Fixing One Piece at a Time

Nick's in pain. I don't think he could have predicted that three months after the accident, some things would be hurting more than they did originally and quite frankly, that's probably a good thing. Handling recovery one day at a time is easier when you believe that every tomorrow, you'll be a little bit more healed.

For the first two months his broken teeth were exposing nerves that couldn't be fixed until he could open his broken jaw. Now that he can do that and the dentists can get in there, it's exposing deeper issues. He's now got a bunch of temporary crowns, but the molar with the new root canal was originally cracked vertically, and the two month delay allowed infection to creep into the tooth and, they fear, his jaw. This is not good news. He's on antibiotics and says he feels a difference, so fingers crossed they're working. Normally Nick doesn't even take aspirin, so when I see him obeying doctor's orders to take pain meds I know it's bad.

He spent many more hours with Courtney and has seen the root canal specialist five times so far (he's the one currently monitoring the infection) so he's getting there: about halfway done with his teeth.

As for his hand, at least we know one of the reasons it's still hurting: There's a small spot on his wrist that was slivered in the crash, and in the months since, the ligaments attached to it have pulled it outward like a little V. The hand doc said to leave it for another six weeks and if it's still an issue, he'll go in and cut off the protruding piece of bone. Why he needs to wait six weeks I don't know, because as far as I can tell that bone isn't going to pull itself - against the will of the ligament - back into place. Maybe the idea is Nick will just get used to the pain? In any case, it seems to be somewhat fixable.

His eye isn't fixable, but the way it currently looks is. Looks, that is, not looks. :) One week from today he'll be getting the prosthesis, the front part that looks like an eye. (Stay tuned for before and after pix...)

Taking time to smell the roses...



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After reading Corinne and Francoise's comments (below), I had to laugh when I passed the window this afternoon and saw this:

Pretty soon he'll hardly have to bend at all!
(The huge yellow rose on the tiny plant is by his left leg.)


    

Slip Sliding Away

"Oops. I'm still wearing my slippers!"

Both Ilona and Acacia busted up laughing, but I'm pretty sure Acacia - Don't Look At Me - Cofman would have preferred if her mother had not been walking around Bed, Bath & Beyond looking like an institutional escapee. The last time I left the house in slippers I noticed as soon as I opened the car door and stepped in a pile of slushy snow - I'm quick that way - then squelched my way into the Christmas play of one of the girls' friends. An important part of being a parent is embarrassing your children, and I take my role very seriously.

Ilona and Michel were here this weekend on their way to here. The girls were very confused. They arrived Saturday evening and left Sunday, but they'll be back again next weekend after some days of visiting friends and sorting out their stuff in Santa Fe. And then, for the first time in my life, there will be grandparents living nearby. (Mine all lived in Holland and my parents are in Canada.) This, as Martha Stewart would say, is a good thing (having them near that is, not in other countries).

So while they were here they stocked their new place with cleaning supplies and toilet paper and all those things they won't have time to deal with but will be glad they have when the moving van arrives. Which means that I had to shuffle around City Market as well, while Acacia kept her distance. Did I mention I was wearing a skirt? Yup. Those furry slippers were in full view...

It's fun being a Mom!

Annelise

Imagine beginning every day before the crack of dawn, squirming into a life jacket-like vest attached to an air compressor that vibrates your lungs until they give up the mucus they've been holding onto. Twenty minutes of this and breathing through a nebulizer machine which mists a salt solution directly into your lungs, and you're ready to face the day and say good-bye to the machines - until bedtime when you do it all again, only this time you also get two rounds of a foul-tasting antibiotic, and a medicine to help break up the sticky DNA that is released into the airway when the white blood cells fight chronic inflammation. That's 40 minutes, twice a day.

You're only six years old, but you're already an expert pill-popper, because you can't eat anything without first swallowing a bunch of capsules, something you learned to do before you were even potty trained. Twenty-five enzyme pills a day, in addition to five other medicines, every day of your life. And that's another thing - life. When you were born, the median life expectancy of someone with Cystic Fibrosis was 35 (which is actually much higher than it was not long ago, and lower than it is today: 38. yay!). That probably seems like a full life to an almost-seven-yr-old, but your parents would disagree....

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I knew almost nothing about Cystic Fibrosis before Annelise was born to our Durango friends Jen and Courtney, sweethearts from Nick's high school in Colorado Springs. The chances that both of them were carrying the CF gene was infinitesimal, but these guys are a rare pair. I remember them driving back and forth to the Children's Hospital in Denver soon after Annie was born, but I didn't know until recently what they were going through emotionally and how difficult their every days were (and I'll never truly know), because they aren't complainers. Instead, they'd ask about Cayenne who was born with immature kidneys - a condition that fixes itself - to make sure she was doing all right.

