Tuesday, August 07, 2007
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Emily's SDR Story - unplugged
I copied Emily's story and our testimony about Emily from my personal website. It's pretty long and it's pretty much my blog from when we found out about SDR to Emily's serial cast to the day she got those casts removed. For a little 4 year old, she really endured alot of pain and determination to do it and defeat the odds against her.
Hope you enjoy it. I love sharing this story because it also proves that those professionals who said to just "deal with Emily's condition" can eat what they said to us. Those professionals who were advising us against surgery for Emily can think twice about believing in the parent and in the child. And those professionals who said Emily won't strive in a "normal school" ? Oh how STUPID they must feel for not believing in a mother's HOPE!!! I'll stop venting and just let you read this babbling blog by me!
Emily's History and the Journey leading up to
St. Louis Children's Hospital
** miracle happened in a total span of 3 weeks **Emily's Birthdate: January 1, 2002 - first new years baby at UCI
Born: 8:40PM
Hospital: UCI Medical Center in Irvine, California.
6 weeks prematurePhysician: Dr. Moon Kim, my father's closest friend and alumni from Yonsei Medical School.
** This website was created while we were at St Louis Children's hospital - mostly from Emily's hospital room and the hospital's library.
I felt compelled to write Emily's story from a mother's heart. **Emily was born premature. Emily was colicky and also a soy baby. It was at the age of one that Emily took cow's milk without any problems. And she also started to be a better sleeper as well. Emily was smart baby. She sat up like any other babies. It
wasn't until 15 months that I started to sense that something just wasn't right because Emily wasn't interested in walking. I took her to her pediatrician, but the pediatrician said everything was fine. She is just a late walker. I got second opinion from other pediatricians who also said that she was just a late
walker because there was no other clues that would say Emily was a late walker. But I was not settled on that answer...Around the age of 2, the orthopedic surgeon assumed (never diagnosed and written in her file) that Emily had a very mild case of Spastic Diplegia (a form of cerebral palsy that affects the lower legs).
This was extremely difficult for us to accept. We did not believe it for a minute that Emily had any disability or would be categorized with a disability. The orthopedist told us that Emily only needed physical therapy to strengthen her trunk muscles and legs. And she would need to wear braces for her legs.
For the next year or so, David & I tried so hard to find a solution to "fix" Emily. We tried every possible humanly ways using our intelligence, our resources, our contacts, etc... We, even arrogantly believed that we could find a solution to this diagnosis. But in the meantime, all we could do was have Emily take physical therapy at CHOC once to twice a week, which is the only thing that the orthopedic told us to do.
Though David & I knew that we needed to trust God, it was just very difficult to do physical therapy and nothing else. Just waiting for "Emily's legs to get better" was extremely difficult. It was also very difficult in not having a support group. You can call it our pride, but it was very difficult for David and myself to just sit back and do nothing.
On January 2006, I decided to completely submit everything that I could give and do to God especially my pride.
I decided to go to BSF (Bible Study Fellowship) to get my relationship back on the right track with the Lord. (This has taken me 10 years to return to Bible Study Fellowship). And I also decided to dedicate 2006 to Emily and ask God to show us a way to help Emily "fix her legs".Because Emily was improving with her therapy sessions, we decided to reduce PT to once every three months. We knew that Emily was getting better and gaining more speed. But we also knew that her balance remained very poor even though she could move around by herself independently.
Emily truly worked hard on her own with a lot of help from her preschool, Creators Corner. God blessed us with this special preschool - which is another testimony of its own. Her teachers and friends have truly encouraged and given Emily so much self-esteem. We believe that the majority (90%) of her improvement have come from her preschool experience with her peers.
Back in January, I was really uneasy about how to prepare Emily for kindergarten and the "real school" world. Kids are mean. That's just a fact. Kids stare...Kids pick on other kids...Kids are mean. I couldn't see myself putting Emily through that environment, but did not know how to protect her. Was it to send her to a private school? Where? Laguna Niguel has a very loving private school called Stonybrook. Should we send her to Mariners Christian School? I found out from BSF that many of the teachers and principal there are wonderful and caring people. I did not know.
Every time I would think about the future of Emily's schooling, I would be so sick to my stomach.
I prayed a lot. I shared a lot with Christine, my BSF leader. I prayed and shared a lot with God because I knew He would understand my inner thoughts and frustrations. I could go to Him at anytime, about anything. I could ask Him for the most ridiculous miracle or for the simplest thought. I could ask Him to help me not to be so sad and to accept the circumstance. But the last statement is the one I struggled with the most...
For some reason, it was hard for me to share about my daughter with my friends here and back east. (1) Those friends do not understand what I am going through (2) I can't stand having a pity party or someone feeling sorry for me (3) I'm sharing about my precious Emily. How can I just share this heartache with anyone? How can I share this precious jewel that God gave to David and me with just anyone who, in the end, would not really understand...would not really pray for her...would just hear it and dismiss it from their thoughts and minds?
Growing up, I was always number one whether it was school or at home. IF I was not number one or getting an "A", I knew there was always another chance to "FIX IT". And being helpless in Emily's situation drove me insane. But I knew I could ask God to hear me and I knew I could ask HIM, Our Creator, to "FIX EMILY'S LEGS". ...And that is exactly what I did.Here is a recap of how we found out about SDR and the trip to St. Louis for the surgery.
All of this happened in the span of a few weeks!!!
