Eoghan
Maura
Finnian
Saturday, May 29, 2010
Busy Week
We have had a busy week. Well with Finnian just getting over his surgery and managing his spasms and pain. The nurses truck got stolen with Finnian's car seat in it. Heart evaluation for Finnian. Mammys defiblitator surgery. Eoghans eye check up and we had to return Finnans 24 hour heart monitor. But its finally over.
All Finnian wanted to do was sleep on his side but we couldn't have that as he would have ended up sores on him. So he screamed any time we would change him or shift his position.
Bonnies truck got stolen and she had taken us to the hospital on Thursday and we had Finnian's special needs car seat in her truck. I will have to save up to get him another one as they are not cheap. Thankfully we had the regular car seat so thats what he is in now.
Thursday was a busy day as the Mammy went in to get her new defibilator and Finnian went to get his heart checked out. The Mammy came home the same day and she is doing great. She was a bit groggy and the cuppa of tea didn't taste right but she is doing fine now.
Finnian went to the cardiologist they wanted to rule out any heart involvement with his seizures. The echo was great and with the EKG there was some abnormal rhythm's but he was crying when they were doing it. They put a 24 hour heart monitor on him to see how his heart coped during his "spells". Of course he didn't have the ones that we have on video but he had a few spasm spells.
Eoghan had his eye check up today and everything was good no change in his perscription so come back in 6 months.
Finnian did great today he was sitting up a whole lot and only objected when he was moved form the car seat to his wheelchair and so on. So it looks like hell week is over. We go back on Tuseday to see Nicki the NP at the ortho's office to check out his insision and to get him cleared to go back to school. We have started to wean the valium that he was put on in the hospital for the spasms so we will just have to see how his body reacts to the withdrawl. Hopefully we will get off of it no problems.
All Finnian wanted to do was sleep on his side but we couldn't have that as he would have ended up sores on him. So he screamed any time we would change him or shift his position.
Bonnies truck got stolen and she had taken us to the hospital on Thursday and we had Finnian's special needs car seat in her truck. I will have to save up to get him another one as they are not cheap. Thankfully we had the regular car seat so thats what he is in now.
Thursday was a busy day as the Mammy went in to get her new defibilator and Finnian went to get his heart checked out. The Mammy came home the same day and she is doing great. She was a bit groggy and the cuppa of tea didn't taste right but she is doing fine now.
Finnian went to the cardiologist they wanted to rule out any heart involvement with his seizures. The echo was great and with the EKG there was some abnormal rhythm's but he was crying when they were doing it. They put a 24 hour heart monitor on him to see how his heart coped during his "spells". Of course he didn't have the ones that we have on video but he had a few spasm spells.
Eoghan had his eye check up today and everything was good no change in his perscription so come back in 6 months.
Finnian did great today he was sitting up a whole lot and only objected when he was moved form the car seat to his wheelchair and so on. So it looks like hell week is over. We go back on Tuseday to see Nicki the NP at the ortho's office to check out his insision and to get him cleared to go back to school. We have started to wean the valium that he was put on in the hospital for the spasms so we will just have to see how his body reacts to the withdrawl. Hopefully we will get off of it no problems.
Monday, May 24, 2010
Finnian is home
What a rough few days but our boy is home. He is in pain but doing great. He just had the femur done he didn't need the hip done so he doesn't have a matching pair of scars.
Got a scare on Thursday/ Well the doc came out after the surgery and said everything went great just had to do the femur. In about 20minutes or so someone would come out and take me back to him. I asked if he needed to go to the ICU like the last time and he said no he did great. So I wait and I wait and I wait. Finally I went to see what was keeping them. The nurse was surprised that I was still waiting so she called the recovery room. Finnian is not there. Called the OR hes not there. So she said Finnian OR 3 hip surgery where is he all I hear "hes in the ICU" and she is telling me go to the 9th floor. I hear her ask "why wasn't Mom told" but didn't wait for the answer. Going up in the lift seemed to take forever. Got to the ICU and all I wanted was to see my boy and make sure he was alright. The doc said he's here and he is doing fine we were waiting for you. Waiting for me what the *****. I had spoken to his doc right after the surgery and he said he was fine and now I find out he got taken straight from the OR to the ICU over an hour later. Got told a slight communication error. No its a huge f**** error. Got everything straighened out with his meds and checked all of his IV to make sure he wasn't getting any sugars.
