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Thursday, January 19, 2012

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!!

Sunday, January 15, 2012

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!