March 19, 2006
The evening of March 19, 2006 (Sunday) after we put Emily to bed, David was watching his DUKE basketball on TV. I was sitting on my favorite corner spot on the family room couch and surfing on the web.
Usually I would surf on Pottery Barn Kids, Williams-Sonoma, or Hanna Anderson. But for some reason I wanted to search on mild spastic diplegia. I started to find new information about it and many stories of other parents who have had similar experiences as ourselves. So being intrigued to read about other parents stories, I decided to click on the other links and continued reading.
I eventually found a site called kid power. http://www.kid-power.org/. There I decided to subscribe to a site where I can exchange stories from other parents whose had "special kids".
March 20, 2006
I received several emails from mothers from all over the USA. There are 2 particular emails that I received. One is from a mother name Julia in New Jersey. She emailed me and said that my story of Emily sounds like a mirror story of her son when her son was Emily's age.
Julia mentioned to me that her son could go to a normal school and do all the things as other kids except for the physical activities. Her son had difficulty with balance and gait. Then Julia mentioned that her son had a surgery called Selective Dorsal Rhizotomy at St. Louis Children's Hospital when he was 4 yrs old. She shared how her son can now jump, run, ride a scooter, rollerblades, etc. do all the things a normal child his age does. (He is now 5 yrs old).
I received another email from a mother in Colorado. She has a daughter who also had SDR in St. Louis at the age of 4. Prior to surgery, her daughter also had difficulty with balance and gait. Though she did not need to use a walker or anything, she wore DAFOs just like Emily.
With these stories, I became more curious about this Selective Dorsal Rhizotomy surgery. If you are curious to learn more about Selective Dorsal Rhizotomy, click here.
Both mothers showed me how much their children benefited from this spinal surgery. The girl from Colorado is now a yellow belt in tae kwon do. She also does gymnastics and dance. And she is only 6 years old.
So I went to the St Louis Children's Hospital web site and and read about this procedure. By this time, David joined me because he saw me say, "Oh my goodness. I can't believe what I am finding. I think we found something for Emily's legs!!" We read about the procedure; we read the list of criteria needed to be considered for SDR. And Emily met all of the criteria.
The doctor who performs the Selective Dorsal Rhizotomy is Dr. T. S. Park, who is the renown head pediatric neurosurgeon at St. Louis Children's Hospital. His method of performing SDR is different from others. He removes one vertebrae and finds the nerve that is causing the spasticity. His success rate is perfect. He has performed this surgery over 1000 times.
In addition to this information about Dr. Park, we found out that he graduated from Yonsei Medical School in South Korea, which is the same medical school my father graduated from. Though my father is 10 years his senior, I was getting extremely excited because I knew that my father would contact Dr. Park. Apparently, Yonsei alumni are a fairly close knit community, and Dr. Park would personally take better care of Emily. (and he did. He took extra extra good care of Emily. He told his staff and colleagues about his relationship with my father. Emily received VIP treatment there). Thank you, dad...
March 21, 2006
David sends an email to Dr. Park (email address which we found online) with detailed information about Emily. And to see if Emily qualifies for SDR. David expected that by sending a letter to Dr. Park through the email address found online, he would 99% not hear from Dr. Park himself. Since he is such a prominent physician and very busy man, David expected to hear from one of his associates in few months or so...
March 22, 2006
David receives an email response from Dr Park himself in less than one day. Dr. Park told us that from David's email, Emily does sound like a perfect candidate. And he will have his physical therapist be in touch with us via telephone and email Her name is Joan Puglisi.
March 23, 2006
Joan is in touch with David via telephone. She tells him what needs to be sent for the evaluation.
So now we start to gather all the necessary items to mail out to St. Louis. We got Emily's x-ray on March 28th, found the MRI from our files, completed out the entire evaluation information, and mailed the entire packet on
April 1, 2006.
April 4, 2006
David receives a phone call from Joan that Emily's evaluation has been approved. And got a date to schedule surgery for April 18th. Shelby was at our house for playdate; so I was able to share the story with Marie.
April 8, 2006
David's parents planned trip to California. Dave's dad will leave on Saturday, April 15th; David's mom will fly out to St. Louis with us on April 16th.
And then it was just getting things ready for our trip to St. Louis.
David was able to find 6 plane tickets on Southwest at the last minute. (he purchased it from craigslist). He also was able to book 2 hotel rooms at ParkView Hotel, which is a hotel that has a indoor connection bridge to the St. Louis Children's hospital.
April 13, 2006
What an amazing school Emily is part of!!! When we went to pick her up after dance class, I saw Ms Carol. She gave me this huge poster with good luck message and handprints from her friends and teachers. It was so sweet. We have it up in her playroom.
Emily also received a Build a Bear cat from her best friend Shelby. And Shelby recorded a special message for Emily: Hi Emily. This is Shelby. I hope your legs get better. I miss you." It was so cute and so so special. Emily loves to squeeze the cat and hear her friend's voice. She named the cat, Shelby cat.
We were blessed to see how much the teachers there care for Emily. I had teary eyes, but tried hard to hold back my tears. I couldn't help but to thank GOD for bringing Emily to Creator's Corner. Thank you, Creator's Corner.
April 15, 2006
What an amazing Saturday. Emily had so many friends stop by to wish her good luck on her surgery.
Crystal (Emily's classmate) came over with presents and also played with Emily for awhile.
Katrina gave Emily coloring books to keep her occupied on the plane and hospital. Thank you, Katrina!
