holly, justin and ojaio

Great Strides 2011

2011-05-27T09:00:00.000-07:00

Here is a short film that Justin and Ojaio put together for our Great Strides team, Liam's Legacy for Ojaio's Hope...

If you would like to learn more about Ojaio and what living with CF entails, or to make a donation, click here.

Big Sur

2010-07-10T10:18:00.001-07:00

People Like Eva

2010-02-12T10:59:00.000-08:00

I don't know what to write about this. I just want you to know. This is real. This is someone I've been rooting for for a few years now. She is amazing. Eva, and everyone else who has lived with CF, and shared their story with the world. People like Eva who have touched the lives of others, spreading awareness for this disease. It's people like Eva that have changed CF for my Ojaio.

Beautiful Eva.
Thank you for your legacy.
You have been and will always be an inspiration to me.

65redroses.livejournal.com

Unhappy Hipsters

2010-02-01T09:11:00.000-08:00

This makes me laugh...

Coming Soon...

2010-01-29T23:32:00.001-08:00

Cedar Street Stitch Co.
...Organic...Recycled...Handmade...

Stranger

2010-01-05T22:02:00.000-08:00

A few weeks back I had an interesting conversation with a stranger. Somehow it came out that I have a daughter with CF. It's rare that this fact comes out while conversing with strangers. I don't like to tell everyone. I definitely told more strangers right after Ojaio was born, I don't know why, perhaps as a way to process it all? Though, for some reason I had to tell this stranger, who is also a mother, that my daughter has CF. Was she asking about preschool? I don't remember.

This stranger was very talkative and blunt, but very genuine and concerning with the many questions she asked me in regards to being a mother to a child with special needs. Questions like, "Is it hard for you to be friends with parents who do not have a child with special needs?"

This intrigues me. Being a first time mother to a child with CF means I will never know what it is like to have a child without special needs. On the contrary, parents with "healthy" children will never know what it's like to have a child with special needs. Obviously, right?

Yes, for me it creates a little bit of a divide. I can't always relate to the worries of other mothers. Concerns over routine vaccinations when Ojaio was poked at least 100 times in her first year of life, or forking over money on trendy baby clothing and gear when all of mine goes to prescriptions and food/supplements. Not to mention my "oven" that may never be filled again with a "bun". However, I love all of my mom friends with healthy children and can't get enough of them. We may not have had all of the same parenting experiences, but they listen to me whine and vent, and there are some experiences we do share. But that's not what this post is about.

This is about a comment that this stranger made. I wish I could remember it word for word, but all I remember was the gist of it. She basically told me that parents with healthy children feel guilty for having healthy children. Like they cheated. She was obviously grateful for her children's health, but also feels kind of like I took one for the team, you know? At least this is what I gathered.

I remember growing up and hearing about parents with children with special needs. It always seemed like they were held on such a pedestal. It was so tragic that they were put into this situation. I felt sorry for them. How did they ever go on with their lives?

When I was pregnant with Ojaio, probably around five months pregnant, at which point we knew I carried the CF mutation but Justin's status was still unknown, we were watching TV and just happened to come across what must have been a news special on a woman living with CF. We sat and watched all of the pills and the medications. We listened to the statistics and the life expectancy, we heard the hoarse voice and nasty cough, and we saw The Vest for the first time. I sat and thought to myself, "How could I love my child if I have to go through all of that with her?" I'm just being honest. I really could not comprehend being the mother to a child with CF. It wasn't at all what I had planned for my child. There was no room for all of that stuff this woman on TV had to do! Even though it was a very uplifting special on CF, discussing the wonderful new treatments and what not, I saw nothing but sadness and resentment. I saw doom.

It saddens me to think back to that moment. How could I ever feel that way? Ojaio is my everything and I will do whatever it takes to make sure she lives the longest and healthiest life possible. Not only do I love this creature the same as any other mother loves her child, but I love her more. Having a child with special needs, a child with a chronic, life threatening disease has taught me how to live. My child has given me the best gift second to the gift of being her mother: the gift to truly appreciate life. To stop in the moment and take it all in. To stop worrying about the silly things.

Today Ojaio and I went to the beach. Yes, the beach in January. It was a beautiful day, at least 75 degrees with no breeze allowing me to bask in the So Cal sun wearing only a tank top and cuffed jeans. We had a picnic and Ojaio made sand angels and sand castles and chased after the seagulls and the pigeons. Her curious eyes followed the lifeguard in his truck with concern until he was out of sight. I just laid on the blanket watching her the entire time. I couldn't take my eyes off of her. Admiring her beauty, her contagious smile, her curiosity. She has a beauty that's raw and wild.

Sometimes I feel like I'm high. Really. Since having Ojaio in my life, it seems as though all of my senses have been heightened.

For me, life stands still. I often catch myself smiling in a daze while staring at my girl.

Sure, having a child with CF is a lot of work. More often than not my life is very serious and there's a lot of pressure to get everything done every day. I've seen my 5'6" frame weigh only 103 pounds due to stress and depression. At times I torture my heart and my mind with the what-ifs of Ojaio's future, and some nights I have to shut myself in the bathroom while I try to calm and quiet a gut wrenching cry usually stemming from the feeling of "it's just not fair".

