Update on Maura Rohama - Our 1st real weekend home

I know I have been a baaaaaaaaaaad blogger, sorry but time has been limited and we only have dial-up internet at home so it is takes forever to post!  I can't wait to be able to post about the traditional dinner because I have video that is hilarious as some of our travel group danced and joined-in the festivities - stay tuned for video of Meg Sabini and Randall Goodgame!!!!!

I am excited to post that Maura Rohama is home from the hospital!  She came home this past Sunday afternoon.  She takes 8 different types of medicine 6 times a day, so I feel like I am washing syringes all day long but if that's what it takes to make our baby better, then I will gladly do it!  Her final diagnosis is cardiomyopathy.  We went to the cardiologist's office this past Thursday and are excited to announce that she is showing signs of improvement!  At the hospital, her heart rate fluctuated between 170 and 220 but it is now staying right around 124, which is still higher than normal but much better than last week!  Also, the cardiologist stated that her heart muscle seems to be working better when both relaxing and compressing.  We were told that her heart still appears substantially damaged but it is promising to know that the medicine is working after only 1 1/2 weeks.  Also, we found out that an enzyme problem was detected in her urine sample, therefore another sample was taken for comparison.  Dr. D, the cardiologist, stated that if the same conditon exists in this sample, then it is very likely that we have found the reason for the cardiomyopathy.  If this is the case, then we will add another specialist to our family of physicians and hopefully we can get this under control and prevent further damage. 

We are very fortunate in this because while she was in Vanderbilt, we were told that we would likely never know the cause and that this could be good because of so much unknown in Maura's genetic background, we could have found-out a cause that would lead to brain damage and organ failure which would cause great stress and concern on our family...we were told to just enjoy each moment together as there is no promise of what may come in the future.  Obviously, we are concerned, but we are trusting God and are so thankful for the good report that we received this past Thursday.  I will be SO HAPPY when Dr. D looks at us and says that we are finally over the hump when a heart transplant is likely!  That is still a very real possibility for Maura but if that's the road that we have to travel, we will do so and continue trusting that God will care for her - she is His first and foremost.

It took us forever to get out of the hospital on Sunday because everyone - and I do mean everyone - that had anything to do with Maura had to come say goodbye.  She even had her room cleaned first that morning so the staff person could be sure to tell her bye before discharge.  The staff at Vanderbilt has been wonderful to our family!  I am so thankful that we went through their adoption clinic and that God used them to save Maura's life.  God's timing is just so wonderful as we were told that she would not have survived very much longer in ET because of the amount of fluid around her heart and in her lungs.  When I very first held her that day in ET, I exclaimed that she was our miracle baby but little did I know just how true that statement would become.  I am SO thankful for this child that God has blessed us with!

It is so good to see her sleeping in her bed!

Maura contines to be a happy, jovial little baby girl.  Her legs were like rubber when we first got her but they are getting stronger each day.  She is clapping and waving and is fascinated with chewing on her fingers and toes.  She loves to swing and play in her exersaucer.  We think she is about to cut teeth because she is a drool monster and loves to chew on anything she can get into her mouth. 

Ashton and Maura Rohama just love each other!  As soon as she hears his voice, she starts babbling and looking all around for him.  When we say, "Kiss, Maura Rohama", she opens up her little mouth and leans forward to place her lips on your face or arm or wherever she can reach - this just cracks Ashton up and he says it over and over and over again.  He's so captivated by her.  When he gets home in the afternoon, she is usually just finishing-up her afternoon nap and he gets so upset that he can't go kiss her right away.  He also doesn't like to share her.  This past week, my sister-in-law Denise and her 5 year old daughter visited briefly and he got very upset and said that the only ones who could hold her are us because we need to bond - he's heard a little too much adoption talk I would say (both from us and from the docs at Vandy).  It blesses my heart so much to see them interact together!  We have waited so long for this precious baby to join our family that we just can't stop kissing on her.  I see how Ash is with her and I just hug and kiss on him all the time too and he starts saying gross and wiping away the "love."  We are so blessed!

We just can't wait for everyone to meet her!  I asked Dr. D about taking her out and she said that now is a dangerous time of year due to flu, viruses, and colds but that we cannot keep her in a bubble.  She said we could have visitors but they cannot have even a sniffle or runny nose and they cannot have recently been around anyone with any symptoms of sickness.  She said to use our judgment but to be very, very careful as she is in a fragile medical state right now.  Also, she said that if we went to church then we must slip-in after the service has started and then slip-out right before it ends so no one will be in her face or asking to hold or love on her.  Dr. D knows all about our journey and as she said on Thursday, so many people have been praying for Maura Rohama that they feel as if they have a vested interest in her, so it will be very difficult for people not to want to ooh and ah over her.  So, if you do see us at church please don't think we are being rude for not allowing physical contact or too much interaction in her face as we want so badly to be together as a family in church but we have to keep Maura Rohama safe.  Until at least January, we will probably alternate attending so we can go and take Ash too.  Hopefully God will continue to heal her body and it won't be too much longer and folks can love on her with us!

Now, many people are asking what we are calling her.  We are calling her Maura Rohama.  She does not respond to Maura at all but she responds very rapidly to Rohama.  I don't know how long we will run the names together but right now, it's working well.  Just hearing "Rohama", she breaks out into a smile and our hearts melt - we will never take that away from her!

This is our first real weekend home as a family, so we put-up our Christmas tree.  Ashton was such a big helper and we had so much fun making memories together!  He laughed, giggled, and just squealed with delight as the tree came together with decorations...it just blessed my heart.  Maura Rohama slept through it all but I'm sure she'll be right in the middle of it all in just a few more years. 

Well, Christmas cards aren't going to be sent-out this year as we simply haven't had time to make pictures and get them developed and addressed....I'm so sorry!  Our hope is that you will enjoy the holidays and have a Merry Christmas!  Our God is so good!