Aunt Bessie came by too with a care package for Emily to play with on the airplane. I also appreciated Bessie coming over and saying a special prayer for Emily and successful surgery.
One of my oldest and closest friend Linda Hwang Pyun whom I've known since 10th grade at Phillips Exeter Academy and is now living in Allen, Texas had mailed a huge care package for Emily too.
And leading up to this day we had so many caring friends who sent us cards, coloring books, toys all for Emily to occupy herself on the plane and in the hospital. Special thanks to Ruth, Raymond, and Iris, Stephanie, Alan, Marcus and Ally. And many thanks to so so many people who are praying for Emily's surgery and for her post-op treatments too.
We are truly feeling the love and care from so many friends. Wow! Thank you very very much.
April 16, 2006
Six of us are flying out of Irvine to St. Louis. We had one stop in Las Vegas. We had to take a wheelchair. Emily played with it as a new toy. And we also got great service due to Emily and her wheelchair. We arrived to St. Louis and check into our hotel. We eat at Applebee's which is the restaurant inside the hotel.
Up to this point, God has been amazing in paving out every perfect detail for us. A renown physician is able to email us back on the next day. We are able to gather everything we need to mail out the pre-evaluation packet to Joan Puglisi within one week. And then within a week, we receive a phone call with a scheduled surgery date for 2 weeks.I think I did many "happy cries" because God showed me his love and grace. He also heard my sadness and cry in my heart.
One thing Dr. Park told us is that there is a HUGE difference between a "mild disability and NO disability." And after Emily has SDR, she will have "NO disability". She will also not need any orthopedic surgeries later on. She will have balance and will not fall. And though her gait will not be 100%, it will be normal enough. On a scale of 1= very bad and 10=perfect, Emily will be an "8". She will also be able to run, play hopscotch, jump rope, and do all the things that her little friends can do. And boy! That just brings tears of joy, joy, joy into my heart...into any mother's heart! Who would want a child with mild disability If there is an option for NO disability.
There were no doctors here in Orange County who mentioned any "possibilities" for Emily except to continue physical therapy, build her self-esteem. And IF she needs orthopedic surgery, that will be possible when she turns around 9 years old. And to me, that answer was not acceptable. And for David, he was willing to travel anywhere in the world if another option was available.I always remember what my mom told me. She said that God has blessed me tremendously all of my life. Without an ounce of struggles or hardships in my life, I went through life without putting God first; but I think God wanted to show me as an adult that He can also bless me if I surrender and trust completely in Him. When I was growing up, my mom was the one who would tell me that God has brought many blessings into my life. But now that I am an adult, I needed to see that God can bring blessings into my adult life and into my own family's life. And He finally did in His perfect time.
What is even more perfect is how David's company RiverOne was bought out by I2 Technologies, Inc. With this transition, David got a better health insurance and also had more flexibility in his schedule to make it out for Emily's surgery.
Even the smallest things as finding parking spots, good rooms in the hotel on the third floor, which happened to be the floor with the connection bridge to the children's hospital, good seats on airplane, kindness of the doctors and staff here at the hospital, getting a nice hospital room for Emily, etc... all happened by the grace of God.
I had never been a holy person all of my life. And even now I don't consider myself to be holy thou art by any chance. But I am proud to say that I believe God is very real. And God does provide the best for his children in His Perfect Time. I am so proud to say I am a child of God. God is truly an awesome God!
I do not believe that any of this is coincidence. If any of you think it is just a coincidence, I am really sad for you. My God in Heaven heard every last tear of sadness. He heard my anger and rage when I would receive pity for Emily. He heard my frustration and denial when someone would call Emily, "disabled", "special needs child", " handicapped". He heard my anger when someone would ask me if Emily can go to a normal school or would have to go to a special education school. He has even heard me ask Him if God is punishing Emily for all the wicked things I did growing up. And God would say, "no, I am not."God has heard it all both things that I may have said, mumbled, and buried deep deep down in my most inner private soul. And I love Him so much for hearing and listening to me.
April 17, 2006
Emily had a busy morning starting at 7:30am when she has an appointment with Dr. Park's office. Emily was evaluated. We met with Dr. Park, Joan, and also a physical therapist who gives Emily an evaluation. This process took almost 6 hours. Afterwards we took Emily to the St. Louis Zoo.
St. Louis Zoo which is free. $9.00 parking. Nice zoo.
April 18, 2006: SURGERY DATE
Emily is scheduled for surgery. We arrive at same day surgery at 6:30am. Emily is set for surgery at 7:45am.
Her surgery lasted total of 4 hours.
Emily is then in Pediatric ICU for 48 hours.
Then she is moved up to 12th floor.
Emily has not eaten anything. She is on lots of IVs....
She has a "zipper" on her back of her spine where the incision was made.
April 20, 2006
Emily has her first real meal today. Up till now she could not have anything to eat except ice chips. Her tummy was so empty and flat. But she enjoyed having a plum, chicken nuggets, and few bites of mac n cheese. Unable to move. Lies flat on her back. Is on lots of pain medication. Sleeping most of the day and night.
April 21, 2006
Suppository used. She was not a happy camper, but fell into a deep sleep after the suppository worked.
Emily also received 2 physical therapy sessions today.
Medicine reduced. Lots of machines taken away now.
First one included sitting up in her bed. She was crying because it was so painful. She also learned to roll to her side. Still crying from the pain.
