We're back at the hotel! When we got out of the shuttle, everyone was there to greet us. They cheered and clapped and welcomed me with open arms. Such wonderful people. They are so genuinely excited for my success. Dr. Fallas came in around 5:00 PM and showed us step by step the procedure and all of the images. He showed me the blockage in the azygos vein and then when it came to my left leg, he told me that I have a syndrome called May Thurner Syndrome. You can google it to learn more, but basically, in everybody's body, the iliac artery crosses over the iliac vein, but with May Thurner Syndrome, the artery causes the vein to collapse. So, no blood was getting through. He said that he opened it up with the angioplasty, but that there was a very high probability of it closing back up. He said that I need to see a vascular surgeoun and have additional surgery in the States to either put a stent in, or re-route the artery to go under the vein rather than over it. Apparently Dr. Zamboni is seeing a large correlation of May Thurner Syndrome in MS patients along with CCSVI. So, I have CCSVI and May Thurner Syndrome. Jeez. I'm just really glad that they found it because, if left untreated, it can cause a blood clot to form and travel and it can be fatal.
I had a really hard time understanding why I felt so strongly that I needed to come to Costa Rica rather than waiting for Albany. Perhaps the reason is that the dr. in Albany does not look at the veins in the legs. He simply looks at the jugular and azygos veins, as far as I know. He didn't mention anything about imgaging anything else when I spoke to him. Anyway, the results have been better than I could have imagined. We'll post some before and after videos but it has truly been remarkable. 2 days ago, I could not stand on one foot without falling. I could not close my eyes without tipping. I had a lot less strength in my left leg. I couldn't flip my left hand back and forth on my right palm, and now it is effortless! Same with my left foot. It's amazing. I'm so thankful that these are the changes that I'm having, rather than feeling my legs for the first time in years or being able to walk without a cane. I am so thankful that I was able to have this done before it got that bad. It's wonderful, and I thank my Father in Heaven for this tremendous blessing.

PS Yesterday, Sean could not feel the physical therapist touching his leg when he had his eyes closed. And now he can feel if someone just barely touches them. Incredible.

Update from the hospital.

I'm sitting in my hospital room right now hooked up to an IV and just waiting. Just got some blood drawn. They did the MRI (A million times worse than in the US, but very thorough) about 2 hours ago and then the doppler ultrasound, also very thorough. The hospital staff are wonderful and Corey, Bridgette, Corey's friend Steven, Ann, Jeff, and Jake are all here with me. They actually all just went to the cafeteria to get some lunch:). I don't think I'll be allowed to eat or drink until tomorrow. No biggie, maybe I'll lose a pound while I'm here:) haha
They are very sanitary and careful and helpful here. In the ultrasound, the right jugular looked normal and they found one spot of narrowing on the left. Now we're just waiting, probably for a few hours, until I can get into surgery. In my friend Kathy's ultrasound they didn't see anything, and then they found quite a few narrowed spots when they actually went inside the veins. So there could be more spots, we're not sure. We're all in good spirits and doing fine. Thanks to each of you for all of your comments, your prayers, your emails, your wall postings, etc. I wish I could respond to each of them, but please know that each time I read one, it gives me just a little more strength to keep going and to keep fighting. I can't tell you how much it means to have such an incredible outpouring of love and support. Once I have surgery, we won't know the results until tomorrow morning, and we will post them as soon as we can. Thanks again for all of your support and encouragement. All my love to each of you...

Email from Chandler:)

deer mom and dad mi tooth thet wus loos wus bleedeeng on the day after you left i hop youor haeeng fun i hop yur serjree gos wel lovchandler

I am so blessed.

We spent the afternoon at a market looking at souvenirs, etc. Then we we took a taxi to an Italian restaurant and met Steven, Yalena, Bridgette, and Corey there to celebrate Yalena's 25th birthday. It was DELICIOUS!!!!! Steven was one of Corey's mission companions who lives here. Corey and Bridgette are staying at their house. They're a really nice couple and it was fun to hear all about their country and culture. After dinner, we took another taxi back to the hotel and visited with a few of the other patients who have been treated here. It's so neat to be surrounded by people who are refusing to give up; people who are fighting back against this stupid disease. They are doing really well and are so happy to be here and finally seeing some changes after years of doing nothing but declining. Then we went to the jacuzzi for a while and visited some more with Kathy, but it wasn't warm so we came back to the room and now we're headed to bed. I'm exhausted. We'll see what tomorrow brings!!!!!!!!!
Love you all.
toby

We just arrived at the hotel. Gonna go to the market to get some groceries. Corey and Bridgette should be here around 11. We just met Kathy in the hallway. She is my friend from Canada who has MS and who got me into this slot for surgery. Her room is right next to ours. It was wonderful to finally meet her in person. She had her liberation treatment two nights ago. She says that she's feeling good. She is still in the wheelchair but she has a lot more sensation in her hands, she can taste much better, and the pain in her leg is GONE. She said that a while back, she requested that her leg be amputated because the pain was so excruciating and never, ever let up, and now it is gone. Amazing. She's looking forward to rehab today where they'll do some excersizes with her and some nerve tapping, etc. I go into the hospital at 10:30 AM tomorrow and won't be done until late at night. PRAY THAT I HAVE STENOSIS IN MY VEINS!!! We'll keep you all posted!

