Embrace the Chaos

We gave up television about 5 years ago. And I will never go back. After a few months without it, I wondered how we ever had time to watch anything on TV in the first place. There were walks to be had, books to be read, better, more healthy meals to be made, and, perhaps most importantly, quiet time to be savored. I have come to really appreciate and revel in quiet. And when I say quiet, I don't mean that my home is silent. Let's be real here. I have four kids, ages 8, 5, 4, and 2. Silence is a rarity in my home. And it's not always necessary. My children will tell you that some of our favorite times are our "dance parties" in the kitchen, where we turn up the radio and all go crazy busting out our best dance moves! But some of my most treasured moments as a mother are when all of the games, movies, fans, radios, and cell phones are silenced, and nothing is to be heard but the sounds of my children, laughing, playing, and yes, sometimes screaming and whining. I take a deep breath and with that breath, I try and take in all of the beauty that surrounds me. I know this may sound odd, but it really has helped me stay calm in the midst of the craziness of having four little children. Many of you who know me are well aware of my personal motto that I adopted after little Jonah was born: "Embrace the chaos." When things get crazy, and chaos abounds, it helps me immensely to just close my eyes and find gratitude in the noise...find gratitude for these precious little monsters. :) Because my life would be empty without those noises. It would be empty without the yelling, laughing, crying, stomping, begging, hugging, hitting, giggling chaos.

PS  One of my very favorite quotes is from the book Mitten Strings for God, which I highly recommend. It says, "When I come to a stop myself, when I draw a circle of stillness around me, my children are drawn into that peaceful place. They visibly relax, as if my very calmness nourishes them. The impact of just a few minutes of quiet attention can be profound, changing the mood of an entire day, restoring equilibrium to a distressed child, and to a frazzled mother as well."

What's in a Name?

Figured I should let my readers know that there's another change I've made recently...I'm changing the spelling of my name from Toby to Tobi.  :-)  Here's how it happened....
We were sitting in mediation and the mediator asked, "Do you want to change your name back to your maiden?" And I said, "yes" and he said, "Do you want to change anything else about your name?"  And I was like, "HUH?  Didn't know I could..." and I said, "No thanks."  And then I got to thinking...I've always hated the masculine spelling of my name...so I called my Dad and told him that I had the oppurtunity to change it and I thought it would be cool to finally spell it the feminine way, but only if he was ok with it because it wasn't a big enough deal to me if he didn't want me to and he was like, "I couldn't care less! Do it!" So I called the mediator and told him that I wanted to change it to Tobi.  :-)  Maybe I won't get quite so much mail for Mr. Toby Bushman anymore.  hehe

Divorce and the Disease.

Well, this is a post I've been avoiding for a long time.  To be perfectly honest, it's humiliating.  I have put on a "happy marriage" face for a long, long time and my blog has been no exception. It's been a rough few months to say the least.  I've been under a lot of stress and undergone a lot of heartache, as have my children and my soon-to-be ex-husband.  But I'm thankful to report that my symptoms have been surprisingly few for the amount of stress I've been under.  Getting used to life as a single mother, accepting the failure of my 9-year marriage, moving out of our beautiful home into a small apartment, and trying to figure out how to survive on what little money I have, among other things, has been incredibly difficult.  There are days where I just want to lay in bed and cry, and yet, my four precious children need me.  They need me to be strong, and positive, and courageous.  These sweet kids have kept me going.  They are my motivation...my purpose.  I am so blessed to have them. 
I have decided to return to the Swank diet.  I went on the Swank diet a few years ago because my neurologist thought it would help me.  I was on it for about 9 months.  And help me it did.  Then I got pregnant with Jonah, and never really went back to it.  For those of you who are unfamiliar with the lifestyle, it's basically a fat free diet with a few other details.  There is plenty of info at http://www.swankmsdiet.org/.  Want to start together?  Join me!  Let me know how you're doing!  We can help each other. 

Big Day for Thomas

Sorry, I'm really bad at figuring out how to arrange these pictures.  We had Thomas' preschool graduation yesterday and it was so cute.  He did great and was really happy and proud of himself.  Thomas is such a special little guy.  He's incredibly tenderhearted and he's got a definite fear of being vulnarable or embarassed in any way.  So I was so proud of him for staying up there with his class and singing all of the songs, and just smiling when people clapped and laughed at the cuteness of it all.  He's come a long way this year and I couldn't be more proud.  His teachers, Ms. Lindsay and Mrs. Webb have been amazing and I'm sure he will miss seeing them.  I love you Thomas!!!