In the afternoon, we worked on moving her into the wheelchair. Also having her sit upright, feet flat on the floor standing. She cried in such pain. It was hard to see your little girl in such pain.
We took her to the 8th floor garden and down to 1st floor gift store. There was also a playroom on the 8th floor too - separated by ages.
April 22, 2006
Emily received morning therapy on 5th floor where she practiced rolling, crawling, sitting, and standing.
In the afternoon, the therapist used a walker to get Emily upright and helped her to move her feet and learn to walk again.
The agony on her face with each exercise was excruciating. But she is such a tough cookie that she tried everything to the best of her ability. She would bite her lips, cringe her forehead and eyes, you could see her wobbly legs and arms, but she kept going without stopping.
April 23, 2006
Discharge from the hospital today and going home.
Emily had therapy at 8:30am.
Flight leaving at 1:30pm.
Should arrive at home 4:45pmWhen we go back home it'll be alot of work to get Emily up and running with her new legs that God fixed. He used Dr Park's perfected technique to fix Emily's legs.
With physical therapy 4 times a week and lots of exercises at home, my prayer is that God will strengthen Emily's entire body and mind to use these new legs that God has graciously given to her. Emily is our angel. And I will be sure share this story with her when she is older.We just finished her last therapy session here in St. Louis. Emily walked holding my hands and Dawn, the therapist, hands. Her facial expression showed she was in pain, but she didn't say a peep or cry. She was so determined. What a strong girl she is, and just so brave!!!
She had one and half hours of therapy today. Did lots of stretching exercises, rolling, hamstring curls, etc...
We have to keep in mind that she got "new legs" from God. And she has to relearn to use those "new legs". But this is truly a miracle in itself.
We can't wait to see how much she improves everyday. The therapist said that within 2 weeks, we will see a huge improvement.
Now it'll be lots of intense physical therapy everyday for the next 4-6 months.
The therapist said swimming will be great. So we'll find her a private swim instructor for that. David even said that we may want to build a swimming pool in our California size backyard! (so for our east coast friends, this is humorous, huh?).
Emily can return to school in 2-3 weeks while continuing therapy.And we will be back in St. Louis or Houston (depending on where Dr. Park is) for follow-up visit.
One additional thing that Emily will need to have done is something called Serial Casting. This is necessary because Emily hyper extends her knees. This serial casting will stretch and elongate her muscles from the calf to her heel cord. Serial casting lasts for 2-3 weeks. And every week her cast will have to be adjusted to get more stretches. This will be uncomfortable, but it'll really benefit her walking and balance in the long run.
I feel bad that Emily will have to endure this too. And I know she will hate it as well. I just hope and pray that God will ease her discomfort and make this process a complete success.On Emily's "temporary" last day of preschool, April 13, 2006 (Thursday), Ms. Carol and Mr. Mark gave Emily an amazing farewell sendoff. She received a big poster with handprints from her classmates. She also received this amazing talking cat from Shelby with Shelby's voice inside. Emily was sad and did not understand. I assured her that she will be returning to school as soon as her legs are strong enough to walk.
THE AIRPLANE EXPERIENCE RETURNING HOME TODAY (April 23, 2006)
What a great girl Emily was today. Emily got discharged at 10am. The nurses fell in love with Emily. She ordered Emily's favorite: grilled cheese sandwich for her to eat and told us to stay in the room as long as we wanted. We left the hospital at 11:30am and got the airport little before 12noon.
There was a huge group who were returning home from St.. Louis. So the airport was a complete zoo.
We took Southwest airline. And they treated Emily and the entire family super super well. The only thing that I was annoyed with but let it go was during security checkpoint. This woman did a thorough check on Emily. We had to get her out of the wheelchair. I was thinking to myself, "you got to be kidding. do you really think that we would hide drugs in our 4 yr old daughter who just had major spinal surgery?" What is this woman smoking?
Well the look on my face greeted alot of strangers who approached me and said, "I can't believe what that woman is doing." "That poor cutie pie. What are they thinking???" And one Southwest manager came up to me and apologized. I had to think that God had HIS little angels approach me to say, "don't get all worked up, Esther. Just smile and let it go." And that is exactly what I did. I just laughed because it was pretty humorous.Well when we got to the gate, we received first class treatment all the way. Emily was loved by the stewardess and the entire crew. Her comfort was so important to all of them. Even the stranger who sat behind us asked if we needed any help or assistance. He even offered his brand new neck pillow that he just purchased in the airport for Emily. To me, I knew that man was also an angel that God showed us.
Emily slept most of the way home. When her back hurt from sitting, she did not peep a cry. She held in her pain and just whispered, "mommy, ouch ouch. my back hurts." Then my mom and I laid her down horizontally making sure her back was straight. And the entire crew made sure Emily was comfortable and that her back was straight.
Thank you, God, for this flight and the crew. We got home in 5 hours. Emily came home smiling. She had a good dinner. We found a surprise on our front door with a care package, a balloon, and a card. I showed the present to Emily. As she was lying flat on the couch, she asked to open the card. It was from Rick, Connie, and Ethan Yee. Oh my goodness. That was so sweet for them to say, "welcome home, Emily!" We will never forget that kindness and care you guys gave to Emily. She loved the present took it to her bed. It's tucked in at the feet of her bed!
Caleb and Susan (my cousin) Whang stopped by with tons of balloons and strawberry ice cream to welcome Emily home.