But most of the time it isn't that way. By now I've gotten used to the extra work and the nighttime-cries have been coming fewer and farther between. It's more than likely you'll find me feeling high nowadays (not literally, I promise!).

Before I finish up this post I'll leave you with one more memory...

You know when someone's expecting and you ask them, "So, do you want a girl or a boy?" Then they reply with, "I don't care, as long as it's healthy." Well once, after having Ojaio, I asked a coworkers husband this question. He of course responded with, "I don't care, as long as the baby's heal... uh," he stopped. It was obvious that he remembered he was speaking with Ojaio's mother. I then added, "Yes, healthy is a good thing!" Talk about awkward.

It's true though. Everyone wants their baby to be healthy. It would be cruel to want otherwise. However, it has been my experience that an unhealthy child or a child with special needs isn't doom, it's just different.

My kid is so cool.

2009-12-29T23:24:00.000-08:00

I really wanted to get into a good, regular blogging habit. But then Christmas and work and bills and husband on vacation and child and child with runny nose and new years and.....you know. So this is all you get. No witty words (not that I ever consider my words to be witty), because who needs words when you have this?

Yes, she has a wand tucked into her tights. And yes that is a pink breast cancer awareness cape tied around her neck, falling between her wings.

My kid is so cool.

How's composting treating you?

2009-12-13T11:06:00.000-08:00

Great, thank you! I thought you'd never ask.

What's that? You didn't ask about composting?

Well, now you must be wondering. Right?

It's going well.

I did have to make some changes though.

It became mushy.
It got muddy.
It started to puddle.
They were drowning.
They straight up stunk.
Were stinkin' up my garage I tell you.

I dreaded feeding them because it became such a let down. Every single time I went out to the garage they'd stare at me. I could see those little beady worm eyes peering at me through the rubbermaid (do worms even have eyes?). They were begging me to let them out. To let them wander free. They were sick of burrowing into their poop only. They needed earth also.

They needed to be free.

So I dug a hole in my backyard.

Poured everything in.

Added some veggie/fruit/toilet paper roll/dried leaf scraps to the mix.

Mixed it up.

Covered it with the lid.

Held it down with two rocks (can't let my Australian Shepherd get into it).

And walla!(wha la? waa laa? whala?)

All of the necessary changes have been made.

And they're actually sticking around. They stay in the hole (this is where the food is).

They're happy. I'm happy. Justin's happy the garage no longer smells.

Then there's my inner farmer girl. Yep. I have one of those. Now my inner farmer girl gets to put on dirty shoes and use a shovel once a week. Thanks dad for helping me discover my inner farmer girl when I was a wee little one. Mowing the lawn at ten. I love you dad!

I Stink

2009-12-10T22:17:00.000-08:00

Upon waking up this morning...

Justin: "Ojaio, it's cold. Why don't you get in bed with mama so you can cuddle and stay warm."(I'm always the last one out of bed in the morning).

Ojaio: "But her bweath stinks and her armpit smells funny."

Yup. So I've been told.

Later on Justin's carpool work buddy Jake came over. This is Ojaio's highlight of the morning. She's such a little flirt. While shooting the breeze with Jake, standing at the door, she decided her bare feet were too cold. What better to warm them with than with her "glass" Cinderella high heels? I thought pink Hello Kitty slippers, she thought Cinderella high heels. Of course.

And then we did her treatment...

I love this little woman.

Spontaneous Clapping

2009-12-08T21:30:00.000-08:00

When I was in college I lived in an apartment on Sims street with a couple of friends that I met where I was working at the time. It's funny to think back to those days. Funny and fun. Some of my fondest memories on Sims were with my roommate Dawn.

I love Dawn. We bonded over our virgo tendencies and our same time break ups with our same named boyfriends. Dawn and I would stay up really late watching Fashion Trance and Sex in the City...and HBO's Real Sex. She was a couple years older than me. I never told her this and I don't think I really knew it at the time, but I looked up to her. Dawn would advise me with school and boys and everything. She was like an older sister to me(cheesy, I know).

When I left for Italy to study abroad, Dawn started her career. We all left Sims and somehow we lost contact. However, thanks to good ol' facebook we found each other. And now we're "friends" again. I had to write that. Sorry.

In five years a lot can happen, and a lot did happen. While I was busy with my Ojaio, Dawn was busy too. With a lot I'm sure, but also with having and fighting breast cancer.

Well. She fought it! After blog stalking her for the last few hours I've done some serious catching up. She blogs about everything Dawn. I just love it and I thought I'd share Spontaneous Clapping. I'm so proud of my friend.

2009-12-02T23:00:00.000-08:00

Ojaio Makes Me Laugh

2009-11-25T00:32:00.000-08:00

"As I was saying, some people go to sleep. Then they wake up and see a bum outside."-Ojaio at dinner tonight.

"It's a sonic boom."-Ojaio says of her drawing of circles and squares with dots in the middle.

"Who talks like a million pounds?"-Ojaio says to make her dad stop talking.

"I'm going to live in a pink house at the beach. You can live in one of the rooms at my house mom. I'm going to have a pink comforter. I'm going to have a pink car that everyone can fit in. I want to catch pink fish Dad."-Ojaio on her favorite color.

