Friday, December 30, 2011

Christmas Fun

The holidays this year have been great. Emma actually understands what presents are and the joy of opening them to find something exciting inside. She quickly learned that any hard-to-open packages should be taken directly to Daddy after unwrapping, since he's the one with the handy pocket knife.





We drove around to look at Christmas lights on several occasions and Em always enjoyed the experience. She recognizes Santa and Baby Jesus and loves to point them out to us. She likes Christmas songs and the classic animated movies. She now knows about snowmen, reindeer, and Santa. It is adorable and so much fun.

Barry's sister gave Emma a doll and stroller. Emma is in love. She plays with that doll more than any other toy now, and she insists on sleeping with her during naps and at night.

This time of year I am especially grateful that we have family so near. I am also extremely thankful to have gained so many kind family members through marriage. My last grandparent, my Grandpa who is one of my favorite people in the universe, passed away shortly after I got married. Now, through my husband, I have loving grandparents again and it is wonderful. Christmas wouldn't be quite the same without grandparents.

I hope all of your holiday celebrations have been full of family, friends, laughter and love. I also hope that 2012 brings you health, peace, and joy. There are so many things lying ahead.

Wednesday, December 14, 2011

Doing Things the Long Way

When I was pregnant with Emma I didn't realize there were so many parenting styles out there. Apparently you can be Crunchy or Silky, you can follow Ferber or Sears, believe in crying-it-out or attachment parenting. There are the options to breastfeed or feed formula, or heck, pump and bottle feed breast milk. There are decisions about where the baby sleeps: your bed, a bassinet in your room, a crib in their own room. The lists go on and on and on. All of the little choices one makes add together and, for some people, place one into made up categories of motherhood.

I never got into all of that.
I decided to breastfeed because I figure God gave me breasts for that reason. I chose to follow my instinct in most other areas. Emma has been sleeping in her own room since she was six weeks old because I couldn't sleep when she was in a cradle in my room. We've done our own thing and not worried about the classifications out there.

At some point I saw a video online that showed the benefits of rear-facing car seats for toddlers. That's when I decided to categorize myself as a believer in extended rear-facing. I was hoping to keep the Bean facing backwards until February when she turns two, but I had Barry turn her seat around last week. I would have held out longer if it weren't for her darn arthritis. Now that she is bigger, she can't stretch out and change leg positions when rear-facing. I don't normally worry about it, but we spent four hours in the car last weekend and I didn't want her joints to get stiff. So, the kid is facing forward and I feel like she grew up suddenly.

The other category I have found myself in is that of extended breastfeeding. It's not something I planned to do ahead of time, it has just worked out this way. I learned about the option of child-led weaning and thought that sounded like a good idea and decided to give it a try. So, Emma nurses once each night and she is 22 months old. We'll stop when we stop, I'm not worried about it. I'm also not super passionate about it, so you don't have to worry about me marching around holding up a sign to advocate extended breastfeeding.

If you know me well, you know that I'm a bit of a nervous, easily stressed out spaz when it comes to some things in life. However, when it comes to parenting choices I'm finding myself to be pretty neutral. Do what works for you, and let others do what works for them.

Thursday, December 1, 2011

Amazing.

My blog's title is so appropriate. Not only did it become one of my favorite hymns, (Listen here!) but it really captures my sentiments most of the time. I look around at the events unfolding in my life and I am completely awed and amazed. So, this specific entry's title may be a little redundant, considering the big title across the top of the page, but amazing is how I feel at the moment, so the title is staying.

Since having a child I've noticed that people love to talk about how quickly time passes. Strangers at the store comment on how cute Emma is, then proceed to tell me that their youngest is in college now, or their oldest just started middle school, and how quickly it all goes. I can appreciate that, and I love that my Bean helps parents to pause and reflect on the growth of their own children.

Watching Emma grow up is exciting. It's amazing, really. I've always been more of a fan of children than infants, so I'm enjoying the fact that she is becoming more and more of a little girl and less of a helpless baby. Take a look at the two pictures below.

Dec. 2010

Nov. 2011


















Last year we were sticking her in containers and being silly. She could only crawl and wasn't able to get in there on her own. Now, I leave her alone for five minutes and come back to find her being silly all by herself, because she can. It's liberating.

Another reason why I'm so full of amazement today is that my daughter is so strong and brave. Since her diagnosis of JRA six months ago, Emma has endured many very stressful experiences including two X-rays, at least six blood draws, a TB test, daily oral medications, and weekly injections. These are things that adults don't like to deal with and she is not even two years old. All of it was very hard at first, very overwhelming, but my kid is resilient. She has become so tough, and during today's blood draw she didn't even cry. Not a whimper.

I am amazed to see her blood results show her incredible response to treatment. One test called ESR, which measures inflammations, has a normal range of 0 - 20 mm/hr for someone Emma's age. Six months ago her ESR was 87 mm/hr. Today it is 9 mm/hr. Normal. I want to shout it from the rooftops!

I am so thankful that the inflammation in her body is decreasing. I am so grateful that my girl is responding to treatment. I am so grateful that these medications exist, that they have been tested and approved for use in children. That is why we're participating in the Jingle Bell Run/Walk next weekend. The money raised goes to develop and test medications to treat arthritis, so people like Emma can regain a little bit of normalcy in their lives.

Walk with us. Join Team Emma or make a donation, please. 

Sunday, November 27, 2011

So Very Thankful

It has been a long, lovely week.

One of the benefits of being married is getting to celebrate each holiday at least twice. This year did not disappoint. We were fortunate enough to eat all the glorious deliciousness of Thanksgiving on Thursday with my parents, aunt, uncle, father-in-law, and sister-in-law. Two days later, we did it all again, with Barry's mom, brothers, and sisters. I hope we get a double dose of Christmas as well.

While vegetating after dinner at my parents' house, I made Barry climb into the attic with me and grab a couple of my old toys so that I can clean them up and give them to Emma as Christmas gifts. She'll be getting some lightly used My Little Ponies, a chair for her dolls, and a beautiful toy cradle that my Grandpa made for me as a Christmas gift when I was two years old. I'm excited to be able to share my cherished toys with my girl.

Here is one such toy.

