Update from Deutschland

Well, things have definitely improved since last I wrote. I took the kids to the dr. and Jonah has RSV, but he's doing better. We've got him using an inhaler and on some other meds and the German docters took great care of him. The pinkeye is cleared up as well so we're thankful for that. Jake got here after major problems, but still does not have his bags. The weather in Paris and Frankfurt have been absolutely horrible and the airlines are experiencing serious problems. We've got lots of presents in Jake's bag, so that's pretty lame, but we're just glad that he's here!! Yesterday, we went to Rudesdheim and had a wonderful time. We had heisse schokolade (hot chocolate) pommes frites (french fries)in an adorable little restaurant. We took the bus there and the train back and the kids were pretty excited about taking the train. Anyway, today is Christmas Eve and we've got lots of fun things planned. I'm so thankful the kids are feeling better and hope it continues. Our little nephew Clark had the flu for the past few days but seems to be doing better too so we're really grateful about that.
As far as how I'm feeling, I'm feeling pretty good. My legs are extremely bruised, front and back, up and down, I think as a result of being on two different blood thinners. I'm feeling a little dizzy when I wake up, my necks bugging me just a little bit, and my mind feels a little spacey. But I realize that I have not been eating well, sleeping well, or drinking enough water. SO I expect to feel much better when I get home, sleep in my bed, get back to eating healthfully, etc.
I wish you all a Merry Christmas!!!
-toby

We Made it....Barely!

Well we're here! And I'm really relieved and thankful to say that after the absolute craziness we experienced in trying to get here. The flight to Paris was a little less than 10 hours, and that was the part I was most afraid of. But the kids did fantastic. I was so proud of them and happy with their behavior. I had called the airline ahead of time to see what kind of onboard entertainment would be available, and they told me there would be individual televisions at each seat, as well as a selection of 18 video games to play and several channels, so I was relying on that for the majority of their entertainment on the flight. But when we got on the airplane, there was no tv, no games, nothing. I was a little nervous about that and they were pretty disappointed, but they did great. They entertained themselves with their little toys and coloring books that we packed, they were considerate and helpful to eachother, and they each slept at least 5 hours of the flight. Jonah slept on my lap so peacefully and I just watched this beautiful baby sleep and tried to take it all in, because he never, ever falls asleep on me. He's getting so big so fast and being able to watch him sleep for so many hours was truly a blessing to me. I didn't get one minute of sleep but I was thankful that the kids did.
When we arrived to Paris I thought, "We did it! Woohoo! Now it's just an hour and a half flight to Paris and we're done! What could possibly go wrong now?!" And then, all hell broke loose.
We got off the plane and I took out our itineraries and they didn't have a gate listed on them. So I waited in line with the children and finally spoke to a French woman who looked at my itineraries and said, "You're flying with 4 people, correct?" I told her yes, 4 and a lap child, and she proceeded to tell me that Jonah was not listed on any of my information and that he did not have a ticket. I sat there and argued with her for 20 minutes with no progress at all. Because my airline switched from Delta to Air France in Paris, someone dropped the ball and didn't list Jonah. Anyway, she told me I needed to go through customs, out of the airport, take a bus to terminal 2D and get him a ticket, then go back through security and on the shuttle to my gate. My flight left in an hour. It was 3 AM Utah time. I had no sleep and my children were exhausted. I asked so many people for help and NOBODY would help me. Nobody, nobody, nobody. So I started heading for the terminal. I couldn't find it so I asked someone else and they said not to take the bus but to just walk. So we RAN, and I'm sure it was well over a mile, to the ticket counter, where they gave me a paper and told me it was what I needed to get Jonah on the flight. And then we RAN (poor kids) back across the airport, made it through security (of course, they had to pat down Chandler because he looks like a total terrorist), to the gate, where everyone had already boarded the airplane. I showed them what we had and they said, "This is not good enough. We can't let your baby on the plane." At that point, I lost it. The plane was about to take off and they told me I needed to go BACK to the ticket counter (a mile away) where I had come from and get something else. I could not believe it. I had no idea what to do. I cried and begged and pleaded for her to just call Delta and ask them to clear it up. "This is YOUR FAULT, NOT MINE!! FIX IT!!!" I told her. She told me there was no possible way over and over and finally she got so sick of hearing me that she made some calls. Long story a little shorter, after the doors had already closed to the airplane, she figured out a way to let me on, walked us down to the airplane where they opened the doors and let me and my four children on. What a nightmare. I was so shaken up and so sleep deprived and so ready to just GET THERE, and then they came on the intercom and said it would be an hour before we could take off. Nice. Then, the flight attendent came and informed me that none of my luggage was on the flight and that I'd have to track it down once I got to Frankfurt. UGH! We are still missing one suitcase so Anna and Jonah are without clothes, but we finally got our other suitcases yesterday after a few trips back to the airport.
Anyway, I'm just very thankful that we're here, safe and sound. My kids are really jet lagged. Nobody fell asleep until about 2:30 this morning but hopefully tonight will be better.
The kids are so happy to be at Grandma and Grandpa's house, and that makes it all worth it.

