Letters to Grace

Dear Grace,

It has been almost 3 months since your last surgery. Did you know that you survived three brain surgeries? Mommy and Daddy were so scared, but you were so brave. You held through strong, and didn't cry at all. You amaze us so much, Grace! That's why we call you amazing Grace. Each day, we never forget to thank God that you are here with us. Each smile that we see from you is a reminder that you are such a precious gift that we are not suppose to have, yet God has chosen Mommy and Daddy to be your parents. We are so proud of you. You are almost 10 months now, and you are just such a delight. We love watching you grow day by day. 

You love to smile. You love to laugh. You laugh at everything! Sometimes you stare at your fingers and start laughing for no reason. You laughed so hard yesterday when Mommy tried to kill a nasty spider that was crawling furiously towards you. I thought the spider was going to bite you and threw everything imaginable at it. You had no idea how scared I was, but you laughed anyways- mostly at my screaming. You laugh the most when daddy does his weird dances and kisses your cheeks

We love to spend time with you because you're always doing something funny. You concentrate so hard when you play with your toys. When you laugh, you always end up hiccuping. When you eat, you like to sit in the most uncomfortable and awkward positions. You look the cutest when your face is smeared with baby food. You fart like an elephant, and your poop smells horrendous, but we love every thing about you.

After your last surgery, you couldn't move your left side much. Your arms and legs were very weak. You couldn't sit very well or hold your head up. It's been less than three months and now you're sitting by yourself without Mommy needing to help you! Your back and neck are getting so strong now! You still have a pretty large bump over your head where you had your surgery, it makes your head heavy and sometimes it's still hard for you to hold it up for a long time, but it's much better compared to before!

The world is so different when you can see it sitting, huh? Wait until you can crawl and stand! You'll have even more fun! Now we just need to work on getting your legs stronger! You are doing a great job though, keep it up! We are so proud of you!

You hardly ever cry anymore! You're just such a happy, content baby. The other day, you made a huge, nasty poop that squeezed out of your diaper and went all over the place. Yet, you sat there quietly and laughed like nothing happened. The only thing that makes you upset is having an EEG. I guess it reminds you of what happened in the hospital and brings back bad memories, huh? Hopefully you won't have to have anymore EEG's!

Mommy will write letters to you often. I will write letters to you because when you grow up, I want you to read these letters and understand how far you've come. I want you to know how many people love you, supported you and prayed for you during this time. We want you to know how much you mean to our family and how much Mommy and Daddy love you. Most of all, we want you to know how much God loves you. He has healed you of your seizures and had protected you this whole time. No matter how much we love you, God loves you more. He has made you perfect in His eyes, and you are just beyond perfect to us. You have brought us so much happiness everyday, and I hope that you will continue to grow to be a happy girl, and someday to a God loving, God fearing woman of Christ, and that you may share your story with many others as a testimony of God's Grace.

Love,

Mommy and Daddy

Grace's Full story

Closet Re-discoveries: Autumn Floral

Floral and brown studded suede 

I love autumn. I love the colors, the weather, the crisp air, pumpkin spice lattes. My birthday is in Autumn, it's also the season we got married almost 4 years ago! Our anniversary is next week! (September 27th). Minnesota is absolutely beautiful right now during this season. There's a lot of hills, trees, bright vibrant colors. I just love enjoying all of God's creation right now. Wearing florals make me even happier... it just adds to all the color!

I have NEVER worn this dress before. Hahaha. Just like the other one. Are you starting to sense a pattern here? It's such a pretty dress too.. I don't know why I've never worn it. I'm just weird like that. The picture above cracks me up. Aaron took it as a candid shot and I seriously look pissed off. I'm not sure what I'm sitting on either... looks like some sort of giant vintage gas tank.

We've been in Minnesota for about a year now, and there's still a lot of places we haven't been able to explore. I'm hoping that these photography adventures will also give us an opportunity to scope out all the elegant and beautiful places Rochester has to offer. This is an old barn that is near our home that we pass by every Sunday to go to church. It was nice to walk around it today! Other places that I'm excited to go to are the old mansions- Plummer house, Mayo mansion, etc.

