Home with our Mei Li

Mei Li. . . 5 days after surgery on her spinal cord

We have been home from the hospital for 2 days, and we are 5 days out from Mei Li's surgery on her spinal cord. We went into this week having no idea what to expect. All of the "what ifs" with the risks of surgery. . . and even if all went well with the surgery, what to expect "pain-wise" in the days following. I can tell you that in true "Mei Li style", she has handled the last 5 days with smiles, little to no complaint, silliness, sauciness, and a sense of humor. I have to ask her if she is hurting, and then I give her Ibuprofen and Tylenol. She had an allergic reaction to the plastic and adhesive placed on her back during the surgery, and we have had to treat the rash on her back. But, it is truly amazing the grace and positive spirit this little girl has maintained throughout the entire experience. She is an inspiration to us all. . . and she continues to challenge me every day to look at the world and my own circumstances with a more thankful and joyful heart. Amazing what we can learn from a little child!

I can't say enough about the phenomenal surgical team that took care of Mei Li. Dr. Blount is nothing short of amazing! Such a wonderful man in addition to a brilliant surgeon. And, his nurse, the anesthesiologist and nurse anesthetist. . . the Lord prepared the perfect team to love and care for our little girl! And, His presence was so obvious in that hospital through each and every person sent our way. Even beyond the nurses and doctors. . . the friends and even complete strangers who made their way to our room to touch the lives of our family and both of our girls. . . they shone such a light! It was a humbling and overwhelming experience. We were completely in a position of having "no" control. . . being dependent on the excellence and precision of the surgeon and nurses, being dependent on the love and support of friends and family, and wholly dependent on the mercy and grace of our Heavenly Father. And, to experience the floodgates open and pour out blessing on us in every one of these areas. . . it is indescribable!

Right now, our days are spent at the house keeping Mei Li confined to the couch or the bed on her back or side. She does have permission to walk to the restroom, but then straight back to lying down. We have 5 more days of lying flat. Then, we will see what Dr. Blount tells us. Mei Li is such an active and spirited little girl; but, amazingly, she is doing exactly what Dr. Blount has asked of her. It seems she understands that we are trying to help her. And, she is responding with a willingness that surprises us all. And, she is doing it with such an incredibly positive attitude.

We are truly blessed, and we are incredibly thankful!!! Thank you to every person who has followed along and offered up prayers and good wishes for our little girl!! You have made such a difference to our family and to the life of one little girl. . . named Mei Li. :)

Prayers are answered

Mei Li's spinal surgery was Monday. I asked all of you to pray for her, and those prayers have been answered in a mighty way. She had a laminectomy where the surgeon removed a small portion of her vertebrae in order to get to the lipoma that was attached to her spinal cord. It was a long surgery. They took her back to begin prepping her around 7:15 a.m. Then, the actual surgery began at 8:40. They updated us every 90 minutes, and that was welcome relief. Dr. Blount finally came out to speak with us at 2:00 in the afternoon. His assistant was still sewing Mei Li up, but he had finished the major internal work. Once they removed the portion of bone, he was able to begin removing and detaching the fatty tumor. That was a long and tedious process. He worked under a microscope and removed it millimeter by millimeter. He removed a good portion of the tumor, but the closer he got to healthy tissue, the risks rose substantially. So, he left some of it. Although, he detached all of it. And, the fatty tumor poses no risk in and of itself. It is the fibers that bind the tumor that are dangerous b/c they can tether to the spinal cord (which hers did). And, the tumor can actually "help" keep spinal fluid from leaking. Dr. Blount told us that there was already a good amount of scarring of the spinal cord from the tether, so it is great that we went ahead and opted to do this surgery. She would have experienced neurological problems down the road causing paralysis and bowel issues.

Since then, we have been watching to see that no spinal fluid has leaked. None has!!! We have watched to see if she can move her arms and legs and flex the good foot. She is moving everything!! Of course, the foot that had the surgery on it does not have feeling or movement, but none was expected in that foot. We have also been watching to see if she could go potty, and she has wet diapers consistently. So, no problems with being able to go tinkle. All of these are HUGE answers to prayer. No apparent neurological problems resulting from the surgery.

