SLIDER

I heart Valentine's

Sunday, February 15, 2009

Thank you for everyone's concern for Caro. She's still a little congested, but, overall, she's on the mend and doing much better than she was a few days ago.

We had a great Valentine's Day!  Bryce got me these:


and these:




and I made him breakfast this morning (bacon and gf waffles, heart-shaped gf waffles - boo yah.)

Caro's nurse came over to watch her in the evening, and we got to go out to a fabulous dinner at Raku. I've been seeing the name "Raku" pop up  on the CHOW Southwest message boards for awhile now, as THE place for great food in Vegas, the place that all of the Strip chefs come to eat after work (it's open til 3am), Vegas' secret wonder!   (Click here for a good summary of the raves by local food critic, John Curtas.)  Well, obviously, I had to see what all the fuss is about. 

Bryce made us 7pm reservations; it's not a fussy place, but you're advised to make reservations because it's tiny - only seats about 30 or so.  It's in the back of this run-down strip mall on Spring Mountain road, which only added to our feel of adventure.  The restaurant serves Japanese small plates - like Spanish tapas - and they were all simple and perfect.  

We savored the following:  the asparagus tempura (coated w/crispy rice crackers), kobe beef with garlic and miso, homemade tofu - deep-fried , and served in a savory broth (I don't care how carnivore-ish you may be, you will love this one), grilled duck w/balsamic soy sauce, grilled yellowtail drizzled w/a delicate teriyaki sauce, grilled miso and soy rice balls, pork cheeks (we weren't messing around!), and, for dessert, asian pear sorbet and bubbly brown sugar pudding. And we didn't even get to half of the menu. Snap.

I can't wait to take visiting friends and family here - it's a dining experience not to be missed (especially my Mom - this is a Japanese place she can get behind 'cause sushi is not the main thing here)!  

Caro was, as always, the cutey on VDay.  Here are some much-sought after pics of the bug:

Devouring a candy bracelet sent to her by G&G S:

"I've been caught"
"Maybe I can hide the evidence..."


"Oh well, it was worth it"

Getting ready for bed:



A Sick One

Wednesday, February 11, 2009

Caro got sick yesterday.  : (  

It turns out that it is an infection in her trach area...fairly common for kids w/trachs (she's already had a few flare-ups this winter).  Trachs get easily infected because they're basically a hole where the body doesn't want one, so the body makes a lot of extra secretions in that area in response to the constant irritation (it doesn't hurt Caroline, but the body still responds like this).  Anyway, that extra moisture + all the drooling C does anyway + open airway that can come in contact w/germs, particles, etc = Caro gets a flare up of bacteria.  

This leads to even more secretions (i.e. - very similar texture/look of stuff you blow out of your nose when you're sick - although, luckily, hers isn't really yellowish, more thick and white - tmi, yet? ; ) - once we notice that, we start to be on a full scale alert mode for possible sickness.

Then, blood started coming out of her trach with the secretions - because all of her little air sacs are so strained that some start bleeding (hmmm...maybe I should've posted a tmi warning for the whole post....oh well...).

So, we give her extra breathing treatments that have been chilled in the fridge first (making the medicine cold helps stop the bleeding) to help her lungs try to recover.

But no, the lungs/bacteria in the lungs weren't in the mood to play nice.  To which, the rest of her body said "Fine, we'll run a fever to try and kill off the infection".  And then yesterday afternoon, Caro had a fever that went from 99.8 to 102.6 in about an hour - no fun for our Little.

I always get a little scared when Caro gets sick like this, even though I've seen it before.  I think "Could this be the Big One?"  But, then I say a little prayer, and put any scary thoughts out of my mind.  I remember that Caro is way too strong for a little bitty infection to bring her down.

Her pulmonologist prescribed 3 new meds to try and kill off this bacteria/virus for good, so we'll have 3 extra meds for the next 14 days or so - meh news for us parents.   

Happy ending for Little though: her fever went down by the end of yesterday, and, while she's still sick and needs a lot of suctioning, we haven't seen the fever come back today!  She was so sluggish and pitiful yesterday (her cheeks were rosy red from the fever - no pics of that - it's just too pitiful), but today she has already getting her wiggles back.

Anyway, sorry no pictures still, but something new on the blog, even if it doesn't have pictures, is better than nothing, right?  Right.

