Our Great Strides walk in Yorba Linda was today, and it was awesome! Our team, Go Gwena Go!, raised more than $5,135 for cystic fibrosis research. Gwena walked about half a mile and had a great time.

Thank you to everyone who came out to walk with us, and all those who raised money or made a donation to cystic fibrosis research! It really means a lot to us.

More pictures to follow!

Genius Baby!

Gwena had her 18 month checkup last week and they asked me if she could say 6-10 words. Ha! Try 32! Here they are:

mama
dada
uh oh
up
down
hi
bye
eyes
ears
toes
belly (bellybutton)
boom
dog
bear
bird
baby
book
ball
apple
milk
back (as in "put it back")

pee pee

poo poo

elbow
eyebrow

peeka (peekaboo)
Oui-Oui
Doudou
Mickey
blankie
cookie
keys

Of course there are a ton of words she can understand but not say, and a few she will repeat after I say them but never says on her own. So yes, that's right, I have a genius baby. ;P

The End of our Clinical Trial

Well, we returned to Stanford and finally had Gwena's second pulmonary function test, or PFT. She is now done with her clinical trial, and has a real prescription for the study drug, hypertonic saline! Here are her PFT numbers for last year and this year:

	last year	this year
FVC, ml	91%	76%
FEV 0.5, ml	80%	81%
FEV 0.5/FVC	88%	106%
FEF 25, ml/sec	76%	97%
FEF 50, ml/sec	59%	103%
FEF 75, ml/sec	56%	73%
FEF 85, ml/sec	57%	11%
FEF 25-75, ml/sec	57%	96%

They told me for the ones that went down, they think she was closing her glottis and the result wasn't accurate. Most of the numbers went up! Yay!

Last year's report said, "Early obstructive changes at the small airway level and with evidence for air trapping."

This year's report says, "Fairly normal flows and volumes without evidence for obstruction."

YES!!!

We don't officially know yet whether we had the real hypertonic saline (7%) or the control drug, isotonic saline (0.9%), but I will be very surprised if they say she had the control.

Hypertonic saline is a pretty new treatment for CF (the study on it was published in 2006) and this is the first time it's been studied in kids under age 6. I think it's an amazing thing and I'm so glad Gwena was able to start on it at such an early age!

Baby's First Lung Infection

The past couple of weeks have been pretty tough. About 5 weeks ago, Gwena developed a cough. She had a fever for about a day, then the cough seemed like it was getting better on its own, and then it got worse again. I called the CF clinic and they put her on amoxicillin for two weeks. The cough improved but didn't entirely go away.

On March 1st I spent the day packing for what was supposed to be our last trip up to Stanford for the ISIS clinical trial. That day Gwena had a runny nose, but no other symptoms. We drove up that night and the next day, her cough started to get worse. Thursday morning we starved and sleep-deprived her for her infant pulmonary function test, took her to Stanford, and found out that because her cough was so bad (the worst it's ever been, I'd say) and they heard wheezing in her lungs, they couldn't do the test.

They prescribed her a steroid (Prelone) and we started her on it right away. She finally got to sleep and eat and we decided we might as well head for home. As much as I had tried to avoid catching what she had, by this time I was also suffering from a stuffy nose. We drove about half way home, then stayed the night in a motel. The next morning we drove the rest of the way, straight to her CF clinic. They prescribed her a new antibiotic, Bactrim, and did a throat swab culture.

Three days later, on Monday, Jon left on a business trip to New York, and Gwena and I went to visit my folks. The steroids my poor baby was on turned her into a crazy little terror, but we still had fun and she got to spend some good time with her grandma. The clinic called me to let me know Gwena had cultured Moraxella catarrhalis, which should be sensitive to the Bactrim.

We're all home now, Gwena is off the steroids, and her cough has improved considerably, though it's still lingering. We have a new appointment for the pulmonary function test, on March 31st. Hopefully the M. cat will be gone by then!

EEG Results!

This update is late, but Gwena's EEG result was in on Tuesday, much faster than they said it would be! They said that it was perfectly normal!! We are so relieved to hear that, even though it means we may never know what happened last week. Her doctor said maybe it wasn't really a seizure, maybe it was just "well, I don't know." Thanks doc, that's very informative!

I've had an awful sinus infection this week, and Gwena has had a cough and had a fever on Wednesday. We're both doing a lot better now, but we had a tough week. We've been resting a lot and watching Fraggle Rock on Netflix streaming. Gwena now knows which button to press to start the next episode! She loves all the songs and for me the show brings back happy childhood memories. An episode is ending right now, and Gwena is dancing to the end credits song. So cute!