Mei Li did experience some intense headaches yesterday and some nausea along with them. It is the result of new spinal fluid being created and released in her brain from what was lost during surgery. That spinal fluid being released causes pressure differences in the brain and intense headaches. He told me that the morphine is important to use for these headaches for the first 48 hours. Ibuprofen and Tylenol is not strong enough to handle that pain. Once we went back on morphine at regular intervals, the intense headaches with nausea went away. And, the good news, it is 9:36 in the morning as I type this, and Mei Li has not needed morphine or complained of a headache since 1:00 a.m.!!!

We are thrilled with Mei Li's daily progress. Your prayers have been heard and answered, and I thank you all and the good Lord above for taking care of our precious girl!

We had a humorous moment this morning when Mei Li smelled Mama's coffee. This little girlie loves her coffee. I caught it on video. . . enjoy!!!! It is proof positive that our Mei Li is getting better by the minute! :)

Thank you SO much for your prayers and your good wishes. . . and for following along. We hope to go home, possibly, tomorrow. I'll keep you posted!

A Mommy's Prayer. . .

Dear Heavenly Father,

I pray for Dr. Blount and his entire surgical team and their families this weekend. I pray that each one of them is healthy, well-rested and is filled with your peace and joy. I pray that your presence will be in that operating room, Monday morning, and that your angels will be in attendance to watch over our Mei Li and hold her hand during surgery since Mommy will not be able to. You know, Dear Lord, how much it means to Mei Li to hold her Mommy's hand every night while she falls asleep. I pray that you will give Dr. Blount a supernatural wisdom and precision and that your Holy Spirit will guide his hands during the procedure. I pray that Mei Li will have a peace in her heart and that You will calm her fears.

I pray that this procedure will be successful! I pray that the tumor will be successfully detached. I pray that you will keep spinal fluid from leaking. I pray that Mei Li will be healthy and have NO infection. I pray for "no" paralysis. And, I pray that Mei Li will remain continent. And, while I'm asking You for so much, I'm going to go ahead and ask You to please allow movement and feeling to return to Mei Li's lifeless little foot. I know that we have been told that that "will not" happen. And, we are at peace if You choose to leave it as it is. But, I also know that nothing is impossible for You. So, while we are "praying BIG prayers", I'm going to go ahead and claim that too!

I love you, Lord! You have blessed our family in so many beautiful ways. And You have blessed us mightily with our sweet Anna Grace and our newest angel, Mei Li. Please hold her in the palm of Your hand on Monday. And, I pray that You will use the miracle of her precious life and radiant spirit in mighty ways.

I pray for your peace and calm to rest on Geoff, Anna Grace, me and the whole family as we wait. We place Mei Li in your hands, and we will confidently "believe", and hold on to the faith and hope we have in You and the incredible people You have given us to care for our little girl.

Father, we remain "available" for You. Come, Holy Spirit. . .

Amen

T Minus 2 and counting. . .

Mei Li's amazement watching the circus!!

We just got the call this morning that Mei Li's spinal surgery is a "first-start" on Monday morning. We are to check in to the hospital at 5:30 a.m. and surgery is scheduled for 7:15. She is expected to be in the hospital for 3-4 days; and, if all goes as planned, home on her back for 10 days.

The 4 areas of concern regarding the surgery are 1. leaking of spinal fluid 2. incontinence

3. infection 4. potential paralysis

Please keep our sweet girl in your prayers. And, we ask that you pray, specifically, for these things. . . And, of course, that Dr. Blount will be able to accomplish his goal of detaching the tumor from her spinal chord.

