will also wrapped in a cast for about 6-8 weeks. Dr. romnes told me that when he got in there, there was an unexpected delay in the operation because he discovered that his leg bone is not round like a typical bone, but flat. He compared it to a blade of grass. One thing that I have learned as a result of all of these various procedures he has had in two years is that you have to expect the unexpected! Nothing ever goes as planned and his anatomy is always a surprise!  All in all, the doctors have always been able to adapt quickly and professionally, and John Paul rolls with it.

John paul is resting comfortably in his bed watching cartoons and drinking apple juice. They’re going to monitor his platelets in the morning, and if all is well we may be able to go home. From here on out it will just be a matter of managing his pain and keeping an eye on his platelets while his leg heals. A huge thank you to everyone who is praying for us and we ask your continued prayers during John Paul’s recovery while he learns to live with his new leg.


John Paul Update: The Wow Edition

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A post about our amazing John Paul is long overdue. There is so much I can post about, and I wish I had a huge block of uninterrupted time in which I could do so. And while I’m dreaming, I’d also like a pony.

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Watching Kipper

Anyway, he’s doing great. We just got back from two weeks visiting friends and family in Indiana. He charmed people wherever we went, as usual. He was a super terrific traveller on the long drive.IMG_0757

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While we were at home, my mom dug out a bunch of Fisher Price Little People and their accessories from the basement, which turned out to be the perfect thing for John Paul to practice using his thumbs and manipulating objects with his fingers. It’s fascinating to watch, and his patience is inspiring. He does get frustrated after a while if he can’t get his hands to do what he wants, but he still preservers much longer than I would do. He amazes and humbles me every day.

We’ve noticed that he has slightly different function in his left and right hands. His left hand seems to have more wrist action, and he is more able to rotate it toward his face. The right hand is more limited to up and down movement, so he prefers to use his left hand for most things.

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IMG_0744If he can’t succeed with his hands, his second option is to try his left foot, which will often get him the result he wants. If that doesn’t work, his next choice is his head. It’s been hard for me to keep from jumping in and helping him, but I have noticed that if I sit back and watch, he will usually figure it out.

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So speaking of his left foot and its functionality, we’ve decided that the time has come to take the first step towards fixing his right leg, so that it will match it. His orthopedist is going to perform a Osteotomy, which is basically breaking his femur and fixing it at a different angle. He doesn’t have a joint at his right knee; his whole leg just basically one bone with a 90º angle in the middle, so for the time being, this is the best solution to get John Paul some more function in his right leg and possible work toward bearing weight on his legs with support. Maybe.

He will be in a cast for 6-8 weeks and he will have to re-learn some of his mobility skills. Up until now he has depended on his right leg as a kind of platform from which to launch himself. But in the long run, he will benefit from having matching legs. He’ll be able to sit more comfortably in chairs. We’ll be able to keep the skin clean and dry on the back of his leg, which is almost impossible now. He’ll be able to bring his feet together and use them simultaneously.

The surgery is scheduled for next Thursday, so keep us in your prayers! He’ll have a platelet check and transfusion beforehand, and then a 48-hour stay in the hospital afterward, more if his hematologist wants to monitor his platelets.

BUT- I’m not too worried about his platelet situation because believe it or not, the last time we checked his numbers, he was at 100,000! That is way above his normal level of 30-40K. I was totally shocked. The hematologist said that he might not even NEED a transfusion if his numbers look like this next week. WOW! Way to go, John Paul!!

Meanwhile he is constantly joyful and full of happiness and curiosity. You can practically see the little wheels of learning spinning around in his head and he figures out the world around him. All of his brothers flock around him and never tire of helping him out and taking him where he wants to go, just like that song, which is constantly stuck in my head.

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Anywho, that’s what’s going on with John Paul. This is a longer post than I thought it would be! If you’ve stuck it out this far, thank you!! I will try and post an update after the surgery so you can see his new leg. Thanks for your prayers! They work!


Back from Vacation

Here are some photos from our week at Lake Anna state park. All of Patrick’s siblings and their families and his parents rented cabins and we spent the week hanging out, fishing off of the docks, boating out on the lake, swimming and sunning at the beach, hiking, biking, and playing every game and sport you can think of. There may have been a few late-night poker games.

