As of Monday Nathan weighed 31 and a quarter pounds, he started at 29 pounds. That means he had gained a little over 2 pounds since we've been here. His g-tube feeds haven't really been turned down but that is in a effort to get him to gain some weight.
As of right now he's eating 4ounces of puree table food (only when he's at clinic, when he's at home I do 4.5ounces) found times a day and drinking 2 ounces of pediasure found times a day. That's a grand total of 16 ounces (or 18ounces when he's home) of food and 8 ounces of pediasure each day.
Yesterday he started learning how to feed himself. We made that one of his goals so that when he goes to Kindergarten he will be able to participate in snack and eat with the other kids. The first time he fed himself it took him nearly half an hour to eat all 3.5 ounces then the second time he fed himself he ate it in 12 minutes. It was amazing to see him eat so naturally, as if he's been doing it his whole life.
He also started trying to eat mashed food. Erica, his feeder, will put the spoon into his mouth on top of his tongue and then move the spoon into his cheek and deposit the food there. He isn't doing great with mashed, he's not learning how to use his tongue to move food and is pocketing it under his tongue. He leaves it there for a while and then swallows the food without chewing. He still has a long way to go with chewing but at least he's moving in the right direction. Later today he gets another weight check, hopefully it's good.
Family Vacation
Wednesday, November 28, 2012
Tuesday, November 20, 2012
Halfway
As I write this we are getting ready to go into Nathan's 13th day of feeding clinic, he's halfway done - more than halfway really. He only has tomorrow and then all of next week, 6 treatment days. That will be true as long as he is meeting his goals (he is) and doesn't have his stay extended for any reason.
Nathan is eating 4ozs of puree table food at each of his 4 meals. He eats three different foods at each meal. He also drinks 1.5ozs of Strawberry Pediasure at each meal and then again at night. He's gained 1lb. total since he's first started. We also turned down his overnight g-tube feeds but that was only by a little bit and it was in an attempt to better control his reflux (it failed).
Tomorrow when we go to clinic I will feed him 3 meals and then we will leave for the day. We want to get on the road early since Thursday is Thanksgiving and we have Prep Party Wednesday tomorrow. We don't want to miss a second of family festivities so we wanted to make sure we got to my parents house in pleanty of time.
I talked to Matt tonight and he told me that Trevor is sick of bouncing between houses. He is home for the weekend now and when they pulled into the driveway he said "home, yayyyy" and was super happy to curl up in his own bed tonight. Tomorrow night he will be at my parents house but he'll love having a sleepover with Nathan!
The boys miss each other. I miss my two boys at home. I miss my bed. The novelty of staying in a hotel has worn off for all of us. The novelty of sleepovers has worn out for Trevor. I'm hopeful that we only have one more week left. I don't think any of us can take more than one more week.
Nathan is eating 4ozs of puree table food at each of his 4 meals. He eats three different foods at each meal. He also drinks 1.5ozs of Strawberry Pediasure at each meal and then again at night. He's gained 1lb. total since he's first started. We also turned down his overnight g-tube feeds but that was only by a little bit and it was in an attempt to better control his reflux (it failed).
Tomorrow when we go to clinic I will feed him 3 meals and then we will leave for the day. We want to get on the road early since Thursday is Thanksgiving and we have Prep Party Wednesday tomorrow. We don't want to miss a second of family festivities so we wanted to make sure we got to my parents house in pleanty of time.
I talked to Matt tonight and he told me that Trevor is sick of bouncing between houses. He is home for the weekend now and when they pulled into the driveway he said "home, yayyyy" and was super happy to curl up in his own bed tonight. Tomorrow night he will be at my parents house but he'll love having a sleepover with Nathan!
The boys miss each other. I miss my two boys at home. I miss my bed. The novelty of staying in a hotel has worn off for all of us. The novelty of sleepovers has worn out for Trevor. I'm hopeful that we only have one more week left. I don't think any of us can take more than one more week.
Wednesday, November 14, 2012
Small Setbacks
Yesterday was Nathan's 5th Birthday. It's hard for me to believe that he's already 5 years old. It seems like just yesterday he was 4 - lol, I crack myself up.
He got sick yesterday so it wasn't his best day. He was sent home early from clinic since he was having some trouble breathing. The NP here wrote him prescriptions for steroids, an antibiotic and a different nebulizer med. He rested for the rest of the day with Grandma and PopPop and seemed a little bit better by bedtime. Last night he slept more inclined than usual and today he got a new prescription for another antacid. The Dr said that she wasn't suprised that he needed a different antacid since his eating habbit has changed so drastically. We will start the new antacid tonight, so we'll see how he does overnight. The Dr was very happy with how much better he sounds today and how much better he is breathing today. He is much more himself and happy. He is talking up a storm to Erica, his feeder, so I know he's almost back to normal.
The one night of illness did send him for a small setback. He lost half a pound since Monday, which puts him back at 29 and 3/4 pounds, but he's still up from where he started so that's good. Today Grandma and PopPop are learning how to feed him so he's sticking to "old" foods so they have an easier time learning to feed him. Tomorrow he will be introduced to new foods, eggs.