I never played with this car; it was given to me as a gift in high school, long past my Barbie days. I had a collection of little, yellow VW Beetles and one of my most excellent friends decided this would be the perfect addition to that collection. It's been collecting dust for about a decade now, but Emma sure loved pushing it all over Grammie's house.

In unrelated news, I gave Emma both of her injections this afternoon all by myself. I couldn't have done it without the help of her high chair restraints and distracting videos on my phone, but this mama was tired of waiting around for Barry to get home, so I just made it work. It definitely wasn't easy, but we succeeded. Now I know that I can do it, and knowing is half the battle.

To keep with the spirit of Thanksgiving:
I am thankful for family and friends who make my world brighter. I am thankful for a husband who works hard to provide for our family. I am especially thankful that he has a job. I am thankful for my home, my amazing fireplace, warm water, and a soft pillow. I am thankful for my pets. I am thankful for our trials. Even though I hate JRA, I know it is making my family stronger, and I am very grateful for that increased strength. I am thankful for my Savior for giving me everything. I am thankful for my daughter. She is my miracle and she teaches me the meaning of unconditional love, bravery, and faith in ways that I never imagined.

Sunday, November 20, 2011

sleep?

Hey there, good looking!

I've decided that if a sitcom or other show had a skit of a typical nighttime for me, people would laugh. My nights are seriously a joke.

Many nights, I get in bed and toss and turn until I finally fall asleep. Occasionally I pass out immediately, but that doesn't happen as often as it used to, thanks to several achy joints that have become a part of my life since having a child.

I sleep for about two hours before the dog wakes me up to go out. He'll go pee, come back in, and I'll settle back into bed. Then, on particularly evil nights, my dog will wake me again a few hours later. Apparently it was too cold or damp for him to take the time to poo the first time he was outside. Awesome. I'll settle back into bed again, and just start to drift off when my cat decides that I have disturbed her sleep and she is now hungry. I take the lid off her food and let her munch away as I start to slumber again. Then, on especially evil nights, Emma will wake just as I fall asleep, and I'll get up to tend her. By the time I'm back in bed, I've been up so much that it takes me a while to really fall asleep. Then, a couple of hours later, Barry's alarm clock goes off, which wakes me and the other cat, who reminds me that it is time for her breakfast. Fifteen minutes of fiddling around with cats and whatnot, and I'm back asleep again, only to be woken two hours later by Emma who has decided that any time between 6 and 7 in the morning is a good time to start the day.

So, what I'm trying to say is I sleep in approximately two hour intervals. That is some severely interrupted sleep. I did some online research and reading on the subject several months ago, but I've forgotten what it said. I have the feeling it wasn't good. (I just found something online that says it may cause memory problems. Go figure.)

One thing is for sure, it's stressing me out and making me a grouch.

Thursday, November 10, 2011

29 years for me & 21 months for Em!

HAPPY BIRTHDAY TO ME!
Thanks, Visiting Teachee, you're the best!
That's right, I'm tooting my own horn, but I think this is the one day a year when I'm perfectly allowed to do so. I love birthdays. I'm not one of those ladies who freaks out about getting a year older. It's okay that I have an increasing number of gray hairs, that's only natural. I'm fine with the fact that this is the last of my birthdays in my 20s, I'm just happy to be alive and well! Birthdays are a special day to celebrate! Today is a day when I can say, "Bring the kid into our bed, Honey, I don't feel like getting up yet!" It's okay that I dumped half a bowl of oatmeal straight into the compost bucket because I realized too late that my husband bought a custard-filled doughnut for my breakfast. Those are the kinds of things that are perfectly acceptable when it's my birthday.

Tomorrow Miss Emma will be 21 months old. Time is flying. In just three little months we'll have a two year old on our hands. She's getting ready for the terrible twos and has her tantrum throwing skills perfected ahead of schedule. We love her to pieces though, so I think it will all be okay. She is talking a ton, but we're frequently running into a problem. Emma will say something out of the blue that we can't understand. Barry and I have no context or reference point, so we start saying words back to her and she says "No" and repeats the mystery word. Sometimes we figure it out, sometimes we all get frustrated and have to change the subject. I can't wait until her pronunciation is better.

The big news: THE ENBREL IS HELPING! EMMA'S ANKLE IS NO LONGER SWOLLEN! This is amazingly wonderful, since the kid's left ankle has been swollen since May. Her knee is better too. It's no longer hot and I don't think it's inflamed, but it is a little lumpy. Her fingers are still little sausages, but I'm hoping they respond soon. We go to physical therapy later this morning. I'm interested to hear what they say.
We're totally related!
On a completely unrelated note, I spent a little time on the internet last night reading about The Hunger Games movie. I'm pretty excited! I'll have to reread those books as soon as I'm done rereading the Hitchhikers' Guide series. I love reading and I am grateful that I have time to read more now that I'm only working part time.

Have a wonderful day, my friends. I know I will!

Monday, November 7, 2011

Exhaustion

Last week we were initiated into parenthood... Emma had her first stomach flu. Naturally, it came on only a couple of days after starting her new medication, just to put me into panic mode. I calmed down after both her rheumatologist and pediatrician told me that she most likely had a regular tummy bug and not a rare reaction to Enbrel.  Regardless of the cause, it was an exhausting few days, complete with an abundance of vomit, clean-up, stress, and tears, insufficient amounts of food and water, and one fussy, little girl. The last of the vomits happened Friday at 1 in the morning. Barry and I worked as a beautiful, albeit sleepy, team as he cleaned the kid and I cleaned the bed and put on fresh sheets. It took a long while before she was calmed down enough to sleep, but we finally all got back to our beds. Then I had to get up and go to work. I was very tired. Thankfully, Emma has fully recovered and is back to her pizza-eating self.

Then Sunday happened to be "The End of Daylight Saving Time." I think Daylight Savings is a ridiculous program and I'm about ready to move to Arizona. I used to love it before motherhood. I especially enjoyed that day in fall when I instantly gained an hour of beautiful sleep. Now, that happens to be the most dreaded day of my year. That's the day when I know I'm going to wake up heinously early, deal with an insane amount of tantrums, and wonder how we'll ever get back to a moderately normal schedule again. Seriously. I've been woken up at about 5:30 A.M. two days in a row now. I'm not a pretty sight to behold and my kid is having more tantrums than I care to admit. I think she's asleep now, which means I need to sneak off and take a nap as well. My brain has been pretty much useless for three days straight.