Joe and his parents came and I went out to get something to eat. Came back and was eating in the lounge and I could hear Finnian crying. Got told he had been crying since I left they even had given him pain meds and he was still uncomfortable. The child wasn't crying because of pain from the surgery his whole body was spasming. Got some meds but it didn't get rid of them fully and I refused the extra bolous of morphine as when he got them he spasmed even more. Next morning the pain crew came and wanted to know why I wasn't letting him get the extra pain meds. So I told them got told "its common for them to have spasms after the surgery" Yeah right in the area where the surgery was but not in his whole body. Next thing Finnian has a spasm and they changed his pain meds and added some valium to help the spasms. He was doing so good after that they sent him to a regular room. He stayed there until this morning and he got his walking papers. So now he is home on pain meds and we are going to be weaning the Valium. He is not in a brace or casts so we will see how it goes.
I hate when professionals don't listen to the parents who know their child. All they do is read about him on his chart. When you have a child that walks a different path of normal meds can do funny things thats not in a medical text book.
Got a scare on Thursday/ Well the doc came out after the surgery and said everything went great just had to do the femur. In about 20minutes or so someone would come out and take me back to him. I asked if he needed to go to the ICU like the last time and he said no he did great. So I wait and I wait and I wait. Finally I went to see what was keeping them. The nurse was surprised that I was still waiting so she called the recovery room. Finnian is not there. Called the OR hes not there. So she said Finnian OR 3 hip surgery where is he all I hear "hes in the ICU" and she is telling me go to the 9th floor. I hear her ask "why wasn't Mom told" but didn't wait for the answer. Going up in the lift seemed to take forever. Got to the ICU and all I wanted was to see my boy and make sure he was alright. The doc said he's here and he is doing fine we were waiting for you. Waiting for me what the *****. I had spoken to his doc right after the surgery and he said he was fine and now I find out he got taken straight from the OR to the ICU over an hour later. Got told a slight communication error. No its a huge f**** error. Got everything straighened out with his meds and checked all of his IV to make sure he wasn't getting any sugars.
Joe and his parents came and I went out to get something to eat. Came back and was eating in the lounge and I could hear Finnian crying. Got told he had been crying since I left they even had given him pain meds and he was still uncomfortable. The child wasn't crying because of pain from the surgery his whole body was spasming. Got some meds but it didn't get rid of them fully and I refused the extra bolous of morphine as when he got them he spasmed even more. Next morning the pain crew came and wanted to know why I wasn't letting him get the extra pain meds. So I told them got told "its common for them to have spasms after the surgery" Yeah right in the area where the surgery was but not in his whole body. Next thing Finnian has a spasm and they changed his pain meds and added some valium to help the spasms. He was doing so good after that they sent him to a regular room. He stayed there until this morning and he got his walking papers. So now he is home on pain meds and we are going to be weaning the Valium. He is not in a brace or casts so we will see how it goes.
I hate when professionals don't listen to the parents who know their child. All they do is read about him on his chart. When you have a child that walks a different path of normal meds can do funny things thats not in a medical text book.
Thursday, May 20, 2010
Got the call
Well he has to be at the hospital at 9am and his surgery is scheduled for 11am. I have everything left ready just to put in to his bag. I scrubbed his brace today so now its all nice and clean and ready for them to put on right after sugery. This time I will make sure that they will put it on as soon as possible even if I have to call John or Walter myself to do it.
Fingers crossed that he won't have any weird imblances this time around not like the last time when the ass fell out of his potassium levels. We don't know if it was a side affect/reaction from the epidural or if it was that his levels were low form being sick with a tummy bug a few days before the surgery. So this time around we are not going to go with the epidural.
Will let you know on Friday how things are going as there is no access to a computer at the hospital and I don't have a laptop.
Fingers crossed that he won't have any weird imblances this time around not like the last time when the ass fell out of his potassium levels. We don't know if it was a side affect/reaction from the epidural or if it was that his levels were low form being sick with a tummy bug a few days before the surgery. So this time around we are not going to go with the epidural.
Will let you know on Friday how things are going as there is no access to a computer at the hospital and I don't have a laptop.
Tuesday, May 18, 2010
Making my list and checking it twice-
Yup I am getting his hospital bag ready. Yes I do make a list of all the things I need to bring . It never fails they always forget to order something for him usually his formula so I always bring a supply just incase. I basically bring everything but the kitchen sink.