"Mama's not an outside bum, she's an inside bum."-Ojaio describes what kind of bum dad is calling mom.

Once upon a time...

2009-06-04T08:32:00.000-07:00

... there was a flower girl named Ojaio.

Chosen by the lovely bride, my cousin Jenny and her new husband Elliot.

With flowers in her hair and a basket of rose petals in her hands, Ojaio slowly "step togethered" down the aisle, practically placing each petal at her feet. The guests smiled as her mother and father giggled and cried with pride and joy. Once the ceremony began, she waited patiently on the steps with the bridesmaids. At one point with a disgruntled look on her face, she peered into her mothers eyes, lifted her gown, reached her hand behind and fixed her wedgie.

As we were directed to bow our heads and pray, she noticed her mothers eyes were not shut, and loudly questioned her, "why aren't you closing your eyes?"

Once the wedding ended, she hammed it up...

...she posed...

...and posed some more...

...and took a picture with g-ma.

Just taking advantage of being together and dressed up...

It was such a beautiful wedding, and we had so much fun being a part of it. Thank you and congratulations to the newlyweds!

Ojaio Dali

2009-05-06T12:29:00.000-07:00

The other night after returning from the market, Ojaio had this beautiful illustration waiting for me. Apparently, it is a drawing of Mommy holding a balloon.

How adorable is this! This was the first time Ojaio actually tried to draw something specific, and look how good she did! I wouldn't be surprised if she ended up with a talent for art, as her daddy is a natural. I'm just excited. I think I'm one of those rare parents that would be just as excited to see my daughter become a starving artist, as I would be to see her become a rocket scientist. Maybe even more excited!

PFT update

2009-05-05T12:16:00.000-07:00

There really is no update. I haven't heard anything from the CF clinic about rescheduling the PFT for Ojaio. I think they're giving me a break from taking off of work. They only schedule infant/toddler PFT's on Thursdays, which is the only day I work during the week. We scheduled the PFT three times, and twice the clinic made scheduling mistakes, and then the third time, well, you know. The hospital shooting incident. So this is what I've gathered, they're probably just giving it some time. Since I feel Ojaio is sooooo healthy right now, I just don't feel the need to push for the test right now anyway, so I'm not calling either. It's been a nice break from the CF funk!

Look How Big My Girl Is!

2009-04-22T14:56:00.000-07:00

Photos by Mark Nisbet

It gets worse.

2009-04-17T09:01:00.000-07:00

Unfortunately, since the incident at the hospital we have learned that the three involved employees were all from the outpatient pharmacy that we have been getting Ojaio's medications from for over two years. The man who did this was our "pharmacy buddy". I'm stunned, confused and appalled by it all. I just can't get my mind around it. If you don't have a child on seven medications, then just know that our relationship with those at the pharmacy is similar to the ones of those at our local Trader Joe's. We see these people on a regular basis, we joke, they have nicknames for Ojaio, and we confirm our address with them. It is just too bizarre and tragic.

What the...

2009-04-16T13:59:00.000-07:00

The beginning of our day was perfect. Ojaio was 8 hours npo (without food) in preparation for sedation at one. I woke up at three a.m. and fed her milk with instant breakfast to hopefully curb any hunger she may have had later. She ended up sleeping in an hour later than usual, meaning Daddy and Mommy were also able to catch some extra z's. When we woke we did her treatment, I stretched, and for the first time in months I went for a run. As she was npo, I didn't have to fit in three meals before our noon check-in at Miller Children's. This morning was a smooth morning. After Justin packed snacks and enzymes, and I cleaned the nebulizer cups, we headed out the door. As we drove to the hospital I reflected on how together I felt, how at ease we all were, how late we were not. It was a good morning and we were on our way to get this PFT over with.

We walked into Miller's and I handed Ojaio to Justin so I could sign us in at the front desk. Suddenly, a woman runs down the hall which connects the children's hospital to Long Beach Memorial, frantically shouting over and over, "GET OUT. SOMEONE HAS A GUN! SOMEONE HAS A GUN!". We ran. We were right next to the entrance, so it took literally seconds to exit the building, but it was so surreal, I can't even explain. We ran out and told everyone on their way in to stay out. Literally seconds later, police cars and regular looking SUV's arrived carrying men with machine guns. Ojaio and I went to the car parked in the parking lot, and Justin stayed to film. He had his camera to hopefully get some footage of the procedure, and ended up with gnarly footage of Miller Children's and Long Beach Memorial on lock down.

Apparently, from what we have gathered, at the end of the hall that the shouting woman came down, there is the main hospitals ER. In that ER an employee of the hospital shot two other employees, and then went outside and shot himself.

Needless to say, the procedure was canceled for the third time. We drove away with a confused Ojaio shouting, "I thought I was going to get an IV?". We are just so grateful that we are all safe, and our hearts go out to the innocent people who were shot, and those who had to witness it. What a crazy day.

CF funk/PFT

2009-04-14T16:10:00.000-07:00

Lately I've been in a funk. This thing seems to come and go, and right now it is here, and it won't go away. I hate that most of what I blog about is CF related. My original rule for this blog was no CF, but I just can't help it. I find myself trying to blog about something, and it always ends up being CF related. I'm in a CF funk. I can't stop reading other CF blogs, if you have one, I've read it, but I probably haven't commented.