 

Random Pictures of Recent Happenings

Here are a few pictures I just uploaded from my phone. 

The kids had a car wash and started with the go-kart.  Then they helped their daddy wash the van.  Funny how exciting this is for little kids.  They had so much fun.

 They love bubble baths.

 I got to go with Chandler on his fieldtrip to the zoo.  We had a blast!  He's on the far left.

 Caught Anna and Jonah sitting like this watching a movie and had to take a picture. 

 This was Jonah during family prayer tonight.  He is such a character.  Wore that medal around his neck and a head band in his hair all day today.  He's hilarious.  I know, I shouldn't be taking pictures during prayers but I couldn't help myself.  haha

 And Thomas learned to tie his shoes!  So proud of my litte man. 



Meds.

Several of you have emailed me asking for a list of medications that I take.  Only one of them is a medication actually and the rest are supplements, but here you go.  I definitely feel a difference when I do not take my handful of pills each night and these are all of the things my neuro has recommended that I take:

4.5 mg Low Dose Naltrexone
15000 IU Vitamin D3
2500 mg Omega-3 Fatty Acids (fish oil)
15 mcg Vitamin B12
1 capsule Acidophilis
Multivitamin
1200 mg Calcium

Before I started taking Low Dose Naltrexone (or LDN) about 3 years ago, some part of my body was always numb.  It was usually my left leg that felt heavy and numb, and for a lot of months, I found myself having to sort of drag it along.  But I literally never deal with numbness anymore.  I am amazed.  It also helps a lot with energy level.  If you want more info on LDN, I recommend http://www.lowdosenaltrexone.org/.  LDN has shown amazing results with all kinds of diseases, as well as with infertility.  It's also incredibly inexpensive.  Anyway, hope this helps. 

Mothers Day

Mother's Day used to be a very difficult day for me.  My mother was not a super-star role model.  Anyone who knows my story knows that's an understatement.  :-)  And so it was always a holiday I sort of dreaded, not because I felt bad for myself, but because I didn't like others feeling bad for me.  I've always hated being pitied.

Now, having been blessed with children of my own, Mother's Day is something I look forward to and love.  Jake was at work that morning and I really didn't expect the kids to know at all that it was Mothers Day, but sure enough, they showed up bright and early and brought be breakfast in bed that they made all by themselves.  Two pieces of toast with butter and a bowl of cookies and cream ice cream.  Best breakfast I ever had.  I sat there and ate my breakfast truly grateful for these precious souls that have been entrusted to my care.  Oh how blessed am I.  I didn't think to take a picture until after my food was all gone, but you get the point:) haha.

Then when Jake got home, of course he spoiled me rotten.  Always does.  I have so much to be thankful for.  My heart just overflows with love and gratitude to my Father in Heaven and I cannot help but get teary when I think of all the blessings in my life.  

Jonah's Stuffed Animals

Jonah LOVES his stuffed animals and he loves bringing them to bed with him...and every morning, he wants to carry them around.  He keeps adding more and more to his collection, and this morning, this is what he brought out of bed with him.  Cutie. 

PLEASE take 8 minutes to watch this video...

...and pass it on to anyone you know who has MS.  Thanks!

http://www.youtube.com/watch?feature=player_embedded&v=VN-YC8JPZ9M

Sunny California, Here I Come!

Well, it's been an interesting few months to say the very least.  Our family has gone through some significant changes, all for the best, and we've done a lot of learning and growing together.  We also went on vacation (see above pictures) for 10 days to New Mexico and Colorado which, though it was A LOT of work with 4 small children, was a blast. 
We also contacted the clinic in Southern California about treating my CCSVI with stents.  For more information, see www.synergyhealthconcepts.com. I talked to the coordinator today and right now it costs $10,500 (not including stents), but they are going to start billing insurances soon.  So, they're going to call me next week after they've contacted my insurance and get me scheduled.  I know that some docs think stents are dangerous, but in my mind, having my blood not flow is also dangerous.  Feeling fatigued, dizzy, and in pain all the time is miserable, and the lack of blood flow is probably leading to more lesions on my brain and spine.  That's dangerous.  I guess Jake and I are feeling like stenting at this point is the lesser of two evils, and we feel good about moving forward with it.  We are going to continue to research and study on the subject, though, and if you have any information that you think might shed some light, good or bad, please feel free to share!  In fact, share in the comments section, so that more people than just me will see it.  We'll keep you posted, but right now, it looks like I'll be going in May or June.

The Break Down.