Before I pass out on the couch, let me close by saying that Emma had her second dose of Enbrel on Sunday and so far everything is going well. I'm glad she is tolerating the medicine, braving the shot, and responding to treatment moderately well. Keep your fingers crossed that this is her miracle drug and we can make her nasty arthritis go away.

zzzzzzz.....

My little duck, 24 hours before the stomach flu!

Saturday, October 29, 2011

Help!

Maybe this isn't the best place to vent these feelings, but I have to get them out somewhere...

I'm at the edge of a very dark, angry place and I'm doing my best not to take the final step into the abyss. I'm extremely stressed out. Right now I'm extra concerned about money because my husband has been out of work for a few months. I chose not to work full time in my life right now, so that I can stay home and raise our daughter, because we can afford it IF HE'S WORKING. Which he's not. I do not like using our savings to pay monthly bills, but I don't exactly have a choice at the moment. How will we pay our mortgage if this unemployment continues? How will we feed our child? How will we pay her medical bills?

That's the extremely huge fear I'm dealing with. Barry has amazing health care coverage through his union that, thankfully, extends out six months from the date he was laid off. Without this, I don't know how we'll go about getting my Emma all of the proper care and medication that she needs. I know there are programs to help, but I don't want to change doctors. The ones we see have been huge blessings in our lives.

Should I find full time work with benefits so I can make sure that my family isn't royally screwed in a few months? Where will I find a teaching job in the middle of the school year? What will I do with Emma during the days if Barry can't watch her because he's job hunting or working side-jobs?

My husband and I love each other. We're very different from each other, except that we are both excessively stubborn. We also have the same long-term goals, and hopes. Unfortunately, I take out all of my frustration, anger, fear, and worry on him. I'd like to punch him in the mouth when I see him next, but I'll probably just give him a hug and a good, stern talking-to.

Sunday, October 16, 2011

Super Hero Emma!

Not a single tear, scream, or cry today during Emma's weekly injection.

The hubby was not home, so I had my mom come over to help out. Em sat in Grammie's lap, watched me get everything ready, then was completely brave during the injection. I counted to three, poked her, then Grammie and I counted to ten together while I gave the methotrexate. (The shot is completely over by the time I get to seven, but I apply pressure with my finger for the last few seconds.) That was it.

My daughter is my hero.

I understand when moms of little babies are heartbroken each time they take their child in for a vaccination. Most people can empathize with those moms, because no one likes to see a kid cry. Can you comprehend what it's like to give your own crying baby an injection every seven days? It's a much easier process when she's not screaming at me, so I am grateful that my girl is becoming so strong and brave. At the same time, I hate the fact that my not-even-two year old is getting accustomed to shots. JA seems to be full of these two-sided victories.

In related news, during Emma's failed attempt at a nap today, she started crying out, "My 'tuck, bed!" She said it over and over with a bit of panic in her voice, so I went to investigate. If you can't speak Emma-talk, that's her way of saying, "I'm stuck in my bed!" The poor thing put her foot through the slats in her crib and turned her ankle just enough so that she couldn't pull her foot back through. I did my best not to let her see me laughing when I rescued her.

She may be brave, but she's still a silly little kid. Thank goodness.

Wednesday, October 12, 2011

World Arthritis Day & Vomit in the Bath



So, today happens to be the one day a year dedicated to raising awareness of arthritis around the globe. I know that arthritis is the leading cause of disability in this country. 1 in 5 people have some form of arthritis. 300,000 children in America have Juvenile Idiopathic Arthritis. It's a crappy disease. Emma has had it for five months now. Just five little months of chronic inflammation, discomfort, and medication. Who knows how many more months she'll deal with this. It's likely that she'll never know life without arthritis... unless we find a cure. 

Rather than dwell on the negative, today I tried to spend time thinking about the good in my life. Here are a few of my favorites:
  • A wonderful house, family close by, and food in the pantry!
  • Friends! Old friends, new friends, good friends!
  • Faith 
  • An early diagnosis and treatment for Emma's arthritis. 
  • Free PT/OT through California Children's Services! Em just qualified! 
  • A husband who loves me. 
  • An incredible daughter
Let me tell you a story about that amazing daughter...

We made a great dinner tonight, yummy breaded chicken, asparagus, and rice, followed by strawberries and grapes for dessert. It was delicious! Then I stuck the kidlette in the bath and got into bedtime mode when I noticed that she was starting to drink the bath water. GROSS! I got her a cup and some fresh water and she went to town practicing her drinking skills. Since she hasn't mastered the fine art of drinking out of a regular cup, I thought it was brilliant to let her practice in the tub. She can spill all over herself, choke and sputter, and it doesn't make a mess! So I gave her more water. She gulped down too much, coughed too many times, and before I knew it, the complete contents of her stomach made an appearance in the bathtub. Awesome.

While I worked on cleaning up the beauty that was the tub, Barry wrapped Miss Em in a towel and took her to the kitchen where he commenced dinner number two, because I do not want send her to bed with an empty stomach. While sitting on a chair in nothing but a towel, Emma starts saying, "My poo poo." Emma is amazing, but she doesn't know the difference between number one and number two. I ran, grabbed the potty, and stuck her on it. Usually she doesn't sit on the thing for more than a second, and she's never used it for it's purpose, but tonight, sitting on the potty on the chair at the kitchen table, Emma peed! Our first glimpse into potty training success! It was splendid! (Yes, I'm genuinely excited and actually blogging about this.)

I guess the point of this story is that you never know what's going to happen. Everyone is always learning. I'm still figuring out the do's and don'ts of motherhood. (Don't give your kid too much water on a full stomach. Got it now.) Sometimes yucky, unexpected things happen, but you just clean it up and move on. It helps to have someone to support you, to help during the difficult times. Then, when you're in the middle of the madness, you just might see a moment of success, a step in the right direction. Growth and development happen when you least expect, and those little moments of awesomeness are rays of light during a storm.

That's my message to raise awareness about arthritis. That's my message to remind me to hope.