My goal is to allow him to eat mashed potatoes and gravy on Thanksgiving, we'll have to wait and see if that happens. In other Thanksgiving news there is an article in todays Troy Record about Nathan.
http://troyrecord.com/articles/2012/11/14/sports/doc50a2df734b3e2372959717.txt
I think that is the link to the article. You will have to scroll the page down a little to get to the "ext generation" article about Nathan. He think's he's famous!
He got sick yesterday so it wasn't his best day. He was sent home early from clinic since he was having some trouble breathing. The NP here wrote him prescriptions for steroids, an antibiotic and a different nebulizer med. He rested for the rest of the day with Grandma and PopPop and seemed a little bit better by bedtime. Last night he slept more inclined than usual and today he got a new prescription for another antacid. The Dr said that she wasn't suprised that he needed a different antacid since his eating habbit has changed so drastically. We will start the new antacid tonight, so we'll see how he does overnight. The Dr was very happy with how much better he sounds today and how much better he is breathing today. He is much more himself and happy. He is talking up a storm to Erica, his feeder, so I know he's almost back to normal.
The one night of illness did send him for a small setback. He lost half a pound since Monday, which puts him back at 29 and 3/4 pounds, but he's still up from where he started so that's good. Today Grandma and PopPop are learning how to feed him so he's sticking to "old" foods so they have an easier time learning to feed him. Tomorrow he will be introduced to new foods, eggs.
My goal is to allow him to eat mashed potatoes and gravy on Thanksgiving, we'll have to wait and see if that happens. In other Thanksgiving news there is an article in todays Troy Record about Nathan.
http://troyrecord.com/articles/2012/11/14/sports/doc50a2df734b3e2372959717.txt
I think that is the link to the article. You will have to scroll the page down a little to get to the "ext generation" article about Nathan. He think's he's famous!
Monday, November 12, 2012
Day 6
Well today is the first day of the second week. He is doing remarkably well, it's amazing. Over the weekend he ate his 4ozs at each meal and didn't fight at all about them. He did gag a lot with each meal but that was more because I was having trouble figuring out how much to put on the spoon and was giving him way to much to eat with each bite in the beginning. Then I was doing too little, it was a disaster on my end.
We also had his 5th birthday party, a pirate party. He loved it and had a great time with all his friends. Many thanks to my wonderful sister who did most of the work for the party. She did most of the party planning and organization because I was out of town - she made the gift bags, ordered the cake, set up the decorations and so on. She also made some wonderful food! Both mom's also helped out with food for the party, I think I was supposed to be getting a hint about my cooking ;) The party was great and all the kids had a great time participating in a pirate treasure hunt complete with burried treasure at the end. It really was buried, under the stuffed animals!
Sunday we were interviewed by a sports reported for the Times Union. It's for an article that will run on Thursday featuring Nathan about his running the Turkey Trot this year, his first year participating in the grade school mile. He was excited to talk to the reported and insisted on telling her all about his day at Kindergarten. I also told her all about his medical history and what the turkey trot means to us. Hopefully it will be a good article. I also emailed her a few pictures of Nathan, thankfully grandpa snuck the pictures that he had taken at the birthday party onto my laptop so I could include one of his party.
I also just found out that Nathan gained 1.25lbs since last Monday! That is amazing, I am so happy with that. He was underweight to begin with so we aren't turning his feeds down just yet, we want him to get to a healthier weight before we turn them down but this is a great start!
We also had his 5th birthday party, a pirate party. He loved it and had a great time with all his friends. Many thanks to my wonderful sister who did most of the work for the party. She did most of the party planning and organization because I was out of town - she made the gift bags, ordered the cake, set up the decorations and so on. She also made some wonderful food! Both mom's also helped out with food for the party, I think I was supposed to be getting a hint about my cooking ;) The party was great and all the kids had a great time participating in a pirate treasure hunt complete with burried treasure at the end. It really was buried, under the stuffed animals!
Sunday we were interviewed by a sports reported for the Times Union. It's for an article that will run on Thursday featuring Nathan about his running the Turkey Trot this year, his first year participating in the grade school mile. He was excited to talk to the reported and insisted on telling her all about his day at Kindergarten. I also told her all about his medical history and what the turkey trot means to us. Hopefully it will be a good article. I also emailed her a few pictures of Nathan, thankfully grandpa snuck the pictures that he had taken at the birthday party onto my laptop so I could include one of his party.
I also just found out that Nathan gained 1.25lbs since last Monday! That is amazing, I am so happy with that. He was underweight to begin with so we aren't turning his feeds down just yet, we want him to get to a healthier weight before we turn them down but this is a great start!
Tuesday, November 6, 2012
We're Here
Nathan started at feeding clinic yesterday. He was really upset when I left him in the playroom, he wanted to know why I wasn't staying with him all day. He was worried about where I was going to be all day, he was upset that I wasn't going to be right with him. His first meal with his feeder wasn't great, he had to eat 10 bites each of water, yogurt and pureed banana. The water was no problem, the yogurt went OK but the banana made him fall apart. He didn't want to eat, he didn't even want to hear the word banana. He flat out refused one bite and threw-up another one. So he only got 8 bites of banana and of those bites he seriously gagged on each of them. I asked the Dr if that was normal and she said it was if the child was trying not to swallow it, she didn't seem worried.
