Well the first day and night in the hospital were filled with many ups and downs. We started the day at 5:15am with a very excited Noah. He was excited to go to the hospital (and watch TV) and excited to start the brain food diet to see if the seizures will go away. There was continued excitement upon arrival at the hospital as Noah saw a Transformers pillow on the bed and Jon saw a bed by the window that was more than a foot wide. "Maybe we will sleep good this week!"
From there, the day began to get more difficult. Noah started his first 2:1 brain food shake with mixed success (2:1 refers to the amount of Fat: Carbs+Protein, the ultimate goal is to get to 4:1 by the time we leave the hospital). Noah downed all 6 ounces pretty quick, even though he didn't like it and we were off. "Maybe this diet won't be so bad."
A couple of hours later, it was time for another shake. This time, Noah wouldn't even put the straw in his mouth. Two hours, much frustration and many tears later, we decided to scrap the shake idea and try Jello mixed with whipped heavy whipping cream. This too, took some convincing but after half an hour, he finally took a few bites. He continued eating well until his last bite, at which point his sensitive "gag-reflex" kicked in and he threw it all up. We were frustrated he had eaten it, but it didn't matter, it had all come back up. "At least he finished the meal."
Evening approached and it was time for the last meal of the day. This time, all Noah had to have was 2/3 of a cup of heavy whipping cream (with really good raspberry flavoring in it). Once again, Noah's stubborness kicked in and he refused to try the drink. We tried toy rewards, positive encouragment, threatening consequences, video games, three hours of reasoning through it and every other trick we could dream up and he still wouldn't drink. We were locked in the biggest battle of wills that we had experienced as parents. Noah was 10 sips away from the biggest party and celebration that he had ever experienced and still nothing. We were at our wits end, totally worn out and the tears and frustration were flowing. Finally, a sip, he did it! Just a few more sips and he would be done. He drank more. Then, as he took his last sip, his gag reflex kicked in and once again, it all came back up. Utter frustration. Noah had finished it, but it was all for naught. 'This day is awful."
An hour later Noah was asleep for the night. It was a crazy day, everything that could go wrong had gone wrong, but the day was done. "Maybe, tomorrow will be better."
We have learned lots from this journey. After the first day and night in the hospital, we are again realizing that though this journey is incredibly hard, we are incredibly blessed. Above and beyond all of the practical blessings of friends, doctors, great healthcare, medicine, treatments and family we have an eternal hope in God. His graciousness is amazing. The fact that Jesus chose to come down and choose suffering for us, is mind boggling. We have a hard time simply accepting the little suffering we are in, and yet Jesus, not only accepted it, he chose it. He didn't have to suffer, but he chose to. We are hopeful (and still very tired) as we start day 2.
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