Tuesday, October 11, 2011

20 Months

That means we're just four months away from having a two-year-old on our hands! How did that happen?!?

Life is going pretty well around here. Emma's arthritis is still munching away at the same joints. Her knee is improving; the swelling there is hardly noticeable most days. Her ankle's swelling is also down, but it's still obviously swollen. The range of motion in that ankle isn't improving, but I'm not cranking on it during PT as I probably should be. She's running and climbing and getting around really well, which is wonderful. I'm starting to really worry about her fingers. Those little, swollen sausages haven't changed a bit since the onset of this madness. Trying to convince her to hold a crayon or a spoon the correct way is not going so well. I'm afraid of the challenges she is going to face as she grows. Will she be able to learn to write her name? Tie her shoes? Button her own pants? We've got to get the disease under control...

Emma's language skills continue to improve. She's also mastering the art of demanding things and being a bossy little kid. It's frightening. "MY HAVE IT!" comes out of her mouth a lot when she's playing with Addison. Those two are teaching me patience while I'm trying to teach them about sharing. It's awesome.

She is going to sleep very well on her own, thank goodness. Most nights she sleeps straight through, for about eleven hours, which is wonderful. The only downside is that now we wake up around 6:30 A.M. I get a lot more done every morning. (When I'm motivated.)


My happy girls loves to sing and dance, go for walks, play outside, try to pick up the cats and give the dog treats. She enjoys swinging on the swings at the park (finally!), going down slide, looking a bugs, hiding under pillows and blanket. She is fond of spitting out food and handing it back to me while saying, "I don't like it." She throws splendid tantrums, sometimes cuddles her water cup and pretends it's a baby doll, and is trying really hard to help us dress and undress her. She JUST started saying "Um..." which I don't like. She's telling me what foods she would like to eat, which I do like! She counts to ten, with help. On her own it's just, "One, nine, ten!" She says the most heartwarming prayers, "Dear Father, Christ. Amen!"

She makes my life better.

Tuesday, October 4, 2011

All Shook Up

I need to vent.

When we moved here a little over three years ago, we had nothing but positive vibes. The first joy was that the house was for sale by actual people, not owned by a bank! The place is small, but the lot is large and there's plenty of room for improvement. The neighbors were all really nice people and everything was fantastic.

About a year and a half ago, our good luck with neighbors came to an end. Old man Bob (the sweetest man ever who lived next door) and his wife moved away. We then became acquainted with the landlords. One was nice, the other, not so great. Some drama ensued, but things have been quiet now for a while so it's not so bad.

The guy on the other side of us was pretty cool. Not someone you'd feel comfortable meeting down a dark alley at night, but we knew him to be friendly, caring, and a good neighbor. Last winter we accidentally offended him by making noise after dark. Mind you, it wasn't even 7PM and when he yelled over the fence to knock it off, Barry and the guys cleaned up and came inside. However, a week or so later when Barry tried to apologize, Neighbor Man wouldn't hear it and refused to accept an apology. Things between us haven't been quite as friendly since. Now, we've managed to make it even worse. Through a few separate events we have unintentionally made Neighbor Man hate us to the point that he wants to beat Barry up and tries to get in a fight with him any time they can meet on public land.

My first response has to be, REALLY?!?! Really?!?! People act like this outside of elementary school? It's ridiculous and absurd and upsetting. My second response is fear. I do not like living next to someone who thinks the best way to solve problems is with his fist. What happened to civilization? To acting like a grown up and working together to find a solution? He won't even let us apologize, he just wants to hurt my husband.

So, we've taken to praying for the guy. It's weird and challenging and it may not even help him at all, but it's helping us learn to forgive.


 "But I say unto you which hear, Love your enemies, do good to them which hate you,
Bless them that curse you, and pray for them which despitefully use you." (Luke 6:27-28)

Tuesday, September 20, 2011

Flattering Portraits.

My kid takes after me in several ways:
  • I'm mostly certain that she's left handed.
  • She loves pizza but picks off the mushrooms.
  • Her love of animals is already apparent. 
  • She is a klutz. 
A few days ago she decided to fall. Her face landed right on her piggy bank toy, which happened to be on it's side. The very edges of it's two right feet left their marks on her face. One, a bruise on her forehead, the other, a fat lip and torn gum. Her crooked smile shows her lip off beautifully.


Good thing the kid is resilient. She gets her stubborn strength from both of her parents.

In other news, I discovered that my camera has a self portrait timer on it that takes three consecutive shots. What is the point of this feature? When would anyone use it, other than to be ridiculous and silly?

Naturally, I tested it out.


Which brings me to yet another way that my daughter takes after me. We both make really amazing faces for photos.

Sunday, September 11, 2011

19 months

My, how time flies.


This month, the biggest change in the life of Emma happened last week when I decided that we were done with the pacifiers. I cut the nipples off of Emma's two bedtime pacifiers and took them to her, saying "uh oh" and "broken." She looked at them, tried to suck on them, and realized that wasn't going to work. I told her that we needed to put them in the trash and she complied with very little convincing. (Thank goodness.) Since then, she only asks for them occasionally and never for very long. (Thank goodness, again.) However, falling asleep takes her longer than it used to, which is definitely not my favorite thing. I don't think she likes it much either. Oh well. We shall survive.

Her language skills are remarkable. Barry thought it would be a good idea to count the words that she says on her own. It took us a few days, but our final count is 205 words. We are very much impressed. She is also making lots of little sentences, which we love to hear. Some of my favorites are, "Daddy, stop it!" when he's tickling her too much and "I need help" when she can't open a container or put a piece into a puzzle. She says things like "I color," "I hide," or "I phone" to let us know what she wants. She says prayers (with a lot of help and guidance from us) that could melt The Grinch's heart. Emma understands the concept of ownership. "Daddy's hat." "Mommy's water." "Emma's milk." She is becoming more and more a child, less and less a baby. It is awesome to be able to communicate with my little girl.

Her arthritis is still in full swing. She's getting around really well, though. I think the higher mtx is making a little bit of a difference, but it will take time to know for sure. We will be switching to the newly hired pediatric rheumatologist in Oakland and no longer seeing the doctors at UCSF. I hope the new doctor is good.

