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.