We leave for feeding clinic in less than a week and I'm not even a little ready yet. I've been busy working since I've been back from Florida so I haven't had much time to do anything. It took me a few days to get the house back in order and then we had to get prepared for the hurricane that was supposed to hit. We survived the storm with only a little wind and some rain, nothing bad. Now I'm ready to start getting prepared and packed. I have a few lists but nothing actually packed. Trevor is settled, I know where he will be each day of the week so that makes me feel a little better. Now I'm just left to hope that our hotel in NJ still has power, or at least will have power, when we get there.
Sorry for the quick update but I've got things to do!
Family Vacation
Tuesday, October 30, 2012
Tuesday, October 16, 2012
19 Days
I can't believe that in less than 3 weeks we will be at Feeding Clinic.
Nathan and I went on Friday for his pre-admission appointment, it went well. I picked him up early from school and he loved that. It was fire prevention week and he had just spent some time looking at the fire truck and talking to firefighters so he was really chatty the whole way down to clinic. We got there and were seen pretty quickly.
The Dr was happy with the progress he had made since the last time we were there. She didn't like that he's lost some weight but she and I figured out the cause of it and we are working to fix it. We also talked a little bit about what reasonable goals would be for Nathan. It wasn't quite what I was expecting but she did say that by the end of clinic we should be able to turn down his tube feeds at least a little and his oral intake should increase each month after therapy. She said once he learns to eat orally he really juts needs to increase his volume enough to accomocate his caloric needs.
I had a meeting at my house with the Trevor team the other night. I was shocked at how easy it was to coordinate schedules so that Trevor always has a warm place to sleep at night. Since I have no idea what Matt's schedule will be, and if he has time off during the week he should come to clinic to learn how to feed Nathan, we needed to get Trevor taken care of each day I will be gone. It's lovely having a couple retired people who love my boy and are willing to step in for me when I can't be there for him. I know he's going to eat good while I'm gone!
Once we got home from clinic Matt and I took Nathan to school so he could go to the PTA movie night. He had a great time with all his friends. He met up with some of his classmates and they played a game of pretend baseball while they were waiting for the movie to start. Once we all moved into the gym to watch the movie Nathan came and sat with Matt and I, he didn't want to sit over with his friends. He and I layed on the mat together on the floor. The movie was Dolphin Tale - a pretty cute movie. I realized that Nathan might be the only kid alive who knows how to sit still and watch a movie. I think every other child there was yelled at by the principal to be quiet, she always just smiled at Nathan, he's an expert at watching movies.
Now I'm getting ready to go to FL for a March of Dimes conference. It's all about fundraising and how to be better at being a team captain. It's also a great opportunity for me to see all my MOD friends who I only get to see at this conference each year since we live all over the country. I'm excited to go but Nathan is nervous about who is going to be here while I'm gone. He acts like he's never been away from me. Trevor on the other hand has already said goodbye to me, days in advance.
Nathan and I went on Friday for his pre-admission appointment, it went well. I picked him up early from school and he loved that. It was fire prevention week and he had just spent some time looking at the fire truck and talking to firefighters so he was really chatty the whole way down to clinic. We got there and were seen pretty quickly.
The Dr was happy with the progress he had made since the last time we were there. She didn't like that he's lost some weight but she and I figured out the cause of it and we are working to fix it. We also talked a little bit about what reasonable goals would be for Nathan. It wasn't quite what I was expecting but she did say that by the end of clinic we should be able to turn down his tube feeds at least a little and his oral intake should increase each month after therapy. She said once he learns to eat orally he really juts needs to increase his volume enough to accomocate his caloric needs.
I had a meeting at my house with the Trevor team the other night. I was shocked at how easy it was to coordinate schedules so that Trevor always has a warm place to sleep at night. Since I have no idea what Matt's schedule will be, and if he has time off during the week he should come to clinic to learn how to feed Nathan, we needed to get Trevor taken care of each day I will be gone. It's lovely having a couple retired people who love my boy and are willing to step in for me when I can't be there for him. I know he's going to eat good while I'm gone!
Once we got home from clinic Matt and I took Nathan to school so he could go to the PTA movie night. He had a great time with all his friends. He met up with some of his classmates and they played a game of pretend baseball while they were waiting for the movie to start. Once we all moved into the gym to watch the movie Nathan came and sat with Matt and I, he didn't want to sit over with his friends. He and I layed on the mat together on the floor. The movie was Dolphin Tale - a pretty cute movie. I realized that Nathan might be the only kid alive who knows how to sit still and watch a movie. I think every other child there was yelled at by the principal to be quiet, she always just smiled at Nathan, he's an expert at watching movies.