A Scary Thing Happened

On Tuesday Gwena woke up in the middle of the night and wouldn't go back to sleep. She rolled around, she talked to herself, for what must have been at least an hour or two before she finally went to sleep again. When she woke up in the morning, she was fussy. She rolled around on the bed next to me, seemingly still half asleep, fussing and fussing, like she sometimes does when she has gas.

All of a sudden I saw her body shudder. It was a cold morning, so I figured she was shivering with cold. I drew her to me and tried to warm her with my body and the blankets, and as I held her that shudder happened again. It was like her body made one big twitch. She started crying more and it happened again, and kept happening, every few seconds. I began shouting for Jon and throwing things at the bathroom door.

Jon got out of the shower and I told him what was happening. He took Gwena and I remember the terrible look on his face when he felt her body shudder. We threw clothes on, put Gwena in her car seat and left to take her to the emergency room. I sat beside her in the car and covered her with some blankets. She was staring out the window vacantly, but when I said her name she turned and looked at me. She didn't seem to be twitching anymore, and as we started to drive, she closed her eyes and fell asleep.

I called her pediatrician's office and spoke with a nurse there, who said Gwena was not in immediate danger and we could bring her to their office rather than the emergency room. We got the earliest appointment we could, for a few hours later, and went home to wait. Gwena woke up at home and I nursed her and fed her breakfast. She sat on the couch and I put her favorite video on, and she just stared at it, tired and out of it.

The pediatrician said it could have been a seizure, and ordered an EEG and referred us to a neurologist. She said it was a good sign that Gwena didn't lose consciousness and that she was alert and responsive while it was happening. She said that sometimes a child will just have one unexplained seizure and then never have one again. We hope that's all it is.

The rest of that day she seemed extra tired and fussy, but by the evening she was back to her normal self. Wednesday we went to CF clinic, where everything looked great and her weight was 20 lbs 15 oz. They increased her zantac and want more blood work to check her iron levels. Dr Y didn't seem concerned about the possible seizure when I told her, but then again she is a pulmonologist, not a neurologist.

Yesterday we took Gwena to CHOC for her EEG. We were told to not let her go to bed until 10 the night before, then wake her up at 6, and not let her nap until the test. She napped for 10 minutes during her saline treatment before I could finally wake her up again. She was alternating between out of it and fussy when we got there, then started screaming as the tech began attaching things all over her head. It was hard to see her so scared and upset.

When he was done he wrapped her head in gauze. Then I got to lie on the bed with her and she fell right asleep. They flashed a light at her for a couple of minutes, then turned it off. The test went on for a while and I almost fell asleep too! Gwena wasn't the only one sleep-deprived from getting up at 6am (an hour I prefer to ignore the existence of!)

At the end of the test we had to wake her up, which it turned out nothing but a cold washcloth could do. Poor baby! She didn't open her eyes, but began to cry and scream, then he removed the cloth and she conked out again.

The tech said it was a very successful test and we should expect results in 7-10 business days. Is it just me or is that a really long wait??

Words, Words, Words

Gwena has been learning new words all the time now. I'm so proud of her, but it's also been frustrating, because sometimes she'll learn to understand or say a new word, and then will refuse to cooperate when I try to show someone else. Or else she'll completely stop responding to the word the way she was. Like with "nose" for instance. It was the first body part word she understood; we asked where her nose was, and she grabbed it every time! But then she learned "eyes" and got very confused... now she'll point to her eyes when you ask for her nose, or point to her nose and say "eyes".

I need to get some videos of her talking and otherwise being really cute, but the memory on my camera (aka my phone) is currently full, so I'll have to delete some stuff and/or move the picture and videos to my computer first.

These are the words she can currently say or at least try to say, in no particular order:

mama

dada

uh oh

up

hello "eeyo"

bye bye "bah bah"

eyes "eyesh"

ears "eesh"

toes "doe"

dog "dah"

cat "kya"

boom "bao" (when she falls down)

bellybutton "buh"

book "bah"

She also understands a lot of words that she doesn't try to say. I don't think I can list them all but here are a few:

kiss

clap

wave

sit

dance

twirl

arms up

milkies (aka mama's milk)

mouth

teeth

baby

I'm sure there are more... maybe I'll add more later if I think of any.

It is so fun to hear Gwena talking and see her understanding and responding to things I say!