What a great way to come home. We are very exhausted, but HAPPY exhausted. We are anxious to see Emily move around with her "new legs". Even tonight, she wiggled her toes. That was something she could not do before. God is showing us miracle after miracle through Emily.
CONCLUSION
We could ask and question why did this have to happen to Emily and be angry and frustrated. I have learned that God provides us with "good suffering" to give us more blessing and goodness in our lives. And God has used Emily's situation to show David and myself how Good God is and how PERFECT God is.
I think God taught me that I am not all that perfect even though I may have thought I was. God also showed me that only GOD is perfect and His timing is perfect. This experience also taught me that I need to always be grateful and thankful to God for this amazing miracle He has given to the Kim Family. And an amazing miracle He has given to Emily.
Now she will have no problems going to "real school" as she will have balance and able to do physical education.
Emily is truly a gift to us from God. And God has been awesome in reminding us that Emily received another amazing gift from our Good God! Praise Him!
Thank you, God, for leading us to St. Louis Hospital....
Thank you, God, for introducing us to Dr. T.S. Park and Joan Puglisi.
Thank you, God, for paving this entire journey for us.
Nothing was a coincidence. Only you, Lord, prepared this entire journey for us. And we know you that you haven't stopped. It's just a beginning...A Brand New Beginning!!!
We flew out on Easter Sunday = a new beginning for Emily.We will always remember every Easter the greatest gift God gave to Emily, which is a new chance in life with her new legs.
Dear Baltimore Mom (and Balto dad who could not be there), My Mom and Dad:
Thank you, Baltimore mom, my mom and dad for flying out with us to St. Louis, for all your support, sleepless nights, and prayers for Emily and for us.
David and I could not have done this without all of you.
Your support and strength have meant the world to us.
You listened to us when we were frustrated, grumpy, and tired. And you still gave us your support and told us it was okay to feel that way.
You are the best parents one could ask for.
And we all love you unconditionally.
You raised us to become good and kind people towards everyone. And that is how we want to raise Emily. Not only are you the best grandparents one can ask for; but you are truly the best parents!
We love you very very much.. And we love you too, Baltimore Dad, even though you could not fly out with us to St. Louis.We Love You so much..
David, Esther, and Emily
GOD'S DELAYS ARE NOT DENIALS
God's delays are not denials;
He has heard my prayers;
He knows all about my trials,
Knows my every care.God's delays are not denials,
Help is on the way;
He is watching over life's deals,
Bringing forth the day.God's delays are not denials,
I know I will find Him true;
Working through my life's darkest trials,
What is best for you.A Poem For the Parents...There are little eyes upon you,
And they are watching night and day;
There are little ears that quickly
Take in every word you say.There are little hands all eager
To do everything you do;
and a little girl who's dreaming
Of the day she'll be like you.You're the little girl's idol;
You're the wisest of the wise;
In her little mind, about you
No suspicions ever rise.She believes in you devotedly,
Holds all that you say and do,
She will say and do in your way
When she's grown up like you.There's a wide-eyed little girl
Who believes you're always right;
And her ears are always open,
And she watches day and night.You are setting an example
Every day in all you do;
For the little girl who's waiting
To grow up to be just like youApril 24, 2006 (Monday)
Ms. Carol, Emily's teacher, stopped by after her preschool. Emily had just woken up so she was groggy. I thought Ms. Carol was coming to just see Emily and to say hi. But to my surprise, Ms. Carol was here to have "school time" with Emily.
Ms. Carol brought the school curriculum and did it all with Emily including circle time, Zoophonics, storytime, memory verse, art time, and music time. Emily wanted me to go away so she could have "school" with Ms. Carol.
I was amazed at Ms. Carol's generosity. What teacher does that these days? I mean, maybe in a small rural town such as Friendly Frostburg, Maryland. But here in Irvine??? I couldn't help it but to give a thank you to God for Ms. Carol.
Ms. Carol wants to come everyday until Emily returns to school. She picks up Emily's "homework" and takes it back to school too.
Emily is so lucky to have this amazing teacher whom I truly believe does care so much for her.
So thank you, Ms. Carol, for your unconditional kindness. Your kind heart will never be forgotten. And I will always remind Ms. Carol of your kindness. You have set such a great example for Emily.
David was speechless to see your kindness towards our Emily.
I will have to share a testimony about Creator's Corner. This is truly God's preschool and all of the teachers at this school are God's angels doing God's work.
April 25, 2006 (Tuesday)
Emily woke up and wanted to do her homework before Ms. Carol comes over today.Emily then did post-op exercises too with me. She has her first post-op therapy at CHOC today at 2pm.
God answered another prayer request for me today at 11am.
As I have been overly stressed at finding all afternoon timeslots for Emily's 4 times a week physical therapy I received a phone call from Nancy who was one of Emily's therapist when she was 2 years old.
Nancy said she unexpectedly has a 3pm opening on Wednesdays starting May 1, 2006!
So now Emily has all 4 days of PT all in the afternoon. So that is truly an answered prayer from God.May 1, 2006
Today Emily really wanted to visit her preschool. So we got there as the kids were walking to chapel. Emily wanted to go to the chapel too. She wanted to walk. I told her I could drive over so she didn't have to walk as far. But she wanted to walk. So we did. Ms. Betty was telling a story. Then she asked us to come down. Emily was happy to see everyone, but a bit overwhelmed with all the kids staring at her. The best part was when Ms. Betty was able to pray for Emily.She wants to return to school quickly. It was so nice to see her friends come up and say hi! Emily was happy to see her friends there - Crystal, Max, Katrina, Erin. She didn't see Shelby or Amanda. So Emily said she needed to stop by the school again this week. Maybe we will...