Thanks for Your Prayers!

Well, yesterday was a crazy and wonderful day:) Do you want the long story or the short? I'll give you the long and you can skim it if you want:)
I woke up around 7 and showered and got all ready, just in case I was going to have surgery that day. Then, when they opened at exactly 8 AM I called my insurance & gave them the surgery codes to see if they required preauthorization. They said they did not so I headed to the hospital, just in case there was a chance they could get me in. On the way there, Aunt Callie (who was already at the hospital with my other Aunt Marcia who was getting her venogram yesterday as well) asked the nurses station at the hospital, and they said that they had 10 surgeries already scheduled for the day and that the way things were, they would already be there into the night. Meanwhile, I called the scheduling department at UVRMC and the (snob) lady on the phone told me that there was absolutely no way that they could get me in at all and that I probably wouldn't be able to get in next week either. I told her that I had already spoken to the docter's office, and that they said that they wanted me to get in today and that I was leaving for Germany, etc., etc., and she said, "Are you telling me that you got special permission from the dr. to let you into surgery today, on an already packed day?" I said, "Umm, ya, I guess that's what I'm telling you." haha She was totally skeptical and said, "Well, I'm going to go talk to the Dr. in surgery and see what he says about it." For the next 2 minutes, I prayed with all my heart and soul that the Dr. would tell them to let me in. She came back and in a very annoyed tone said, "Have you had anything to eat or drink since midnight?" I happily answered, "nope!" And she said, "Can you be here at 10:?0?" I said, "I'm on my way!" Amazing.
So, I didn't end up getting into surgery until about 2:00, but I was willing to wait all night if I had to. I was just grateful to get in at all.
They began the venogram and first looked at my jugular veins. Both jugular veins were 50% narrowed, which they didn't see (or hadn't occured) in Costa Rica. So they ballooned those. Then they checked my azygous, and it looked like it was still opened from the first surgery. Then they went into my iliac (where the May Thurners is) in my left leg and found that, not only was it closed, but it was a "complete mess," as the dr. put it. When he saw all of the scar tissue surrounding it and all of the mess of smaller veins that had formed out of it, he decided it would be better not to stent it. I layed there on the operating table and BEGGED him for what seemed like forever to put the stent in. He told me over and over that there was too much scar tissue and that he thought all of the other veins that had formed were compensating well, and that he would just balloon it, and that might give me a good 5 to 10 years of it being opened. I told him that when it closed back up (which would probably be sooner rather than later, considering the first only lasted 5 months), they'd have to balloon it again, and that would just create more scar tissue, and then it'd happen again, and so on and so forth, and that I felt it was worth the risk to just put the dang stent in. After telling him how strongly I felt about it and getting pretty emotional, he finally took a deep breath and said okay. He tried and tried to get in on the right side and couldn't so he eventually decided to make a new incision on the left side and go in that way. The stent, which is 6 centimeters long, glided in way better than he expected and he was really relieved and suprised and happy that it went so well. And so was I:). After the surgery he came out and explained to Jake, Corey and Bridgette (my bro and sis in law) what a mess the iliac was and that "Toby FORCED me to put that stent in, but it turned out great." Haha Oh well, I know I'm pushy when I feel strongly about something but ya gotta do what you gotta do right?!?! ;)
Anyway, I know it wasn't smart, but I decided to drive home since Jake and I had two cars at the hospital. I totally puked while driving in heavy traffic. That is an experience I will never, ever forget. Disgusting. By the time I got home, I was in terrible pain, had vomit on me, and one of my incisions had started bleeding and was dripping down my leg. I held some pressure on it and the bleeding stopped, but the pain did not. It was horrible. Intense pain that started in the right side of my abdomen and shot down my leg and into my back. I didn't really have any pain with the last surgery so it worried me a bit. I called the dr. and he said that they probably hit some nerves when they were trying over and over to reach the iliac through the right side and hopefully it would feel better in the morning. So I took some pain meds (and a generous dose of cough syrup haha) and was able to sleep through most of the night. I woke up in quite a bit of pain this morning but once I got up and moving it got better and better. It's still a little painful now, but it continues to get better and I'm confident that I'll be back to 100% in a couple of days.
As far as my MS symptoms go, the pain that I was experiencing before in my legs is completely gone, my dizziness is gone, my eyes aren't wigging out anymore, my neck no longer hurts, and my left leg is no longer weak. Incredible. Thanks to each of you for your love, support, kind comments, and most especially, your prayers.
All my love to each of you,
toby