Well, I talked to Dr. Hatch yesterday afternoon and he made it very clear that there is nothing more he can do for me.  He told me he's not willing to stent my veins and that he doesn't think my veins can handle much more.  Felt like someone punched me right in the stomach.  Jake came home from work at 11 last night and I just lost it.  I wept and wept while he held me for a long time.  I had held it together all day but I couldn't hold it together any longer.  It is difficult enough to have a husband, a home, and 4 children ages 7 and under to take care of while one feels normal and healthy.  But to try and do it all with very little energy and a whole lot of pain and dizziness is getting to be too much.  Something's gotta give.  I only have so much energy and there is so much to be done.  It's causing my children to suffer because I don't have the energy to be extra patient with them, or run and play with them.  It's not fair to them.  My greatest joy comes from taking good care of my family and home, and I feel like a failure every second of the day.  I had lost all hope and felt like there were no more answers for me.  After I finally got it together and took some deep breaths, Jake showed me some research that he had done on his breaks at work.  He told me that we are going to get someone to help with the housework 10 hours a week so that I can spend the energy that I do have on my children.  This morning, he called from work and said that there was a lady coming to look at the house and discuss a plan.  I am going to have to fight my tendency to feel guilty for not being able to do it all.  Before bed, Jake gave the most beautiful prayer, acknowledging God's hand in our lives, knowing that He has a plan for us, and praying for us to continue to be guided and directed as to what to do for my health.  I am so blessed to have Jake.  I am married to my best friend in the world.   

Email from my sweet husband:

the following is a dr that does stent the azygos.  he claims that you have to place one that is 20% larger than the azygos.

i think he's our guy!

http://www.southcoastveincare.com/joseph-hewett.php?tid=1

here's some info from a conference he spoke at

http://www.reformedms.org/ms-ccsvi-news/venous-stenting-and-ccsvi-dr-hewett-presentation-january-29-2011-seattle

conversation talking about the medicine i mentioned

http://www.dvtforum.com/index.asp?forumID=17615&subject=Internal-Jugular-vein-clot
________________________________________________________________________

Anybody heard of Dr. Hewitt?  Jake is convinced we need to go to California so that I can be treated by him.  PLEASE let me know if you've had any experience with him.

Hmmmmmmmmm...

Well, I felt GREAT for 3 days.  It was wonderful.  Again, my brain was clear, and again, my energy was back up.  The dizziness and balance issues were significantly decreased.  And then...I woke up and was stumbling all over the place, dizzy as ever, and slammed right into the wall.  Fun fun.  Pretty sure those darn veins closed yet again.   What to do, what to do, what to do.  The Dr. is calling me tomorrow so that we can discuss our options on where to go from here.  He's really worried about stenting, for several reasons, including that scar tissue builds up around the stent, which could end up closing the vein even more than the original stenosis.  We'll figure it out.  Continuing to pray for guidance as to where to go from here.  Pretty frustrating, but it could be worse.  I really do have way too much to be thankful for to be complaining.  I look at my sweet, sweet husband and the four little miracles that we've been blessed with, and it's hard to feel sorry for myself at all. 

Cautiously Optimistic

Well, the procedure went well.  It was a little rough at first because they  forgot to put the pain meds in my IV. So they made the incision in my groin, stuffed the catheter in it, pushed it up into my jugular vein, and started ballooning my jugular.  I just figured I was being a wimp and needed to breathe through the pain.  But the blooming was so painful and I finally just started crying from the pain and the nurse was like, "Oh shoot!  I forgot the pain meds!  I promise I won't drop the ball again!"  haha ya that sucked.  But it was totally worth it, because...
My right jugular vein was still open from the last surgery, but the left one was closed again about 25 percent so they opened that up.  He said he used a bigger balloon than normal and he's hopeful that it will stay open this time.  My azygous vein had stenosed again in 2 spots.  It was 80% occluded.  One spot is now 90% opened and the other only opened to 75%. 
Immediately after surgery, my mind cleared out.  I felt like I could see everything brighter and crisper than before, which was the same experience I had when they opened my azygous vein in Costa Rica.  I have way more energy and couldn't even fall asleep last night because my brain was so alert and clear!  So that's been wonderful.  I'm going to try working out in the next few days and I am so hoping and praying that I will feel good.  I'll let you know! 
Thanks to everyone for all of your love, prayers, and support.  I am so truly blessed for such amazing friends and family who step up and help us in our time of need, watching kids, bringing meals, or just checking in on us.  It means the world. 