That little girl of mine is amazing.

Thursday, September 1, 2011

Two Fun Days In A Row!

Yesterday, Emma and I drove to San Francisco for her second appointment with the pediatric rheumatologist at UCSF. Getting there went much better than the first visit because we didn't have to wake up early and deal with as much traffic. I also got in to the correct lane this time, so I could enjoy the smoothness of using my FasTrak at the Bay Bridge toll plaza. We arrived almost thirty minutes before our appointment! (A vast improvement from the right-on-time arrival of visit number one.) I figured we'd have time to sit down and eat a snack, but they called us in early. I love when that happens!

I really love the fellow that sees Emma. She is bubbly, friendly, and sweet. The attending doctor is awesome and full of knowledge, but less warm and fuzzy. Anyhow, they both checked Em over. We all agreed that we see some progress from where she was eight weeks ago, but not enough improvement. The methotrexate that Emma has been on for six weeks now is typically given for several months before doctors want to move on to more aggressive treatment. We're going to increase her dose and do it for two more months before we decide on the next step. I was also told that our physical therapy is lame and we need to do a lot more than just encourage Emma to play in certain positions. We need to take it up a notch and manually stretch and push her stiff joints. It's not my, or Emma's, favorite thing.

As much as I want the mtx to do the trick, I am preparing myself for the likelihood that it will not be enough. So, I'm starting to research and pray about our next choices.
  1. Put her under anesthesia and inject a steroid into her joints. This works really well for some people and can immediately get rid of inflammation. The problem is that it's only possible on bigger joints, so there's no way it could be done to help her tiny sausage fingers. Plus, I'm not too keen on anesthetizing my wee-bitty child. 
  2. Oral Prednisone. It will help her feel better overall, with decreased inflammation, but it has icky side-effects.
  3. Enbrel. A twice a week injection that we would give at home. A little more scary than the mtx, because it's newer and has some really horrible, but very rare, side-effects. It's a biologic, which I think is pretty cool. 
 All of these options are complicated because they have the potential to do so much good, but also the potential to do harm. I have already learned that Juvenile Arthritis is a nasty disease that forces good parents to make a lot of hard choices. As Emma would say, (while spitting out food and putting it into my hand) "I don't like it."

Anyhow. Emma and I enjoyed the beautiful day in S.F. by eating lunch in Golden Gate Park, waving to numerous people and dogs, and taking a walk. Then we came home and I went out to get a pedicure and manicure with my long-time best friend. Not a bad day.

Today was even better. The whole family drove to Santa Cruz for a day of fun! We found a sandy beach, laid out a blanket, and enjoyed the ocean air. The waves were crazy because of a storm on the other side of the planet, and high tide came in swiftly, soaking my pants in the process. I spent the next couple of hours looking really stylish in my husband's orange board shorts.

Emma had a blast digging in the sand, walking along the water, chasing birds, and getting sand everywhere. The sun even decided to come out and play! Barry found three sand toys to add to Emma's collection. I enjoyed watching Emma have so much fun. I also found a few minutes of peace to lie back, close my eyes, and just listen to the ocean.

Our adventure wrapped up with a delicious crepe lunch, here, with my favorite Eric in the world.






I'd say it was a perfect day. What do you think?

Tuesday, August 16, 2011

Out with the Old, In with the New!

After at least nine years of faithful service, I had to retire my dear pink galoshes. They served me well at UCSB during many bike rides to and from campus in the pouring rain. They were invaluable on wet camping trips to the coast. They even helped my feet stay dry on a few visits to the snow.

Alas, they have a hole and can keep me dry no longer.

It's okay though, because I just bought these.




They're not pink, but they are covered in elephants.
Hooray!!!




Thursday, August 11, 2011

18 Months

How on earth did we get here already?


The Bean has grown so much. Her language skills continue to amaze us. She still talks in babble sentences, but there is always at least one recognizable word in there. She's using more and more small sentences of all real words, mostly "My _______." Her cutest phrase is "Daddy's home!" She has learned some words to a few songs and it is the most precious thing in the world to hear her sing "I am a child of God" or "Rock-a-bye baby." She doesn't get all of the words in there, but you can tell what she's singing and I love it.

Emma's top two canines have made their entrance, now we just have to get her to want to brush her teeth again. She is becoming a more confident climber on playgrounds and loves going down slides. She is still terrified of swinging. Her climbing skills and added height have allowed her to climb on to the couch on her own, which is a little nerve wracking. She loves my old Cabbage Patch Kids doll. We only watch Sesame Street a little at a time, but she loves it and knows several characters. It makes me happy that my kid likes Grover. I'll accept the fact that she likes Elmo a lot, too.

This week she slept through the night once. The kid sleeps about 11.5 hours each night and has slept straight through maybe twelve times total in her whole life. She wakes at least once a night and calls out for me. I nurse her and she goes straight back to sleep, so it's not too terrible to deal with, but it's not my favorite thing either. Yes, we still nurse a few times a day. (Learn why here.) I'm all for extended breastfeeding and baby-led weaning.


When it comes to her JA, it seems that she is getting around a little bit better. Her swollen joints still look the same, but she's almost running, which is a vast improvement from the slow hobble we've been dealing with for the past three months. She seems to be feeling okay, but the more I learn about this disease, the more I worry about what will happen next. I'm doing my best at letting go of my worries and just taking things day by day, but if you know me, you know I'm a worrier. So it goes.

Being a parent is full of ups and downs, isn't it? I'm thankful that the ups are absolutely incredible.

Monday, August 8, 2011

PT part Dos

Emma saw the physical therapist again today and it went pretty well. As I mentioned before, we don't actually do much physical therapy. We mostly talk, watch Emma move around, measure some of her joints' range of motion, and talk some more about the kinds of activities I should encourage.

The good news is that Em's range of motion is improving. Her knee went from -30 degrees to -17. I don't know if the sporadic, short intervals of PT exercises that we've been doing have made the difference, or if the mtx is starting to reduce swelling and give her some more flexibility. Either way, I'm happy. We go back again in four weeks and I'm keeping my fingers crossed that things are even better by then.