His second meal went mostly the same way. He was fed the same three things and same amount as the first meal. He didn't throw up at all with this meal and he didn't refuse any bites so that was an improvement. There was the same amount of gagging. The third meal at clinic went a little better than the first two meals. There seemed to be less gagging than there had been before and he cried less. But it was the end of the day and he was exhausted, so he was ready to be done.
I had to feed him at the hotel, but first I had promised him swimming in the hotel pool. So we got back to the hotel and went swimming for a little while. Swimming is his reward for participating in therapy all day. The therapy is exhausting for him, between his 4 meals (yesterday there was only 3) and all his other therapies he was tired. So by 6pm he was asking when it was going to be time for bed! So he went to bed early last night.
Today has been a little better. We set our goals with the team this morning. His main goal is to eat 3ozs at each of his 4 meals per day. Another goal is to take 1-2ozs of pediasure or milk per day. Those two things would allow us to decrease his tube feeds by 25% - a great goal! Only time will tell but for now, we're happy.
In other news it's like a third world country down here in NJ. The lines for gas are unreal and I'm not sure which day I'm supposed to be allowed to get gas. It's an odd-even thing and I'm pretty sure that today is my gas day but I'm still at 1/2 tank and I'm not sitting in line for an hour for 1/2 tank of gas. Hopefully my 1/2 tank will last until I'm in NY on Friday so I'm allowed to get gas on my way home!
His second meal went mostly the same way. He was fed the same three things and same amount as the first meal. He didn't throw up at all with this meal and he didn't refuse any bites so that was an improvement. There was the same amount of gagging. The third meal at clinic went a little better than the first two meals. There seemed to be less gagging than there had been before and he cried less. But it was the end of the day and he was exhausted, so he was ready to be done.
I had to feed him at the hotel, but first I had promised him swimming in the hotel pool. So we got back to the hotel and went swimming for a little while. Swimming is his reward for participating in therapy all day. The therapy is exhausting for him, between his 4 meals (yesterday there was only 3) and all his other therapies he was tired. So by 6pm he was asking when it was going to be time for bed! So he went to bed early last night.
Today has been a little better. We set our goals with the team this morning. His main goal is to eat 3ozs at each of his 4 meals per day. Another goal is to take 1-2ozs of pediasure or milk per day. Those two things would allow us to decrease his tube feeds by 25% - a great goal! Only time will tell but for now, we're happy.
In other news it's like a third world country down here in NJ. The lines for gas are unreal and I'm not sure which day I'm supposed to be allowed to get gas. It's an odd-even thing and I'm pretty sure that today is my gas day but I'm still at 1/2 tank and I'm not sitting in line for an hour for 1/2 tank of gas. Hopefully my 1/2 tank will last until I'm in NY on Friday so I'm allowed to get gas on my way home!
Tuesday, October 30, 2012
Less than a week
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!
Sorry for the quick update but I've got things to do!
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?
Tuesday, September 18, 2012
The Countdown Begins
I guess it's time to dust off the blog and begin again.
I'm sure you're all well aware of Nathan's feeding problems. We've worked with him for almost3 full years with feeding therapy to get him to eat by mouth rather than just his feeding tube. It's worked, sort of. He will eat very few things in extremley limited quantities. There is no variety to what he will eat and if he's in anything other than a great mood forget it, he won't be eating that day. Matt and I knew it was time to get more serious about his eating.
In August we made a trip to St.Joseph's Pediatric Feeding & Swallowing Center, we were referred there by Nathan's GI doctor. The other problem is that Nathan hasn't gained any weight in almost 2 years. His GI saw that as the final straw. Instead of putting him on meds to help him gain weight he wanted to try to increase his PO (by mouth) intake. We were told to expect to be at the feeding center for about 3 hours and they weren't kidding! We met with tons of people with all different specialities; speech therapy, occupational therapy, physical therapy, nutritionist and doctor. The whole team works together and makes recommendations based on your child's individual needs - I expected to get a report in 6 weeks that said "no hope" nothing like being positive right?!
The day we met with them they were all very confident that they could help Nathan learn to eat PO. They said it would take a lot of work though, and it will be a slow process. Matt and I were open to anything, we just want him to learn to eat. Then they told us their recommendation is day treatment, we move to NJ where the feeding clinic is and go to treatment 9a-4p monday - friday for a month. I guess they weren't kidding about intensive therapy! It's also an extremley expensive program and they require pre-approval for kids going, we had to wait to hear what they would say.
I called yesterday to see how things are going, they had just gotten all the approvals necessary. We only have to pay a portion of what it actually costs, still expensive for us though, and insurance will cover the rest. We have to be in NJ on November 5, it's a Monday. That will be Day 1 of 20. Nathan and I will be moving down to NJ for a month, hopefully coming home on weekends to see Matt and Trevor.
We are all excited at the prospect of Nathan eating by mouth, we just don't know what to expect. The feeding clinic has an 89% success rate of kids meeting their goal by the end of treatment, we have no idea what Nathan's goal will be. When we go there we have a meeting the first day or two to set a goal we all agree on. The worst part is that for the first three weeks he is there I don't get to go, I just have to sit and wait for him to be done. They don't involve parents in treatment until the last week, and then it's only so the parent can learn how to properly feed their child.