Again, Aaron did such a good job with these pictures. He's still trying to figure out how to utilize his light source and experiment with camera angles, but he's learning quick. 

|| Outfit ||

Dress: Naked Zebra via shopruche.com

Sweater: Old Navy

Boots: Thrifted
Bag: Prada

Closet Re-discoveries: Emerald and Leopard

First off, I just want to say that I'm so proud of Aaron for taking these photos. He literally just picked up the camera on Thursday, looked at a few websites for some example shots, and this is what he's been able to capture. On Thursday, he didn't even know how to hold a camera, and was dropping the camera lens cap all over the place. Now he's taking these amazing pictures. He's even starting to say things like: "Come on, I need some more attitude... ATTITUDE!" (As he's sprawled on the ground, taking cephalad shots)

I've been having so much fun with this blog these past several days. I'm glad this is something Aaron and I can do together, plus it looks like he's really starting to enjoy photography.

So this is one of the dresses that I've been eager to wear, but it's been hanging in my closet for months. The last time I wore it was in the dressing room of the store I bought it from. I love how green looks with leopard print, and its a great transition into fall wear. The scarf is one of my favorites I got last year from Bluefly.com

Our backyard

Our deck

Hope you guys are enjoying these closet posts! I'm having a blast, I think I'll be able to survive this no shopping for one year promise. (I promised our family I won't shop for clothes for a whole year- to cut back on some spending) It's a huge commitment!

|| Outfit ||

Dress: Greylin

Scarf: Kashmere (Sale from bluefly)

Shoes: Tahari

Bracelet: Forever 21

Closet rediscoveries | First Fashion post

Closet Rediscoveries

I debated for awhile whether to do a closet rediscoveries section, but then I figured, why not? Could be fun! For those of you who don't know, we recently bought a home (pictured behind these shots). This wonderful home came with a beautiful, custom built closet that I fell in love with instantaneously and is largely the reason why I forced Aaron to buy this house. Haha.

Aaron says I have too many clothes. Reluctantly, I agree with him. I was actually able to fill this gigantic closet. I didn't realize how many clothes I had until the closet was full and I still had more stuff. The sad thing is, I have this awful habit of buying tons of cute clothes, and really wearing only 10% of it. I have this signature "Christy" outfit- which is basically just jeans and some type of neutral top (white, gray, black or brown). It's my safe outfit.. kinda like Daria (remember Daria from MTV?) She wore the same stuff every day. Over and over. Boring. My friend Rachel says that I need to add more color to my wardrobe, which I've been trying to do recently. My problem is, I love cute and colorful stuff, but I'm always afraid to wear it in public. I get self conscious.

Instead, I wear it in my closet and giggle to myself. Such a waste, isn't it?

Anyways, so recently we've had to watch our spending a little bit and I promised Aaron that with the amount of clothes I already have, I will NOT buy any new clothes for a WHOLE YEAR. Starting from my birthday (Yesterday). Huge commitment. 

Instead, I will fully utilize what I already have, rediscover the abundance and variety of clothing pieces, and learn to appreciate them more. I seriously have stuff that I have NEVER EVER worn before, but I bought them because they were cute and on sale. They sit in my closet and collect dust... it's such a waste. I'm hoping that I can use this blog to explore my clothes a little bit more, appreciate what I have, discover new combinations to share with you guys, and maybe even find a new hobby to do around here. 

Lets see how long I can keep up with the no shopping for 1 year promise.

I got this yellow blouse from Nordstrom Rack a few weeks ago and it has been so versatile. Its one of my favorite shirts right now. I've even worn it as pajamas

Aaron actually took these pictures. I was very impressed. He normally isn't a very good photographer, but he's a fast learner. I showed him a few fashion blog sites and he picked up how to shoot from different camera angles just like that. 

As I'm typing this, apparently the Bears are losing pretty bad right now. That's too bad. Sorry Chicago, maybe next time.