BUT, "today" we had fun!! We went to the circus! It was Mei Li's first circus experience, and we had ringside seats!! Thanks to our sweet friends Tammy and Lamana for inviting us to join them! It was an amazing show, and Mei Li was wide-eyed, open-mouthed . . . with occasional squeals throughout! However, she is very sensitive to loud noises, and the noise level was incredible. So, about an hour into the show, I had to take Mei Li out due to her not feeling well. Anna Grace stayed with our friends and enjoyed the whole show, while I took Mei Li next door to Birmingham Children's Theatre and visited with all of our good friends there. A Coke (which Mei Li calls Kuhla) and some crackers and lots of attention from our friends at BCT, and Mei Li was feeling fine in no time!!

We're gearing up for Monday, and Geoff's Mom ,"Yaya", is flying in on Sunday to help out for the next two weeks. I am so very thankful that she is coming to lend a hand! And, the girls are ecstatic that they are going to get some much-needed Yaya time!

I'll keep everyone posted on Mei Li's progress on Monday. And, as always, thanks for your prayers and for continuing to follow our journey.

Sweet Story. . . From a Sweet Heart

I just have to share a Mei Li story that happened a little over a week ago, and it warmed my heart. I had to go to the ENT to find out why I was experiencing hoarseness. It was noticeable to me when I spoke, but especially when I tried to sing. It had been going on for a while, and wasn't getting better. So, I loaded up Anna Grace and Mei Li and took them with me to the ENT. He scoped me and took pictures of my vocal chords while he had me sing certain pitches. Long story short, it turns out that I have acid reflux, and some irritation of the vocal chords from using my speaking voice too harshly. I'm guilty of calling to the girls from upstairs and downstairs, refereeing their minor arguments and laying down "the law" with my "Mommy voice" too much. So, he prescribed, Prilosec (for the reflux), Prednisone (to bring down the irritation, as I was to sing in a benefit concert the following week), and vocal rest.

We got home from the doc, and Mei Li came to me, very concerned. She asked, "Mommy, ni binglung?" (Mommy, you sick?) I told her that Mommy's voice is hurt, and I can't sing for a little while. I have some medicine to take, and I have to rest my voice.

Mei Li's eyes widened and a dark cloud came over her little face. Tears began to well up in her sweet brown eyes, and she began to cry. She said, her voice breaking, "Mommy, wo yaw Mommy better. Wo yaw mommy sing".

You see, Mei Li absolutely loves music. She loves it more than most children. She can't get enough of it. But, at the top of her list is her Mommy's music. I sent her one of my CDs in a care package when she was in the orphanage in China. I had no idea if they were going to play my music for her, but my hope was that they would. And, I hoped that she could begin to know her mother's voice through my music---especially, song #6 "Songbird". I recorded that song in Mei Li's honor. It is her song, sung to her by her mother who was waiting for her. Since she has come home, all she wants to do is listen to Mommy's music. She has a very opinionated musical palate. She will quickly tell you that she doesn't want to hear quite a number of musicians! Lol! But, she will ask to hear "Mei Li's song" all the time. Over and over she will ask me to play it, and she will comment on the lyrics in the song. "Mommy, Mei Li boo yaw cry", after I sing the line "For you, there'll be no more crying". And, as soon as the last note plays, she asks me to play the song again.

What an angel with a sweet heart. It broke her heart to learn that her mother, who's music means so much to her. . . and comforted her while she was in that orphanage in Shanghai. . . could not sing because her voice was injured. Those tears caught me by surprise, but taught me, even more, what a loving and special little girl we have the honor of calling our daughter.

Neurosurgeon consult

An early birthday dinner and dessert for Mei Li!

Mei Li's MRI film

Today was a LONG and important day. We began our morning by heading down to Children's South to meet with Mei Li's neurosurgeon, Dr. Blount. He reviewed Mei Li's MRI film, his findings, the risks of surgery, the risks of "not" doing surgery and his plan. He was incredible and took great care to make sure we understood every detail. We are very thankful the Lord has placed Mei Li in Dr. Blount's very capable hands. Then, we were sent downtown to the main hospital to have her pre-op blood work done.