I have all my lists of his feeding schedule, medication list, daily schedule and of course our sign that says KETO DIET NO SUGARS MEDS IN PILL FORM ONLY.
You have no idea how many times they bring in an IV with D-5 solution in it. At least this time Joe will be better able to keep an eye on things. The last time he made more phone calls over "can they give him this".
Now all we have to do is wait and see what time his surgery will be.
I have all my lists of his feeding schedule, medication list, daily schedule and of course our sign that says KETO DIET NO SUGARS MEDS IN PILL FORM ONLY.
You have no idea how many times they bring in an IV with D-5 solution in it. At least this time Joe will be better able to keep an eye on things. The last time he made more phone calls over "can they give him this".
Now all we have to do is wait and see what time his surgery will be.
Cleared for surgery
Well he got cleared for his surgery on Thursday so now we just have to keep him healthy. He will be having his right hip done so he will have almost matching scars on both sides. The goal for Finnian is that he will hopefully walk with aid ( ie a walker/gait trainer).
We took some video last night as he was a little weird but I keep getting told its too big to upload here. He looked like he didn't have full control over his arm movements but then thast Finnian. I have burned all the digital video I have on him on to a disc so I can bring it to the doctors so they can see what I see. Sometimes its like they don't believe you when you tell them. Some of the videos go back to 2008 and you could see the odd movements then. I must get the vhs tapes transfered to disc so they can see what he was like back when he was small. I don't have a fancy camera but it does take video and thats what I now use.
I have to get more video of him to take to the Movement Doctor so they can see what our lad does. I have a lot of time as that appointment is not until July. So now I will be taping as much unusuall movements that I can get.
I must get a copy to his neuro too so she can see what I have been telling them about for a while.
So keep your fingers crossed and Finnian in your thoughts so Finny can get through the surgery with flying colours
We took some video last night as he was a little weird but I keep getting told its too big to upload here. He looked like he didn't have full control over his arm movements but then thast Finnian. I have burned all the digital video I have on him on to a disc so I can bring it to the doctors so they can see what I see. Sometimes its like they don't believe you when you tell them. Some of the videos go back to 2008 and you could see the odd movements then. I must get the vhs tapes transfered to disc so they can see what he was like back when he was small. I don't have a fancy camera but it does take video and thats what I now use.
I have to get more video of him to take to the Movement Doctor so they can see what our lad does. I have a lot of time as that appointment is not until July. So now I will be taping as much unusuall movements that I can get.
I must get a copy to his neuro too so she can see what I have been telling them about for a while.
So keep your fingers crossed and Finnian in your thoughts so Finny can get through the surgery with flying colours
Sunday, May 16, 2010
The Weekend
This is some of Eoghan's photography work form the weekend. We went to the Botanical Gardens on Saturday and Joe's parents joined us. I had let Eoghan have my old digital camera and some of his shots came out really good. Sorry I don't have any pictures to post yet as mine have to be developed I took my 35mm camera with me. The weather was really great and Finnian had blast. By the time we got home everyone was tired from all the walking me included. Sunday the Grandparents took them to Toys r us well they took Eoghan and Maura, Joe stayed at home with Finnian and I did my usual Sunday thing go food shoping..Eoghan is going to Yankee stadium tomorrow on a school trip and he has me hounded about freeing up the chip for his camera so he can take some pictures. Oh well we will just have to wait and see how they come out
Saturday, May 15, 2010
Curiosity killed the cat but information brought him back
Any one remember the old saying??????
You all know I have been researching Finnian' s "seizures" you know the weird ones. Well I stumbled accross a video on the web and I just sat totally gob smacked. I swear I know my jaw hit the key board. So when Finny and his nurse came home from school I couldn't wait to show her what I had found. So we both sat and watched. She couldn't believe her eyes.
So to Alison "Thank You" for sharing your sweet Angel Niamh's journey. Now I see why his medications don't work on some of his "seizures".
You all know I have been researching Finnian' s "seizures" you know the weird ones. Well I stumbled accross a video on the web and I just sat totally gob smacked. I swear I know my jaw hit the key board. So when Finny and his nurse came home from school I couldn't wait to show her what I had found. So we both sat and watched. She couldn't believe her eyes.
So to Alison "Thank You" for sharing your sweet Angel Niamh's journey. Now I see why his medications don't work on some of his "seizures".