So 48 days from today Nathan and I will be in NJ. Matt will be working and Trevor will be roaming the streets fighting the stray dogs for food. I kid, hopefully someone will be able to watch Trevor while we're gone, we're still working out the details! I promise to keep you all updated a little bit better on how the boys are doing!
I'm sure you're all well aware of Nathan's feeding problems. We've worked with him for almost3 full years with feeding therapy to get him to eat by mouth rather than just his feeding tube. It's worked, sort of. He will eat very few things in extremley limited quantities. There is no variety to what he will eat and if he's in anything other than a great mood forget it, he won't be eating that day. Matt and I knew it was time to get more serious about his eating.
In August we made a trip to St.Joseph's Pediatric Feeding & Swallowing Center, we were referred there by Nathan's GI doctor. The other problem is that Nathan hasn't gained any weight in almost 2 years. His GI saw that as the final straw. Instead of putting him on meds to help him gain weight he wanted to try to increase his PO (by mouth) intake. We were told to expect to be at the feeding center for about 3 hours and they weren't kidding! We met with tons of people with all different specialities; speech therapy, occupational therapy, physical therapy, nutritionist and doctor. The whole team works together and makes recommendations based on your child's individual needs - I expected to get a report in 6 weeks that said "no hope" nothing like being positive right?!
The day we met with them they were all very confident that they could help Nathan learn to eat PO. They said it would take a lot of work though, and it will be a slow process. Matt and I were open to anything, we just want him to learn to eat. Then they told us their recommendation is day treatment, we move to NJ where the feeding clinic is and go to treatment 9a-4p monday - friday for a month. I guess they weren't kidding about intensive therapy! It's also an extremley expensive program and they require pre-approval for kids going, we had to wait to hear what they would say.
I called yesterday to see how things are going, they had just gotten all the approvals necessary. We only have to pay a portion of what it actually costs, still expensive for us though, and insurance will cover the rest. We have to be in NJ on November 5, it's a Monday. That will be Day 1 of 20. Nathan and I will be moving down to NJ for a month, hopefully coming home on weekends to see Matt and Trevor.
We are all excited at the prospect of Nathan eating by mouth, we just don't know what to expect. The feeding clinic has an 89% success rate of kids meeting their goal by the end of treatment, we have no idea what Nathan's goal will be. When we go there we have a meeting the first day or two to set a goal we all agree on. The worst part is that for the first three weeks he is there I don't get to go, I just have to sit and wait for him to be done. They don't involve parents in treatment until the last week, and then it's only so the parent can learn how to properly feed their child.
So 48 days from today Nathan and I will be in NJ. Matt will be working and Trevor will be roaming the streets fighting the stray dogs for food. I kid, hopefully someone will be able to watch Trevor while we're gone, we're still working out the details! I promise to keep you all updated a little bit better on how the boys are doing!
Sunday, May 13, 2012
Bullying
It's been an awful weekend. It all started on Friday...
For a long time Nathan has had increasing anxiety about getting on the bus in the morning. I thought he just really enjoyed watching TV in the morning and didn't want to go to school. I always thought it was a little odd since I know he loves school and used to like the bus but he's 4 and prone to frequent changes of his mind. He got a new bus and driver in either late January or early February, I can't remember which.
I have been talking to him more and more about why he doesn't like to go to school and getting on the bus. Well, Friday morning he finally told me - he's being bullyed on the bus and it isn't just verbal, it's physical. It took every ounce I had not to cry while he was telling me that this other little jerk (who is also 4, so his behavior is more a reflection of his home life than anything else) hits/kicks/yells at him on the bus. So when the bus got there I went out and put Nathan in, then let the door close (it's a minivan, not a real bus and they both sit in car seats). Then I talked to his driver.
I told her that I wasn't sure if she was a aware but that Jerk (what I will call him from now on) has been bullying Nathan and it's both verbal and physical. Do you know what she said.... "Yeah, I know, it's really bad" then she told me "I try to talk to Jerk so that he will leave Nathan alone but it doesn't work" ARE YOU KIDDING ME????? She has known about the bullying and has done NOTHING about it, she even still let them sit side by side on the bus. She didn't tell her supervisor, she didn't tell me, she did NOTHING.
Now, for a while Nathan has had unexplained bruises on his legs. He always has a bruise that I never knew where it was coming from. I just assumed that he was getting them from physical therapy and the therapists just weren't telling me when he falls (unlikely but it could happen). Now I know that he's getting them from Jerk kicking him on the bus.
So I pulled Nathan off the bus, screamed at Jerk for his behavior and went back inside. I called the bus company and you know what their response was... they hung up on me. They told me, once they had spoken with the driver, that the driver said nothing was happening and there were no problems. I told them that wasn't true and she admitted it to me, then I was hung up on. We repeated this until I had been hung up on three times.
So now I have no choice, I have no way to safely get Nathan to school, I had to pull him out of his preschool program. I called the school district and the special ed coordinator there was upset but there really isn't much she can do, or is willing to do. She called the county and they said that because this isn't an ongoing problem they don't need to do anything except put the two boys into seperate seats from now on. My real problem is that the driver knew it was more than just verbal and did NOTHING about it...
