Update 3.12.08

Riley is continuing to make progress, but not as much progress as the doctors are hoping to see. She has begun physical and occupational therapy - and both are really helping. The doctors are still completely baffled with what is causing all of this, but they are starting to talk about the long term plans for her care. Right now the big topics are a Percutaneous Endoscopic Gastrostomy also known as a "G-tube" (this a soft feeding tube that comes directly out of the abdomen) and a Tracheostomy or "trach tube" (this is a tube that is put into the trachea through the neck that will help her to breath). Riley will be able to eventually come home with both of these in place but to be honest Josh and I are absolutely terrified of our baby girl having to have both of these tubes in her. They are still trying to determine that these are both absolute medical necessities before we discuss them any further but they are fairly certain she will need both.

So . . . the big thing we are praying for now is her spit. I know it sounds crazy but if Riley can start swallowing her secretions (spit and mucus) then we may not have to do the trach tube or the g-tube. The problem is that she is not protecting her air way on her own, her swallowing and gaging reflexes are very weak and because of that her secretions are pooling in the back of her throat and must be suctioned out by the nurses every few hours. With out a proper swallowing or gag reflex the fear is also that she could aspirate milk or other fluids into her lungs and get seriously ill. The g-tube would bypass this all together and go directly into her stomach and the trach tube would insure that her airway is protected. Both are helpful for someone in Riley's condition but we are believing that her condition is only temporary and we are hoping and praying that these will not have to be done on our baby. We are meeting with a panel of her doctors and specialist next week to discuss her case and her long term treatment. . . so it is miracle time! We are hoping for big improvements over the next week so that we can avoid at least the trach tube. Regardless of what happens, we know that God is working things out in His time and Riley is absolutely beautiful, tubes or no tubes, nothing can change that - but please join us in praying that God would continue to strengthen her and allow her to be able to protect her own airway so that this all could be avoided.

Thank you all so much for your love and support!

Love,
Becca, Josh, Ayden, and Riley

PS - I got to give her a bath today for the first time! The nurses have been giving her baths but this is the first time that I got to do it and I was absolutely thrilled to be able to perform this "mommy task" for her! We got some great pictures and I promise to update the photos soon, but only with the more discreet bath photos . . . I don't want Riley to hate me when she is 13 because we showed everyone naked baby pictures of her. =)