Test Results

So, I went to Dr. Porter in Provo to have a bunch of blood work done, hoping to find some answers, especially involving my energy levels as of late.  I got a lot of information that I'm really hoping will help.
First, I have a low thyroid.  He says my pituitary gland is not producing enough thyroid, and also not enough T4 is being converted into T3.  That doesn't mean a whole lot to me, but he told me to take porcine thyroid and porcine pituitary gland, which is a supplement of ground up pig thyroid and pituitary gland.  Yummo! 
Also, I have a "leaky gut."  I know, that sounds really gross.  Basically, the lining of my intestines and stomach is leaking out bad stuff into my system so I need to take a supplement he calls G.I. Integrity as well as a bottle of cow colostrum.  Again, yummo! 
I also have a slightly low glucose level and a slightly high insulin level and he says I very clearly have Hypoglycemia.  To help with my blood sugar levels stay regular, I need to eat often and eat balanced, which means never eating any carbs with out a protein and healthy fat.  He says this should definitely help with energy.
As far as the food sensitivities, my yeast levels were normal, but I have a sensitivity to egg white, cows milk, and gluten. This explains why my brain clouds over and my energy drains out of me after I eat.  He says that these sensitivities are affecting me a lot more because of the leaky gut, so if I can avoid these things for 3 months, once my insides are all healed up, I should have no problem eating a little bit of them every 4 or 5 days. 
So, I definitely found some answers.  I haven't had any gluten, egg, or milk in the past 24 hours and I haven't had the brain fog once.  Hoping it lasts.  In the meantime, I need to figure out where to buy all these supplements for the best deal.  If anyone knows of an inexpensive place to buy that kind of thing, I'm all ears. 

Wooooohooo!!!!!!

Big news!!! I asked Jonah this morning if he wanted a piece of candy (I was trying to capture his happy dance on video haha) and he said, "No. Banana." And then I did my own little happy dance!! :)
Also, Thomas has been up for 2 hours now and he's only had 2 pieces.  Anna hasn't had any and said she wanted a protein shake and a banana for breakfast. 2 days ago, Thomas and Anna ate too much candy and had no interest in eating breakfast.  Hoping it continues to decrease with a little more time!  Thanks to everyone for all of your feedback.  I love hearing your experiences.  Have a great day!

Candy and Veins:) Mmmmmmmmmmmmm.

As my children make leprechaun traps with trails of candy, I think I'll give everyone an update on my health as well as my experiment.
The candy thing is seriously driving me nuts. They have slowed down a little bit but not much. I finally caved today and put it away while I was making lunch (they were eating piece after piece while I was trying to cook them a decent lunch) and while I was making dinner (same story) because they're miraculously "not hungry" at every meal since this experiment started. But other than those two times, the kids have still had full run of the candy jar. I think if I give it a few more days, it will slow down more and more but I'm not sure if I'll make it to that long. I'll keep you posted.
As far as my health, I reported the other day that I was feeling good, and I was. But overall, I'm still not feeling as good as I think I should. The most black and white difference I've noticed is that before my original surgery in Costa Rica, I felt horrible after jogging...light headed, dizzy, and completely drained. After the angioplasty, I was able to work out longer, and feel SO much better than I ever did before. And now, I'm back to feeling horrible after aerobic exercise. It's frustrating. And it makes sense to me, and Dr. Hatch, and my neuro Dr. Vincent (I saw them both in the past 2 days) that if my veins are closed, and I do exercise that makes my blood pump faster and stronger, it's going to make me feel light headed and dizzy, etc. So, long story short, I've decided to have the surgery AGAIN. Yes, this will be my 4th venogram in less than a year. (1 with Dr. Gibby who claimed to have found nothing, 1 in Costa Rica, 1 with Dr. Hatch, and now another.) UGH, I know. But I want to know if my veins have restenosed, and the only way to really know is to have them go in there and take a look. So I've got the surgery (it's really just a procedure but they call it surgery)scheduled for March 31st at 7AM. I'm really not looking forward to being on yet another 30 days of shots in the stomach, but I feel so truly grateful that I can have this procedure done 30 minutes away from my home! What a blessing.
P.S. Apparently Chandler's music teacher told them today that if they leave their shoes out in the living room tonight, a leprechaun will come and leave chocolate golden coins in them. Chandler is SUPER excited about this and now the other kids are too. Ummmm...is SHE going to come to my house and put them in? No. Thanks a lot Ms. Music Teacher Lady. So...I guess it's off to the store for some chocolate coins. What's a little more candy, right? :)

My Experiment...

