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?
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!
Subscribe to:
Posts (Atom)