The joy that my two boys bring into my life, help me to face each day with strength and courage.
The time seems to be passing slowly as we are still waiting to hear a final schedule date for Emmett to be evaluated in Cincinnati, OH. I have come to understand that many (not all) individual's who work in the administrative medical field have not the slightest idea what it is like to care for a critically ill child. Time is of the essences. So I take a deep breath and continue to working on my patience skills. :)
Emmett has started on a new medication to help prevent the retching, which seem's to be helping a little bit. He used to receive his nutrition on an hourly basis. His meal time consisted of me pouring formula into a large syringe (bolus feeding) and wait for gravity to fill his belly through his G-tube. For about 7 week's now Emmett has been placed on a continuous feeding regimen instead of the hourly bolus. His little body has not been able to digest the formula correctly causing him to "dump". We believe the issue is a result of the surgery performed last year, a portion of Emmett's stomach was taken and needed to try and reconstruct a portion of the esophagus that had been damaged due to the battery ingestion. Slowing the input of his food allows his body to digest the nutrients appropriately.
Again, patience is virtue I am learning:)
The image above is the pump that Emmett uses. It is small and weigh's about 5lbs. Emmett carries it around all day and night in a little back pack that we strap on to his sweet little back.
Ethan is a good little helper bug too. He makes sure that Emmett doesn't step on his feeding tube cord and encourages him to keep his backpack on by putting on his own backpack and wear it around the house for hours. Hooray for big brother Ethan. I love Ethan and Emmett's sweet relationship.
Tonight as I was putting the boys down for the night, Ethan, Emmett and I were laying on Ethan's bed surrounded by a zoo of stuffed animals. The boys giggled, wrestled and rolled a round while I was reading them a book. After several attempts of trying to read the first page of the book, I decided to give up and just enjoy the beautiful sounds of their adorable laughter. So perfect, pure joy!