I gave Em her 4th mtx injection yesterday. They're getting better and better. She cries and talks to me all about her "boo boo" and "ouchie" as soon as she sees me get out the medication. She stresses out and cries when I give her the shot, but about five seconds later, she's fine. I'm becoming more comfortable with the whole process, too, which is making everything better. I can't believe how hard it must be for someone with no previous experience giving injections. One woman told me that she gives it to her daughter when she's sleeping. I kind of like that idea, except who knows if Emma would sleep through it. With my luck, that little bee-stinger-sized needle would wake her up and ruin our entire day. I don't know. As long as we continue to have success doing the injections while she's awake, that's what I'm going to keep on doing.

Tuesday, August 2, 2011

Wowzers.

I just finished reading a book called Lone Survivor by Marcus Luttrell. He's a Navy SEAL who went through some seriously difficult experiences in the mountains of Afghanistan. I was able to get past the fact that he has the mouth of a sailor and is a super conservative military man, and really enjoyed the book. It was well written and the story was unlike anything I've ever read. I like being in a book group because it introduces me to books that I would never read on my own. It's good to be exposed to different perspectives. It's also good to learn a little about what our Armed Forces go through. It makes me thankful for the challenges I face in comparison.

Speaking of which, I have my first cold since Emma started methotrexate. I'm feeling paranoid. For those of you who don't know, methotrexate (mtx) is a drug that suppresses the immune system in such a way that inhibits inflammation. I'm not so keen on having a kid running around with a suppressed immune system. I know I can't put her in a bubble, (Her rheumatologist expressly told me I couldn't!) but I would like to limit her exposure to sick people. Slightly impossible when the sick person is me, especially since I know I was contagious before I started having symptoms. I can't take back all of the kisses and snuggles I gave her yesterday.
I hope she doesn't get sick. 

At least I don't have to fight battles in some foreign land where my life is constantly in danger.

Okay, bedtime for Mrs. Sore Throat.

Tuesday, July 26, 2011

PT part Uno

Physical therapy (for Emma) doesn't seem so bad. The therapist's room is full of toys to dig through, climb on, and explore. The view from her third-story window of the parking lot is perfect for my little munchkin who enjoys watching people and cars. Plus, the therapist is super nice.

However, there isn't a lot of actual therapy for us to do. You can't make a stubborn 17 month old flex and stretch. As the therapist put it, Emma has her own agenda. Thankfully, the kid does a bunch of good "exercises" on her own, just by playing and running around. All of our go-home instructions start with the word "encourage." Encourage tummy time (to help her knee). Encourage her to go up on her toes and reach for things (to help her ankle). Encourage her to crawl (to help her wrist). It's all good and well in theory, but Emma doesn't participate in ANY activity for more than a minute or two, so these range of motion exercises won't happen much. I just hope they happen enough to make a difference.

On a positive note, the therapist was quite impressed with the Bean's verbal skills and vocabulary. That made me feel happy and proud. Especially since she only got a small sampling of Emma's conversational skills.

Thursday, July 21, 2011

Making Connections

Earlier this week Emma and I made a trip to the pet store for some kitty necessities. When we visit any location with animals, I like to take the time to show Emma all of the different critters. She loves animals, and I will do everything I can to encourage that love.

After looking at the birds, we made our way over to the fish tanks. We came to one with cute, little orange tetra swimming about. Emma saw these little fish and pointed.


Then she started saying, "Nack! Nack!"

"Nack" is Emma's word for "snack" which more specifically means "cracker." What do you suppose is Emma's favorite cracker (and therefore her favorite snack) in the world?!?

She loves the fishes 'cause they're so delicious!

When I realized the connection my little girl had made, I could help but laugh!

*These are not my photos. I found them on google. Thank you, internet. 

Monday, July 18, 2011

I feel like Potter tonight, like Potter tonight!

I gave Emma her first methotrexate injection yesterday. It went really well. If she could just hold still for 30 seconds it would have gone a little bit better, but that's okay. She really hates being restrained, so Daddy's going to have to figure out how to hold her hands without her realizing that he's up to something. It will get better and easier with time. Thankfully, she tolerated the medicine well and seems a-okay so far.

In other news, Barry and I are going to see Harry Potter and the Deathly Hallows Part Two tonight! Yay! I'm so excited! I'm looking forward to it for my own enjoyment, but I'm also excited to talk with Barry about it afterward. He's never read the books, and though I've told him some things about how it all ends, I haven't told him everything. Since I can't read the series over again for the first time, I can at least enjoy Barry's first experience of it all.

The week is off to a good start. I'm hoping it stays that way!

Thursday, July 14, 2011

The Next Step

Today we spent an hour and a half at the doctor's office. First we waited. Then I talked with the nurse while Emma ran through the room and tried to get into everything. We went over all of the side effects of methotrexate. We also went over everything I need to know to start giving Emma the weekly injections. I picked up the medication, bought my sharps disposal container (I feel so official.) and went back to see the nurse once more. This time Emma played with rubber gloves and a (clean, unused) specimen cup while I talked with the nurse. We double checked that the medication dosage matched the prescription. We played with a syringe to check out the size of the needle and make sure I knew exactly how much medicine I would be drawing up and giving.

I got more direction than necessary, but that's okay. In fact, I think I got more instruction on how to draw up a liquid with a needle and syringe from this nurse than I've received from any of the vets I've worked for over the years.

The nurse is great. Emma's doctor is fantastic. I feel like we're getting really special treatment and it is refreshing to see that, in this busy, fast-paced world, these people are taking the time to care. I'm really happy with Em's medical care so far.

Back at home, while Emma napped, I spent a ton of time on the internet and felt productive. First, I ordered three books about treating arthritis through natural methods, particularly diet. I'm interested to see what they say and try out some new recipes that will supposedly help decrease inflammation. Anything is worth a shot. I figure the more we do to help control this madness, the better odds we have of succeeding.

Then, I starting reading blogs written by other moms of kids with JRA. Check out the list I added to the bottom right of my blog if you'd like to read some. It feels good to know we're not alone, to see that other families struggle with this, and to learn that so many people are stepping out and speaking up in their communities to educate others about this disease. Awareness is important. I mean, really, I never heard of a child getting arthritis until it happened to my own kid. I look forward to following these other families' journeys and learning from their experiences.