I do go through periods where I feel like I forget about CF. Ojaio's treatments are as normal and easy as brushing teeth or taking a nap. Then the smallest thing happens and wham! CF funk again. Random fevers. CF funk. Have to pay full price for Ojaio's vitamins now. CF funk.

At Ojaio's last appointment her doctor discussed doing one more infant/toddler pft before she gets too big for the test. I really wasn't looking forward to this, as it requires sedation, but I understand the importance of having one more accurate measurement of lung capacity and function while she is small enough, before she begins trying it the big kid way. After a couple scheduling mistakes on their part(CF funk), we have finally scheduled the test for this Thursday. Last year when we did this, I was the only one with Ojaio, making it a very long, stressful day. Fortunately, this time Justin and I are both off work for this test. It requires an IV and sedation, so we are all dreading this. We would love and appreciate positive thoughts and prayers for everything to go smoothly, for all to stay tough, and that the results are spectacular.

Ojaio Lux is 3!!!

2009-03-25T13:52:00.000-07:00

Thank you Mark for the amazing photos!!!
March 21st 2009...

Tuesday Night Fever

2009-03-04T13:36:00.000-08:00

Actually, I believe it began three Sunday's ago. The Sunday following Ojaio's CF clinic appointment she came down with a fever. I noticed the 101.8 degree fever right before I put her down for bed. Being one of those mom's that doesn't bring it down until it reaches 102 degrees, I let it be. The next day it was in the 99's. A few day's later she gave me reason to believe that the fever was nothing but a stomach bug, and I didn't think much about it. The following week I noticed a couple of times that she felt a little warm, so I took her temperature, which was somewhere in the 99-100 degree range. Again, no symptoms. Last night before I put Ojaio down for bed I noticed that she was really hot. This time her fever read 102.6 degrees with no symptoms again! What is going on? I brought this one down with ibuprofen (which meant a 7 mile trip to the nearest 24 hour CVS at 1:00 am, since I am a horrible mother and all I had was INFANT Tylenol and INFANT ibuprofen of which were both EXPIRED). She woke up today with a fever still, so I took her to the pediatrician to make sure there was no ear infection or sore throat, and she found nothing!

The mysterious fever. I guess there is something viral going around this flu season, where children have been getting this high fever usually with the runs, or with cold symptoms or a rash. Ojaio has none of these and her lungs sound "extremely clear" as her doctor put it. This along with the pediatricians scale putting Ojaio at the 50th percentile made me very pleased! However, prolonged low grade fever can be cause for concern with CF patients. It could possibly be an indication that something may be growing in her lungs even though her cultures have been coming back clear. So, I was instructed to call the clinic to see what they think of the situation. Basically, do we wait it out and see if anything comes of this fever, or do we run tests, do x-rays, take another culture or the dreaded past due bronchoscopy?

I'm thinking we'll end up waiting a little longer. Hopefully it is nothing.

Pause...delete....sike! The CF nurse just called as I write this. Ojaio did culture something with her last swab. Nothing serious, but they will be giving her an antibiotic, as they believe it could be causing this fever. So there we have it. I can stop pacing around the house like a tweaker worrying and wondering. My belly feels hungry again. I guess you could call this good news.

CF Article

2009-02-28T00:24:00.000-08:00

My CF mama friend Froggymama brought this very hopeful article to my attention. Crossing my fingers over here!!!

Clinic Appointment

2009-02-13T14:35:00.001-08:00

Today we had an 8:15 CF clinic appointment!!! I am thrilled to inform you, that Ojaio has finally gained a chunk of weight!!! I forgot to get the exact amount, but it was enough to put her right ON the 25th percentile (as opposed to below). HEAVY CREAM IN MILK WORKS!!! I thought she felt a little heavier, and it was obvious that she had gained in height. Everyone was so happy with her.

We did have to tweak a few things though. Since our last appointment we had blood work and x-rays done. Her vitamin levels came back a little raised, which means we just decrease the amount of vitamins she takes. Another change is that we have increased the amount of enzymes she takes, because I don't think things were quite right in this area (I'll spare you the details here).

Her doctors and respiratory therapist were all pleased to know that she has been doing her vest treatment at the pressures and frequencies that were increased with our last appointment. She is such a responsible little woman.

I have been keeping this somewhat quiet for a while, but I'll put it out there now. If you have noticed, I haven't been complaining much this flu season about a sick child doing four treatments a day. Knock on wood please. This is because Ojaio has only been sick once in the last seven months!!! And even then, it was a four day cold with no fever and no cough!!! I know this is considered bragging, but you better believe I let every single person who walked into that room today know.

While CF appointments can be exhausting not only in their length (today it was three hours), you also have to be extremely on point when discussing every little detail about CF symptoms and medications. Fortunately, my wonderful sister got her butt out of bed really early today, and came along with us!!! It was so nice to have her there to distract Ojaio who is usually playing pat-a-cake with my face, while I speak with everyone. Thanks Auntie Lolo!!!