I'll try to do a closet post once a week or so, but if you get sick of it and prefer to see more pictures of Grace, let me know and I'll stop :) hehe

|| Outfit ||

Top: Classiques entier

Skirt: White house Black Market

Shoes: Prada 

Watch: Birthday gift from Aaron (Skagen)
Bracelet: Forever 21



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Birthday dinner

Korean Barbecue

Today was a great day. I had a productive day at work, came home to Grace giggling and smiling up a storm, talked with my best friend Rachelle on the phone for awhile (saw her growing baby bump on facetime), followed by Mommy Chen's Korean Barbecue recipe oven sizzled by master griller Aaron Chan. This is by far the best KBBQ recipe I've ever had (second to Shilla in New York). I dare say that it MAY even be better than SanSoo Gapsan in Chicago. 

What's the recipe, you wonder?

1) 4-5 Lbs Korean BBQ beef (may be found at Sam's club)
2) A bottle of this stuff (may be found at any asian grocery store):

3) Some extra garlic and sugar- to your heart's content. 
4) Optional- Pear slices
5) Put it all into a large ziplock freezer bag and marinate overnight
6) Oven broil approximately 4 minutes on each side
7) Ready to serve!

Deeeeelicious! And simple! Grace looked like she really wanted to have some. She ended up zonking out pretty early.

Thanks again for all the birthday wishes!

Last day in my 20's. Getting older and happier :)

In less than 3 hours, I will turn 30. As a Geriatrician, there is a general understanding that around the 30  year old mark is the peak age where things start to go "down hill". Muscle mass will slowly begin to decrease, metabolism slows down, organ function gradually declines, etc.... before you know it, you'll notice that first strand of white hair (I probably already have more than 100). What's that pain in your joints? Is that arthritis? I got out of bed a little too quickly the other day and felt my back snap, followed by some pain and the first thought that went through my head was, "maybe I now have a vertebral compression fracture?!" I think I'm hanging around old people too much.

Although the thought of aging generally carries a scary stigma, it is also an extremely beautiful thing. I look back and think of all that I've been able to experience in the past 30 years, and I feel so incredibly blessed. I remember back in 2nd grade, our class wrote an essay on what our lives will be like when we're 30. I had written that I would be a cop- hunting criminals for a living. I would have 2 kids and 1 dog. I would live in a floating pink house with rainbow slides and tunnels. We even drew a picture of what we would look like in the future. I drew myself with a hideous fro and gigantic earrings. It's funny how we perceived things back then. I do kinda wish I lived in a floating pink house though.

Each year brings new adventures and new blessings. I still can't believe where I am today. Sometimes I have to just take a step back and process things to myself. Holy cow... am I really MARRIED? Crap, am I really a doctor? I finished residency already and I'm handling people's lives?? Am I really ready for this? What's that little person doing in my home.... shoot, is that my BABY? I'm a MOM?

Life is flying by so fast, I wish things could just slow down so I can enjoy each moment more thoroughly. I must say though, each year has brought so much more happiness. I have never been so happy. Each day, we're given a new opportunity to enjoy this beautiful thing called life, and to be filled with more and more abundance- not with material things, but with experiences, joy, love, happiness...

For my birthday this year, Aaron got me a watch. Normally I don't wear watches. I've gone through at least 3 of them because I either lose them, or they run out of battery and I'm too lazy to replace them. This watch brought tears to my eyes. Not only is it beautiful, but Aaron explained that this watch is to signify us going through time together. We have been through a lot these past few years, and we will continue to experience life together for many years ahead of us. I realized that I'm not afraid to age. I look forward to the years to come because God has given me a wonderful husband, family and friends. He has given me a wonderful life to live. We shouldn't be afraid of what's to come.

I wonder what the next decade will bring? :)

Thank you for all the warm birthday wishes on facebook already! I appreciate all of you so much!

Grace is 9 months old!

Grace is 9 months old! She has been home for 7 weeks now, and is doing really well. She hasn’t had any seizures!!!! Her left side is getting stronger and she is just the happiest baby ever. She still has a pretty large pocket of fluid on the right side of her head. It doesn’t seem to be getting any smaller, but the neurosurgeons say that it may take a few months to go away. She’s starting to sit by herself again, although she still needs a little bit of support. 2 weeks ago, she was able to experience being a flower girl at Jackie and Thomas’s wedding in Chicago! We are so lucky to have her, and we are so happy that she has been doing well. Thank you all again so much for her prayers. Please continue to pray for her recovery, that we will be able to taper her off her seizure medicines successfully without any recurrence of seizures, and that she will continue to grow and develop well despite her limitations. She will have another MRI in October to take another look at her brain. We hope that those results will turn out well. Grace’s journey continues, and we will continue to keep you updated on her progress!

