Thursday, January 27, 2011

Update on My Little Boy

(The first picture is of Chandler after his last surgery, with his nurses aid who happened to be Margarita, a dear, sweet, long lost friend from Germany! Pretty neat how God places angels in our way during difficult times. The 2nd is a picture of us in Germany with the Rhein River and my in-law's village in the background.)

First of all, let me just say as I sit here tonight, with my children all sleeping soundly, that I have so much to be grateful for. My heart is truly full to the brim as I sit here and write. For some reason today, I just feel really blessed. I know I should probably feel a little down in the dumps, but I look at the world around me and think, "wow." Things could be so much worse. So, so much worse. And so, I ask you to please not feel sorry for us. So many of you are asking for updates, and it means so much that you care. I feel so blessed to have so many people who love and care about my sweet little boy, and I want you to know that we feel your love, your prayers, and your concern.
It has been a long few weeks. Chandler had his tongue flap adhesion operation on January 10th, 17 days ago. For 2 weeks and 1 day, we thought his tongue was attached to the roof of his mouth. He literally didn't open his mouth more than a couple of millimeters the entire 2 weeks. He was talking great, eating soft foods really well, etc., and we were all blown away at how well he was doing. But it was really difficult for him, and he had several emotional break downs where he just got so fed up with having to take it easy and not go to school, and not be able to talk or eat normally, etc. He would say things like, "I hate my face." Or, "I hate my mouth. Why does it have to have holes in it?" Or, "I just want the hole back in my mouth. I can't do it anymore!" We have had several long talks throughout the past 2 weeks about trials, about persevering, and about how I wish I could just go through this for him. If I could, I tell him, I would take it all away in a heartbeat. I wish so badly that I could go through this for him. That I could take my little boy's burdens away. But I can't.
So on Tuesday, we had our 2 week follow up with the surgeon, to make sure everything looked good for the next surgery on the 31st. But when the Dr. took a look, the tongue flap was not attached to the roof of his mouth. And my guess is that it wasn't attached anymore after the 1st or 2nd day. Chandler has been treating it as if it was attached, and keeping his mouth closed, but in reality, it wasn't. We don't know at what point the surgery failed. We don't know what went wrong. But it broke my heart that he had been living like this for 2 weeks for nothing. The flap of tongue is still dangling around in his mouth. It's pretty thick and gruesome looking, but we never saw it because he was too afraid to open his mouth. Anyway, so the surgeon decided he wanted us to go visit another craniofacial plastic surgeon to see if he had any ideas on what we should do, and we had that appointment this afternoon.
The 2nd doctor's opinion is that we need to have his tongue put back together in surgery on Monday, and wait 6 months, and then do the tongue flap surgery again. He, like all the other doctors we have seen, does not see how we can move on with any of the other things that need done (bone graft, orthodontia, jaw repositioning, etc.) until this fistula (hole) is repaired. But he doesn't think it will have a good chance at being successful if we redo it right now, because all of the tissue is tampered with and swollen, etc. So, I haven't spoken with Dr. Siddiqi (our surgeon) yet, but I'm pretty sure that is the course we will take. The problem with waiting is that we will most likely lose the 2 permanent teeth (top canines) that are trying to come down but have no bone to come down into, because we won't be able to get the 2nd bone graft done in time for them to descend. So he will have to have artificial teeth (and when he's older, permanent implants) in those areas. But that's assuming the 2nd tongue flap WORKS. If it doesn't, they are not confident at all that the bone graft will work the 2nd time either, and then his top jaw will continue to be in 3 separate pieces, with no bone to implant artificial teeth into.
Anyway, I know that this is a lot of information. Sorry about that. Some of you probably want more details than others:) Anyway, bottom line is that we will most likely be having another surgery on Monday to have Chandler's tongue sutured back together, and then we will wait 6 months and try the tongue flap adhesion again, unless we find some other alternative.
Chandler is such an amazing, positive, strong little guy. He teaches me so much every single day. He was definitely disappointed that the surgery failed, after he had tried so hard to keep his mouth closed for 2 straight weeks, and he's not looking forward to more surgery, but he always tries to look on the bright side. Walking out of the hospital after getting the bad news, it was pouring snow outside and he said, "well I thought it was going to be colder than this! I'm glad it wasn't as cold as it looked!" And when we were driving home, he was sitting in the back seat quietly and then he said, "Mom, when I have the next tongue flap surgery, you don't have to get me a present, because I already had this surgery before." And then later he told me, "Mom, I don't want another tongue flap surgery, but I'm glad I'll know what to expect next time. At least I'll know how it feels when I wake up!" He amazes me.
I don't know why we felt so good and so at peace about this surgery. I don't know why it failed. I don't know why my little boy has to endure so much. But I do know that there is a plan for each of us. God knows exactly what He is doing with my little boy, and I believe that with all my heart and soul. It's not just something I tell myself to make myself feel better. I know it. I know it without a doubt. And I hope so much that someday, Chandler will look back on these difficult experiences and think, "That was really hard, but I learned so much, and it made me who I am. And I'm thankful for those lessons."
For more information on my faith, go to, or email me anytime at

1 comment:

  1. Toby, I'm balling my eyes out right now. You and Chandler are such a wonderful example to all of us who have had the pleasure to know you. You are the prime example of love, endurance, faith, opptimism, hope, and patience.
    Chandler is a very special young man. I'd say little boy, but he is far from being a little boy. He's endured more than any young or old person should. But, he accepts it and pushes through. What an amazing son you have.
    Chandler, please know that your mommy and daddy love you dearly and so does your Father in Heaven. You are a wonderful Christ-like example to all of us. Thank you for teaching me so much and for being the prime example of Faith. I love you and pray for a quick recovery and hopefully and answer to so many questions.
    Toby, thank you for sharing your life, son, and story with us.
    Love, Keri