We're still here

Sunday, February 8, 2009

Sometimes I get really excited about blogging, and other times, like the last couple weeks, I really haven't wanted to.  This latest "break" has been extra long, I know.

I have a post that I've been thinking about doing and know needs to be done, but I've procrastinated writing it.  

In the last month, we've had a few friends tell us about how their friend/family member just found out that their baby is not "normal" - that they have Downs Syndrome or Trisomy 13 or another rare genetic disorder like Caroline, that their child will be different, possibly even not be with them at all.  We get told about these circumstances a lot, because we are expected to be able to relate better than most can.  People ask if they can give our number/email/or blog info to their friend in case they want to talk with someone about their story.

When I hear that someone else has received similar news that we did, my heart gets so soft.  I want to be next to that mother and hug her and just listen as she shares what she's going through.  I want to tell her so many things.  I want them to call us or email us, etc.  But I also know that many people offered that to us when we first had Caroline, when we were told she had Trisomy 18 and wouldn't live, when we were told she would live with a 1 in 4 million rare chromosomal disorder, when she was in and out of the hospital, when she needed a trach, etc.

And most of the time, with a few very important exceptions, we didn't have the emotional energy to reach out.  Our feeling at the time was that our situation was so rare that no one could really get it (this isn't what I think anymore - few people really get our situation, but many can empathize w/our emotions), so what was the point.  We especially felt like this when we thought Caro wouldn't make it to her 1 month bday.  

But, I did have the energy to search for and read websites/blogs made by parents of kids w/special needs. So I've been wanting to write some words to that mother, and, as you might imagine, it's something that requires a bit more emotional will than, say, a post about my latest recipe find...thus the procrastination.  

And w/o meaning to, I've kind of summed up what I wanted to say to that mother in the title of my post - we're still here.  We're still here, we've found happiness again, we still have so much joy in our life.    I've learned the value of letting the future take care of itself when it comes to Caroline.  However she turns out, however long she lives, whatever developmental milestone she reaches or doesn't reach, I will love her and she will always be my beautiful girl.  

I would tell that mother:

What you've been asked to do is so hard.
Hopefully, you have a patient, loving, tactful, sensitive and courageous family around you.  (If not, tell them to get on board asap: ).
Try to ignore some of the stupid stuff people say.
Tell your story to those you can trust; it really does help to talk it through.
Ask for help, and be specific - people want to know what's going on and they want to help but they may not know what you need.
It's ok to ask "Why?" 
Some friends, for whatever reason - usually because they just don't know what to say - will distance themselves from you, but you will form other precious friendships that you never expected to find.
You'll get a lot of information about special programs, support groups, financial help, etc; don't worry if you can't absorb it all in the first few weeks and months - it will work out.
Keep a journal; just something simple.  You'll want to have a record - you'll look back and see the Lord's hand guiding you.
It helped me to record every stat of Caroline's and every move the medical team made (weight, height, O2 sat, new medicine given, latest news from the doctor) - writing that down helped me keep track of what was happening and it helped me stay busy.
Cling to your spouse; he or she is the only person on earth who knows exactly what you're going through.
You are stronger than you think you are. Seriously.

It's hard to quantify the lessons I learned/am learning. 

There will always be an ache in my heart - grief for the loss of a dream and the denial of great expectations, grief that we won't see Caroline reach typical milestones, that she has to live life in such a fragile body and that we can't hear what she's thinking or feeling. But, the intense sadness and, let's be honest, despair that I used to feel has dissipated.  

What is left in its place is love and gratitude.  I'm so thankful that the Lord considered us worthy enough to have been blessed w/an exceptional spirit like Caroline's.  I'm so thankful for the lessons she has taught me, for the character I've built, for the person I'm becoming because of her.  I'm so thankful for the deepened love and bond that Caroline has brought to our marriage.  The Lord has given us countless tender mercies along with the hardships.  My testimony of the Savior, of the Plan of Salvation, of the gospel has grown so much stronger and deeper. 

While I wish Caroline could be "normal" now, I know that, someday, she'll be whole and perfect.  Bryce and I will get to be with her and raise her and see the exceptional person she is after this life.  Because I know that, I wouldn't change what we've been given. Caroline is a true blessing.





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