Day Thirty Nine and Day Forty

Sorry for not updating yesterday but it was a busy day! Saturday was a stellar day for Daniel. He had all 5 meals here at the hotel and his total volume for the day was 42.3 oz!!! He did great but had me worried a few times. Because of this nasty cold he has he was hacking and coughing during the meals and I thought for sure that he was going to throw up everything that I had fed him. But, he proved me wrong and held it all in. No bad "dumping" or anything and he was as fun loving as can be when you had a bad cold. He only had to be on the pump for 2.7 hours!!



Sunday - Are you ready for this????? Drum Roll please!!! Daniel's total volume at the end of the 5 meals was 46.3 oz!!! He needs to get 50 oz to be able to come off the pump. So, we sat on the couch at the end of the day before bed time and he drank his 3.7 oz. Know what that means???? THIS IS THE FIRST NIGHT THAT DANIEL IS GOING TO BED WITHOUT BEING HOOKED UP TO ANYTHING!!!!!!!!!!! He has always either been hooked up to IV or feeding tube. Tonight he is completely free of all apperatus. My gosh, you don't know how good that feels for me to type that message to you. I can't believe how well he did today and with a cold to boot. I am just so darn proud of him!



Anyway, not to bring you all down on that high note but I wanted to explain that during the week he will need to be back on the pump. I am able to get this high volume into him because I can space the meals further apart than they can at the clinic. They do not have 12 hours to space the meals like I do. We have to do it in about 7 hours and Daniel's meals come about 1 hour and 15 minutes apart. Therefore, they will not be able to get 9 or 10 ounces in him because there isn't enough time in between feeds. So, I don't want you all to be disappointed when I post tomorrow night that he got a volume somewhere in the 20's. We just can't get 50 oz into him on a day we go to clinic. We have another 3 weeks here in Richmond and this next week we will be working on boosting Daniel's calories of his food to full strength and getting him to take bigger drinks (we really need to work on this)! The following week we will work on introducing the soy milk and the last week we are here will just be maintenance. Working on anything that he still might be having trouble with. Then we get to come home and see if all this works. I can tell you that I am very pleased with what Daniel has accomplished so far.



BTW - for those of you wondering from Friday's post whether Daniel had to sit at the table after the meal to finish his drink....the answer is yes, but it didn't work! He will not get the 3.5 to 4 oz that he needs during the meal in because he doesn't take big enough drinks. I did what they told me and he sat and sat and sat until the next meal was scheduled. There was no way that he was going to drink after that timer went off and the meal ended. So, I wasn't sure what to do but I added on what he didn't drink and then sat with him and he drank it. As long as I sat here with him, he would drink so that's what I did. They won't like that at clinic but I didn't know any other way to get it into him.



Well, I gotta go and get all my paperwork done for tomorrow. Take care and thank you so much for all the thoughts and prayers. Please keep them coming!



-Angela-