Another week has passed and Maddie continues to make remarkable progress. As of today she is completely independent of the C-PAP so the picture above is how we can now see and enjoy her everyday. (In the picture she is wearing what they call a nasal canyula; it provides her with some assistance breathing, just not as much as the C-PAP)
It appears that she is completely recovered from her surgery and judging by her ability to maintain blood saturation without the C-PAP it was successful.
They have begun to get a little more aggressive with physical and occupational therapy as she now has splints for her legs, feet, wrists and hands. She continues to make gradual progress in those areas in the sense that she is not as tight as she was at birth. Doctors have been able to rule out the brain and muscle as the cause of her contractures which leaves either the nerves or the tendons as the source of the contractures with the tendons being the best case scenario. This week there was a team of neurologists at Maddie’s bed side conducting all kinds of tests however they have been unable to determine what the problem is exactly and they informed us that it’s often hard with babies to determine if it is in fact nerves since babies don’t react in the same fashion that an adult would to certain neurological tests. We are keeping our fingers crossed and continue to pray that it is just a tendon issue that can be resolved through therapy.
Yesterday they started feeding her by bottle again, about a ¼ of an ounce at a time and the rest is fed through the tube you see in her nose. This is a huge step in the direction of Maddie coming home, which we are hopeful will happen soon. As I stated before, she needs to be able to maintain her blood saturation level and eat on her own in order to come home.
We once again would like to take the time to thank all of you for your thoughts and prayers as well as the gifts and the dinners you all have sent our way. This past month could have been so much more chaotic and wearing if it weren’t for all of you. Your time spent on us has allowed us to adjust to this crazy schedule but more importantly it has allowed us to maintain a level of attention that both Nathan and Zachary need so as not to get lost through out this process. So again, from the bottom of our hearts, THANK YOU and GOD BLESS you all