Cystic Fibrosis doesn't fix itself. It never will. So on top of the 80 minutes a day of breathing treatments, the normal daily routine (lots of volunteering at their kids' school, after-school activities, homework, dinner, etc.) and two often-stressful jobs (she's a doctor, and he's a dentist), they find the time to be tireless fundraisers, because research is the only way to cure their bursting-with-personality, nothing-can-hold-me-down, I-can-do-anything-my-athletic-tough-older-brother-can-do, little girl.

But this is how Jen describes their life:

"While this is in no way what we would have chosen for our child, there have been more gifts in it than not. We have really grown to enjoy the time spent one-on-one doing the therapies and it has given us all a much greater appreciation of the miracle of life and the gift of health on a daily basis. We are all much more present and connected than I think we would have been otherwise. That being said, it is a HUGE hassle, and we grieve the little things that are hard for her to do, but we are pretty much hell bent on doing them anyway! We take a gas powered compressor camping and on river trips. We have travelled to Mexico and intend to make many more trips in and out of the country. She does sleepovers, sports, anything she sets her mind to we make it happen. Despite it all she has had a pretty normal childhood…in as much as being the local poster girl for cystic fibrosis can afford."

(Isn't she awesome?)

So why am I telling you about this? Well one reason is Nick has spent all day in Courtney's dentist chair getting his teeth worked on (still much work to do) so I've been thinking about the Heinickes, but another is research and testing and more research and screening and clinical trials have come up with something promising: They've developed a drug they call VX-770, which in trials has changed the lives of the patients using it. They can run and breathe, sleep well and not get ill all the time. The bad news is this drug only targets one of the many gene mutations a person with CF may have, and this particular one is carried by only 4% of the CF population.

The good news is it's one of the two mutations Annie has. WooHoo!

It's not a cure. But it is a huge advance and I know seeing it on the horizon has made every bit of their endless efforts worthwhile. They are going to Colorado Springs this weekend for the annual CF Walk. Jen told me that because Annelise doesn’t know many others with CF, she sort of thinks the hundreds of people that participate are really there just for her. But this year her photo is actually on the Colorado Springs poster, so who wouldn't think that, right? She told her brother, “See, I really am famous!”

So the final reason I'm writing about this is I noticed that this here blog has been clicked on exactly 5,155 times (you guys rock!), so I thought maybe I could get on my soapbox and spread the word about CF, and if there are any of you who weren't really aware of this life-threatening condition which deeply affects 600,000 people in our world, hopefully you now know a little bit more about it. I learn more all the time.

If you're interested in helping out, here's a link to click on that will direct you to Jen's page.

www.cff.org/Great_Strides/JenHeinicke4492

Thank you!!

Annelise, Jen, Leland and Courtney

I'm climbing off my soapbox now...

PS: If you read this after this weekend, no worries, you can still donate through the page, and if they've already reached their goal, no worries about that either - they'll just have to raise the bar! Because as Cayenne used to say when she was really little:

If at first you don't exceed, try and try again!

Okay, this is me... stepping off the box...

Happy Mother's Day!

Happy Mother's Day to my wonderful Mom who has dedicated her life to raising five kiddos and to my Mother-in-Law who is currently en route to Durango (via slow boat) where she'll be able to fully enjoy the life of a Grandmother. To both of you amazing women, I raise my glass to honour who you are, and all you've been. Prost!

.

Every day is Mother's Day, right? Well, not really. If it were I'd be pretty spoiled: Cayenne brought me breakfast in bed, Acacia picked sunset-coloured flowers from the garden (and put them in a vase that belonged to Nick's grandmother), and Nick cleaned the kitchen. If every day were like this, I'd be lazy and there'd be nothing to celebrate. ♥


Motherhood is pretty trendy at the moment. A squawking robin alerted us to the babies-to-be in her nest in the huge juniper by the non-plum tree. Three gorgeous blue eggs we would not have known about if Mama had just stayed quiet; there's something faulty in her species-preserving gene, methinks. I'm sure there's a lesson in this, but I'm just not seeing it...

On a sadder note, in yesterday's Herald was a story of a Mama Bear and her two cubs, one of whom had been hit and killed by a car. I'm not sure which was more heartbreaking, the photo of the little (10lb) bear's fluffy, floppy body, or the one of the mother and sibling watching from the woods, waiting for her baby to come back.

