L...M...N...O...P

L...is for "lengthening" his muscle. Nathan's femoral head is dead and the muscle is automatically trying to remodel and support his body. That means it's trying to calcify and turn into bone. Since the last surgery a few weeks ago, he's been on a really high dose of anti-inflammatories to fight against that and the severe arthritis in the hip. Since being admitted last week, he's on another form of that same kind of medicine--but he's also in traction to pull the muscle out by putting weight on the end of his leg for 10-12 hours at a time.

The daily hydrotherapy also seems to be working for his good. The water relieves the pressure on his hip and he's able to move and extend in ways that he couldn't otherwise. The 3 pins they removed last month had become impinged, dragging down his hip socket and limited his range of motion to about 20-30 degrees. It must be wonderful to move around after being "unpinned"...literally.

With half of his day (or night) in traction--and the other half playing various computer or animated games with fellow patients, he's pretty tied up (pun intended ;)

We had an appointment with the only doctor in Spokane that could do the work on his hip that's needed--and they blew us off when we showed up on Monday. We made the appointment as a "private" patient (with private insurance....) and the nurse coordinator told us we were "late" for the appointment and that the doctor would see us at Shriner's on March 15th. We weren't late. They just didn't want to see Nathan outside of Shriners'. But we did not schedule the appointment as a Shriners' patient. I started in on the poor lady and Jeff calmly intervened. We've been told about the hospital politics and contracts negotiations between the two hospitals...but I DO NOT care! Pain is our problem...not the Politics. And when there's only one physician in the matter that has the skills to address Acute Vascular Necrosis in a child--and we are willing to pay him the going rate with full insurance coverage and deductibles--we want IN when we are scheduled and not some bullcrap excuse that Nathan will be seen MARCH 15th at Shriners' instead! (Furious doesn't even begin to explain how angry we were at that moment!)

Needless to say, we went back to Shriners' and I had a melt-down. It was time to regroup and go back over the options. Jeff had to leave for Seattle for the week...and I started working with the care coordinator at Shriners' on the next step in getting Nathan out of pain. Dr. Tompkins had mentioned the Mayo clinic at the pre-admitting appointment in mid-February. I mentioned this to a couple of friends, one of which, her husband trained there. I e-mailed him for some referrals and he e-mailed back some names of orthopedic surgeons that he had worked with, that perform pediatric hip replacements. The procedure is so rare, that it's very difficult to find a good and experienced surgeon in this field.

After Darlene Ramelow, the nurse coordinator, told me that "the sign" was written on the wall as to what our next step should be...I finally called the Mayo Clinic Monday afternoon and got the ball rolling. In fact, I know it was the right move, because the ball start rolling very quickly. We already have patient ID numbers, all medical records have been sent, and the surgeon is reviewing the x-rays on Monday. We expect a call Monday or Tuesday with check-in dates and surgery times. The doctor, whom our friend recommended, is Dr. Robert Trousdale, and is reportedly very tender-hearted, according to his staff--and will likely bump us ahead of his already scheduled patients. He is booked well into May, but there's a strong probability that we'll be going to Minnesota sometime in March or April.

M is for...Melt-down, Mayo, Molly and Minnesota. The Mayo Clinic wanted to know if we wanted medical transport from Spokane to Rochester, MN. Ugh. I can only imagine what a medical (non-commercial) flight would cost...but as one of the PAs at Shriners' suggested--we should charge it back to the surgeon who blew us off this week. And since Monday, Nathan has been researching airfare and the airlines that fly there from here to there--as I'm sure that we will be flying commercially, just so Nathan can enjoy the novelty and "ride". We aren't sure if he's more excited to be pain-free or go on his "first" outing via an airplane. [Sidenote: Cameron has been crunching the numbers to see how much it would cost to take everybody. Agh.......right!]