Update
My lad ended up staying at school with his Bonnie looking after him. When he came home he was so pale and he lookd like he had been out drinking all night. You know he wasn't only about 10 mins at home and in his favourite place( on the couch) when he started to act normal Finnian. He was having a great time lauging ,kicking and wrestling his pillow. Then he took a good nap and I mean a GOOD nap. I know he will probably be up most of the night but hey at least our Finnian is his normal self.
He is still doing some twitches but they don't seem to be seizures. I know that probably sounds weird being that Finnian has at times enought electrical activity going on in his little head that would probably light up the Empire Estate Building. But there is part of me telling me that he has more than seizures going on. I have been told that I read too much and I know more than I should but he is my child and I would do anything to make his life better. Mind you he does have a good life he gets waited on hand and foot, has someone at his beck and screech at all times and he doesn't get yelled at for talking when eating, well neither would you if you had direct access to your belly like he has.
He now can tell us when he pees but he always tells us after he goes, Thank goodness for nappies.
He is still doing some twitches but they don't seem to be seizures. I know that probably sounds weird being that Finnian has at times enought electrical activity going on in his little head that would probably light up the Empire Estate Building. But there is part of me telling me that he has more than seizures going on. I have been told that I read too much and I know more than I should but he is my child and I would do anything to make his life better. Mind you he does have a good life he gets waited on hand and foot, has someone at his beck and screech at all times and he doesn't get yelled at for talking when eating, well neither would you if you had direct access to your belly like he has.
He now can tell us when he pees but he always tells us after he goes, Thank goodness for nappies.
Friday, May 14, 2010
Not a good day so far
This morning Finnian was very jumpy, twitchy and the usual see how he does and call me. If he needs diastat just give it to him. So I got the call that he had a seizure on the bus and he was still very jumpy and spaced out like he wasn't fully out of the seizure. So his nurse gave him diastat and then she was a bit nervous well anyone would when its a child you are looking after. His O2 was holding between 95 -97% which is fine but she was worried about his heart rate. All I was thinking was it was abouve 150 but it wasn't it was beating at 72-76 beats . His blood pressure was holding in his normal limits.
So we just have to wait and see what happens
So we just have to wait and see what happens
Thursday, May 13, 2010
The end of a good day
Today was a good day over all for everyone. Finnian had a good day at school. The other 2 brought home their progress reports and Eoghans says "more effort" now his social studies needs help. Never fails work on the weak and the good start to fall. But come to think he hasn't had his Social Studies book home lately. All Maura's says "good work"
The Grandparents are up from SC. So we all had some of my yummy cooking for dinner. Finnian was in a great mood laughing and kicking.
So we didn't expect what happened at 9:55 pm. Yes a bleeping seizure. He came out of it on his own and we didn't have to give him O2. You know now I will be checking on him all night to make sure he doesnt' have any more during the night. All I can say is thankfully I don't have a headache today.
Lets see what tomorrow brings
P.S. I know my spelling is horrible and I do know I have spell check but that's how I know someone is reading it when you complain.
The Grandparents are up from SC. So we all had some of my yummy cooking for dinner. Finnian was in a great mood laughing and kicking.
So we didn't expect what happened at 9:55 pm. Yes a bleeping seizure. He came out of it on his own and we didn't have to give him O2. You know now I will be checking on him all night to make sure he doesnt' have any more during the night. All I can say is thankfully I don't have a headache today.
Lets see what tomorrow brings
P.S. I know my spelling is horrible and I do know I have spell check but that's how I know someone is reading it when you complain.
The Defibulator
Well it has to be replaced. She is happy that its not going to be done tomorrow she has it scheduled for the week after Finnian's surgery. At least she will probably get a smaller unit put in. THe last one was put in in 2001 and they usually have a live span of 5-7 years depending on how often they go off. Well this one has never gone off but hte unit is fine but its the battery that is going. So she has gotten all of her pre-op stuff done while she was there in the office today.
Now all she is hoping is that she will just go in and get it done and come home the same evening. We hope so too.
Now all she is hoping is that she will just go in and get it done and come home the same evening. We hope so too.
yucky Day
Well today was a yucky day it was cold and all day it was making a heavy mist of rain.It felt more like a November's day than a day in May. To top it all off I had a headache and by the afternoon I knew it was a migraine. I haven't had one of those in years My reflux is also acting up so I guess I will just have to go and get my magic pill again.
Finnian had a good day today even with the weather but then again yesterday wasn't great he slept most of the day at school so I should have known that the rain was comming.