It was not without its difficulties. Pack that many people together for a week and you’re bound to ruffle some tail-feathers and hit some rough patches. The Outdoors is full of its own hazards as well. Poor John Paul somehow wounded up with poison ivy. A couple of people got stung by wasps and bitten by flies, and a few ended up with a stomach bug by the end of the week. FUN TIMES..

But for the most part, the place fit our family like a glove. I know that George, for one, had a complete blast and made so many memories going from cabin to cabin and spending the day doing Boy Stuff with all of his cousins. It was a safe place to give the kids some independence to go off on their own adventures. Each night we all got together for dinner and afterward there was usually some kind of epic game – one night it was ultimate frisbee, the next night wiffleball, etc. We got to celebrate two birthdays while we were there, too.

Vacations, like most everything else, are a completely different animal now that John Paul is part of our family. Special needs don’t go away just because you’re on vacation – if anything, they’re even more evident and more demanding. But I guess every mom learns that once she becomes a mom that vacations are no longer about her, but about the kids. It’s not always easy to be the one doing the extra work or missing out on the fun. But – and I’m not just saying this – it’s always worth it!

Thank you for a great, great week, Family!

Cue photo dump:

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The Old is New Again – Before and After Pics!

We are all but finished with sprucing up our old house, and it is ready for market!  Hopefully it will be scooped up quickly because (in my humble opinion) it is a super great deal.  Whoever buys it is essentially getting a brand spanking new house. and there was so much hard work put into this process – least of all by me.  Our friends, the Coupes, did most of the planning, budgeting and installing, Patrick did almost all of the painting with some help from some very generous friends and family members, and the cleaning and outside landscaping was also completed with the help of friends and family. Patrick’s dad deserves a special shoutout for helping with a little of everything.  What did I do, you ask?  Well, I was really great at complaining and stressing out and I also took some photos.  

Here are some before-and-after photos.  I wasn’t very good at taking pictures of all of the rooms before the move, so some are during the construction, and some rooms don’t have before photos at all.  Also some of them are panoramic, so I’m not sure how that’s going to show up on your screen, but you could probably click on them to make them bigger:

Here’s the main area before we started packing.  My folks were in town for the March birthdays:

Living Room/Dining Room *Before*

Kitchen *Before*

Here it is after we had packed up most of our stuff:

Dining/Living Room Before

And with most of it gutted, except for some of the cabinets and counters:

Kitchen/Living Room *Before*

Living Room *Before*

Dining Room *Before*

And here it is AFTER!!

Living/Dining Room *After*

Living Room *After*

Kitchen *After*

Kitchen *After*

Kitchen *After*

Kitchen *After*

Here’s the Den, which we used as a nursery:

Before:
Den *Before*

During:
Den *Before*

After:
Den *After*

Master Bedroom, Before:
Master Bedroom *Before*

During:
Master Bedroom *Before*

After:
Master Bedroom *After*

Master Bathroom, During (I don’t have a Before but just imagine a double sink and a big mirror)
Master Bedroom *Before*

After:
Master Bathroom *After*

And here is the other bathroom and the laundry room, which I don’t have before pictures of:
(there’s going to be a towel bar above the commode)

Hall Bathroom *After*

Laundry Room *After*


George’s Spring Recital

One of the sad things about living so far from our family is that we don’t get to invite them to things like this and force them to come.  I kid, of course.

George has been taking violin from Melanie Fedoryka, who comes out to our school to teach lessons once a week.  Her older sister Sophia has a studio as well, and they combined their two studios together for a spring recital yesterday afternoon in Front Royal, where most of the students live.

They both began playing violin at a very young age; Sophia from Dr. Suzuki himself, and Melanie from a protege of Dr. Suzuki.  The Suzuki Method uses a set repertoire of music, and is arranged so that children learn to develop an ear for music and the technique of making good tone before they can even read a note of music.  It is an unconventional approach, but it promotes the idea that any child can play an instrument with the right instruction and practice, and instills in them affection for music at a very young age.