Even the plants in the garden have new baby shoots, but this spring they've been disappearing at an alarming rate. We were blaming the ubiquitous chipmunks until a huge stalk of a tree peony got chomped. Not one to stand around, Nick took action:

Certain the guilty party was in the wood pile, he taped a huge plastic sheet (the one we'd successfully protected the apple blossoms with) to the walls and ground so the critter would be easier to catch. A mouse could have escaped anyway, but this was going to be a very fat mouse... It had dragged a huge piece of peony a decent distance. Nick was pretty sure he knew who it was. Last year when he was cleaning out the fountain, he dismantled a rodent's home. It looked at Nick with huge black eyes and they stared at each for a second before he and his rabbit-like ears scurried off. Not a normal house mouse for sure, but very cute.

Nick was ready to meet him again. Bigger. One by one he tossed logs over the wall, until suddenly the mouse jumped out and tried running up the wall - only the mouse was a huge rat, he was a she, and she was so laden with newborns, she only made it halfway up the wall. Those big black eyes and upright ears slipped back into the wood pile, until Nick tossed one of the last logs and we got her to run into a plastic bin. One of her babies had fallen off so we picked him up and reunited him with his Mama. They went for a ride in the Beast (the old blue Land Rover) and we set them free in the forest, far enough away that She and Nick will hopefully not meet again.

It's hard to tell, but she's at least 6 inches long.

Be free Mama Packrat!

I was going to end the post there, but look what just arrived at the door:

I'm one lucky Mama.


     

Update on Nicolas

The surgeon who removed Nick's eye is good at what he does, but is a space cadet when it comes to details, such as forgetting to write Nick a prescription to leave the hospital with, for example. So when he originally told Nick to see his eye doc in Durango six weeks after the enucleation, who would then send us back to ABQ the following week to see the surgeon and then the ocularist to have the prosthesis made - I was doubtful.... Both ABQ specialists were going to have an appointment ready for that week? Was the surgeon taking care of that?

The six week mark arrived, Nick saw the Durango eye doc who called the surgeon, who said, "He doesn't need to see me anymore; here's the number of the ocularist." The ocularist then told us he's a month out.

Very frustrating! Nick could have set up an appointment a month and a half ago and he'd have had his new eye by now, but instead has to wait until June 3rd. Oh well, he's not in pain, the good eye is 100% healed and he's not bothered by how he looks. He doesn't wear a patch, nor does he offer an explanation - as he watches people squirm as they actively avoid looking into his left eye - as to what happened. It's pure Nicolas! Oh gosh, it makes me laugh. We're so different we fit together like a dovetailed box.

Nick's sternum is feeling strong enough we can squeeze when we hug him; his jaw has healed; his hand hurts but he uses it for everything, and I can tell by the returning muscle in his forearm that it's actually working. It's not 100% though: The bone has healed but there's something else going on as well. When he smashed it against whatever he smashed it against, it hurt the tissue or maybe a ligament or something else as well. The swelling in his index finger knuckle is still marked. He has an appointment at the end of the month to see the hand doc again, and will ask him what he thinks, but probably time will heal the rest.

His teeth have been temporarily tended to, enough to eat anything. He's had one root canal, but soon he'll start the process of getting a bunch of crowns. Five, maybe? He has an appointment in a couple of weeks to spend an entire day in the dentist's chair. My jaw aches thinking about it!

So there you go. That's what's up with our Nick. It's been the status quo for a while, thus the posts about the rest of the family, but thought getting a date for his new eye was my cue to update you.

And don't worry about us in a deep freeze. It's like summer again and Acacia's snowman barely made it through the next day. Colorado doesn't let go of its winters too easily... but hopefully the apron strings are now officially cut!

So long, Frosty.

(See the plum tree to the right of the yellow wall? No blossoms. Bummer!)

     

May Day! May Day!

What a strange day. Seems Mother Nature thought the daffodils and tulips would look prettier covered in snow, and as stunning as it is, the plum, apple and pear blossoms are not impressed. We'll be lucky to get any Reine Claude plums this year now, but at least this time it won't be because of a raccoon feast. (I always secretly hoped all those raccoons had vicious bouts of diarrhea after the pilferage.)

Then after the dark, ominous sky warned us all day of something coming, we got the news that Osama bin Laden has been killed and is in American hands. Time will tell if it will make any difference to al-Qaida's mission... I worry the celebrations may be premature (and have issues with celebrating murder in general). That we have Osama's body is huge. Huge for Americans to know there is no doubt about his identity, but also huge to his followers: Muslims are to be buried within a day of death, in a Muslim cemetery facing Mecca. At a guess, these things aren't going to happen. Although it needed to be done, we may have just ripped apart a hive of killer bees.

U.S. Embassies please beware.