Wednesday, January 25, 2012
Final Countdown
We are on the final countdown to our Big Daddy being home. This is so exciting and many time I am overwhelmed with emotion (the super awesome amazing kind). My outfit is picked out and our happy homecoming banner is on its way. I catch myself day dreaming about what that moment will feel like when we are all back together. Today one of my very good friends said "You did it!" and I thought, hell yeah we did it! We did it because of Mike's strength and the strength he taught our boys and our family. I am so proud of us and however silly it may sound I have to say I think we handled it with dignity, grace and most importantly with respect of the journey we chose to go on. Love that we can add this to our list of accomplishments and open the next chapter. Super cheesy post I know but this is my blog and I can post what I want ;) xo
Monday, January 23, 2012
Tuesday, January 17, 2012
Ethan Update YAY!
We met with pulmonary yesterday and Dr. Austin gave the sedation team the all clear to sedate him for the kidney biopsy, which is great. He also decided that since he will be sedated they will go ahead and do another bronch to verify the finding from the bronch in October. Still waiting to find out when this will happen but I am hoping it will work with Mike's schedule as he is coming home so soon. Ethan was very excited to see a doctor and not see any needles so it was a good appointment. The risks with the biopsy and bronch are low but he will stay overnight. I will keep everyone updated :)
Saturday, January 7, 2012
Ethan Update
Ethan, Ethan, Ethan.... The kid is such a trooper. So since I last updated everyone on Ethan he has had another IVIG infusion, they found a significant amount if blood in his urine, was on "lock down" to avoid him getting sick after finding a lung infection, and he has unexplained bleeding form his anus. They think Ethan has Alport Disease which will explain the kidney problems but not everything else. Alport Disease runs on my Moms side of the family and i am a carrier for the disease. Before Daddy gets home he will have another IVIG infusion, meet with pulmonary again for a complete pulmonary workup, meet with ophthalmology, have a kidney biopsy, and chemo (Ritux) infusion. He is being super tough, back on a low dose of steroids, and no longer on lock down. He has a team of half a dozen docs at Vandy now, all of which are amazing.
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