The recital was arranged in two parts. During the first section, each student played a solo piece, chosen from their latest, best-learned song. In the second, the students played a series of songs as a group, starting with the most advanced.  As they progressed through the list of songs, backwards in difficulty, more students were added as they we able to play.  The last song of the recital was the first song that they all learned and the most simple: the 5 Variations of Twinkle Twinkle Little Star.  By the end of the piece, all of the students, down to the earliest beginner (4 years old), were playing together.  It was actually kind of impressive, considering that they had never played together as a whole group before.

George has been taking lessons for only a few months, so his solo piece was the first variation of Twinkle Twinkle, and then he played with the group for the last three Twinkle Twinkle variations.  (He really wanted to play all 5, but practiced very good self-control and did as Melanie instructed him. haha)

On the drive home all of the boys were asking us to start lessons, and Thomas piped up from the backseat, “Mom, can’t you just see me up there on the stage? I would be great….”


Dulce Domum Novum

The irony of having so many happenings to blog about is that there is not time to blog about it! I am so sorry for keeping that snowy title header up there all this time. It spring for Pete’s sake!

We closed on our new house on March 10th, the day before John Paul’s birthday (yay!). We absolutely love love love it. It took two weekends with the help of our family and the friends we could dupe into joining us and several more little back-and-forth trips in the minivan.

The boys absolutely love it and really never looked back once we were living there. I don’t think they miss the old house at all – which is funny and maybe a little bit sad. The new house has so much more space for them, though, plus the driveway is paved, which makes it so much more fun to ride bikes and scooters on.

Our new house has pretty much all of the things we always wished we had at the old house (fireplace! 2 of them!!), but it also has all of the things we loved about the old house as well, so we really didn’t have to give up what we would have missed. We still have acreage and woods and trails and a creek. I keep pinching myself because it is so hard to believe that we can call this beautiful house our Home. We have so much space now i don’t know what to do with it. In fact we have 2 rooms that are completely empty that we never even go in…

I hope this all doesn’t sound too braggy…I am never too far from the thought that we never, ever would have been in this place without the help of others, and that we are always indebted to them!

Of course, the biggest reason we moved is to have a better place for John Paul to grow and thrive, and so in the upcoming months Patrick and I will be talking about ways we can adapt the house to accommodate a power chair. Our PT wants to get a chair for him as soon as possible, probably in early summer, so he can start using it. Being more independent while sitting upright will both empower him and help him gain confidence, but also help his mental and physical development. The sooner he can make strides in this area the better, since toddlers grow and develop at such a rapid rate.

For the time being, we will probably set up a semi-permanent ramp from the front sidewalk up to the front door, which will be his primary access. This isn’t covered or protected from the elements, however, so we’re also trying to figure out the best way to get him into the house via the garage, which may mean expanding the mudroom out into the garage and building a ramp and a wider door. This is totally in the “let’s just brainstorm about it over a glass of wine” stage.

In the meantime, we’ve been spending every iota of our spare time (which isn’t all that much) down at the old house trying to get it ready for the market. Our friends the Coupes, who have our steadfast and tireless advocates in this drama through the past year or so, are helping us with their expertise. So far we’ve gutted the kitchen and bathrooms, torn out carpet and floors, repainted the entire house (Patrick only comes home to sleep, by the way), installed new lights new hardware, and new shrubbery in the yard, and re-graveled the driveway. The new carpet was installed yesterday, and new laminate floors will be installed this weekend. The kitchen will all be completely new, too.

It’s been quite a hectic three weeks, but we are hoping that our blood and sweat and tears (well, my tears) will get us a good return so that our house will not take too long to sell. I can’t say that I really like the idea of having three mortgages…

Here are some pictures from the new house – bear with our mess as we are still moving in!

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Our house from the back – Sam is racing me up the hill

Kitchen

Into the kitchen from the front hallway

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The view from the back deck

new house!

John Paul’s room

new house!

The van IN THE GARAGE

new house!

One of the boys’ rooms (unpacking books with cousin Monica)

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Family Room (wood stove is too big for this fireplace, which was very sad to discover. It will just be a regular fireplace)

new house!

The other boys’ room


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