For now Nathan is simply not going to school. I have a meeting at the school on Monday, we'll see what happens.
For a long time Nathan has had increasing anxiety about getting on the bus in the morning. I thought he just really enjoyed watching TV in the morning and didn't want to go to school. I always thought it was a little odd since I know he loves school and used to like the bus but he's 4 and prone to frequent changes of his mind. He got a new bus and driver in either late January or early February, I can't remember which.
I have been talking to him more and more about why he doesn't like to go to school and getting on the bus. Well, Friday morning he finally told me - he's being bullyed on the bus and it isn't just verbal, it's physical. It took every ounce I had not to cry while he was telling me that this other little jerk (who is also 4, so his behavior is more a reflection of his home life than anything else) hits/kicks/yells at him on the bus. So when the bus got there I went out and put Nathan in, then let the door close (it's a minivan, not a real bus and they both sit in car seats). Then I talked to his driver.
I told her that I wasn't sure if she was a aware but that Jerk (what I will call him from now on) has been bullying Nathan and it's both verbal and physical. Do you know what she said.... "Yeah, I know, it's really bad" then she told me "I try to talk to Jerk so that he will leave Nathan alone but it doesn't work" ARE YOU KIDDING ME????? She has known about the bullying and has done NOTHING about it, she even still let them sit side by side on the bus. She didn't tell her supervisor, she didn't tell me, she did NOTHING.
Now, for a while Nathan has had unexplained bruises on his legs. He always has a bruise that I never knew where it was coming from. I just assumed that he was getting them from physical therapy and the therapists just weren't telling me when he falls (unlikely but it could happen). Now I know that he's getting them from Jerk kicking him on the bus.
So I pulled Nathan off the bus, screamed at Jerk for his behavior and went back inside. I called the bus company and you know what their response was... they hung up on me. They told me, once they had spoken with the driver, that the driver said nothing was happening and there were no problems. I told them that wasn't true and she admitted it to me, then I was hung up on. We repeated this until I had been hung up on three times.
So now I have no choice, I have no way to safely get Nathan to school, I had to pull him out of his preschool program. I called the school district and the special ed coordinator there was upset but there really isn't much she can do, or is willing to do. She called the county and they said that because this isn't an ongoing problem they don't need to do anything except put the two boys into seperate seats from now on. My real problem is that the driver knew it was more than just verbal and did NOTHING about it...
For now Nathan is simply not going to school. I have a meeting at the school on Monday, we'll see what happens.
Sunday, April 8, 2012
Update
I can't believe it's been so long since I last updated.
The boys are both doing great. Nathan will start t-ball in a couple weeks. He has one practice on a Thursday then that weekend is opening weekend and he will have the opening day parade and then his first game. I have to go pick up his uniform (shirt) this weekend, I'm hoping to meet his coach also. I emailed him just to give him a heads up on Nathan but I'd like to meet him in person.
Trevor is into everything all the time. He is one big ball of activity and energy and it's so cute to see. Nathan never had as much energy as Trevor does, it's adorable to see them play together and read books together.
Today we had a nice Easter. We went to mass at 10:30, then we went to ride the train at Hoffman's Playland (a very small amusement park). After that we went to Uncle David and Aunt Kathleen's house for dinner. After dinner the boys had a ton of fun playing outside. Nathan was practicing t-ball and hitting the baseball, Trevor was practicing not falling down while walking on an incline. At one point Trevor did fall down the hill, he hit his head and got a mouth full of dirt, he cried as I got all the grass out of his mouth. Then a little while later he picked a hand full of grass and then put it in his mouth, it made me laugh when he spit it out and made a funny face.
Things have been pretty good for Nathan health-wise. He was in the hospital briefly last week but it was just overnight and then he got to come home. Matt is finally home from train school and the job he is training on has weekends off which has been great. That means that he will get to be there for opening day and Nathan's first t-ball game, yayy! I will be sure to post pictures as soon as I can after his game.
The boys are both doing great. Nathan will start t-ball in a couple weeks. He has one practice on a Thursday then that weekend is opening weekend and he will have the opening day parade and then his first game. I have to go pick up his uniform (shirt) this weekend, I'm hoping to meet his coach also. I emailed him just to give him a heads up on Nathan but I'd like to meet him in person.
Trevor is into everything all the time. He is one big ball of activity and energy and it's so cute to see. Nathan never had as much energy as Trevor does, it's adorable to see them play together and read books together.
Today we had a nice Easter. We went to mass at 10:30, then we went to ride the train at Hoffman's Playland (a very small amusement park). After that we went to Uncle David and Aunt Kathleen's house for dinner. After dinner the boys had a ton of fun playing outside. Nathan was practicing t-ball and hitting the baseball, Trevor was practicing not falling down while walking on an incline. At one point Trevor did fall down the hill, he hit his head and got a mouth full of dirt, he cried as I got all the grass out of his mouth. Then a little while later he picked a hand full of grass and then put it in his mouth, it made me laugh when he spit it out and made a funny face.