This post is completely unrelated to MS, but thankfully, my life is much more than that stupid disease so it's definitely refreshing to write about something else every once in a while:)
Candy is like crack cocaine at our house. Ok, ok. I admit I don't know much about crack. But I do know that my kids are constantly begging me for treats, and when there is candy or other goodies in our home, my children can't stop thinking about it until it's gone. Half the time, I end up chucking it in the trash when they're asleep because they drive me so crazy about it!
I'm pretty health conscious. I grind our wheat and make a lot of our own breads, rolls, pancakes, muffins, etc. with it. We don't eat much meat and we eat a lot of vegetables and whole foods. I'm always sneaking flax into anything I can and I never buy soda or chips or cookies. Granted, I do love baking so we sometimes have cookies and cupcakes around, and my kids end up getting plenty of treats from elsewhere. But they're still crazy for them. Every week, the kids look so forward to Saturday, because each Saturday morning, they get to eat "Saturday Cereal!" That's the only day of the week they get sugar cereal and they can eat as many bowls as they want.
They all go through phases of stealing sweets whenever they're around the house. In fact, I had some cupcakes the other day and after we were done eating them (for our dog Eddie's bday haha), I threw the last 5 in the trash. Thomas got up in the middle of the night and ate them OUT OF THE TRASH. UGH!!! My dad now lovingly refers to him as "Johnny Cupcake." :)
Anyway, so all this got me thinking...In Holland, drugs are not illegal. And as a result, they have very few drug problems. Drugs there are common-place, and they're not forbidden, and so people don't go so crazy for them. I'm not advocating legalizing drugs, but the fact stands that things aren't quite so inviting and tempting when they're not so forbidden.
So...here is my experiment. I went to the store and bought a lot of candy. I decided to stick with hard candies since they take longer to consume:) I bought a candy jar, and filled it to the brim. I told the kids they could have as much as they want. The only rule is that they can only take one at a time. I'm trying to stay calm as a write, because my children are going nuts for the candy. The jar is already a third of the way gone. Anna keeps looking at me every time she goes back to the jar, expecting to get scolded for getting yet ANOTHER piece of candy. My hope is that after a few days, the candy craze will subside, and they'll just take a piece every once in a while. My hypothesis is that it will greatly reduce the stealing, begging, whining, and overall obsession with sweets. I have no idea if this work. I'm not sure if I'll be able to survive the torture of watching my children binge on candy for the next few days. It's seriously driving me crazy and it's only been a few hours. What are your thoughts? I'd love to know. Is this irresponsible parenting? Or am I doing them a favor? I guess time will tell.

Good Day!

I feel good today! I've actually felt really good since Saturday and it's been really nice! I think my relapse from the holidays is officially over and I'm determined to feel good for a looooong time:) I've been really trying to eliminate stress from my life as much as possible and trying to eat well, exercise, and just take care of myself. And I think it's helping. The dizziness has been a lot better, my imbalance issues are less, and the pain has decreased a lot. And, perhaps most importantly, the "fog" has lifted. If you have MS, you know what I mean by "fog." It's like your brain is literally clouded over. You can't think clearly, you're tired, and you're just not yourself. It's depressing and crappy and I hate it, so I'm truly grateful to say I'm feeling better.
As far as how Chan the Man (that's how he refers to himself these days) is doing, we spent all morning at Primary Children's today. We had an appointment with the plastic surgeon, x rays in the dental clinic, and an appointment with the orthodontic surgeon. And we got good news everywhere we went! The part of the tongue flap that did heal is in the front of his mouth, which means that the surgeon feels confident about NOT doing a second tongue flap surgery, and moving on to re-trying the bone graft. SO, we're going to do a bone graft where they will take bone from his other hip and graft it into his top gumline on June 6th. Then, the orthodontist looked at the x-rays and said that it looks like the teeth we thought we would lose (canines) look like they are coming down into the tiny sliver of bone that he has from the last bone graft, which means no implants!!! SO EXCITING TO HEAR. We're not positive, but it looks like those teeth are going to survive afterall!! Dr. Yamashiro said, "I'm so happy to be giving you good news for a change!" I was ecstatic.
Anyway, so the tongue flap surgery was a success afterall, in that the hole is now healed at the front of the mouth, leaving the rest of the hole far enough back in the mouth that there shouldn't be any negative communication between the nose and mouth during the bone graft.
Anyway, probably too much information as usual, but mostly I just wanted to let you know that it's been a good day:)
Thanks to each and every one of you who have prayed for Chandler and for our entire family during the past few months. I have felt those prayers strengthen me and I know that Chandler has been comforted by them as well.
Life is good.

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 www.mormon.org, or email me anytime at tobybushman@gmail.com

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:)

http://www.b-roll.net/tv/view_video.php?viewkey=dc2a6340e258630febd5&page=1&viewtype=&category=tf

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