

She's finally here! Mayci was born Monday the 21st at 8:56 pm. She is 7 pounds 1 ounce and 19 inches long. It was a long day but everything went good. She is such a good little baby! We are so lucky that she is here and so healthy....
I don't have much of an update. Sean had some doctors appointments yesterday and I was hoping to have some new news but we really have nothing. I got banned by my doctor to make the drive with him because of the snow - and because he says I could have the baby any day now..crazy! So my dad took Sean out instead, the roads were bad but they made it in just under 4 hours, the drive is usually a little over 2. He had a CT scan first thing which came back clear again for cancer, we just need to stay on top of getting him scanned frequently to make sure something doesn't pop up. He then had 2 doctors appointments, none of which he really found out anything new. His thyroid is still completely out of line so that is their main concern at this time, they don't think its the cause (dang it) but they think if they can get it corrected Sean would be responding alot faster. He had his blood drawn and we are waiting to hear what his CK levels come back at - praying for good news, last time he was at 11,000 and anything lower would be great great news!! As for the baby, I am set to be induced on the 21st...he weighed her on Monday and he said she was 7.2 pounds - geez, she could be a big one!
I couldn't fit the pictures in my previous post..here is our small little tree, and the realization that Mayci is really coming with our stockings up - we can't wait!
We had a crazy crazy Thanksgiving weekend. First, we drove to Orem to Sean's grandparents for Thanksgiving on Thursday morning. We had a great time with a yummy dinner and then my sister in law set up some maternity pictures for me; Sesily's sister in law took my pictures, I have only seen a few but they turned out so good! I would have never of thought of getting pictures, so I am glad Sesily set them up for me. After the pic's we went to visit Myles and see his new house and headed back to Roosevelt that night....long day, but it was a great Thanksgiving!
I am finally uploading pictures....here are some pictures from my Roosevelt shower which was the end of October. I am a little slow - but here they are! it was such a fun shower...
We went to the doctor this past Tuesday. Sean did another cancer scan (which came back negative) and then we met with our neurologist. It was an eye opening appointment being that the doctor really has no idea how long it will take to respond to the treatments and recover, and to what extent he will recover to...but it was good for us because it gave us a realistic view on what to expect on his road to recovery timeframe. It could take weeks, months or years but Sean and I know that he will get better with treatment and physical therapy. I feel like we have had this deadline in our mind of him being better before the baby comes; it stinks but we realize its most likely not going to happen by then but it will happen with time.
Onto the GOOD news, Sean had his blood drawn and his CK levels are down to 11,000!! this is still crazy high, but Sean' levels have been as high as 37,000 through all this. He seems to always be around 30,000 and after his last IVIg treatment in September they got down to around 26,000 and we were estatic, so to have them at 11,000 is amazing! So the great news is that he IS responding, he had barely gotten his treatment on Friday and the blood test was Tuesday. So we just need to keep on with the treatments and get this thing stopped...and then start rebuilding! he is starting physical therapy today to start stretching muscles which will help - but I can't tell you how great it was to get the news that although muscle's are still breaking down...they are doing so at a much much slower rate. His next appointment and blood test won't be until December 8th, I just hope that they levels continue to go down in the meantime. Sean can't feel the improvement yet, but hopefully he will start noticing little things showing signs of the breakdown stopping. We just continue to pray for recovery, it is so nice to get good news for a first!
So after over a month of fighting with Blue Cross and sending multiple appeals on both my side and the doctors side....WE WON! Sean was approved yesterday to start receiving IVIg treatments once again, he is approved for 3 months and they will be going back and paying for the September treatments! We have had many people involved on helping us get the appeals out, what finally did it is State Farm fighting on our behalf and getting him approved...thank heavens and thanks for all the help!
So Sean will get a treatment tomorrow, we just hope he responds after all of the fighting we have done. He was showing improvement from the September treatment so our hopes are high. We know it will be slow even if he is responding - and he will most likely need months of treatment to see improvement, but hey improvement is improvement and I cannot wait to know that this awful disease is not progressing every day. We have another doctors appointment at the U on Tuesday for a follow up and another cancer scan. We are still waiting to get all of the final results on his bloodwork, muscle stains, and lymph nodes - cancer is very likely with any of the autoimmune diseases we are dealing with so we need to stay on top of keeping him scanned. Other than that, no new news - just excited to actually be doing treatment again!