In the afternoon we had a 1:30pm appointment with Em's orthopedist. David spoke most of the time because I needed someone who could explain everything as quickly and concise to him. The doctor wanted to know what Emily has been up to. So we informed him about SDR that Emily had done on April 18, 2006 in
St. Louis. And the doctor said immediately said, " SDR was done by Dr. Park?" He didn't say great or anything like that. He was emotion-less. (But we knew the conflict and the "dislike competition" between orthopedics and neurosurgeons). ** Never liked this guy though he is supposed to be the best at CHOC and Orange County...blah blah blah...totally not impressed!I was surprised that he knew about Dr. Park and his particular techniques with SDR surgery for very mild spastic diplegia young patients. On a sidenote,this doctor was the orthopedic that Emily saw at the age of 2, and this doc never mentioned to us about SDR. (that was disappointing that this amazing procedure and type of surgery was never told to us by him.). His only recommendation was lots of physical therapy and look into a program for the disabled called CCS. But bygones be bygones...
Today, t he only thing he asked was if Emily goes to CCS. He did not ask how Emily is doing in other areas of her growth. He just assumed Emily would be going to a special education school.
I was a bit (no quite) defensive when he asked me that because when Emily was 2 years old, he mentioned that Emily would benefit from CCS. (CCS is an organization for disabled children who have mental disability as well as severe physical disability). And Emily does not qualify for that type of an organization. She did not qualify when she was 2 years old.
And definitely does not qualify at the age of 4.
He should have been able to identify that she doesn't qualify just by looking and hearing her respond to his questions. Emily is a sharp cookie! This crappy doctor is not for his lack of people skills. I was pissed...angry...mad! Yes. I am mad at this man.
But I was happy and proud to inform him that Emily attends a "regular" preschool and is doing just as well as any other 4 year old child. I told him that she was walking around without any walkers; just DAFOs. I also told him that her therapist at Children Hospital of Orange County (CHOC) even reduced her therapy sessions to once every 3 months because of her progress.I wanted to keep going on and on so that he would stop jumping to conclusion about my Emily and just throwing her into a "disabled" category . I was pretty angry with him once again because I truly believe that in that doctors eyes, if a child has some disability, that child will ALWAYS live and have that disability! And that made me angry and sad 2 years ago, and it did again today.
But God reminded me that HE found Dr. Park for Emily who believes in complete opposite: NO disability is completely different from MILD disability. And by Emily having SDR followed by intense physical therapy and his other prescriptions filled, Emily will have NO disability, NO orthopedic surgeries, NO physical therapies, NO Dafos or braces of anykind!! Now that is my kind of a physician! So on that note, I was happy that David did most of the talking.
This Doc was knocking my smart Emily down and I did not appreciate his insensitivity at all.
I proceeded to give all this anger and disgust to God. I wanted to let God know that I thought I was over the previous grudge against the doctor. But when he brought up CCS again, I did feel angry again. I asked God to forgive me for the enormous amount of anger I had stored inside of me because it was not in my place to judge this man. I needed to accept and be thankful that we found a person who can do the serial casting quickly for Emily in Irvine - 10 minutes from our home. See the positive and not dwell in the negative.God is teaching me to keep my cool...to be calm and collective in my thoughts...He is also teaching me that I can go to Him and vent to Him at anytime and all of the time. And that is exactly what I did today after we left his office.
The doctor may not the most kid friendly physician. But we aren't there to make another friend; we just want a capable person to do what Dr. T.S. Park recommended for Emily. God showed us that Dr. Park is a very very nice man who is also a world renown neurosurgeon. And that there is a connection between him and my father.
As I was paying our co-pay and Emily was picking up a toy on our way out, the doctor could have said good-bye to her and to her parents!!! Geeezzzzzzz....
I couldn't help but to think why my dad got so much love and was ver y popular when he was practicing in Maryland.
Even police officers wouldn't give him a ticket when they found out who he was. Sometimes the police would escort my dad by turning on the siren so that my dad could get to his destination quicker! No kidding!
Most of the time they would say, you're my grandma or cousin's doctor!!! He never believed in a time limit with patients. He believed in listening to his patients carefully and lovingly. I guess growing up with this type of a father/doctor, I expect it from others in his profession. And when I don't it is so disappointing.......For the facts: this doctor mentioned that 2 weeks should do it for serial casting. as long as she gets enough stretching through physical activities.
Our prayer is that Emily will be able to tolerate it 24/7 especially at sleeping time and that the cast will come off and be done with on May 15th!Her e is a picture of her pink serial cast. She has an appointment next Monday and then the following.
May 2, 2006
(Emily in her serial casts and the sandals to go with it).Well today was Emily's first day of physical therapy with her serial casts on. Oh but what an ordeal and stress we are going through. Why can't the therapists here just follow the protocol given to us by Dr. Park and his staff in St. Louis? Dr. Park knows what to do in order for Emily to reach the "no disability". But today at PT, the therapist was rolling her eyes and persistent about no need for serial cast, once again. It doesn't matter how much we try to convey to the therapists here that serial cast will benefit Emily. And she is able to exercise and continue therapy with the cast on.