Things have been pretty good for Nathan health-wise. He was in the hospital briefly last week but it was just overnight and then he got to come home. Matt is finally home from train school and the job he is training on has weekends off which has been great. That means that he will get to be there for opening day and Nathan's first t-ball game, yayy! I will be sure to post pictures as soon as I can after his game.
Thursday, February 16, 2012
Home Again
Today we were released from the hospital. The STAT nurse put in a PICC line yesterday, it's like a more permanent IV so that we could take Nathan home on IV antibiotics that I give him. So today once they were sure the PICC was functioning they released him. It took a while to coordinate the home infusion supplies but once that was all figued out we were good to go.
Once we got home from the hospital the nurse came out to the house to drop off all the IV supplies and pumps. She came with a HUGE bos full of stuff, all just for 2 weeks. It's amazing everything we need for such a short period of time. I have to give him his last meds of the night at 10pm which isn't bad but it's 1 1/2 hours of meds total so it's going to take a while and I'm going to get to bed late but at least we're home.
Nathan was exhausted all evening. He has been really tired lately, I think it's been from not sleeping great in the hospital. So he was ready for bed tonight when we got home from Aunt Katherine's house.
The boys had a great time at Aunt Katherine's house. Trevor was very interesed in her wine collection and Nathan just wanted to just sit on the couch and watch PBS. The adults got to play some games while the kids played, it was a nice night.
Next week we're going to have a busy week with a Dr appt in Boston, one around here and we have to have the home nurse come in to change Nathan's PICC dressing. I better sleep when I can, these next two week are going to be quite sleep deprived!
Once we got home from the hospital the nurse came out to the house to drop off all the IV supplies and pumps. She came with a HUGE bos full of stuff, all just for 2 weeks. It's amazing everything we need for such a short period of time. I have to give him his last meds of the night at 10pm which isn't bad but it's 1 1/2 hours of meds total so it's going to take a while and I'm going to get to bed late but at least we're home.
Nathan was exhausted all evening. He has been really tired lately, I think it's been from not sleeping great in the hospital. So he was ready for bed tonight when we got home from Aunt Katherine's house.
The boys had a great time at Aunt Katherine's house. Trevor was very interesed in her wine collection and Nathan just wanted to just sit on the couch and watch PBS. The adults got to play some games while the kids played, it was a nice night.
Next week we're going to have a busy week with a Dr appt in Boston, one around here and we have to have the home nurse come in to change Nathan's PICC dressing. I better sleep when I can, these next two week are going to be quite sleep deprived!
Tuesday, February 14, 2012
We Just Can't Stay Away
Yesterday morning I was on the phone all morning call each of Nathan's specialists, we are due to go see most of them so I needed to call and make some appointments. One of my calls was to the pediatrician to check on urine results. Turns out labcorp faxed the results to the wrong place and it took a lot longer to get them than it should have.
Both boys urine was fine, no UTI's but that left us with the fever problem for Nathan. So while I was talking to the nurse she told me his urine did show some glucose in his urine which isn't a normal finding so they needed to get some bloodwork done. Anyone who knows Nathan knows how difficult that is so we went into the ER to get him checked out there and have the people who know his veins best try to get some blood.
The doctor initially acted like he didn't want to give Nathan some light sedation for the bloodwork but the nurse and I convinced him it was best for all of us, and we were right. They got the IV and blood on the 1st try - that never happens - and then about 45 minutes later Nathan looked at his arm and said "how did that get there?" They did chest x-rays and a renal ultrasound in addition to the bloodwork. His ultrasound was normal for him, his kidney has extra fluid in it but it's been there and it was better than last time so that is good. His chest x-ray is what got us admitted though. It showed a pleural effusion on the right side. That means that he has extra fluid around his lung, it's constriciting his lung making it harder for him to breathe and causing his oxygen level to be a little lower than they would like. They did another x-ray and it's small but it's there so we need to stay until it goes away.
The doctors are assuming it's from an infection since he has had such a high fever for so long. I'm hoping they are right and it's not from anything else. To treat it they are giving him TONS of antibiotics, I think he's on 3 different ones by IV right now. So I also asked them to put him on good bacteria to help with the diarrhea that I know is coming.
For now he's OK. Neither of us slept last night. Here is a timeline of events:
10pm, he finally settled into his room and went to sleep
11pm, vitals
12pm, they came in and turned on ALL the lights in the bed next to us - it was empty at the time
1am, they turned all the lights off
2am, lights on and a roommate came
3am, coughing fit because it's so dry in here he can't cough up the crap in his lungs
4am, bloodwork - the nurse did it at this time because he needed his antibiotic
5am, I called it a wrap and just got up and started working. I did that because the Dr's were rounding on the roommate.
Needless to say I'm exhausted already but Nathan is at least sleeping. I'm nosey and heard the Dr talking to his roommate who I think is going to go home later today so maybe this afternoon we can take a nap.
Both boys urine was fine, no UTI's but that left us with the fever problem for Nathan. So while I was talking to the nurse she told me his urine did show some glucose in his urine which isn't a normal finding so they needed to get some bloodwork done. Anyone who knows Nathan knows how difficult that is so we went into the ER to get him checked out there and have the people who know his veins best try to get some blood.