Got alot of phone calls today to go over his up coming surgery. The insurance called to tell me they had approved the surgery. The nurse form the doctors office called to say they had gotten the approval.Then the nurse from anestheia called to go over Finnian's medical before the surgery. So now I just have to go to the peds with him on Monday to get his medical clearence. I always leave that to the the last miniute so we know he is fine for surgery.
The headache is finally gone but now I feel a bit achy I just hope I am not coming down with something.
My Mom has to go to the hospital tomorrow to get her defibulator checked out as the test she ran today must not have showed up good. All depending on the hospital check up sje will find out if and when it will need to be replaced. All thats bothering her now wha tif they will want to replace it when Finnian is in the hospital. Hey Mammy don't worry about us you keeping your ticker going is more imptortant Joe has loads of sick leave
Finnian had a good day today even with the weather but then again yesterday wasn't great he slept most of the day at school so I should have known that the rain was comming.
Got alot of phone calls today to go over his up coming surgery. The insurance called to tell me they had approved the surgery. The nurse form the doctors office called to say they had gotten the approval.Then the nurse from anestheia called to go over Finnian's medical before the surgery. So now I just have to go to the peds with him on Monday to get his medical clearence. I always leave that to the the last miniute so we know he is fine for surgery.
The headache is finally gone but now I feel a bit achy I just hope I am not coming down with something.
My Mom has to go to the hospital tomorrow to get her defibulator checked out as the test she ran today must not have showed up good. All depending on the hospital check up sje will find out if and when it will need to be replaced. All thats bothering her now wha tif they will want to replace it when Finnian is in the hospital. Hey Mammy don't worry about us you keeping your ticker going is more imptortant Joe has loads of sick leave
Wednesday, May 12, 2010
The Littlest Hero Project
I was given information on the Littlest Hero project for Finnian. So we applied and we were acceptced so now I just have to wait and be matched up with a photographer and see where and when his photo shoot will happen.
To find out more about the Littlest Hero Project you can visit their website www.littlestherosproject.org
To find out more about the Littlest Hero Project you can visit their website www.littlestherosproject.org
Sunday, May 9, 2010
Saturday, May 8, 2010
Abilities Expo
Hi All,
Just want to remind you all about the Abilities Expo that is coming up later this month. Its at the New Jersey Convention & Expo Center from Friday May 21st 11 am- 5pm, Saturday May 22nd 10am- 5pm and Sunday May 23rd form 11 am-4 pm.
You can also see their web page at www.abilitiesexpo.com
We had planed to go on Friday but with Finnian having his surgery on Thursday that puts Friday off. But I do hope to go either Saturday or Sunday. I think it will be a good experience as we will be able to see all the equipment that is available for our kids.
Just want to remind you all about the Abilities Expo that is coming up later this month. Its at the New Jersey Convention & Expo Center from Friday May 21st 11 am- 5pm, Saturday May 22nd 10am- 5pm and Sunday May 23rd form 11 am-4 pm.
You can also see their web page at www.abilitiesexpo.com
We had planed to go on Friday but with Finnian having his surgery on Thursday that puts Friday off. But I do hope to go either Saturday or Sunday. I think it will be a good experience as we will be able to see all the equipment that is available for our kids.
Thursday, May 6, 2010
The latest news
Well I dropped the medical papers at the school district and I had Finnian with me as his nurse went home sick. Then we went shopping on Fordham Rd and Finnian got his sandals and I picked up some things for the other 2 as well. Eoghan was happy with his $3.99 Iron Man II tee shirt and Maura was so excited over her Puma socks. They were all happy that they each got something.
Got the call about his surgery date so his right hip will be done on May 20th. At least we know what we are in for this time around hopefully. We also got an appointment with the movement doctor so we will see what do they think is it CP or a type of movement disorder? Its not going to change who our Finnian is but as we say just another notch in his diagnoses belt.
So our goal now is to keep Finnian as healthy as possible for his surgery. I hope he doesn't come down with what his nurse has and more at his school are sick too. Hopefully the antibiotics he just finished will keep him well.
Early day for the kids tomorrow from school they are so happy.
Eoghan has been doing very good at school the lowest he has gotten was 94. I am so proud of him he has made a huge come back form the low 70's. I don't know if it was the idea that he might have to go to summer school and miss out on swimming was what changed him but I sure do like the new Eoghan.