So Sean was officially declined from getting his IVIG treatment this month. I was on the phone at least 4 times a day with our insurance company and the doctors office, etc. Nonetheless they officially declined it. I hate how an health insurance company can determine what is best for someone - even though the doctor is stating how bad he needs to treatment. They are ultimately having problems because Sean doesn't have an exact diagnosis so they feel we are being experiemental....so because of that Sean is set for ANOTHER biopsy next Thursday because now we are desperate for a diagnosis. Its unfortunate because Sean was slowly responding to the treatment, his levels were going down. But heck, why in the world should we keep doing a treatment that works right?? All I can say is at this point I am grateful we aren't involved in the health insurance business...
This next biopsy is going to be pretty intense. They are going to ultrasound his muscles, go in with a wire that I believe shocks the muscle, hook the wire around the damaged muscle and then have a brain surgeon go in and remove that exact spot. Little intense ey? they said that they have only had to do this type of thing once or twice before - gotta love being the anomoly right?? Sean likes to keep it exciting.
So there is an update on Sean, we will probably be another 2 weeks before the biopsy is done and the results are in. We pray they find the diagnosis so we can just get on board for treatment. Mayci's deadline is fastly approaching, we hope so bad that he is on the mend by then.
Thanks for all the calls and comments again, people have been doing the nicest things for us. One of our customers yesterday brought me flowers just because, it was seriously the nicest thing ever! I about start crying while he was here but didn't (I held out until after he left), the simplest gestures can make the biggest difference in someone's day. Just another thing to learn from this experience...he not only made my day but my week! We will definately be better people from all of this...
So no new news yet again. We went to a doctor at the U on Monday who ruled out one of the possible autoimmune diseases which we were already 90% sure he didn't have, sadly it would have been one of the better autoimmune's but at least we checked another box off I guess. We flew to Vegas on Thursday for the other doctor's appointment, we weren't super impressed on Thursday but he had us come back in on Friday and he brought up some tests that from what he could tell hadn't been ran. So he is running a couple of virus tests and also a heavy metals test to see if anything like that is in his system - the heavy metal thing would be an amazing thing because he could just do a cleanse, but both Sean and I feel that its bigger than that and don't want to get our hopes up. So we should hear back on the viruses this week, the metals next week...we may not find a solution but at least we got an outside opinion on some different possibilities and we got to spend some time with Sesily, Trent and the kids which was a nice break!
Sean is scheduled to get another IVIG treatment on Thursday, I am crossing my fingers that it happens. It the middle of all of this our insurance has decided to be butts and not approve the treatments...not only are we fighting to get the $36,000 from September paid but more importantly trying to get him approved for this month's treatment so we can stay on schedule. Why can't things just be easy?? I am hoping things clear up for us there, I swear if its not one thing its 10 more. I think we are on track to get things worked out - its just a battle doing it.
So that's that for an update. Still sitting on the waiting list for Mayo clinic, and in the meantime hoping that this IVIG treatment kicks in. Sean's CPK levels (muscle enzyme) were down to 26,000 last week - which is still crazy high but just 10 days before he was at 37,000..so we are hopeful he is responding and its just a slower process than what we had planned. Still good news though! again, I can't thank everyone enough for all the comments and calls!!
So we have no new updates with Sean. The treatment hasn't kicked in yet, but it could very well take a few more weeks to see anything. He has another treatment set up in a few weeks - plan is for him to get one every month and hope for results! We have 2 doctors appointments in Salt Lake next Monday, then we are going to Vegas on Thursday to see a doctor we have heard alot about, he is more of a homeopathic doctor but we are hoping he has some ideas for us. We are also now on the waiting list for the Mayo Clinic in Scottsdale, another opinion never hurts so we will wait to hear from them. We have an amazing doctor at the U, but without Sean seeing results its so hard to sit back and be okay with him not getting better. We really appreciate all the comments everyone has left for us, we have had so much support from friends and family.
Here we go with another update from another crazy week. Sean was admitted Tuesday morning and we are still in the hospital hoping to be released today. He has been put through it once again, we have seen just about every specialist possible to rack their brain for any ideas of what he may have. Yesterday was a eventful day with a PET scan first thing to check for any possible tumors anywhere. He was in for 3.5 hours and when we came out I had to stay 6 to 8 feet away from him because of being pregnant and they used radioactive glucose for the test. I had to keep my distance for 12 which was tough. Then he went into surgery at 6:45 last night to have his lymph node removed. I think after all he has been through this one was by far the worst. The incision is in his arm pit and so so sore. They took 2 lymph nodes and will get running the tests on them.
So after 4 days here we still have no idea what is going on with him. They won't be able to get results from anything till Tuesday because of the holiday...this is the first year I have hated labor day! We hope to have an answer soon, we are at the point we just want something to come back positive so they can stop biopsing everything and start treating him. So that's it for now, hope to have him home by tonight with results in next week! Thanks again for all your comments and calls.