Now I'm getting ready to go to FL for a March of Dimes conference. It's all about fundraising and how to be better at being a team captain. It's also a great opportunity for me to see all my MOD friends who I only get to see at this conference each year since we live all over the country. I'm excited to go but Nathan is nervous about who is going to be here while I'm gone. He acts like he's never been away from me. Trevor on the other hand has already said goodbye to me, days in advance.
Tuesday, October 9, 2012
26 Days...
The more I try to avoid it the closer it's coming, feeding therapy.
I feel like ever since Nathan came home back in April of 2008 I've thought of and imagined the day he would eat by mouth and no longer need his feeding tube. I've dreamed of such a day, I've planned imaginary parties where we serve all *his* favorite foods and celebrated that he doesn't have any medical equipment anymore. But now that it's getting closer I'm getting more and more nervous.
Feeding tube is the only life Nathan has ever known. It's our safety net, it keeps him healthy when he's sick and most oral-fed kids wouldn't want to eat. It's allowed him to be discharged from the hospital a couple days sooner than oral-fed kids would have been. It makes it easier to give him meds that taste gross. He gets a perfectly balanced diet. He gets all his daily vitamins and minerals, all things good he gets. He doesn't eat junk food. He doesn't eat crap. He isn't "picky" he just takes in whatever we provide. All that being said, he hasn't gianed weight in about 2 years. He's gotten taller with no weight gain so he's gotten thinner. I can feel each vertebrae in his spine. I can see his ribs. He needs to gain weight, his GI dictor agrees and that is why we were referred to the feeding clinic; he feels that is the best path to take to get Nathan gaining weight.
I know all of this. I also know that Nathan isn't going to come out of treatment eating 100% by mouth, but I don't know what to expect. I know we aren't going to leave treatment without a feeding tube but the thought does scare me. He gets sick so often, how will we make sure he's eating well when he doesn't have a feeding tube? How will we be sure he's getting all the appropriate nutrition when he doesn't have a feeding tube? I know these are normal problems for typical kids but Nathan has never been typical. He gets pneumonia like typical kids get a cold. He's sick A LOT and I'm worried about that. I guess it all comes down to, I'm scared of the unknown... I don't do well when I'm not in control and since I'm not even allowed into treatment (except at certain times, a couple times a week) I have no control over what happens.
Add to that, Trevor isn't coming. I need to figure out child care for little lubbers for a month, 5 days a week since we'll be home on weekends. Amazing family and friends who are family have offered to help have been a godsend and taken away some of my fears. I'm still nervous to be away from him for so long each week. I feel bad that family has to take care of him since I'll be with Nathan. I hate that for these 30 days I can only care for one of my children at a time, not both.
I just want a crystal ball to tell me what is going to happen... anyone have one I can borrow?
I feel like ever since Nathan came home back in April of 2008 I've thought of and imagined the day he would eat by mouth and no longer need his feeding tube. I've dreamed of such a day, I've planned imaginary parties where we serve all *his* favorite foods and celebrated that he doesn't have any medical equipment anymore. But now that it's getting closer I'm getting more and more nervous.
Feeding tube is the only life Nathan has ever known. It's our safety net, it keeps him healthy when he's sick and most oral-fed kids wouldn't want to eat. It's allowed him to be discharged from the hospital a couple days sooner than oral-fed kids would have been. It makes it easier to give him meds that taste gross. He gets a perfectly balanced diet. He gets all his daily vitamins and minerals, all things good he gets. He doesn't eat junk food. He doesn't eat crap. He isn't "picky" he just takes in whatever we provide. All that being said, he hasn't gianed weight in about 2 years. He's gotten taller with no weight gain so he's gotten thinner. I can feel each vertebrae in his spine. I can see his ribs. He needs to gain weight, his GI dictor agrees and that is why we were referred to the feeding clinic; he feels that is the best path to take to get Nathan gaining weight.
I know all of this. I also know that Nathan isn't going to come out of treatment eating 100% by mouth, but I don't know what to expect. I know we aren't going to leave treatment without a feeding tube but the thought does scare me. He gets sick so often, how will we make sure he's eating well when he doesn't have a feeding tube? How will we be sure he's getting all the appropriate nutrition when he doesn't have a feeding tube? I know these are normal problems for typical kids but Nathan has never been typical. He gets pneumonia like typical kids get a cold. He's sick A LOT and I'm worried about that. I guess it all comes down to, I'm scared of the unknown... I don't do well when I'm not in control and since I'm not even allowed into treatment (except at certain times, a couple times a week) I have no control over what happens.
Add to that, Trevor isn't coming. I need to figure out child care for little lubbers for a month, 5 days a week since we'll be home on weekends. Amazing family and friends who are family have offered to help have been a godsend and taken away some of my fears. I'm still nervous to be away from him for so long each week. I feel bad that family has to take care of him since I'll be with Nathan. I hate that for these 30 days I can only care for one of my children at a time, not both.
I just want a crystal ball to tell me what is going to happen... anyone have one I can borrow?
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