The doctor initially acted like he didn't want to give Nathan some light sedation for the bloodwork but the nurse and I convinced him it was best for all of us, and we were right. They got the IV and blood on the 1st try - that never happens - and then about 45 minutes later Nathan looked at his arm and said "how did that get there?" They did chest x-rays and a renal ultrasound in addition to the bloodwork. His ultrasound was normal for him, his kidney has extra fluid in it but it's been there and it was better than last time so that is good. His chest x-ray is what got us admitted though. It showed a pleural effusion on the right side. That means that he has extra fluid around his lung, it's constriciting his lung making it harder for him to breathe and causing his oxygen level to be a little lower than they would like. They did another x-ray and it's small but it's there so we need to stay until it goes away.
The doctors are assuming it's from an infection since he has had such a high fever for so long. I'm hoping they are right and it's not from anything else. To treat it they are giving him TONS of antibiotics, I think he's on 3 different ones by IV right now. So I also asked them to put him on good bacteria to help with the diarrhea that I know is coming.
For now he's OK. Neither of us slept last night. Here is a timeline of events:
10pm, he finally settled into his room and went to sleep
11pm, vitals
12pm, they came in and turned on ALL the lights in the bed next to us - it was empty at the time
1am, they turned all the lights off
2am, lights on and a roommate came
3am, coughing fit because it's so dry in here he can't cough up the crap in his lungs
4am, bloodwork - the nurse did it at this time because he needed his antibiotic
5am, I called it a wrap and just got up and started working. I did that because the Dr's were rounding on the roommate.
Needless to say I'm exhausted already but Nathan is at least sleeping. I'm nosey and heard the Dr talking to his roommate who I think is going to go home later today so maybe this afternoon we can take a nap.
Sunday, February 12, 2012
Thoughts
Well the bus problem has been resolved. Nathan is now able to take the bus to and from school each day. I had to remind them that sending a safe carseat isn't an unreasonable request, it's just doing their job. The woman at the bus company isn't speaking to me, apparently we're 12 years old, but at least he's safe on his way to school.
Both boys have been sick for a month now. Nathan was in the hospital in January for RSV and then Trevor also got RSV but he avoided the hospital. Then they both started getting fevers but then the fevers would break for a couple days and return. So now we're waiting on urine results. I think since there are no other symptoms it's a UTI in each of them. Nathan has been complaining of belly pain which I think translates into back pain/kidney pain. So if his fever isn't gone by tomorrow and his results still aren't in I'm going to have to bring him to the hospital. I talked with the nurse at his pediatrician office and she agreed, we can't let him go for so long with a fever since he has just one kidney and we need to be careful with it. So for now we just have to wait and see.
Matt was home this weekend, which was nice. The boys really miss him, especially Nathan. Nathan has been having a hard time with Matt being gone so he really loves to be able to spend time with Daddy. It was also nice to be able to not rely so much on my parents and sister for help. With Matt and his parents all being gone my parents and sister are the only ones who can really help me with the kids. I've needed a lot of help lately with them both being sick. What has suprised me is the amount of people who have offered to help with the kids, it's been really nice to see how many people love my boys are willing to help in any way they can. What is even more suprising though is the people who haven't offered to help, the ones I haven't heard from at all since Matt has been gone.
Yesterday I went to Saratoga to help with a spaghetti dinner that was benefitting THON at Penn State. Two of my cousins go there so their parents put together the dinner in support of them and THON. MY cousins both came home for the weekend with a group of their friends, all college students, to help out at the dinner. It was amazing to see. THON raises money for the four diamonds fund - pediatric cancer. When I was in college pediatric cancer wasn't even on my radar and I certainly wasn't staying up for 48 hours to dance to raise money for it. It was amazing to see a group of kids (when did I get so old) who cared so much.
That's all for us for now. We are hoping to hear urine results tomorrow, otherwise I'm afraid it's off to the hospital for us.
Both boys have been sick for a month now. Nathan was in the hospital in January for RSV and then Trevor also got RSV but he avoided the hospital. Then they both started getting fevers but then the fevers would break for a couple days and return. So now we're waiting on urine results. I think since there are no other symptoms it's a UTI in each of them. Nathan has been complaining of belly pain which I think translates into back pain/kidney pain. So if his fever isn't gone by tomorrow and his results still aren't in I'm going to have to bring him to the hospital. I talked with the nurse at his pediatrician office and she agreed, we can't let him go for so long with a fever since he has just one kidney and we need to be careful with it. So for now we just have to wait and see.
Matt was home this weekend, which was nice. The boys really miss him, especially Nathan. Nathan has been having a hard time with Matt being gone so he really loves to be able to spend time with Daddy. It was also nice to be able to not rely so much on my parents and sister for help. With Matt and his parents all being gone my parents and sister are the only ones who can really help me with the kids. I've needed a lot of help lately with them both being sick. What has suprised me is the amount of people who have offered to help with the kids, it's been really nice to see how many people love my boys are willing to help in any way they can. What is even more suprising though is the people who haven't offered to help, the ones I haven't heard from at all since Matt has been gone.
