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

Saturday, January 8, 2011

Some Pictures from Germany

Here are a bunch of random pictures from our trip to Deutschland. I'm horrible at blogging and have no idea how to put them in order or put captions under them, sorry:)

Hanging in There

Well, it's been kind of a long road since we arrived home from Germany. After a very long, very scary drive home in a blizzard from the airport, we finally made it home. Our driveway was covered in about 10 inches of snow and Jake decided to try and gun it into the garage and got immediately stuck. Haha it was awesome. We spent the next hour trying to dig out but we couldn't go back or forward. Luckily all four kids slept through the whole thing. After a while, a really kind neighbor came and rescued us with the super powerful snow plow from the church building. We FINALLY stepped into our home, so excited to have made it, jet lagged and absolutely exhausted, walked in the door and the smell of dog urine and poop hit us like a ton of bricks. Jake had built a barricade around our dog Eddie's doggie door with his blanket and food, so that he could go out and go potty whenever he needed to and the neighbor was walking him twice a day and keeping him fed. But he got out of his barricade and apparently had spent the past 10 days roaming the house all by himself and marking his territory all over the place. We've had the carpet cleaners come 3 times so far and there are still areas that smell. It's been awful. My fear is that we're just going to get used to the smell and think it's gone, and then have THAT house in the neighborhood that reeks and nobody will tell us!!! Thankfully I know a few people that will give me brutally honest feedback about the smell of my house:)
As far as the MS goes, the symptoms have not gone away since I've been home. Actually, the dizziness has been quite a bit better, but other things have been worse. Yesterday, I felt like I was falling twice when I was just standing there. And the pain has been pretty bad. By yesterday, I could no longer move my neck without intense pain. Jake finally forced me to go to the chiropractor who said that it was really swollen and a huge jumble of knots. The adjustment was unbelievably painful but today it feels quite a bit better. I can move it right but still can't really move it left. The joints in my fingers are throbbing as I type this, and I feel like my memory, word recall, etc. are definitely struggling. Before we left Germany, I was having a really difficult time with the thought of coming home to all of my responsibilities and obligations, and inevitable upcoming surgeries for my sweet little boy Chandler. Over and over, my neurologist has told me that I need to work at cutting my stress level at least in half, but I've never really paid much attention to it, figuring it was impossible. But after a long and emotional conversation with my sweetheart, we decided that we really do need to make the effort to cut out what we can. I know that stress is one of the greatest exacerbators of this disease, and there are plenty of stressors in my life that I cannot change, but I've decided that I need to start cutting out some of the things that I can if I want to be the healthiest I can for my family, and have the best chance of raising my children into adulthood. One of the first things that I decided I needed to cut back on was my calling at church. For those of you who are not LDS, a calling is a volunteer responsibility you take on for the church. I have been working with the teenage girls in our church and have loved every minute of it. But there is no denying that planning and attending weekly activities, going to biweekly meetings, teaching on Sundays, etc., causes more stress, even if it's something I enjoy. It was extremely difficult for me to swallow my pride and tell the Young Women's president my situation, but I finally worked up the courage, and of course, she was very understanding and compassionate about it. I worry that not having a calling right now will bring upon me the judgments of others. As much as we pretend like it's not, in the culture we live in, having a calling is like a status symbol, and giving it up causes people to make all kinds of assumptions about you. Especially with a quiet disease like this, where I appear perfectly normal, it is difficult to have anyone understand what it's like in my world. I know that I've got to just let go of worrying about that nonsense, and do what's best for me and my family, but for some reason, that's easier said than done.
I've also decided to stop home-making all of our bread. It doesn't seem like much, but every few days, it's a 3 hour time commitment. And instead of cutting my boys hair the other day, I took them to Great Clips. I know it's not much but I'm trying.
One of my biggest worries is disappointing people about the procedure for CCSVI. I know that a lot of people have looked to my situation for hope with their struggle with MS, and it breaks my heart to think that I might be letting people down. Let me just say that, although I am having symptoms again, I still feel better than I ever did before the surgery. I wouldn't change it for the world, and I would encourage anyone and everyone who has this disease to get your veins looked at. Now that the dr. is part of a national trial, I think it's ok to share his information with you on this open forum. The dr. in Provo who is performing these procedures is Dr. Hatch, and his phone number is 801-379-6700. He is wonderful. I am truly grateful that I've been able to have my veins opened and my blood flowing normally again, and it has helped me so much. I literally had 5 months with NO symptoms! That time was invaluable, and I will forever be grateful for it.
As difficult as it is to watch my little boy go through these surgeries (these next two will be number 17 and 18), I am so thankful to live in this great country, and to be so close to Primary Children's Medical Center, an amazing hospital that has always been so great to Chandler. I recognize that we are so truly blessed to have modern medicine and procedures that can improve my little boy's quality of life so drastically.
I am thankful to have my four sweet children. Of course it is sometimes difficult to be a mother of four small children, but they are the greatest blessing I could ever ask for, and they constantly provide so much depth of love and joy in the lives of my husband and me.
I am grateful for my sweet husband, who is always trying to think of ways to make my life easier. He truly is my best friend, and I love him dearly.
I am grateful to have a knowledge of my Savior, Jesus Christ, and to know without a doubt that He understands my pains, has experienced them, and can provide comfort to me when it seems that nothing else can. I know that God is aware of little insignificant me, that He knows my sweet little boy, that He has a plan for our family.
My dear friend, Larry Steimle, shared this video with me, and I shared it with Chandler. Chan was blown away at this little boy, and after he watched it, we talked about how blessed we are even when we have to go through difficult things. Chandler and he are about the same age, and he was surprised to find out that this little guy just lives 90 minutes away from us. He immediately said, "I want to meet him!! Can I meet him?!" I'll see what I can do:)

PS If you're interested in finding out more about my faith, you can visit and have your questions answered, or feel free to email me with any questions:)