The Return?

Wow, I am the worst blogger ever. I'm back now, at least I hope I'm back, and should be posting more frequently from now on. I can dream, right?

So here's a quick summary of what's happened the past few months:

End of October: Moved out of apartment, put stuff in storage, went to stay with in-laws for "a week or two" which turned into seven.

November: NaNoWriMo! Somehow managed to write a 50k word novel while being a Municipal Liaison for Los Angeles, but living in Orange County! O_o

Early November: My sister Becky left for Taiwan, where she is now teaching English. :'(

Mid-November: Mom had her last chemo treatment. Met my sister Allison's boyfriend for the first time. Went to an awesome CF event for free and met some other CF moms.

Early December: Found and rented a house, but didn't move in as it was infested with cockroaches. Painted in said house, sprayed and fogged to kill the bugs. Went to Jon's company's work retreat. Made another trip to Stanford for the ISIS clinical trial, Gwena weighed 19 lbs 10 oz!

Mid-December: Finally moved into the rental house, despite still seeing the occasional cockroach.

Late December: Christmas stuff! Made some of the presents I gave and hope to post pics later. (Right.)

This week: Finally got internet in the new house! Woot!

Today: Finally posted on my blog again!

NaNoWriMo Win!

I just pulled off a come-from-behind, 8.5 k words in the last 5 hours of November, exhausting National Novel Writing Month win! Huzzah! I can't write any more about it though, because I have no more words. More later, hopefully.

Halloween 2010

Yesterday we dressed Gwena up and went to some Halloween (sorry, "Harvoween") festivities at Jon's family's church. She didn't have any idea what was going on, but got really excited by all the people and commotion. We had our hands full keeping her from landing face-first on the asphalt, since her desire to run around seems to have outstripped her balancing abilities. She didn't eat any candy, but she did pig out on bunny graham cookies, or "crack bunnies" as we like to call them.

Gwena was dressed as Ponyo this year. When Jon and I watched the movie a few weeks ago I knew that would be the perfect costume for her!





The costume consisted of a red Christmas dress and large white bloomers from Children's Orchard and a green bucket from Party City. In total I paid about $13 for the costume, and every piece of it gets to be reused!

Last year, in honor of Gwena being born on Talk Like a Pirate Day, we dressed her up as a little pirate baby.



Red and white striped onesie and black pants from Children's Orchard, plus red and black cloth scraps to make the sash and bandanna. About $4 total and the clothing was reused for months to come!

Quitting Caffeine, Again

My body is very sensitive to caffeine. A few weeks ago, I had a cup of coffee one day, a coke the next, and an Excedrin the day after that. Ever since then it's been a daily choice between caffeine or a withdrawal headache, so I've been drinking a lot of tea.

My husband never has this problem, because caffeine never has the slightest effect on him. He can drink it every day and not become addicted, and he can drink a large cup full of espresso shots and then go right to sleep. This was a problem for him in college, since he could never stay up late to write a paper.

But back to me and my addiction. I've decided that it's now time to quit, again. I've quit caffeine many times in my life, and it's actually much easier than many people think. I always cringe when I hear about people quitting cold turkey. There is an easier and far less painful way! Yesterday I had a cup of tea, today I'm having 3/4 of a cup of tea. In a few days I'll be down to a couple of sips, and then I'll be free.

Don't get me wrong, I love coffee, tea, coke, and other caffeinated beverages. I even love caffeine itself, for staying up late or for mornings when I haven't gotten enough sleep. But I hate being addicted, I hate being a slave to it. Dropping everything and running to the kitchen to make tea because I forgot and I've started to feel the beginnings of that withdrawal headache coming on. Drinking beverages not for enjoyment, but for their drug content. I prefer not to live that way.

I just have to be careful when November rolls around to not get re-addicted! NaNoWriMo usually makes for a more caffeinated month than most, but I just have to watch that I don't have it more than two days in a row.

Fall??

Now that it's fall, the weather is cooling off... NOT! It is 109° F today! Why exactly the other moms from church decided to pick this particular day for a playdate I don't know, but we went anyway and we had lots of fun. Gwena got all her toys and her stroller stolen by older babies, she ate an entire peanut butter and butter sandwich, we ran through the sprinklers a little, and she wasn't quite as terrified of grass as usual and actually crawled on it without crying!

On the way home I was daydreaming about going in the swimming pool of our apartment complex, but now that I'm home, I don't want to leave the air conditioning.