Grace's incredible story- Previous post July 21st

Grace's Incredible story

Many of you are probably wondering about what happened to Grace these past several months. I’m sorry it’s taken us so long to update you guys, but now that the dust has somewhat settled, we’d like to share her incredible story.

Grace was born in November- healthy, happy and vibrant. We never imagined that she would have any problems at such a young age. When she was 10 days old, I was feeding her in the middle of the night when she suddenly developed brief jerking movements of her arms and head. It looked like a small seizure to me, but newborns do such strange things with their movements I wasn’t quite sure what to make of it. 5 minutes later, she did it again. Then again and again. I knew immediately at that time that we had to take her to the hospital. She was having clusters of seizures.

That first hospitalization was scary. We didn’t know what was going on. Little did we know, this was only the beginning. The doctors at the Mayo Clinic were wonderful, but they weren’t quite sure initially what to tell us either. All her labs, imaging studies, MRI scans looked normal. Her EEG (electroencephalogram) did confirm that she has seizures but we didn’t know what the cause was. All we knew was that something was disturbing her brain electrical activity. Scary words were brought up that could be the cause- words like possibly “metabolic disorder, enzyme deficiencies, rare genetic abnormalities..” Aaron and I were absolutely heartbroken. We cradled our precious little girl in our arms, preparing to lose our third child and prayed God would give us answers. At that time we were so worried and scared, all we wanted were just some answers and for Grace to be okay. We went home that week with some new medicines that helped her seizures, but still completely clueless about the cause. In the back of my mind, coming from a medical background, I was digging into my distant knowledge of pediatric neurology and thinking of the worse case scenarios. Fabry’s/Krabbe’s/Sandoff’s diseases…Adrenoleukodystrophies? Grace probably has some rare metabolic genetic disease that will consume her life soon, and we won’t have her for very long. My mind was consumed with questions, and I poured over literature and readings about pediatric epilepsy. The information I gathered was not encouraging at all, infact made things worse. I lost many nights of sleep, either watching Grace’s every movement or researching literature about her condition. I had never felt so helpless in my life, and was so devastated that this was happening to a tiny, innocent little baby who barely had a chance at life.

Luckily, our team of neurologists (some of the most thorough, compassionate and intelligent people I have ever met), took the time to take a much closer look at her MRI scan and noticed an area over the right side that didn’t look normal. It was so subtle that it was initially missed. All the EEG studies correlated to her seizures coming from that focal area of her brain. With these findings, they felt confident calling this area of seizure focus a “cortical dysplasia” which is basically an area of the brain where the nerve cells didn’t migrate normally during development. As strange as it sounds, we were actually overjoyed to hear this information. We had a diagnosis that was not terminal. We had answers. Bad news? Cortical dysplasias are a notorious cause for seizures and will not go away unless it is removed surgically. She will eventually need to have brain surgery. If not, she may have seizures for the rest of her life. The thought of brain surgery was terrifying, but in our minds at least cortical dysplasia is something that is potentially treatable. The recommendations were to grow her a little more until she’s at least 6 months old, ideally a year old. Her little brain at 10 days old was way too fragile for such a major surgery. We brought her home on a few medicines to help control her seizures (one of them is quite expensive- Sabril, which is newer on the market and would cost us >$20,000 a month if we didn’t have Mayo insurance)

Grace was seizure free for 5 wonderful months. We watched her grow each day. She was developing so well, smiling and laughing with us all the time. She loved people and being around strangers. We watched all her milestones evolve. She was rolling over, sitting by herself, trying to crawl… it was incredible. We enjoyed every moment of it and were so happy there weren’t any seizures. In fact, there were times when we almost forgot that she had health problems until we had to give her medicines at night. We tried to forget that she will need brain surgery in half a year

We were reminded again all too soon on Memorial day weekend. On our way back from Chicago, Grace wasn’t acting right in the car. She was staring off into space and wouldn’t stop drooling. She looked a little swollen around the face and seemed like she was having a hard time breathing. We took her to a local ER, where she was treated for what we assumed to be an anaphylactic reaction to something she may have eaten. However, looking back, this may have been her first atypical seizure after all this time. She bounced back just fine we were able to take her home. The next day, on my way back from work, mom called from home, “I’m calling 911, Grace is having seizures again and it won’t stop”. This time, she was in status epilepticus (non-stop seizures) and it went on for 45 minutes before we were finally able to control it.