First, Dr. Blount found that Mei Li's lipoma is on the dorsal side of the spinal chord. This, he told us, is GOOD! It is much less risky to operate on than if it had been on the bottom where all of the nerve endings are. He explained that if it had been on the bottom, "it would be like dumping a container of glue into a pot of spaghetti and trying to get the glue out." Thankfully, the lipoma is on the dorsal side and will be more contained. However, there are still risks. The fatty tumor is not just up against the spinal chord, the fibers that bind it are wrapped around and fused to the spinal chord. So, he explained that operating on abnormal tissue that is intertwined and fused to the spinal chord and nervous system does come with its risks. But, the risks during surgery are less than 10%.

He also told us that the risks of "not" doing surgery are between 70-80% chance of Mei Li growing into an adult with paralysis and loss of bowel control. There are two schools of thought among neurosurgeons. . . "to do surgery" and "leave it alone". Neurosurgeons in the U.S. tend to be more aggressive in their approach to be pro-active and derail the inevitable. Whereas, there are fine neurosurgeons around the globe who argue to leave alone what is "not yet broken". They feel that surgery is taking too big of a risk and could cause neurological problems that were not present before the surgery. Dr. Blount told us that by choosing to "do" the surgery, we are choosing to take all of our risk up-front. If there is a neurological problem, it will happen in a matter of 2-3 hours (the time it takes to do the surgery) rather than over a long, slow period of adolescence where there is gradual decline as a result of growth. But, the risks to do nothing far exceed the risks to do something. So, we are going to do all we can to ensure Mei Li the brightest future possible.

The surgery to detach the lipoma from Mei Li's spinal chord is scheduled for January 30. It was moved up one day. She will be in the hospital between 3-4 days if all goes as planned. Then, she will come home and be "still" and "on her back" for 10 days!!! :-/ I asked if this procedure comes with a magic wand. Keeping this little one still for 10 minutes is a chore. . . 10 days???? Whew!! I'm not looking forward to that! He did tell me that she would be able to get up to go to the bathroom and get a bath. And, one of the big things we will need to be on the lookout for is the leaking of spinal fluid. If there is a leak, then we will have to go back in and get the leak stopped. Oh, yes. . . and I did ask him if this surgery might bring back the sensation in her "dead foot". He said, "No". He told us that that foot is as good as it's ever going to be. At least we know, now.

I am attaching an image of Mei Li's MRI film. It shows her spine, and if you look at the lower part of her spine, near the tailbone, you will see a small white mass pressed into the smooth spinal chord. That is the fatty tumor (lipoma). You can't see the fibers that are wrapped around the spinal chord, but they are there. And, over time, as Mei Li grows, those fibers would pull and tether the spinal chord. There is also a fatty pocket on the outside, right underneath the skin. But this fatty mass is not posing any danger to Mei Li. The one he will be operating on, that poses the risk of paralysis, is the small white mass attached to the chord.

On a very happy note, our Mei Li is celebrating her 5th birthday tomorrow! She has never celebrated a birthday before, and how wonderful that she will experience her first celebration with her new family who adores her! Sweet thing. . . I asked her what special present she hoped to receive on her birthday. She responded with, "A sucker!". I asked her what special meal she wanted her mommy to make for her. She answered with "Soup and goldfish". I'm sure in another year her answers will be very different. But, I find it beautiful that this little girl who has never celebrated a birthday in her 5 years would find such joy in a sucker, soup and goldfish! And, she gave Geoff and me a present of our own today. We were riding in the car to the hospital for her appointment, and she told us, "Mama, Wo boo yaw China (I don't want China). Wo yaw Mommy (I want Mommy). Wo yaw Daddy. Wo yaw Jeh Jeh. Wo boo yaw China. Wo yaw family." Happy birthday, baby girl! That is one birthday wish we promise you today and forever!!

Some Pretty Big Blessings!

Anna Grace at her Baptism!

1/15/12

My sweet girls enjoying some push-pop fun at Chuy's!

Baby girl finds a "cherry treasure!!"

The awe and wonder in Mei Li's eyes over this push pop!!

She looks like she's waiting for it to explode!