And Many More

Yesterday was Gwena's birthday! I can't believe my baby is 1 year old now. Once I get more pictures, I'll make another post about her baby luau. For now I just want to say how very happy I am that her first year has gone so well. She is happy and healthy, is on (the very bottom of) the growth chart, has never had a lung infection, and is still nursing despite a rough start to breastfeeding in the beginning. Her pancreatic insufficiency is severe, and I am fully convinced that without the enzymes she takes whenever she eats, she would not have lived to see this first birthday.

I am so thankful for her good health, and for Gwena herself and all the joy she has brought me. When we sang to her yesterday and at the end of the song everyone sang, "and many more!" it caught me so off guard I almost cried. Those words have never meant so much to me before, but I know that Gwena will have many more birthdays, and each time we will celebrate the blessing of another year of life, and wish her many more!

Baby's First X-ray

Gwena had her first x-ray today, a routine yearly CF chest x-ray. Things started out well enough, she was happy and playing in the waiting room, too fast to get a clear shot on my phone.

Things took a turn for the worse when they put her into this medieval torture device!

She sat on the little green seat with her legs dangling, I held her arms up over her head and the tech closed the clear plastic shell around her. She screamed her head off while the tech took two pictures. We got her out but had to put her back in because we had to retake one of the pictures! She screamed even worse the second time. This is a blurry shot of the teary-eyed baby this procedure resulted in.

But she was fine after a while, especially once I nursed her!

I got copies of the films, so here are Gwena's lungs:


I always get copies of her medical records to keep in our personal files. Having worked in medical records... well, I just feel safer that way.

What happened to August?

Ack! 7 weeks without a post? I knew it wouldn't be long before I started neglecting this blog.

In that time we've struggled with Gwena's weight gain (or lack thereof), Gwena has acquired 4 teeth, I have laundered a cockroach, my mom has started chemo for breast cancer, I've been working a little from home for my mom's business, the apartment is now a complete mess again, and we've taken a trip to Stanford for Gwena's clinical trial.

Perhaps some of these things will be elaborated on in future posts. For now, I have to go try to get this mess under control!

No Guilt Here

I think I may be the only CF mom who doesn't feel guilty that my child has CF. (Please note: I am not trying to deny or belittle the emotions of those who do feel that guilt, I just want to share how I do feel about it and why.)

Now, as I've written about before, I do sometimes feel guilty about other things, like her slow weight gain. But the fact that she has CF? I have never felt an ounce of guilt over that fact. But she got the gene from me, right? I passed that mutated gene on to her, giving her CF? Well, that's not the way I see it.

What have I given my daughter? One half of her DNA, 8 months in the womb, 10 months of nurturing and meds and treatments. It's not a stretch or a boast to say that she owes her life to me, as everyone owes their life to their mother, and once over again, as many children with CF owe their lives to those who care for them.

Yes, one of those genes in the DNA I gave her causes CF. But for Gwena, what other options were there? The only other options were never to be conceived, or to die before she was born. I don't think those are better options than living, even living with CF. For me the other possibility was to have a different baby, one without CF. But there is no "Gwena without CF", the odds of conceiving a baby with the exact same DNA as Gwena, minus the CF mutation, are mind-blowingly small. If I had a baby without CF, it wouldn't be Gwena. Gwena is unique and amazing and you know what? She has CF. And I am so glad that she's my daughter.

The other reason I don't feel guilty about Gwena's CF is that while, like all CF parents, I know I didn't choose to pass that gene on to her, I also believe that Someone did. I believe that God designed my daughter and chose every gene in her DNA, including the CF genes. That is sometimes a hard truth to accept, but at the same time I am comforted to know that this was always His will for Gwena's life and my own, and He will work in it for His glory!

Psalm 139:13-16 (NIV)

" ¹³ For you created my inmost being;
you knit me together in my mother's womb.

¹⁴ I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.

¹⁵ My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,

¹⁶ your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be."

July Clinic Visit

This is my second belated update post!

Last Wednesday we went to the CF clinic. Gwena's lungs are doing great! The nurse told me I'm doing a great job. :)

Her weight wasn't too good though... she weighed only 15 lbs 5 oz. Two weeks before, at the pediatrician's, she had been 15 lbs 8 oz. I know it's two different scales, but we had also weighed her on our home scale, and she seems to have lost a few ounces in those two weeks, instead of gaining! Her growth curve had a little dip in it.