I sometimes wish we could just find a therapist who is willing to work with Emily and follow the simple protocols given to us by Dr. Park. That's all they need to do. We have the prescriptions and everything clearly notating what needs to be done. But we're constantly dealing with conflicts and their opinions. Well, we've followed CHOC's protocol for 2 years and it's gotten us nowhere. We follow Dr. Park and look how far we have progressed!
Ugh! I'm so frustrated. David is fuming and pissed. I told him to contact S**** and tell her again why we want them to follow the physician's instructions....
Well had to vent. I hope and pray that the therapists will comply for 4-6 months therapy. And I hope Emily's visit to therapy comes to an end after 6 months!
Okay. I guess I did a major gripe session this afternoon from what I wrote above. Nancy, one of the therapist, replied back to my email. And she was very kind about my email. My email simply stated why we want to follow the guidance of Dr. Park. I also wrote why we wanted to do everything as quickly as possible when the possibility is there. We want to give Emily the best future with normal life as possible. Anyways, Nancy was wonderful to respond back kindly and also understood where we were coming from. And I think she also understood why we are being so persistent in following the guidelines set to us by Dr. Park.
Seems like every time my emotions are about to burst, God brings peace down to me and a resolution follows.
So here is my prayer for tonite: God to give all 3 of Emily's therapists as well as the intern Noriel quality therapy sessions with Emily on the specific days of the week. And they all would work with her in a loving and persistent manner for Emily to have the most effective workout session even with the serial cast on her legs.May 3, 2006
Well Emily went to school today (with me being a shadow) at 9am - 11am. And she had a blast. She was very happy to see all of her friends and the teachers too!!! And she did pretty well. She even walked solo at the playground too. I think she just enjoyed tickling and chatting with her little friends! I just love this school and the teachers as well. And it was nice to run into Marie (Shelby's mom) too and catch up a bit with her as well. Here are some pictures from today's first day back to school. We'll go again tomorrow. Emily wants to stay through lunch; so guess we'll do that tomorrow. Therapy today at 2pm with Nancy. Whew! I'm beat.... but happy!
Here are pictures of Emily and her school friends:
(Left: Shelby and Janice/ Right: Shelby and Emily)May 4, 2006 (Thursday)
Well Emily went to school again and she had fun. Little news about last night though, Emily had the worst spasm or something last night at 10pm. She was screaming like she had night fright. Both David and I ran upstairs. She was kicking and screaming and shouting pain pain in my butt! We looked but couldn't see any irritations. But when we would touch her leg or thigh she would kick and scream in pain as if her whole body was burning or something. We couldn't understand what she was feeling. But it was just painful. More painful that anything we could imagine. Tears were pouring non-stop down her face and she was screaming and screeching in utter pain.
It looked like she was having muscle spasm, charlie horse? I don't know what it was, but it was something as a result of her surgery, therapy exercises, and muscles lengthening...maybe all of the above.
This went on for about 1/2 hour. We finally got her to take tylenol with codeine which was a nightmare of its own because she refused to take medication. David and I forced her and made her take it. And then in about 5 minutes she calmed down. Poor baby. She was in such awful pain and there was nothing we could do to relieve her pain.
All I could do was to pray. Emily calmed down and said, "I'm sorry, mommy, for not taking medicine nicely." Oh I could just hug her forever. She was thinking about how badly she performed in medicine taking, as if she had to think about that. She was in such pain and it was a reminder what this little child went through couple of weeks ago.God, please take away these pains especially at nighttime. May she recover fully and with no such pain. Please put your warm hands on her aching body and make this little child's body fully whole.
May 5, 2006 (Friday)
Prayer Request: I think Emily has started night terror. At 10pm again tonite, Emily screamed, kicked, hit, flared her arms everywhere. David & I ran upstairs thinking she was in pain. Well she said her butt was ouchy again. That was the same thing she said 2 days ago. David tried to ask her if he could massage it to make the ouchy go away. And she was freaked out even more. She started to crawl out of her room. David & I just sat in her room looking confused, puzzled, and even frightened. I then, decided to get tylenol with codeine thinking she must be in pain. After forcing her to take the medication, she calmed down.
Then I was researching on night terror. And it looks like Emily has all of the symptoms of night terror. And it just happens that this is all occurring coincidentally with the post surgery stuff.I hope and pray that Emily's night terror will just go away. I read that the night terror occurs when kids are fatigued. And I know Emily must be as her new muscle and body are trying to find its way in learning how to operate.
Oh boy! Poor Emily. I just hope she can have good night sleep every night. And I hope her body can heal quickly so that she will not be so fatiqued and distressed.
Well Emily went to bed. We all prayed together before she went to bed. While I was lying there I heard Emily praying couple of times to God: "Dear Lord, please take away my oweee and let me take my medicine so my legs get better." She prayed this couple of times. It brought tears into my eyes because I knew her innocent prayers would reach God's ears tonight and every night. He has to hear this innocent 4 year old girl's prayers. Oh when I see Emily having to wear these casts to bed it saddens me. I sure hope that Emily will get some good news tomorrow from Dr. Weinert's office visit. I hope she will only have to wear the cast for one more week.
Poor Emily. First she endured a huge surgery. Then serial cast which if all goes well will be for 2 weeks total. And now night terror? What more can this child endure? The night terror seems to occur at 9:45 -10pm. And it lasts for about 20 minutes. She is scary when this happens especially with the cast on. I hope God can bring some level of comfort to her every night and heal this little child quickly....
