Update...

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...

Mayci...

I had my 3D ultrasound yesterday, it was really fun even though she wouldn't cooperate. She was moving around like crazy so we didn't have the best of luck getting many good face shots, but we did get alot of good feet shots! It was so fun to get to see her little features, I can't believe how big she is getting. We did find out that right now she is breech - her head is in my ribs and her butt is where her head should be....so if she would start working on a somersault that would be lovely. I still have time for her to flip - I am just 30 weeks, lets just hope she does it!!

Yet another informationless update...

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!!

No new news....but here is the nursery!

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.

Good news, the nursery is done! here are some pictures, my rocking chair is huge and takes up most of the room - but its so comfy! crazy thing about our nursery is that it was my nursery when I was a baby....funny how things happen!

So this is what $36,000 looks like...

That's right - the treatment they started Sean on is $18,000 a day and he had 2 days worth this week, but he sure looks like he is having fun, right? thank heavens for insurance!

Sean had a doctor appointment on Tuesday and they decided to start IVIG treatment on Wednesday and Thursday.  We are so excited to start something!!! It takes around 5 hours to get the treatment, so you just sit with an IV and wait.  The side effects are kinda sucky and where they gave Sean such a big dose 2 days in a row he is miserable right now with a headache and flu like symptoms.  Regardless, we are still happy to try something.  He won't notice if its working or not for 2 weeks - so we just wait and pray the he starts to see some improvement. If this doesn't work the next step is ANOTHER muscle biopsy, this time with an ultrasound and EMG needle in the muscle to get the right spot.  Sounds intense, we would much rather have this work, if it does we may never know what this illness is...but in all reality, if he gets better I don't think we care.

The sad thing about the IVIG is they say they are in a major shortage right now.  Its an eye opener to have someone that may be dependent on the treatments and think of all the times I should have donated blood, etc.  There were so many sick people there that day getting the treatments that I have made the resolution to give blood every time a chance arises.  Again, just another way this has changed our outlook on life for the better - now we just need to get him better!

An information-less update...

I am doing an update even though we haven't learned much since the last one.  Sean was released on Saturday (a week ago) we waited for test results all last week.  The PET scan came back negative for cancer, which is good and the lymph node test came back normal.  We were happy with both, yet we are to the point we want something to show as positive - although cancer isn't great, we were looking at it as an answer and knowing that treatment could be done and he could be fixed.  So we are basically still at square one.  Its still pointing to an autoimmune disorder, Sean's thyroid (or lack there of) levels are out of whack now so they are trying out different medication levels for him there.  Even though that's just a tiny piece of the problem we are hoping that once that is under control his nausea could possibly go away.  

So the plan from here is to go back out for a doctor's appointment tomorrow morning.  They are going to start immunoglobulin treatments on Wednesday and Thursday and we are hoping that he notices some change from that.  I have read really good success stories from the treatments so our hopes are high that this might be the fix.  We are both relieved that we are least going to start trying something! We just are praying he responds to the treatment and we will go from there for a diagnosis.  So that's that - not too informative, but an update.  Once again hope to have good news in the upcoming weeks!!

Update...

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.