CF Recipe

2009-02-04T08:00:00.000-08:00

This is one of my favorite Jamie Oliver recipes. We eat it almost every week in this household. It's one of the only things Ojaio will sit and inhale, and it is especially good for her because of the high calories. The icing on the cake is, if I cut the spinach up finely it sticks to the noodles, and Ojaio can't pull it off! I thought I'd share it for CF mommy's, and all mommy's with little ones that hate their veggies as much as Ojaio does.

P.S. Double Cream ='s Heavy Cream
P.S.S. Even though it calls for slicing, I press the garlic so Ojaio doesn't get a chunk of it.

Ojaio Says The Darndest Things...

2009-02-02T08:00:00.000-08:00

Ojaio: Do bop do la poo.
Me: What's that?
Ojaio: That's how you say it in Spanish.

At times, I will repeat a word in Spanish, hoping that eventually it will sink in with Ojaio. She always asks what it is that I'm saying, so I explain to her that it's the way you say it in Spanish. She doesn't miss a beat.

Last week while driving in the car after watching the inauguration all morning , I hear this observation come from the back seat...

Ojaio: Mommy. Obama is the FIRST president.

It's funny what they pick up on!

The other day I was reading a book to Ojaio about a pigs tail which led to this fun conversation...

Ojaio: Mommy, I want a tail.
Me: But humans don't have tails silly.
Ojaio: But daddy has a tail, he goes potty with it?

Yikes!

Say Hello to My Little Friends...

2009-01-27T22:48:00.000-08:00

Yes. I started composting. I've been wanting to do this for so long now, and finally, I did it. I received a pound of these little guys in the mail two days ago!!! It was really creepy opening the box. I kept imagining them crawling out onto my hands as I opened it, like they would just be thrown in there with nothing to contain them. Instead they were kept in this cute little cloth pouch closed with a draw string, and then insulated by paper shavings. I'm so excited. Now I get to waste less, and create my own organic plant food.

Yesterday, after their first night in the garage I went in to check on them and some of the worms were trying to escape! Eewww!!! I immediately became a priss, doing a little tip toe dance while screeching. Then I realized Ojaio was watching so I had to get my act together. We took them to the sunlight and one by one I put them back into the bin. I added more water to the bedding and fed them. I haven't opened the bin since the escaping incident, and I've yet to see any peepers, so I thinks it's safe to say they like their home now. Yeah!!!

Winter Beach Bums

2009-01-16T10:34:00.001-08:00

Good People Doing Good Things

2009-01-03T14:28:00.000-08:00

The Good Cause T-Shirt Project

Buy this shirt here, and 100% proceeds will go to the Cystic Fibrosis Foundation!

Christmas...

2008-12-27T15:52:00.000-08:00

A new car from Papa G and Nancy...

A Hippie Tipi from my mommy and daddy...

Ojaio inside the Hippie Tipi...

A tipi makes treatment time soooo much more interesting...

Hangin' with Auntie Courco at Lola's house after opening presents all morning...

Back to more opening at Grandma and Grandpa's house...

Finally, onto G-ma's house. Thanks for all of the pink princess gear G-ma!...

Our extended family is very large. On Christmas day we had three places to be, and managed to eat, open presents, and hang out at all three destinations! Surprisingly, it felt like the most relaxing Christmas that I had had in a long time. Thank you everyone for all of the gifts, and as always, all of the love!

National We Go Graphics II

2008-12-23T22:00:00.000-08:00

A few weeks back Justin and I had a piece in an art show. It has been a very, very long time since we created anything together. I still don't know how we pulled it off considering I still have a hard time finding time to shower! But we did, and it was fun...

Bureaucratic BS

2008-11-13T09:22:00.000-08:00

For the last two and a half years I have learned many things from dealing with hospital, pharmacy, and health insurance obstacles on a regular basis. I am grateful that I was born a patient person, but the last couple years have taught me that patience and kindness does not always work. Sometimes, being your child's advocate forces you to "kick and scream."
Today, I was summoned to jury duty. I was unable to give an excuse over the phone, and was forced to show up at the courthouse at 7:30 in the morning. What this meant for me? Well, since Justin had to leave for work by 8:15am, I had to spend the night at my parents house, so that my step-mother could be there for Ojaio in the morning. I had to pack it all up. The vest, nebulizers, sippy cups with high calorie additions, other medications, and two loads of wet clothes (our dryer just happened to stop working yesterday). An all day ordeal, added to the already jam packed routine we have going for ourselves.
So I show up at 7:30am today, and end up being the first person at the window to hand over my excuse. My excuse being that I have a daughter with special needs that require my attention throughout the day, and I am financially unable to pay someone to perform the necessary tasks that are required of her disease. Previous to this, a woman announced reasons to be excused, and one of them was, if you are a stay at home parent that does not work between the hours of 5am and 8pm, Monday though Friday. I thought I had a pretty legitimate excuse right? Wrong! The lady would not excuse me! Why you ask? Because I work one day during the week, from 12pm until 4:30 pm. The only time during the week that I can get a sitter that is free, and that I can trust. So the woman next to me, a stay at home mom with a healthy child got to walk out with no problem, two-years free of being summoned. Me? I was forced to postpone. I was given the option to stay until noon to speak with a judge, but I had to get to work. You better believe I kicked and screamed over this one! Not that it changed anything.

I Heart America

2008-11-04T22:38:00.000-08:00

My heart is dancing, my mind is clear, and I can breathe. Thank you America.

