Now that I have had a little time to process the news, I am ready to pick up the pieces and move forward. My dad, Drake and Kennedy's Poppy, has given us what we believe to be the best advice..."Treat the patient, not the diagnosis." As we already know, Drake does not tend to follow what science tells us. He is currently doing things that science says he should not be able to do. In time, Drake and only Drake will let us know what he is capable of doing. We will be there to provide him with the proper support every step of the way. He is surrounded by friends, family and strangers who all believe in him and continue to pray daily.
Drake's swallow test was a success this morning and he has been cleared for infant driven feeding like Kennedy. This means...every 3 hours if he is awake and cuing, he is offered a bottle. Drake loves to eat and has attempted every bottle offered today. He doesn't have the endurance yet to complete them, but that will come in time. The hardest part for me this morning was that he was not allowed to have his 8:30am feed due to the swallow study at 10am. For a little boy who wakes up ready to eat every 3 hours, it broke my heart that he wasn't allowed any milk. I held him, rocked him, and sang to him as he sucked on his paci and looked deep into my eyes.
Little Miss Kennedy is doing well and continues to work on her feedings. When she is interested, she does great with her bottle, but if she isn't in the mood, she doesn't want anything to do with it. Tomorrow is a big day for her...neuro sonogram. Everything was perfect the last time she had a brain scan, but that was true for Drake as well. As you may imagine, we are a little nervous.
I have decided to meet with a neurologist tomorrow to discuss Drake and his MRI. Even though I was initially against this, I have had time to process and I am now willing to listen to what they have to say.
Pictures:
1) Kennedy
2) Family photo
3) Kennedy
4) Drake
5) Drake
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