May 14, 2006 (Mother's Day)What a great Mother's Day!!! Tomorrow is when Emily's serial casts come off!!! Emily has been such an amazing strong little girl wearing these 24/7. And a trooper wearing it to sleep too! We hope that Emily will be able to use her newly "stretched legs" soon by testing out to run, skip, hop on one legs, etc... And we know she will soon.
I think if anything this gift of being able to see Emily move around so much better is the best gift ever! There truly isn't anything materialistic wise that would even compare. And it's definitely hard for anyone to relate especially when they don't have a child who is going through a similar ordeal we David and myself.
This past week I truly couldn't help but to thank God over and over again for Creators Corner preschool. The kids are amazing! There are 2 boys name Cole and Max. And my goodness, you know they are raised so well by their parents. The helping hand that they have shown Emily at school, playing with her on the playground just amazed me. Of course, all of the kids were wonderful to her. And Emily definitely has her "clique" of girlfriends. But this past week, she has been excited to talk about Cole and Max too. I thank their parents for raising such amazing boys who I know will be great men later on in life...
Emily has been doing great in her physical therapy sessions too. The therapists are all blown away at how quickly Emily is able to move around in her casts and do it solo. When I told them that Emily has been moving around on the playground at school, climbing the equipment, going down the slides, crawling through the tunnels, playing ball, etc... they are blown away at her progress. Imagine what more she will do when her casts are off and she has the freedom in her legs!! Praise God! He has been a great physician and has used Dr. Park as a great assistant for HIM.
And God has also tapped me on the shoulders and showed me that Dr. Weinert too can be a nice guy! This past Monday when we took Emily for her second visit, he actually say good-bye to Emily and to us. And he was just cordial. Those little things as politeness really goes far with me. And I thank God for hearing even those grumbles that I had about Weinert previously...Thanks, God!!!
May 15, 2006At 9:30am went to Fountain Valley Orthodics and Emily got her CAST OFF DAY!!! Whew hew!!! Emily tolerated wearing the two casts for 2 weeks! And thank God for giving us good cool weather so that Emily would not be too uncomfortable. Taking the cast off by the orthodics guy Daniel was not so pleasant. Emily was frightened by the saw that was used to slice the cast. But Daniel continued. David and I tried to keep her calm, but didn't work.
But after Emily saw her legs and feet, we think she was very happy too and liked the "cool" feeling.
We noticed her flexibility and that she got her range. She will be able to walk without hyperextending her knees. And she will be able to do all of the sports and such as any other Julie, Johnny, and Sally.
The serial cast technique worked. Thank you, Dr. Park, for your expertise.She is so happy and gaining her strength better than we thought! Thank you, God!!!
Emily's Follow-Up Checkup to St. Louis 8/28/2006.
From Dallas we left for St. Louis to go to Emily's follow-up checkup scheduled for 8:00am on Monday morning, 8/28. So we arrived on 8/27.
At 7am we got up and walked over from the hotel to the hospital.
Dr. Park met with us and told Emily to do various exercises. He said that she will not need any orthopedic surgeries later on in life. He said that she is on target in her development after the surgery. He said she will be able to lead a normal life and play any sports. He suggested that she do 100 squats everyday to continue to stretch her heel cord. Dr. Park also said that the serial cast worked because her heed cords have been lengthened. So the news was very positive and a relief for us.
Our next visit will be in one year.After her check-up we went to the airport to go home to Irvine.
We are so grateful and thankful to God for this miracle. He has given her a chance to have a normal life. And this will always be a reminder to me that God is so good and that He is so so real.
Through this whole experience God has showed me that He has always heard my cries and my thoughts.
I am also convicted that the cause of Emily's spasdic diplegia happened with her delivery when the cord was wrapped around her neck. And the doctors pushed her back in. The doctor said that an emergency C-section needed to be done; but then decided to try one more time before resorting to a C-section. With lots of research I am truly convicted that due to the cord being wrapped around Emily's neck, the thrashing caused some blood fluid not to enter into her brain area, resulting in spasticity.
I had to research for myself because I was not convinced that this could "just happen". We have no family history...When I read alot of the parents discussing cord being wrapped around the baby's neck during delivery, it really raised a red flag in my gut.
After I shared this with David and my parents, I really started to ask God that I am okay and relaxed about having child #2. Prior to this I was very nervous and uncertain that a second child will be completely normal without any complications. But I am not okay with the idea of having a second child - if God blesses us.
Hearing so many friends who are pregnant unexpectedly, I am praying that God will give us the good news with an unexpected pregnancy soon too......
September 20, 2006
Emily's miracle story was written up and published in the Salvation Army newsletter. This is a nationwide newsletter that is sent out to 100,000 homes throughout the USA. I hope Emily's story will make an impact to even one family out there to trust God, don't lose your faith in God, and know that God is GOOD. And it is okay to be angry, throw a tantrum, whine. But in the end, wake up and give all your pains to God. He listens to every last bit of sadness, anxiousness, anger in your heart. And He loves us to take care of us. And IF God thinks it will be better in HIS eyes to fix the problem, He will. And in Emily's case, He did.
HERE ARE SOME VIDEOS TAKEN TO CAPTURE EMILY'S EXPERIENCE AFTER HER SDR SURGERY.
Thank you Thank you Thank you, God...our heavenly Father!!!
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What an amazing story--what an amazing God we have! I have enjoyed reading your blog...I was looking at a Korean food blog ring and just stopped by......and have been soooo blessed by reading. Thanks for sharing. I hope many people read of God's miracle for your little one...