Busy, Busy, AllTheTime...

2008-10-20T22:59:00.000-07:00

Road Trip to Los Gatos For A Wedding...

Poser Family...

Ojaio Getting Her Groove On...

Silly Family...

Silly Ojaio...

Spending Time With Auntie Courco...

Birthdays, Anniversary, Weddings, Life... Just busy...

Pathetic

2008-08-21T13:46:00.001-07:00

I'm sore from mommy and me swim lessons. Enough said.

My Little Surfer Girl

2008-08-19T09:56:00.001-07:00

A Few Chocolate Chips Help the Medicine Go Down...

2008-08-18T14:16:00.000-07:00

Last Thursday Ojaio's clinic called to let me know that she cultured staph. Staph is not as serious as pseudomonas(which she has cultured before), but it is definitely not a good thing either. Luckily Ojaio's doctors have decided to treat it with an antibiotic to attempt to eradicate it from her lungs. I really hate when I get these calls.

Growing bugs like this is seen with the natural progression of CF. Justin and I have become very good at living each day, one day at a time, and find hope in all of the amazing research for CF and the progress that has already been made. For instance, in 1950 the median age of survival for someone with CF was only 1 year. 1 year. In 2007, the median life span for someone with CF was 37.4 years! The CF Foundation is actually aiming to add 40 new adult CF specialists in care centers nationwide... because there is a demand for it. We are very hopeful.

It always amazes me how Ojaio can take eight medications throughout the day on a daily basis, and then you add an oral antibiotic twice a day and she freaks. I pride myself lately in getting very creative with my mommy manipulations. How horrible does that sound? First I tell her that I called the pharmacist to ask them to make her cherry flavored antibiotic taste like her pink Hello Kitty chapstick that she LOVES. So she smiles. Then I let her know that once she is finished taking it she gets three chocolate chips. It works like a charm!

...le donne...

2008-08-07T23:33:00.001-07:00

Cats and Milk

2008-08-06T22:34:00.000-07:00

Yesterday Ojaio had her CF clinic appointment. Overall it was a very positive appointment. The Doctors didn't change anything, they were not worried about the cold, and they seem very happy with what she is eating. Ojaio weighs 25.4 lbs. and gained about a centimeter and a half in height. This puts her in between the 10th and 25th percentile for height and weight combined. The goal is at least the 50th, so as always we have some gaining to do. We also received the allergy test results which revealed that Ojaio has an allergy to cats, and that the numbers were slightly elevated for milk. Cats...never really liked them anyway, possibly because I've always been allergic to them myself. The milk thing has me on edge though. I would estimate that more then half of her caloric intake is from dairy. The doctor said he wasn't that worried, but that it is something we should watch. Hmmm. So, around cats Ojaio's eyes may get itchy, and she will most likely become more congested. No one with CF needs to become more congested. So, "would if" every time she has dairy she gets a little congested? I'm doing my best not to stress, but I just can't help it. I've become quite the hippie in my day and all but seriously, soy sucks! For many reasons I'm not a fan. Obviously we will do what we have to do, but I will be praying that milk does not become an issue!

Too Long....

2008-07-30T22:55:00.000-07:00

I really don't even know where to begin seeing as though it has been a whole month since I last posted. Since then we have been a busy family with a life! I love summertime! To follow up from my last post, the sweat test went very well. Of course I forgot to take pictures of the cool stuff, like when they itch tortured Ojaio's arm with the device that stimulates the sweat glands. But I did manage to get an adorable picture of Ojaio playing outside with her "bracelet" on as the sweat collected.

Then there was our first vacation in two years! Lake Tahoe!

Road Trip! Ojaio slept almost the entire way there, and the whole way home. We(Justin) drove at night which obviously helped.

Justin and Ojaio freaking mom out...

Ojaio being cute again...

The Tahoe gang...

On the 19th Justin and I went to the first Pipeline to a Cure Event for cystic fibrosis. It was such an amazing night. Justin and I were both so pleased and shocked by the amount of support CF has received from the surf community. The night was so much fun. Good food, great music, over $400,000 raised for CF, and a touching speech by Emily.

Surf legends signing a paddle to be auctioned...

Social Distortion playing acoustic... pretty darn cool...

Other then these main events, we've just been enjoying summer. Spending time at the library, park, beach and pool. If all goes well we will start swim lessons in a couple of weeks! Oh, I almost forgot to mention, Ojaio caught a cold. I'm so bummed. Happy because she didn't get sick for a good five months at least, but bummed because it's never fun when anyone is sick, especially a little cfer. It seems to be a very mellow cold, and we have already started on treatments 4x a day, so hopefully she'll kick it quickly!.................Holly.

Salty Dog

2008-06-29T22:56:00.000-07:00

I remember one of the times that I kissed Ojaio while she was in the NICU before the official CF diagnosis was made. My dry lips almost burned as they were so heavily coated with the salt that her body had purged. Until this point I still had about 1% of hope left in me that she did not have CF. It was at this moment that I let that hope go, cried a little, and nicknamed Ojaio my Salty Dog. One of my favorite Cat Power Songs will forever be "Salty Dog", and I sang it over and over to Ojaio as I sat holding her in a rocker in the NICU at CHOC for endless hours and days waiting, and waiting, and waiting. I had read that sometimes people with CF were a little bit saltier than those without. Their bodies do not regulate chloride channel transport correctly because of the mutated CFTR gene, so they lose a lot of salt.