That was the beginning of our 6 week nightmare in the hospital. Everything went by in a blur, I don’t even remember most of the details. Sometimes I think my mind blocks out things subconsciously so that I don’t have to think about it. Maybe I have some temporary memory loss from all the sleep deprivation and stress.

The doctors had a really hard time getting her seizures under control. The first week, we had to repeat all of her studies including EEG monitoring that lasted several days, repeating MRI’s that required for her to be intubated, blood draws, IVs. She had wires hanging from every extremity that made it difficult for us to hold her and comfort her. This whole time she was having seizures that required rescue medicines to stop them. Unfortunately the rescue medicines would make her extremely drowsy and suppress her breathing. At one point she aspirated on some of her secretions during her seizure and had difficulty maintaining her oxygen. I remember getting into a heated discussion with one of the interns at night because he was reluctant to treat her for aspiration pneumonia despite clinical and radiographic evidence. Blood work was ordered instead, which woke her up and she went into status epilepticus again. Basically, by the end of the week our routine was trying to get Grace to take naps, because once she was awake, she would have seizures. We did everything we could to keep her asleep. When she had her seizures, she looked at us with her helpless eyes and would cry afterwards. She was so uncomfortable, and we would try our best to smile and comfort her but we were screaming on the inside. Things weren’t working. Things were getting worse and we just didn’t know what to do. Finally after a week of this routine, despite being maxed out on four medicines, she finally had to be intubated and transferred in the ICU where she was put on a continuous drip to suppress her seizures. Sure enough, she also had aspiration pneumonia.

This was probably one of the darkest and most difficult times Aaron and I have ever gone through. We had a LOT of support from all of our friends nationwide, thank you to everyone who have prayed for us and kept us in your thoughts. Our dear friends, Jon, Rachel and Annabelle Le were among those who were there for us from the very beginning. We met them at Autumn Ridge Church not long ago, but they have become one of our closet friends here in Rochester. Rachel was able to get me in touch with another family from our church- Tait and Jaci Shanafelt, who also went through health difficulties with their family and had given a testimony at Church several months ago. Their experiences in the past helped us identify with another family and gave us hope and support. Through them, we were able to meet Dr. Sheri Crowe, another member of Autumn Ridge Church and a pediatric intensivist who just so happened to be working in the ICU that same week. She intubated Grace, treated her with the utmost, thorough care and provided our family with such amazing support. It’s so incredible the people God put in our lives and how He interconnects all of us together. It’s no coincidence that we meet these people.

Grace had to undergo brain surgery early because her seizures became so difficult to control. There was no way we could bring her home with that amount of medicines and the frequency of seizures she was having despite being on those medicines. We were relieved when we met the neurosurgeon, Dr. Wetjen who was able to take her to surgery almost immediately. Aaron and I were so grateful that we were receiving care at Mayo, because I don’t think things would’ve been expedited so quickly at any other institution.

The surgery took about 4 hours. Afterwards, I was just so happy to see that she was still alive. Her face was a little swollen and her right eye was swollen shut, but she was extubated pretty quickly. She looked at us afterwards and smiled a few times. Our hearts melted, and we were filled with hope that this was the end of it all. We can take her home now, she will have no more seizures, and all will be okay. We let our guards down  a little too early because her seizures came back within a few days. This time, worse than before. This time, she was having them in her sleep and unknowingly- a term that is called “Subclinical seizures”. This is worse because she was actually having more than is observed by us. The seizures were waking her up from sleep and she was not able to get a good night’s rest. This sleep deprivation also made the seizures worse.