Yesterday I went to Saratoga to help with a spaghetti dinner that was benefitting THON at Penn State. Two of my cousins go there so their parents put together the dinner in support of them and THON. MY cousins both came home for the weekend with a group of their friends, all college students, to help out at the dinner. It was amazing to see. THON raises money for the four diamonds fund - pediatric cancer. When I was in college pediatric cancer wasn't even on my radar and I certainly wasn't staying up for 48 hours to dance to raise money for it. It was amazing to see a group of kids (when did I get so old) who cared so much.
That's all for us for now. We are hoping to hear urine results tomorrow, otherwise I'm afraid it's off to the hospital for us.
Friday, February 3, 2012
Bus Problems
Nathan takes the bus to preschool, he loves it. He loves when his bus gets here, it makes him feel like a big boy. I love that we don't have to drive 45 minutes each way twice a day just to bring him and pick him up from preschool. I think that has ended.
I got a call the other day from the bus company, Gateway Transportation, that he was getting a new driver in the morning - fine, I couldn't care less. This will be his 4th driver this year alone, they are constantly changing the route and drivers, no big deal. So on Thursday a bus gets here at 8:30, school starts at 8:45 and it's a 45 minute drive from our house.
I walked Nathan out to the bus and saw the "new" car seat he was supposed to sit it, it looked older than me. Usually I ask to see the expiration date but I didn't this time, I probably should have. The straps were all twisted and mangled looking, I let that go also. They sat him in the seat and buckled him in, never tightened the straps. I couldn't let that go. I asked the aide to tighten the straps, she couldn't figure out how. So the driver stepped in and attempted to tighten them, they didn't move. Now please know, I only know about car seats from having been the annoying parent at every local car seat safety check asking a zillion questions while they police and techs are trying to install my car seats. So I told the driver that Nathan couldn't sit in that car seat because he needed the straps to be tighter. The guy lifted the strap up off Nathan and it was probably 2 inches above his shoulder, and acted like that was fine.
So needless to say I drove Nathan to school that day. On the way I tried to call the bus company, the first time I called the woman was ride and defensive, she told me he was a great driver and everyone loved him. Which is wonderful, but that doesn't make him a car seat expert. Then she told me I was being too needy, they knew what they were doing since this was their business. I told her she needed to care a little more about safety and apparently that set her off because she hung up on me. So i called back a couple more times and either they wouldn't answer or they just hung up on me once they heard who I was.
Today I kept Nathan home from school, he was exhausted from being up all night coughing. Good thing since the bus never came. While on my way to the gym I called, they discontinued bus service because I'm too "needy and demanding" I told her I'm not needy, I just want my son to be safe on his way to school. She acted like providing him with a different car seat is going above and beyond what they should have to do, I reminded her it was simply her job. Then I asked her to please understand why I was upset, I had been hung up on to which she replied "I hung up on you three times" like it was a normal thing to do.
I am so frustrated. I called the county and the woman there was equally useless. She told me she inspects their car seats at the beginning of each year and they are always fine, so I should just relax. I think I might take a picture of the next car seat he is provided to show them how awful they are. Ugh
I got a call the other day from the bus company, Gateway Transportation, that he was getting a new driver in the morning - fine, I couldn't care less. This will be his 4th driver this year alone, they are constantly changing the route and drivers, no big deal. So on Thursday a bus gets here at 8:30, school starts at 8:45 and it's a 45 minute drive from our house.
I walked Nathan out to the bus and saw the "new" car seat he was supposed to sit it, it looked older than me. Usually I ask to see the expiration date but I didn't this time, I probably should have. The straps were all twisted and mangled looking, I let that go also. They sat him in the seat and buckled him in, never tightened the straps. I couldn't let that go. I asked the aide to tighten the straps, she couldn't figure out how. So the driver stepped in and attempted to tighten them, they didn't move. Now please know, I only know about car seats from having been the annoying parent at every local car seat safety check asking a zillion questions while they police and techs are trying to install my car seats. So I told the driver that Nathan couldn't sit in that car seat because he needed the straps to be tighter. The guy lifted the strap up off Nathan and it was probably 2 inches above his shoulder, and acted like that was fine.
So needless to say I drove Nathan to school that day. On the way I tried to call the bus company, the first time I called the woman was ride and defensive, she told me he was a great driver and everyone loved him. Which is wonderful, but that doesn't make him a car seat expert. Then she told me I was being too needy, they knew what they were doing since this was their business. I told her she needed to care a little more about safety and apparently that set her off because she hung up on me. So i called back a couple more times and either they wouldn't answer or they just hung up on me once they heard who I was.
Today I kept Nathan home from school, he was exhausted from being up all night coughing. Good thing since the bus never came. While on my way to the gym I called, they discontinued bus service because I'm too "needy and demanding" I told her I'm not needy, I just want my son to be safe on his way to school. She acted like providing him with a different car seat is going above and beyond what they should have to do, I reminded her it was simply her job. Then I asked her to please understand why I was upset, I had been hung up on to which she replied "I hung up on you three times" like it was a normal thing to do.
I am so frustrated. I called the county and the woman there was equally useless. She told me she inspects their car seats at the beginning of each year and they are always fine, so I should just relax. I think I might take a picture of the next car seat he is provided to show them how awful they are. Ugh
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