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!
Family Vacation
Tuesday, September 18, 2012
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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