Last, I called our local chapter of the Arthritis Foundation in an effort to connect with people in my own community and learn how to get involved. Unfortunately, the lady in charge of the JRA department wasn't in, but I left her a message, so we'll be in touch soon.

I feel good. I feel like I'm finally doing something, like I'm taking steps to improve to my little girl's progress.


We'll see how her first injection goes this weekend...

Tuesday, July 12, 2011

17 months

Mooo!

The kid is a talker. Much of the time we can't understand what she's saying, but more and more her words and sentences are starting to make sense. The other day she turned to the dog, who was outside waiting to be let in, and said, "No. Go potty!" I love when she uses a bossy voice and chastises the pets. She just said "Bless you" after Baby Torah sneezed. One of the highlights this past week was when Emma started to say "Gramma." My mom's heart melted. This kid is amazing and adorable.

In the past month she has sprouted her bottom two canines. I believe that just leaves the top two canines and four more molars until she has all of her baby teeth. What a big kid.

When I look at older pictures, I am amazed to find that she is, in fact, getting cuter and cuter with time. She is more physically capable every day. She really enjoys playing in water and swimming. She loves playing with babies and animals. She loves singing and dancing. You should hear her belt out the hymns in church. My apologies to the people sitting around us on Sundays, there's no way to keep a straight face when Emma's singing along.

Her first appointment with the pediatric rheumatologist went pretty well. We should be able to start some more medication soon to get this inflammation under control. That will be very good. Keep your fingers crossed that it works.

We love our Emma Bean.

Sunday, June 12, 2011

Sixteen Months

Yesterday, my Emma hit the 16 month mark. We celebrated with a family trip to the Spencer cabin for the weekend with Barry's dad and older sister. Even the dogs came. It was Emma's and my first time there, so it was pretty special. We had a lot of fun playing in the snow and enjoying the fresh mountain air! I even rode with Barry on the snowmobile! The only bad part was that Em doesn't sleep so well when we're somewhere different, so it was an exhausting trip.


The biggest developmental change that I've noticed in the month is Emma's ability to communicate. Her speaking vocabulary has grown so much in the past few weeks, it's amazing! She can say so many words now, including truck, car, paci (pacifier), light, nurse, milk, snack, night-night, sock, clock, baby, mommy, daddy, Dawn, Addi (Addison), kitty-kitty, boo boo, up, please, help, bath, hat, phone, eye, nose, mouth, yes, and no. Please keep in mind that many of these words don't exactly sound like the real thing, but I know what she is saying and she knows exactly what she means. She also makes animal noises, which is a lot of fun. She knows the sounds that are made by a cow, horse, sheep, goat, duck, goose, dog, cat, monkey, and snake.

Em now has four molars. Well, she's got three and a half, but that's close enough for me. Sometimes she really likes brushing her teeth, sometimes she really hates it. I hope she's learns to like it better so she can grow up with no cavities like her mommy.

A very difficult discovery has been made in the past month. A few days after her fifteen-month-day, Emma started limping and was clearly in pain when trying to walk in the mornings. I couldn't figure out why. Eventually it became obvious that her ankle was swollen. It didn't get better, so we went to the doctor. It didn't get better, so we took an x-ray. It didn't show anything unusual, so we did bloodwork. The bloodwork indicated that Emma could have Juvenile Rheumatoid Arthritis. The next day a few of her fingers appeared swollen as well. Three days later a knee became extremely swollen and painful. The fact that it's showing up in many different joints confirms the diagnosis of JRA. We're going to see the ophthalmologist this week, going to recheck bloodwork next week, and waiting to get in to the juvenile rheumatologist. Things are okay overall. She is on an NSAID that helps with the pain. She's still limping and still swollen, but we're getting by for now.

No mother wants to hear that there is something wrong with her baby and it is very difficult to see your perfect child in pain. However, everybody has their trials in this life. This will be one of ours. Thankfully, Em has a great pediatrician, a loving family, and a strong will. I'm fairly certain that this will change our lives, but I'm glad that JRA is a manageable condition.

My poor little Bean.

Thankfully, she is still her happy, wacky self most of the time. She makes us laugh and smile. She gets around everywhere (she just doesn't run quite as fast any more) and gets into everything. She makes my life complete.

Tuesday, May 31, 2011

Memorial Day Stroll

My husband is a good man, not all that skilled when using Google Maps, but a good man. He planned a nice walk for us on Memorial Day. We would walk approximately 2.5 miles, eat lunch in downtown Los Gatos, and walk back. We met up with his cousin, her husband and baby, and began our trek along the Los Gatos Creek Trail. It was great, lots of different trees, ducks, geese, and people. I really enjoyed catching up with his cousin and I'm glad our baby girls finally got to meet.

We'd been walking for a while when I asked Barry how much further we had. "Just a little bit. Downtown is right up there." he said, pointing ahead. We walked a while further and my legs started feeling like jello when I asked again. He gave me the exact same answer. Oh great.

Finally we made it, ate some Mexican food that was too expensive and only moderately yummy, then got up to make out way back. We began walking back and enjoyed a nice break while the girls chased geese. Then we wiped all the goose poo off of their shoes, pants, and hands, and continued our journey. I was tired by the time we got to our cars, but it was a good kind of tired.

Once we were at home we played around on Google Maps together and discovered that the route was actually 4.5 miles one way. I walked nine miles yesterday! I'm proud of myself.

As for Barry, his excuse is that he used to ride his bike on that trail all the time as a kid and it never seemed very long. My husband is a good man, just don't trust him when he tells you the approximate distance of a trail or length of time it takes to travel.

Tuesday, May 24, 2011

Orange Bee


I've been using this for a few months. I haven't noticed a huge difference in my skin, so I can't really recommend it as a cleanser. However, if you want to have the most mouth watering, delicious smelling, face washing experience of your life, buy this product. It smells so amazingly good that every time I wash my face I find myself desperately thirsty for orange juice. Mmm...

