We have discovered a "new" holiday for us......

Well, we had Hannah's follow up appointment with the surgeon yesterday and it was a rough one.  Let's just say we are up to 6 meds a day for her!

Over the weekend I have noticed that Hannah's belly had seemed bigger to me, so I was happy to have this appointment to go too.  When he walked in, I am pretty sure he noticed it right away.  I told him I was concerned about her belly and something just didn't seem right.  He really didn't have much to say and he didn't have to because I could tell by the look on his face he was worried too.  So after 5 hours of testing and seeing our GI doctor it was confirmed that Hannah does have fluid on her abdomen. They have put her on a diuretic and want to see her back in two weeks. One top of that her vitamin D levels are drastically low so they added that medicine as well.  The GI had felt her abdomen and seems to think her liver has gotten smaller, which unfortunately is not a good thing.  After all these results, it just tells me her liver disease has progressed, and we are a step closer to transplant.  Maybe I am wrong and maybe things can turn around, but I just have this feeling that is not going to be the case.  You know mothers intuition is always right!!  So in two weeks we will know how things are looking for her.

We have tried to prepare ourselves for these types of bad days.  In all reality, her surgery is just delaying the inevitable, but how can you ever truly be prepared for all of it.  My gut tells me in the end it will all work out, but it's going to be a rough ride until that day comes.  I am just so nervous and scared for her.  I am so glad she will never remember any of this, so that in its self is reassuring, but unfortunately we will never forget it!  I do believe someday we will complete this trying and rough road, and turn down a new one were we can watch our little girl lead the beautiful life she oh so deserves.

So with all that said to explain our title for this blog, not only is today Valentine's Day, but we have discovered it is also National Organ Donation Day. Today we will start to celebrate these two holidays that will be apart of our lives, and put on our calendar every year from here on out. One day we will not only be celebrating the love we have for each other, but the special gift someone will give our daughter so she can continue to learn and experience love like we all do!

To our family and friends,  in honor of Valentine's Day, on behalf of Hannah, she would like to thank every one of you who has been so supportive and helpful.  Just by simply reading her blog and commenting on it helps us more than any of you will ever know.  It tells us how much you care about her and are supporting her 100%.  Each of you have played a special role in our journey with her this far, and we love and thank you for all the support!!