The Chief of Staff, Dr Caskey, mentioned trying to get Dr Lovell in to see Nathan prior to his scheduled date of March 15th. I wasn't there when he did his rounds, but according to the nurses--no one's confident that that will happen. Ironically, it makes me feel better to know that the doctors at Shriners' are just as frustrated with this specialist, as I am. I'm still trying to work out what kind of surgeon would leave a kid in this much pain month after month.

N...is for Nathan. He's a trooper. He's taking everything in stride. He's getting a little stir-crazy and begs to go for a ride. No can do without a doctor's note. So he's changed his tune and wants things brought in, calls home incessantly, and thinks that going to Minnesota will be like going on a vacation. And with the promise of pain relief--it just well might be.

O...is for "Oh well", operations, orthopedics, and orthodontia. Nathan only had one request, besides wanting a Jamba Juice everyday--and that was to see Molly. Ashley stayed home from school to sit with Nathan today because I was running the other three around to orthodontic appointments. So, in the morning, I took the opportunity to take Miss Molly down to sit with Nathan in the truck for half an hour. It got a little crazy on the backseat. The boy and the dog lapping at each other's faces was a little gross, but they both were ecstatic to see each other.

P...is for hoping that Nathan is going to become a Pain-free Patient. We've been told that once the hip is replaced, Nathan should experience almost instant pain-relief. The down-side of the whole ordeal is his age...because that means that he'll have to have a number of hip replacements throughout his life. But technology is advancing so much and the materials are improving likewise. If he gets to 25 years-old with this hip--that's better than one year we've had since it was resurfaced and repositioned in January 2011.

P...is also for Prairie View. Yesterday, he had 2 visitors from his school...Mrs Royster and Mrs Pittz. They are working on getting a liaison with the district to get Nathan a tutor and start doing "school" while he's tied up in the meantime. He was glad to see them, but not so thrilled about their news and having to get back in the swing of things. Lazy boy! Too bad math and reading isn't as fun as playing video games or working out in a jacuzzi pool. He's looking forward to seeing some friends from school soon.

Fashionable...Coordinated...and Smart, Too!

We are on the downward spiral towards the end of another school year. Ashley has always been an excellent student...and she is definitely standing out amongst her peers.

She's taking high school Algebra, Honors English, Orchestra, PE, social studies, and science. It tends to be quite the workload at times--but she's nailing it with high marks. Report cards come mailed when you reach the middle school age. So this was a particularly awesome moment for her parents! And along with acing state exams for the last three years--she's well on her way to some scholarship potential.

She also recently took part in the state Solo and Ensemble competition, performing Bach's Jesu, Joy of Man's Desiring on the viola. Her judge said that she had some amazing talent that would highly benefit from a private teacher. She told her to memorize the piece she played because it would be one that she would be performing for the rest of her life, at weddings and such.....for money.

You can't see the whole outfit that Ashley is wearing...but it's very classy black and white ensemble. And it is complimented by just what every girl needs--a matching pooch to complete her wardrobe. Molly is definitely enjoying being the baby in the family...and favors Ashley for more than her preference in colors.

Where did this kid come from??

What do you think he's up to now?

Do you ever look at kids and just wonder where did they come from? Holy cow! Happens to me all the time--but more often with one particular child, then any of the rest. Cameron, aka: Cam-daddy. He's a tinkerer...a boy that has wanted to know how things work, from day one. The stories of things that he has done still seem shocking--like dismantling deadbolts from exterior doors with a butterknife because "I no like them!" at the tender age of 3; completely disassembling a very expensive toy firetruck because he wanted to know where the sounds and lights were coming from; all the way to helping his dad wire outlets and lights in the basement--all of which were to code and passed inspection!

And the list just seems to be getting longer--with taking apart laptop computers to diagnose problems for fun. [Did I mention that he tried to put gasoline in a toy lawnmower because it wasn't working properly? He has always put two and two together and comes up with FIVE! It was before he realized his was plastic and didn't have blades either.]