Update on Chandler and Anna

While I'm sitting here and the three littlest are napping, I think I'll update everyone on Anna and Chandler's medical issues. Everyone keeps asking me for updates, so I figure this is a good place to put it. Anna goes in for a CT scan under anesthesia at the Riverton Hospital on Monday. She cannot breathe out of her nose and this is causing her particular trouble at night, as she clenches her mouth closed and doesn't get enough oxygen. It is getting worse and worse, and this past week she is acting very tired and grumpy most days, which tells me that she is working so hard to breathe at night that she isn't getting enough restful sleep. Her surgery is scheduled for July 12th, but at until we get the results of the CT scans, we won't know exactly what they will be doing. At the very least, she will be having her adnoids, and most likely tonsils, removed. But they are thinking that there is significant stenosis of her nasal passages, either due to a wall of bone or a wall of mucous. If it is mucous, they can clean it out pretty easily during surgery. If it is bone, the surgery becomes much more complex.
We took Chandler to see Dr. Yamashiro at Primary Childrens yesterday. He adjusted the prosthesis that Chandler has in his mouth and again examined the hole on the roof of his mouth that we have already tried to fix with 3 previous surgeries. The problem is that, after 16 surgeries, there is too much scar tissue in that area, and scar tissue does not stretch well. Each time they have tried to reapair the fistula (hole), it has failed, and as a result, Chandler still has food coming out of his nose when he eats. Dr. Sidiqi recommended just giving Chandler a 6 month break from surgery, but after seeing Dr. Yamashiro, and consulting again with Sidiqi, they're not thinking that's such a good idea anymore. They're really thinking that we need to get this repaired so that we can try to bone graft again before Chandler's permanant teeth begin to try and descend. Now they are saying that the best option looks like cutting the top front bone out and moving it back and reattaching it, and at the same time, taking more bone from his hip and grafting that into his clefts. Moving the bone back, they say, will give it a much better chance of healing, because it will eliminate the need for the tissue to stretch, thus giving it a much higher chance of healing. Then, 16 weeks later, once everything is finally in one piece, they will cut the bone again, and move it back to where it was to begin with. I hope that makes sense...it's difficult to explain. This will be a very difficult surgery and we are still trying to figure out what is best for our sweet little Chan Man. When Dr. Yamashiro was explaining this procedure, I felt the all too familiar feeling of being punched in the stomach. The thought of my little sweet boy laying on that operating table and having his mouth taken apart and put back together rips me apart. At the same time though, I know that our Father in Heaven has a plan for Chandler, and that, if we decide to go ahead with this surgery, he will be okay. Thank you for all your love and support. Chandler is an incredible kid, and he continues to teach us so much.

The Countdown to Costa...

Well, my dear friend Kathy left for Costa Rica yesterday. She's been counting down the days for a long, long time, and now the time has come. You can hear a little bit about her story by watching this news clip.
http://www.ckpg.com/news/10300-ms-treatment-video.html
Kathy is who I have to thank for being able to go to Costa Rica so quickly. I met her online a few months ago and she put in a good word for me with Passport Mecical. Thank you Kathy!!! I am praying for you!! Can't wait to meet you in person.

There are so many emotions going on as I prepare to head to Costa Rica. My biggest fear is that I will get there and they will tell me that I don't have CCSVI and that there is nothing that they can do for me. I know that this is unlikely, and it wouldn't even worry me if I was going on my own dime, but because I am using the generous donations of so many people who sacrificed so much to get me here, it scares me that I will let everyone down. It's kind of an odd thing to hope for the drs to find something wrong (CCSVI or narrowing in my veins), but at least if they find something wrong, it can be fixed. When it comes to this disease, a problem that actually has a solution would be fantastic!!! Yes, they have already found narrowing in my veins, but I can't get formally diagnosed with CCSVI until I get there, so keep your fingers crossed and please say a little prayer for me.

Another thing that I am dreading is leaving my sweet children. My sister Brynn is watching my oldest three and my Aunt Callie is keeping Jonah. I know that this is a huge sacrifice for both of them and words cannot begin to express my gratitude. It means so much to me to know that, if I have to leave them, they will be in good hands. But even with this knowledge, I am not looking forward to being without them. I feel like I'm leaving my heart at home. I keep trying to stay positive and remind myself that I am doing this for them. I want to be around for them. I want to be a healthy mom and I want to be able to grow old and enjoy them and their families when they are grown. These are hopes that, just a few months ago, I had given up on.

But my main feeling is this. No matter what happens, no matter what the outcome is in Costa Rica, I know that I am supposed to go. I prayed about this decision and feel very strongly that this is what I am supposed to do. Whether or not that this is the answer for my MS, I do not know, but I know that I'm supposed to go. I sincerely hope and pray that the reason I need to go is because it will improve my life and lessen the effects of this disease.

But even if this is not the answer I'm looking for with the MS, I know that there is a plan for me. I know that God knows me and loves me. I know that He knows exactly what is in store for me and my family, and the peace that comes from this knowledge is enough to keep me going.

I always think blogs without pictures are boring:) So here is a recent picture of the kids and I with my sweet Great Aunt Barbara. Her sister passed away a couple of weeks ago, bless her heart.

Thank You.

This has been such an incredible experience. I can't even begin to express the depth of gratitude that I feel to each of you for your love, your support, your encouragement, your prayers, your well wishes, and your generous donations. Thanks so much to each of you for helping our family out and giving me the possibility of growing old with my sweetheart and being there to raise my children and enjoy my grandchildren. To have hope for a healthy future is indescribable and I have each of you and so many others who I don't know personally to thank. I know that God lives and that He loves each of us. Each of you have helped me to feel the love of my Savior so intensely and I hope and pray that you will be blessed beyond measure for your kindness. All my love to each of you.