Our appointment today went as well as I could have expected. The team thinks Tatum has made a huge improvement since the last time we saw them all but still doesn't seem to be getting enough calories. She is taking in what seems to be a lot of food but she is also drinking a lot of ice water during the day. They want us to take the ice water away and only let her have high calorie drinks. She will take peidasure once in a while but nothing like what they want. We have tried instant breakfast and she doesn't do well with that either. There is a juice out there that is called resource breeze and it contains 250 calories per 8oz. box. They also recommended trying resource kids essentials which also comes in a little carton. Ideally they want her to drink three of these a day before we allow her any water. Sounds simple right? The bad thing is that she loves ice water and will ask for it over juice sometimes in the mornings but since she gets miralax daily we put it in her juice. Therefore she must drink her juice in the mornings and doesn't get down from the table until she does drink it. They gave us some samples today of both the juice and the other milky drink and she loved the peach breeze so far and we will try the berry flavor tonight. We will keep our fingers crossed that she will also like it. As far as Tatum's weight and where it should be she is in the 2 percentile right now and that is down from where she was last time we went in. The pattern on the chart seems to go up and down as it has since she was about 4 months old. After talking to the gastrointestinal doctor he thinks after a couple months and if she continues to go up and down on the charts she should get a more permanent feeding tube. From what I understand it would go directly into her stomach. This type of feeding tube would allow her to not have to have the tube in her nose and run across her face like the one before. We definitely hope that she will continue to eat well and will drink the high calorie drinks so she can stay on an upward path with her weight. I never want her to have to have the tube feedings again but if it is needed we would much rather the port in her stomach than the tube in her nose. Especially if she will need it for some time. If Tatum can stay well and out of the hospital I don't think there should be any problem with her gaining weight. The last two hospitalizations were a major set back for her and her weight. We will continue to call into the clinic every two weeks with her weight so they can track it as well. The psychologist also expects we will have some behavior issues when we don't allow the ice water anymore as the main source of her liquid intake. He has been so much help to us with Tatum's feeding issues and has always been available to give suggestions over the phone when certain issues come up. We are so thankful for that. Without him our mealtimes would still be a total nightmare. Overall I think the appointment went well and now we will just be working very hard to get as many calories in Tatum as possible. It is so hard to think someone can't take in enough calories to even maintain their weight when I have always worried about my weight and can't seem to cut out enough calories to lose any weight!
We hope everyone is enjoying the spring weather! I know we are. Now we are off to Scott's softball game.
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