Another EEG and MRI had to be repeated. It showed that a residual part of the abnormal tissue still remains, a little deeper. They wanted to make sure that this was the only place of seizure focus, so after another week on the ventilator, she underwent a larger surgery, this time in a two part process. The first part exposed her brain as a grid map is placed on top to map out any other areas of abnormal electrical activity. Her brain is exposed without any bone flap (they kept it in a freezer somewhere) for about 48 hours. This was able to identify that there were actually more areas of her brain that were irritated that the MRI could not visually see. It extended more posterior (backwards) and lateral (towards her ear). These brain areas also needed to be removed in order to ensure that there will be no more seizures. The only problem with that is, as you go more far back in the brain, you start encroaching into areas that control motor function. It would be expected that she may be weak on her left side (arms, legs, face). She may not be able to suck very well or take in food. If this was the case, she may need a feeding tube. All this was terrifying, but we knew it had to be done.

The waiting game was the hardest. We wanted the surgeries to happen as soon as possible. By this time, we had already been in the hospital for 4 weeks, taking shifts watching her, worrying, waiting…

Praise God that the surgeries went well. As expected, her left side could not move at all. Her left face drooped a bit. Her post op course was complicated by respiratory related issues and she kept dropping her oxygen levels. She couldn’t clear her secretions because of all the medicines so it clogged up her left lung. Fortunately the tube didn’t have to go back in. Afterwards, she couldn’t suck very well, but we worked on it for a day and she remembered finally how much she liked to eat, and was able to take in her bottle. Each day, we prayed hard that we wouldn’t see any seizures. We haven’t seen any yet :) It’s been 3 weeks since her last surgeries and we were finally able to bring her home 2 weeks ago. Her left side is finally able to move a bit more now and she’s giving us some more smiles and laughter now.

I can’t tell you all that we learned from this journey. It’s one of those things that is almost impossible to explain. All I can say is that God is real. God is visceral. He provides, sustains, strengthens and loves you. He answers prayers. He listens and comforts. So many things happened along the way that is no way just a coincidence. Aaron and I have never felt His presence so near. This is has been the most difficult experience, but we still cannot stop praising Him for what He has done. He is a God of miracles and a God of Hope. We know that future is unknown, but we are ready to face whatever obstacles come at us, because this experience has prepared us for that. Every chapter of our lives have been created to prepare us for the next, and I’m so grateful for the chance to be alive, live this life, experience being a mom to this beautiful baby, and so many other things.

One passage I kept reciting over and over whenever I got nervous, anxious or afraid was Phillipians 4: 6-7

“Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.”

There were some times I didn’t even know how to pray. Jaci Shanafelt reminded me, even if you don’t know how to pray during this time, it’s okay because God hears your soul.

We were supported by so many people across the nation from Cleveland, Ohio to the West Coast, people we’ve never met before but prayed faithfully for Grace, by visitors (Rachelle and Michael Keng, Ethan, Annie and Seth Chan. Autumn Ridge Church friends, Mark and Mira, Church members we’ve never even met before, co-workers from the Geriatric department of Mayo, family from Chicago, friends from Rochester Chinese fellowship) Thank you SO SO much for coming. Seeing you guys really helped uplift our spirits, we appreciate you guys so much. Thank you Chicago friends and CCF family for your prayers. Thank you for Rachel, Jon and Annabelle Le for coming to visit us almost EVERY single day, dropping off food, ice-teas, offering an encouraging presence, taking me to the mall during Grace’s surgery! Thank you to Jaci Shanafelt and family for visiting us in the hospital even though we missed you. We are grateful for the meal you made for us, the book of Hope, and for giving us SO much hope and reminding me that things will be okay. Thank you to Dr. Sheri Crowe and pediatric ICU staff. Thank you Rochester Chinese fellowship, ShiGao and family, YeDan and others for your prayers and gathering together to specifically pray and fast for Grace before her surgeries. I cannot begin to express my gratitude. Thank you also to the LCCC Lansing Chinese Fellowship for your prayers and supporting our family through this.

Some incredible miracles that happened with Grace-

God gave her 5 months of seizure freedom that allowed her to develop, grow and prepare for the surgery. He provided financial means for supporting Grace and her medicines. He gave us incredible friends and support placed in our lives from Autumn Ridge Church and across the nation. She survived through 3 extensive brain surgeries and is now seizure free. Tell me that’s not a miracle.