Because the mutated genes that Justin and I carry had both been established before Ojaio's birth, genetic testing was done on Ojaio to see if she had inherited these, and of course she did. Another way that CF can be diagnosed is through something called a sweat test. Even though Ojaio was diagnosed through genetic testing, her new doctor has ordered a sweat test. I guess having sweat test levels in the records is standard protocol. Our appointment is tomorrow at 11:00. It should only take thirty minutes or so. I'll take pictures for fun to be posted.

Oh those crazy days...

My Girl

2008-06-19T23:29:00.000-07:00

Ojaio thinks all flowers are dandelions.

Transworld Surf CF Article

2008-06-19T22:30:00.000-07:00

So it's not new information, and nothing too big, but Transworld Surf quoted Justin in an article regarding CF and surfing. I just think it's cute...

Breathe Easy
Surfing helps create new treatment for Cystic Fibrosis
Michael Kew
June 2008

When your sinuses are clogged, many swear by a dunk in the ocean to loosen things up-sometimes to the disgust of those in close proximity. But most folks don't know that saltwater can also ease the symptoms of a much more serious, mucus-related problem: cystic fibrosis.

Affecting about 30,000 Americans, cystic fibrosis (CF) is a life-threatening genetic disease that causes mucus to congeal and clog certain bodily organs, particularly the lungs, which makes breathing quite difficult, promoting infection. Traditional CF treatment entails any number of methods from intravenous antibiotics, chest physiotherapy (basically banging on a patient's back), nutritional enzyme therapy, and lung transplants.

But several years ago, Australian physicians observed that surfers with CF had improved lung function compared to other CF patients. Scientists theorized that when surfers inhale saltwater, it helps clear the thick mucus from their lungs. So could shred sessions be a key to treating all CF patients?

Last year, California's Ambrey Genetics hosted "Breath Of Fresh Air," a day of surf instruction at Newport Beach for kids with CF. Jamie O'Brien and his dad, Mick Dunlop is in the process of creating the Mauli Ola Foundation ("Breath of Life" in Hawiian) that will help make such surf days happen for CF kids around the country-and hopefully the world.

"The discovery that surfing may have health benefits for people with CF did lead to the development of a remarkable new CF therapy," says Cystic Fibrosis Foundation's Lily McCulchan. Researchers conducted tests to see if inhaling a mist of hypertonic saline (i.e., sterile, ultra-salty water) would help people with CF-and voila, a new form of therapy was born.

"With CF, it's all about preventative measures," says Insight's Justin Reynolds, whose two-year-old daughter has the disease. "It's incredible that surfing can be utilized as such."-Michael Kew

The Walk

2008-05-23T13:36:00.000-07:00

Last Saturday was the Great Strides walk for Cystic Fibrosis. We had a really nice turn out! It is always such an overwhelming experience, just to be surrounded by so many who come from the same planet as I do. By that I mean, many who attend the walk completely understand what our family is constantly dealing with. They or their caregiver understand the stress and everything that goes along with having cystic fibrosis in the family. What is even more overwhelming is all of the support that we receive. A couple of girls that I work with showed up, one of my mommy friends, Corey and Amy, Chad and Lyndsea, many people from my dads side of my family, and some friends and family of my cousin Megan (Liam's mother) who I didn't get a chance to meet. My uncle Dan made these awesome visors that read Liam's Legacy for Ojaio's Hope (our team name), and my boss donated two gift certificates for the raffle. So far our team has raised $10,755, which is amazing! If you would still like to make a donation visit my homepage . Donations can be made toward our team up until September. Thank you to everyone who showed up and or donated to support the Cystic Fibrosis Foundation. We are so grateful to have such wonderful, giving people in our lives!

Nap Time Now

2008-05-09T13:56:00.000-07:00

Last nights post should have been ended with...It's 12 at night and we will continue this chaos with a 9a.m. CF clinic appointment tomorrow morning. We are home from that appointment now, so I'll briefly update you on Ojaio's health, and then I promise I'll change the subject.

It was only 2 and a half hours which is relatively short for a CF clinic appointment, and overall the doctors are pretty happy with Ojaio's health. I am too. I have never felt as confident in Ojaio's health as I do right now. She eats wonderfully, she has tons of energy, she hasn't had a cold in two months (knock on wood), and I feel we and the doctors are being both aggressive and efficient. Her FEV1 percentage achieved by the PFT we did yesterday (discussed in my last post) was right where it is supposed to be, and her vitamin and liver numbers taken from her last labs were all in the right range. Her last throat culture grew enterobacter, which is a bacteria she has been growing for some time, so this particular doctor wants to treat it with an oral antibiotic. Not a serious bacteria for someone with CF, this doctor just wants to be very aggressive. I think I trust her as she comes from one of the best rated clinics, which is in Minnesota.

So enough about CF.

A few weeks back, the weekend before Justin left for Bali for two weeks, he and I had a date. It was the first time we had one on one time in a few months, so it was much needed. What did we do you ask? We went fishing....after I made him take me to dinner first of course! We actually had a lot of fun. We sneaked into a golf course late at night, and slayed bass. Look at what a dork I am with my serious fishing face on!