A little elbow grease always gets the job done!

Not gonna let a little push pop get the best of her!!

Baby girl loves her some hard-boiled eggs! Yum!

Getting her daily leg stretches with Daddy and Minnie Mouse :)

And, of course, Minnie must get in on the exercise too!

This has already started out to be an amazing week! Today, my Anna Grace got baptized at our church! I am so happy she made the decision to share her commitment to the Lord with the church. Her Mama B, Uncle Scott, Aunt Emmalie, cousins Ramsey and Bryant, our friend, Heather, and of course, Mom, Dad and Mei Li were all there along with the entire 10:45 service to celebrate with her! It was a wonderful moment!

To top this off, there are a few more BIG things happening this week! Thursday is our appointment with the neurosurgeon to discuss Mei Li's upcoming surgery that will take place on the 31st of this month. He will review Mei Li's MRI film and discuss his game plan with us for surgery. I will certainly update as soon as we learn news from this consult.

Friday. . . DRUM ROLL. . . is our Mei Li's 5th birthday!!!! It's wonderful to know that Mei Li will have her first birthday celebration with her family in her new homeland! I asked her if she ever had a birthday party in China. She said, "No". So, this week, we will have a small birthday celebration for our sweet girl. Mama is still working on an idea, and we'll see how it turns out. Mei Li wants to swim more than anything. She begs me all the time to take her swimming. When we were in China at the hotel, she had to miss out on swimming because of the terrible pressure ulcer on her foot. Big sis got the chance to go when Mei Li went down for her naps, but she always would awaken to find big sis gone swimming. She has never been swimming before and this is her big wish. So, I've been on the phone with a local hotel to see if we can arrange a little swimming party for her. Whatever turns out, I'll have some pics later this week of Mei Li's 5th birthday to share!!

Saturday is a benefit concert at the Trussville Civic Center that I've been asked to sing in with some other area artists. It is for a great cause and I'm honored to be a part of it! The event is to raise funds for a facility that will provide recreation and social activities for adults with disabilities. It's called Independence Place. As a mom to a little girl with disabilities, this is something close to my heart. I hope it will be a success and bring the necessary funds to get this wonderful facility off and running!! So proud of my city for providing something like this for our community!

I am praying for a little Divine intervention, however. I've noticed a bit of hoarseness over the past few months, even though I've not been performing much at all since coming home with Mei Li. I went in to the ENT on Friday to get it checked before this upcoming benefit concert. He scoped me and took some pics of my vocal chords. It showed that I have acid reflux and inflammation of my vocal chords. So, I'm on vocal rest this week, taking prednisone t0 reduce the inflammation and Prilosec twice a day to reduce the acid and lots and lots of water. I'm bummed that I have this going on and it's left me in less than stellar voice. . . but I'm so very thankful that we discovered the problem before permanent damage occurred. Hoping a week with some vocal rest and meds will help along with a little touch from above .

Another great bit of news to follow-up on my last post. Anna Grace went in to the "Alice in Wonderland" audition at Birmingham Children's Theatre a week ago. We got the call at the first of the week that she was selected for the role of ALICE!!!! She is absolutely over the moon! She has already memorized the first 10 pages of the script, and I'm enjoying watching her take this opportunity and blossom. This part came at such a critical time. Anna Grace has been such a fantastic big sis to Mei Li, but she has had to take a back seat a great deal during the last months while we've been prioritizing Mei Li's surgeries and medical visits. . . and acclimating her to her new family and home. As patient and loving as she has been, I know it gets tough sometimes. And, she has been needing something of "her own" to challenge and grow her. The call from BCT that AG was selected was a gift from God, for sure! She needed that shot in the arm, and the timing couldn't have been more perfect! So, if you find yourself in the Birmingham area in April, come out and see Anna Grace in "Alice's Adventures in Wonderland" at Birmingham Children's Theatre! Yay, Anna Grace!!

So many good things, it's hard to keep it all straight! But, thanks for following and I'll certainly keep updating!