You know this evening I sent him around the corner to pick up potatoes that's a first but you know I have to cut the apron strings and let him be more independent. I guess I must have put my big girl knickers on this morning. I seem to be putting them on a lot lately I guess its not only the kids that are growing but in many ways I am too.
Got the call about his surgery date so his right hip will be done on May 20th. At least we know what we are in for this time around hopefully. We also got an appointment with the movement doctor so we will see what do they think is it CP or a type of movement disorder? Its not going to change who our Finnian is but as we say just another notch in his diagnoses belt.
So our goal now is to keep Finnian as healthy as possible for his surgery. I hope he doesn't come down with what his nurse has and more at his school are sick too. Hopefully the antibiotics he just finished will keep him well.
Early day for the kids tomorrow from school they are so happy.
Eoghan has been doing very good at school the lowest he has gotten was 94. I am so proud of him he has made a huge come back form the low 70's. I don't know if it was the idea that he might have to go to summer school and miss out on swimming was what changed him but I sure do like the new Eoghan.
You know this evening I sent him around the corner to pick up potatoes that's a first but you know I have to cut the apron strings and let him be more independent. I guess I must have put my big girl knickers on this morning. I seem to be putting them on a lot lately I guess its not only the kids that are growing but in many ways I am too.
Monday, May 3, 2010
What a Monday
Well it was pouring cat's and dog's this morning. TO top it off I had an appointment with the School District to finish up Finnians IEP. So off I went and got there only to find out they have "missed placed" his medical papers, nothing has been sent to the medical review board to justify that his nurse needs to ride on the school bus and stay in class with him and no one went over his vision assessment to write up goals or how much therapy he will get.To be honest I was pissed. The best was the guy wanted me to "run" home and fax his medical report and he would do a phone conference with me. No way in hell was I about to "run" home fax the papers and do an IEP over the phone. I wouldn't mind this was my 3rd appointment to get this IEP done.
I had a dentist appointment I don't mind going to the dentist its the bill from the dentist I hate to get.
Just before I went to get the kids from school the guy from the school district called and asked if I could bring a copy of his medical papers directly to him tomorrow and he would get on top of everything and push to get everything done. He told me he had all ready gotten in contact with a vision person to provide goals and frequency of services for Finnian and as soon as he would get his medical papers he would take care of the medical clearance for his nurse.
They wanted to know about Finnians seizures today all I said " do you want me to tell you about all the seizures types he has or just one type?" They asked what ones he had recently so I just told them he had complex partical which he stops breathing in and mouth to mouth is now something we have to do when we see these. They both just looked at me and I said that's the reason his nurse needs to be with him at all times. He needs to be kept in the line of sight at all times because of this.
He won't be placed into a school until his IEP is finished and they better put him in the school right by me or I will fight it even if I have to go to court.
You know it makes me sick to my stomach that I have to fight tooth and nail to get our Finnian what he deserves and then you hear others get services handed to them for their children and they are not as involved as my child. I guess the way they look at it well this child could do very well in life with the services and it looks like no matter how much we could give this child its not going to make much of a difference for him.
Oh well lets hope that 4th times the charm with getting his nurse, services he is entitled to and placement in the school right near our house.
I had a dentist appointment I don't mind going to the dentist its the bill from the dentist I hate to get.
Just before I went to get the kids from school the guy from the school district called and asked if I could bring a copy of his medical papers directly to him tomorrow and he would get on top of everything and push to get everything done. He told me he had all ready gotten in contact with a vision person to provide goals and frequency of services for Finnian and as soon as he would get his medical papers he would take care of the medical clearance for his nurse.
They wanted to know about Finnians seizures today all I said " do you want me to tell you about all the seizures types he has or just one type?" They asked what ones he had recently so I just told them he had complex partical which he stops breathing in and mouth to mouth is now something we have to do when we see these. They both just looked at me and I said that's the reason his nurse needs to be with him at all times. He needs to be kept in the line of sight at all times because of this.
He won't be placed into a school until his IEP is finished and they better put him in the school right by me or I will fight it even if I have to go to court.
You know it makes me sick to my stomach that I have to fight tooth and nail to get our Finnian what he deserves and then you hear others get services handed to them for their children and they are not as involved as my child. I guess the way they look at it well this child could do very well in life with the services and it looks like no matter how much we could give this child its not going to make much of a difference for him.
Oh well lets hope that 4th times the charm with getting his nurse, services he is entitled to and placement in the school right near our house.
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