Hopeful for Tomorrow

It's been too long since I've put pictures in a post so here are a couple from our recent family photo shoot. :)

Well, after a whole lot of craziness, and prayers answered, and help from some amazing and compassionate people, it's looking like they might try to get me in for surgery tomorrow. I have to call first thing in the morning and make sure my insurance is okay with it, and then I'll probably head to the hospital and wait to see if they'll be able to get me in. Wish me luck!!!
toby

Small Setback

Yesterday was a depressing day. I came to terms with the fact that my symptoms were returning.
On Thanksgiving Day, my back felt like it had spiders crawling all over it. This lasted two days. And the other day, my eyes started making things look like they were moving when they weren't. And on Monday when I ran my usual distance on the treadmill, I felt super dizzy, drained, and lightheaded afterwards, just like I used to. My neck has been hurting for the past few days and yesterday my left leg was just as weak as it used to be. This morning my left leg is weak, and my right leg is in a lot of pain.
I cried myself to sleep last night with my sweet husband rubbing my back and running his fingers through my hair. It's terrifying. All of a sudden, I'm back to being afraid for my future. I feel like I'm starting all over on how to get through the day. And I feel like I've forgotten how to fake it and push through like I used to.
I called the doctor yesterday who has been performing procedures here in Utah and the receptionist told me I can't be seen until January 7th. This means I'm going to have to deal with this stupid disease for the 19 days we're in Germany. I was so hoping he could just get me in and fix it before I left. I'm flying to Germany with four kids by myself, and I felt fine about it until now. I've been so short with my children the past few days. It's so much more difficult to be a patient, fun, loving mommy when I don't feel well. But it's not fair to them.
I hope and pray that this is just my veins closing again, and that the problem is still fixable. When I was in Costa Rica, they told me that I had May Thurner's Syndrome, where the left iliac vein is compressed by the right iliac artery, and after they ballooned it, they told me that it was just a matter of time before it would close again. So I'm pretty confident that this is what's happening. I just need to get in and get it fixed!!!!!!!!!!!
Anyway, I'm so sorry this is so jumbled and unorganized. Thanks for bearing with me. It's been therapeutic for me to just write. Thanks to so many of you for your love and support. I'm done with my pity party and I'm ready to keep fighting.
-toby

Aunt Callie's Progress

From my Aunt Callie a couple of days after her surgery, performed in Provo, UT:

Just wanted to update everyone on what’s happening. I’m feeling great! Here are a few of the things I’ve noticed
1- I put my pants on without sitting down or leaning against something. I know this seems stupid, but I haven’t been able to do that for years so my balance is getting better
2- I shaved my legs without having to hold up my leg and lean against the wall of the shower as much as I used to. Again, haven’t been able to do that in years either. I was still a bit wobbly but a lot better
3- Scott and I went on our 1 ½ mile walk this morning and wore my tennis shoes and my feet didn’t hurt…again haven’t been able to do that in years. I usually wear my little $3.00 Hawaii flip flops because they are the ONLY shoes I can wear that my feet don’t feel like I have tons of rocks in my shoes. Occasionally I will wear my tennis shoes but about half way on our walk my feet are KILLING ME and they didn’t hurt at all today. I was still a bit dizzy after the walk but not as bad as it usually is so I’m hoping that it will improve too.
4-One of the best things that I forgot to say was that I went to bed at 8:30pm last night and then woke up at 6:30am this morning and didn’t even feel tired when I woke up. Usually I can sleep 10 hours and when I wake up I feel like I haven’t even been to sleep so hoping the fatigue will get better because that’s one of the worst thing about MS.

Anyway, so blessed to have this behind and hopefully things will keep improving. My hands are still numb but they said it might be a few weeks so I’ll keep hoping! Thanks to everyone for your thoughts and prayers!! Can’t wait for Marcia to have it done!!!!!!!!!

Love you all!
Callie