So still no diagnosis for Sean. We were out at the U again on Thursday for a doctors appointment and yet ANOTHER biopsy. This time they biopsied Sean's lymph node in his arm pit, he is seriously a trooper. He doesn't even flinch when they say what they are going to do to him, I would be a complete crying mess if I was going through everything he has had to...I can't believe how strong he has been through all this. Anyways they biopsied the lymph node looking for possibly lymphoma cancer. It of course came back inconclusive (I am growing to HATE that word) with some information but not everything they needed so he is now scheduled to be admitted tomorrow morning, hopefully just until Wednesday but you never know anymore! They don't think that its lymphoma cancer but are worried about other forms of cancer. So where we stand now is they ruled out muscular dystrophy YAY!, which is such a relief...an autoimmune disorder is still a possibility, but now they have added cancer into the possibilities as well. We get one thing ruled out and another put in the game. We just want a diagnosis fast, Sean feels so horrible any relief would be great. Keep him in your prayers, again I am hoping to be able to post my next weekly update with some good news!!
On a positive note we were able to get our nursery set up this weekend. Kind of a reality check for us, everytime we walk by the room we both stop and look at it for a minute. What was an exercise room Friday night is now a full blown nursery. It turned out really cute, we are just waiting for the rocker to come in and we will be set nursery wise. Still lots of other things to get, crazy to think that I will be 6 months along next week.
Sean and I have had an adventureous past week - many of you have called and its been a little too crazy to return the calls, so I figured it may be best to post a little something here. Sean has had severe muscle weakness and weight loss over the past few months, we both knew something was going on but he had his annual appointment for his thyroid so we put it off hoping it was somehow tied to it. We were hoping for a quick fix but it is in no way tied to the thyroid. We then started setting appointments with various specialists but figured we would start with a internal medicine doctor here is Roosevelt. Last Tuesday we had our appointment, he ran his blood tests and we heard back around 10:00 that night that his muscle enzymes were crazy high (30,000 to be exact) and something was attacking his muscles. That doctor then called Sean's other doctor in Provo - who then at 10:30 at night called us in a complete frantic saying we needed to get to the emergency room ASAP so he didn't go into kidney failure. So we drove to Provo - got to the emergency room at 12:30 am and started a crazy journey. Sean was admitted there and then transferred to the University of Utah Tuesday and they kept him until Friday. He somehow conned them into letting him go even though they wanted him to stay until this Tuesday. We left Friday night and went back out this past Tuesday so they could do a muscle biopsy, so he is now recovering from that. We had another follow up appointment in Roosevelt yesterday, some more tests scheduled for today, and then hopefully a diagnosis with an appointment at the U on Tuesday.
None of the options they have given us are too good, but we still have a crazy amount of hope that it could possibly be something that won't change his lifestyle for forever. They are leaning towards muscular dystrophy, but there are still some other options out there; its pretty sad that we are hoping for an autoimmune disease because there is medication for it - whereas with muscular dystrophy there is nothing they can do. Life can change so fast, we have learned to never take your health for granted. We are so thankful for all of those that have been thinking and praying for him....we really do hope to have some good news next week. I know this is not the best way of informing everyone and/or thanking everyone for the calls but our lives have gone past crazy. Keep him in your thoughts...thank you!!
Well this post is a little late but Sean's birthday was Tuesday, the big 28! I actually took pictures but will have to post them later. We tried to have a big fun weekend for his birthday - we went camping and was so excited to get away, but it rained 90% of the time. We still had fun, but it was a big muddy mess with muddy dogs and kids! we cut our trip a little short and came home due to no more dry clothes. Sean's birthday was just a normal day, you now your getting older when you just go to work like a normal day on your birthday...but we did have a family party afterwards with a sweet "cowboy" cake that I made for Sean. Happy Birthday to Sean!! photos to come.....
So I have been a blog slacker once again! The sad news is we haven't been doing anything exciting to blog about, but here is a little update. The office is up and running, we are still very busy with it but we love it. In our spare time we have been trying to get our yard pulled together, Sean starting making a pipe fence a couple of weeks ago and he taught himself how to weld with only a few minor burns on his hands and arms. I proudly tilled our garden by myself last week - its offical Sean and I are turning into country folk! I have been biking trying to get ready for my 100 mile bike race in June...scary! the weather hasn't been too helpful in preparing but being I have less than 2 months I better get going. - no excuses. We got a new niece last week - Sesily had a beautiful baby girl Amara, now we need to plan a trip to Vegas! and that's that...we will try to be more eventful in the upcoming months so we can have some juicy posts....but for now, that's an update.