The day before Justin left for Bali we took Ojaio to the beach. It was such a nice family day! I love that Ojaio enjoys the ocean so much.

That's all for the moment. I need a nap.

PFT day.

2008-05-08T21:54:00.000-07:00

Today was hectic. We woke up at 6:30 and I rushed to give Ojaio her milk with her instant breakfast no later than 7:00a.m., following her doctors order as we anticipated sedation at 1:00p.m.. Then it was the usual... breathing treatment, dishes, laundry, feed the dog, with the added preparations for a day at the hospital. I decided last minute that we needed to stop by Target to pick up a magazine and two new books for hospital entertainment, and with my mind in the typical hospital stressed out anxiety filled blunder, I put Ojaio into the car without a pull-up on! As I went to put her into her seat she protested, and being in the previously mentioned mental state, I kind-of snapped. So then she cried and wet her pants IN the car seat. That just did not need to happen...really. So we finally got to the hospital at noon, registered, and then the chaos really begins.

When Ojaio's doctor called me about this PFT test, she mentioned that it was new for this hospital, but that she had performed it many times at the hospital from which she transferred from in Minnesota. What she failed to mention, was that it was training week for the infant/toddler pulmonary function test, and that Ojaio was the second toddler to be used. (A PFT is something that has been around for quite sometime, but for younger ones it has to be done differently, with sedation).

So I get to admitting, and the lady looks at me like I'm crazy. SHE's going to have a PFT? I'm then directed to respiratory care, and the lady here gives me the same response. So she sends me to the nurses at the actual CF clinic (who I'm told are anticipating us), and they don't even believe me! Does anyone but me know what’s going on around here? Finally, someone takes her darn height and weight and they put us in a room. The doctor comes in, we chat, and she takes us up to get Ojaio an IV.

EEEEEW! Hospitals are so dirty, and this one has a corner filled with toys! After waiting here for ten minutes the nurse comes over to put hot packs on Ojaio's hands, and is bribing her with the dirty toys that I've spent ten minutes doing everything I can to distract her from. Look at the darn chart lady, she has CF! Get those dirty hospital toys away from us.

So this older nurse comes over to do the IV, and Ojaio screams. I hold her body, and put her legs between me, as two other nurses hold her arm and wrist. The old lady nurse gets it in the top of her hand, begins taping it, and it pops out. Blood squirts all over her, all over Ojaio, all over the floor! She then curses and tries to tell Ojaio that she's going to have to calm down in a very mean, authoritative voice, which of course makes my two year old with a needle coming at her even more upset. Thank goodness she gives up, and one of the other nurses in a very calm and confident manner manages to get it in. This ended up being the best IV Ojaio has ever had actually!

We are then taken up to the room for sedation and the PFT. Our 1p.m. appointment is turning into a 3p.m. appointment (not unusual at all), and when we get into the room Ojaio is a mess. Hungry, way too tired, and pissed off about her "boo boo". I sing her into a drugged up sleep with "Twinkle Twinkle Little Star", and she's out. Of course while going out she was crying, and when she cries she sobs, and when she falls asleep sobbing it can go on for hours while she is sleeping. Apparently this only happens in 1 out of 400 children, and apparently it can be a problem when your trying to do a pulmonary function test. Perfect!

They try a few things to stop the sobbing that don't really work, but they keep on doing the test anyway. So there I am eating my trail mix, sitting next to the sedation doctor (who I assume took some of his own medicine because he's practically falling asleep) in charge of charting Ojaio's vitals every minute or so. Then there are four other CF docs, three nurses, the guy who actually created the software for this machine, and Ojaio in a plexiglass box that slides shut, with a mask stuck to her face with putty, and about 6 wires attaching her to machines. My little lab rat. It sounds horrible, and for a second it made me nauseous, but then as her sobs subsided, and as things began to work, I felt a sincere interest in this machine. One of the doctors began explaining how beneficial it is to be able to have PFT results at such a young age, and the different ways in which this will be used to Ojaio's advantage. He was like a little boy in a candy shop. It was wonderful to experience this excitement that filled the room, and I felt reassured that these doctors actually have passion for helping my daughter live. I am very grateful for that moment.

So we finished up, went up to recovery, ate a couple pop sickles, cuddled in a warm blanket, went home, cooked dinner, another breathing treatment, and more stuff......it was a crazy day! The only thing that really bummed me out is that I left the camera at home. Darn it!

ojaio's 2nd birthday!

2008-04-08T23:07:00.000-07:00

justin took a day off from work on ojaio's birthday so we could spend the day together.
we went to the mall to ride the carousel, and ate lunch at wahoo's.
in this picture ojaio is wearing the dress that justin got her for her B-day!

how it all began....

2008-04-08T22:45:00.000-07:00

....with love of course.
i fell in love with justin the instant i met him, but didn't admit it until he came to see me in paris....
we spent seven months together living the crazy life that is lived before conceiving a child. and then we found out we were pregnant. got married.
had a baby and two years later here we are.
my purpose for this blog is to keep in touch. i hope it works...

2008-04-08T22:31:00.000-07:00