One of the latest crazes in Cameron's line of thinking is computers. There's the family computer. Mom's computer. Dad's computer. And occasionally--an antique that shows up along the way. Cameron came across an old laptop that was destined for the trash bin. But he salvaged it for an exploratory project. He wanted to extract the hard-drive and see how the screen was installed. [Who really thinks about why screens work and how they are installed? Not your average kid, that's for sure.]

"Mom, did you know that they put tape over parts that say 'Do Not Touch'?" Why, Cameron--I did not know that, because it would have never occured to me to take it apart, in the first place. Need a soldering gun? No. Not today, sweetie.

What? You are going to put it back together? Why not? He had the time, dad's tools, and a lot of tenacity for an 11 year-old. Did I mention he has an uber-amount of curiousity?

It was like watching a doctor perform a computerdectomy. Or at least a electronic autopsy. He harvested the hard-drive, all the while asking and answering his own questions. "Did you know that the hard-drive is only this big and has (fill in the bytes or numbers, because I'm clueless to what it means)....ram in it?" And he continued on with disassembling the screen and putting it back together. Yep. All in a day's work. And I'm still wondering where did this kid came from....

Happy Valentine's Day!

Valentine's Day is about sharing loving sentiments with the people in our lives. We find creative ways to tell them that we love them, right? Cards, candy, chocolate, flowers, bling...it all adds up to quite the day. School parties, excessive sweets, and random terms of endearments complete the foray of events for the average child. And sometimes, even though it only comes once a year, it just plain gets old...if you know what I mean.

But we did something different for Valentine's Day this year. The packs of cards were getting cheesier and cheesier. I didn't know if I could bide my kiddos sending terms of affection to their peers on Justin Bieber or Spongebob Squarepants cards. So I stepped out of the easy box and decided it was time to have a little fun. I've been inspired by pinterest...and it has allowed me to supplement run of the mill traditions with some fun new twists. Thus, the solution to the Valentine quandary was settled.

I saw some cute candy bar wrappers that people had made from a picture of their kids. They were simple to make. And with my mad couponing skills--I had loads of candy bars to work this out. So in a matter of an evening, we whipped up all 120 of our Valentine's!

We started with the great pictures of the kids. Some where definitely more into than others. (Note the picture of Braden. Yes. It's one of 20 that look just about the same, but from different angles. There was only 1 of Cameron...but he got it right on the first shot. Such a difference in personalities is remarkable in one family...but that's another story).

The puppy had scratched Cameron's face from his nose to almost his ear. The heart was strategically placed...on purpose, to avoid the questions later. Beats photo shopping, right?

Oh my. Braden's always this perky. I didn't have to plead with him to get this done either. More like I had to plead with him to stop before he ripped the heart before I got to everyone else with it!

We couldn't seem to cover Nathan's shirt. He's a total ad campaign for childhood and his current attitude about everything. At least he smiled a great smile, although it took him a while to warm up to the camera!

Someone didn't want to be left out. There was no way I was making everyone in all of her classes one of these babies! Ashley got 10...for teachers and close friends.

Jessica will do anything you ask her to. I told her that we were making our own Valentine's this year...and she jumped right in to do her part. In fact, she was the only one who worked with me till the very last candy bar was wrapped! Such a die-hard crafter!!

It was a family affair. Jeff took care of getting the prints to the right size for me. We were able to get 2 pictures per print and they were a cinch to put together.

The Results: 120 pretty cool Valentine's. I was the party coordinator Jessica's class today. I got loads of compliments from all the mom's helping out. I ran up to Nathan's class afterwards, and got the same fanfare. Kids are funny. The bigger the candy, the better the Valentine. Go figure. They were a lot of fun...and I'm already thinking about what we can do for next year! And knowing that we are going to need at least another 120--I'll have some time to maximize the savings on whatever we do.

After school, all the kids and I sat on the couch looking at their haul from school. There was candy galore and I asked if anyone had any Snickers on their cards. Nope. The closest we got was a Milky way...and that just wasn't going to be satisfying enough. Bummer. So I went to lay down (darned head cold!). Jeff called the kids before he got home and asked the kids what he should bring me for Valentine's day. They all said....a Snickers bar. So guess what was placed on my pillow this evening.