So the plan is to feed her more and richer foods. Right now she's nursing 5 times a day. In addition to that, they want us to give her the foods we're eating blended up, give her more rice and pasta and crackers, cook for her using butter, oil, or cream, or add those to her foods directly. We are to weigh her every week on our scale and email that figure to the dietitian. They will see us back at the clinic after 4 weeks to see how she's doing.

It's kind of disheartening to find out she hasn't been gaining well, that we have to fight harder to get her to grow. Getting extra calories into her hasn't been too hard though, and I can already tell from her stools that we've outstripped the amount of fat that her enzymes can handle, so we might need to increase her dose as well.

I can't believe she's 10 months old already! It's crazy to think that without enzymes and treatments, she might not have lived even this long. She's standing in her playpen right now waving at me, and she just looks so old!

Organization: Week 1

This is the first of two belated updates I should have written earlier this week!

My first week of attempted organization/cleanliness went pretty well. We got everything cleaned up on Friday (the 9th) before Jon's brother got here to hang out for the weekend. This was nice as it gave me a basically orderly apartment to work with. As of Friday the 16th, one week later, I am proud to say that the apartment actually looked the same, if not better, than the Friday before!

I was able to keep things basically tidy from day to day, and keep up with the dishes. I always want to put this off, but I hope if I force myself to do it every day long enough, it will become a habit. In addition, over the course of the week I managed to do laundry, vacuum, dust, clean the counters, sweep, and mop. The toilet and the stove each got a superficial cleaning, not as thorough as I had wanted to give them. Jobs I had on my list that I didn't get to at all included cleaning the shower, mirrors, and windows.

So it wasn't a perfect run this first week. But it was definitely an improvement over my normal housekeeping performance, so I'm calling it a success!

I also made some headway in the less obvious behind-the-scenes work of organizing things. There is one big thing I've been re-examining because of the book my grandma lent me - where things go. I'm now trying to have a definite place where each thing goes, and to have that place be in the most convenient location.

I'll use Gwena's meds as an example. I used to keep her enzymes in the living room, because that's where I usually feed her. It seems convenient, but there were always empty enzyme capsules all over the coffee table. Now I've realized, even though I feed her in the living room, I get her food ready in the kitchen. So now I've started keeping the enzymes in the kitchen, and pouring them onto the food before I move to the living room. Now the coffee table is much cleaner!

I still have a long way to go before I can call myself an "organized housewife", so we'll see how long I can keep this up. In other exciting news, my grandma says she has another book she wants to lend me! Why am I excited to read about housework??

This Day In History

One year ago today, Jon and I went to the midnight showing of Harry Potter 6, then went home and got a few hours of sleep on the floor of our empty apartment.

One year ago today we woke up, packed the last of our things, did our last minute cleaning, and turned our keys over to our landlord.

One year ago today we got the call telling us that Jon's CF carrier test was positive, that any child we had would have a 25% chance of having cystic fibrosis.

One year ago today, my eyes already red from crying, we boarded the plane for our red-eye flight and said goodbye to Hawaii.

Getting Organized

I'm going to be honest here... I'm a messy person. I leave things on the floor, in front of books on shelves, on the counter, just wherever... I tell myself I'll do the dishes "later" or sweep the floor "tomorrow"... pretty soon our home looks like a disaster. I've never learned to pick up after myself as I go. My husband is the same way.

For a while now I've been struggling against the bad habits I've been cultivating for 25 years. It shouldn't be hard to keep a small one bedroom apartment clean, right? But somehow, it is. I've been fearing the day (probably in a few months) when we move into a house. If I can't keep an apartment in order, how can I ever manage a whole house? If I can't do chores when I've only got one child, what will I do when we have two, or three, or four??

The other day at my grandma's house I noticed a book on her shelf and asked if I could borrow it. The book is Confessions of an Organized Housewife by Deniece Schofield. It is full of great ideas on how to have an organized home, keep up with the housework, and have time left over for fun! The book was published in 1981 so the version I read is a bit outdated in some areas (index card files??) so I'll probably pick up the updated version from the library, Confessions of an Organized Homemaker.

A lot of the things in the book seem like common sense, in fact I've thought of a number of them myself. But the book has made me realize how much easier it would make my life to do these things, how much time I could save. I'm inspired now and determined to get my home and my time organized! And if there's one thing that NaNoWriMo and natural childbirth have taught me, it's that if I'm determined enough, I can do nearly anything!

More posts should follow about my desperate fight against disorganization and my own terrible habits, with more specifics about ideas from the book that I'm implementing.