Tuesday, May 10, 2011

Fifteen Months

I am TOTALLY ticked off right now. I originally wrote this on the 10th and saved it as a draft. I edited, added all the details from Em's doctor's visit, and published it on the 11th. Now, suddenly I find that it is gone from my blog and reverted back to the pre-edited draft. I'm too peeved to go through and fix it now, so sorry that this is not as witty, wonderful, or error free as it once was. What the crap happened? I know it posted on the 11th because a friend of mine saw it. Boo.

We're a quarter of the way through Emma's second year of life. Time is flying. At her doctor's appointment this morning she measured 2 feet 7 inches tall and is weighing in at 20 pounds 14 ounces. That is a jump from the 23rd to 73rd percentile for height and 8th to 20th percentile for weight! Growth Spurt!!!!

She is growing so much, learning so quickly, and running everywhere. She loves to be outside. She like putting on grown ups' shoes. Heck, she likes when you put her shoes on her feet because that means we're going outside. Right now she has mastered a few words and chooses to use them universally. Almost everything is "mama, dada, mommy," or "daddy." Since "num-num" worked so well to get food and water, anytime she wants anything she reaches out and says, "num-num." Her vocabulary is expanding, she just falls back on these words most of the time. With a little prompting she knows to say please when she wants something. She says "nana" for banana, and "nack" for snack, but she thinks all snacks are crackers. I think I taught her the word "cracker" yesterday, we'll see if it sticks around today. She says her own version of socks, clock, Jesus, kitty, dog, and bath. She says "baby" very well and has grown attached to the one pictured above. Her ability to repeat words is improving too. House, trees, leaves, street, are some of the words she is able to repeat fairly well. I'm so proud of her.


Her hair is getting so long that it's in her eyes, but I don't want to cut it. I don't want to put clips or bows in it either because that's just the way I am. Clips don't last too long with my child, anyway. She is becoming more and more dexterous, and it's fun to watch her fine motor skills improve. She really enjoys scribbling on paper with crayons but gets really mad when I take the crayons away. Sorry kid, you can't walk around my house with any kind of writing implement.



Right now she is going through a needy, fussy, cry-when-I-don't-get-my-way stage. It isn't a lot of fun. She's so darn curious and I have to stop her from her desired activities frequently, so we have many a crying fit followed by me hastily redirecting her to something new. I attribute these tantrums it in part to her age, and partially to teething. Poor kid. I knew her first molar was cutting through the gum, I didn't realize that she had three cooking at once. I'd be grouchy too.

In the past month or so she has been willing to give kisses and it is the greatest thing in the world. She doesn't really give a kiss, but if you ask her for one she'll lean in for a smooch. It melts our hearts.

Emma bo bemma, you make your Mommy and Daddy so happy.

Sunday, May 8, 2011

Motherhood

Welcome to my second Mother's Day as a mom. I've got a lot on my mind.

I'm so grateful for the doctrine of motherhood that is taught by my church. We believe that motherhood is the highest, most noble service of mankind. That the feminine traits to nurture, love, and lead others have been divinely placed within women to do great good in the world. All women, whether mothers or not, have the special abilities to reach out to others, to love, and to heal. It is an amazing power.

It is a very long line of mothers nurturing children has gotten us to this point in history.

My great-grandmother, my mom's paternal grandmother, was an interesting woman. She nearly lived a century and saw so much from 1905 to 2004. She told stories about her childhood in the south and her family's move to Ohio by covered wagon. Every time we made a visit she gave a five dollar bill to each of the children. Bribery? Maybe. But it was something that made us feel special, something to look forward to. That, and the dish full of orange slice candies that were so delicious. She had one of these:
that was woven and sat on her mantle. I remember staring at it for a very, very long time before my eyes could look past the red shapes and see the white letters. I don't recall ever hearing about religion on my mother's side of the family, but here was my Savior's name in Nana Bea's living room. I know that she loved her son, my grandpa. I know that she loved my mother, father, brother, and me.

My maternal grandmother was always kind to me. She sold Avon, so I received many pieces of Avon jewelry over the years. My favorite gift from her as a little girl was special, kid-friendly dress-up makeup. Oh the joys of being a girl! Grandma Lois had cats, she smoked in the house, and I always got the impression that she was sassy. She raised four children, lived through a divorce, and lost her final fight to pancreatic cancer. She was a strong woman. My mom calls her "Mother," which sounds more respectful and old fashioned than "Mom." I like it. My mom dearly loved her mother, and I know my grandma deeply loved her children and grandchildren.

My paternal grandmother was the kind of woman who always wore nylons and lipstick when she left the house. She whispered whenever she gossiped, she put curlers in my hair for fun, and showed my what it meant to be a devoted wife. I never saw her lose her temper. Grandma Frances raised four boys, was Catholic (but not in an over the top kind of way), and always made me comfortable in her home. She lost her final fight to lung cancer after battling Alzheimer's. She, too, was a strong woman. My grandpa (my favorite person in the world) loved her more than anything. I know that love was reciprocated. I know she loved my family and me.

My own mother is... I'm at a loss for words. I honestly don't know what I would do or who I would be without her. She is who I call when I need reassurance, who I turn to for support in any endeavor. It is she who has taught me how to be a woman in today's world. She is strong in her own way, full of emotion, full of hopes, faith, and fears. She is my dearest friend and it has been amazing to watch our relationship evolve and strengthen through the years.

I think about my own daughter, about the example I want to be for her. I know she will grow to be a girl and then a woman. I hope she will become a mother herself. She learns so much, so quickly. If she sees something done once she will repeat it. The words she hears, the actions she sees all shape her world and her person. Am I doing enough to lead her in the right direction? I certainly hope so.

Being a mother is incredible. I first knew what it is to love like a mother when I was a child raising a kitten. I felt it more as a teacher guiding my students. I live it now as a mother to a little girl who shares my genes. I am so proud of my baby, so pleased to see the joy that she brings to everyone she meets. She literally spreads smiles and happiness. I've seen it in a smiling girl driving by as we took our walk, the man playing peek-a-boo in line at the post office, numerous people in other cars at stop lights who wave to say hello. It makes me feel radiant to know that the greatest source of my joy spreads it to others so easily. I hope she continues to do so as she grows and has influence on others. I pray that she embraces that gift and uses it to mother others.

What a beautiful thing, motherhood. It is a powerful strength that is found in the love of a woman's heart.

Happy Mother's Day.