At least he got the kind with two bars in it, so I could share, after we all enjoyed the steak and roasted potatoes dinner that he and Ashley prepared! It was a lovey day with my lovey ones.

Super Femoral Ball Weekend

Superbowl Weekend. 5 February 2012. What do I know about football? That it's the craziest, best tailgating, food weekend of the year! That's when the neighborhood looks like a parking lot because hundreds of people have converged together to watch men in tights throw a brown ball around wanting something called a Touchdown!

But we had a crazier weekend. We had a Kid-down! Nathan had been complaining for days about a heightening pain in his left hip. Whiny doesn't even begin to describe him. I feel bad because what to do, what to do--when we're already doing it. But things came to a head on the blessed Superbowl Sunday, when I called Shriner's' to describe his pain and get some advice on what to do. "Take him to the ER" was the verdict. Oh Yeah. Not excited about that prospect. That usually means a direct admittance with a "do not get out soon" card attached. But the pain he was describing sounded like another fracture. So we wrapped him up and set off for the ER before the game started.

I'm only referencing the game so much because when we got to the hospital it looked like every drunk, homeless person, and mentally ill character in Spokane decided that Sacred Heart Medical Center was the place to watch the big game. We were weeded out fairly quickly and sent onto the pediatric emergency room. Can I just tell you how that alone is a reason NOT to socialize health care in this country!

Nathan's pain was out of control and they tried to start an IV on him several times. His veins kept disappearing, collapsing, and twisting under the nurses care. They brought in rubber gloves filled with hot water to lay on his arms to help plump up a nice vein. No luck. The ER doctor finally nailed a vein near his elbow. He moved the "hot hands" to around his neck to try and relax after the ordeal. I snapped a couple of pictures because it was so funny. Our home teachers had just called wanting to know if Nate needed a blessing but he wanted to wait till he got home. I told him that we had our own kind of "laying on of hands"...and he wasn't too impressed with my humor.

So what's the big deal?

This is what a normal femoral "ball" or head looks like. This is Nathan's right side. The pin was place last year as a precautionary step on the surgeon's part--but is otherwise normal and healthy.

This is Nathan's left hip. Note that there is no "ball" or head to speak of. His hip has collapsed, with arthritis swelling the bone matter. Cartilage has deteriorated down to nothing and it's bone rubbing against bone in there. Three screws were removed in a grueling surgery five weeks ago because they were causing impingement in the hip. His range of motion was bad and he hurt. But the dilemma--he had less pain 5 weeks ago...then today.

Hours and hours later...with x-rays and MRI results in hand, he was diagnosed with Acute Vascular Necrosis in his left hip. We already knew that from his past surgeries at Shriner's, but he was admitted for pain management and to have the surgeons that specialize in hip replacements look at him the next day.

Now we are in a waiting game. The surgeon that came in Monday morning was only a partner to the one that specializes in pediatric hip replacement. She noted that his white blood counts were in the range of normal but his inflammation markers were highly elevated. Something is definitely going on in the hip, but without infection present, there was no reason to open him open and do anything just yet. She admitted that something needed to be done--but she was a little alarmed by his age and freely admitted that it was out of her range of practice.

They kept him on some high doses of IV meds but I convinced her that we could do an oral pain regimen at home till we meet with Dr Lovell next week at Shriner's'. I didn't want to leave him alone to go home and take care of the rest of the crew if we could make him comfortable. Thursday will not come fast enough, but at least we are on the way to knowing what we can do to help Nathan get back on his feet and back to school.

There comes a point where you just want the pain to go away. He's young. He's had eight surgeries already, with several more to come and that is more than most people have in a lifetime. This has been a challenge for 3 1/2 years. That's a quarter of his life already. The clock for his hip replacement has been sped up 20 years, then 15 years, then 5 years--and now we'll know whether to fuse or replace this year in 5 days. Crazy!! We are hoping for a major "touchdown" for Nathan and his hip next week!