I got news this morning that C's Medicaid is finally going to go through. They only need one more piece of info from the facility. Yay! It's about time!
So, I called the facility to tell them what they needed to send. I also talked to the nurse and C finally saw the Dr again. She increased his Depakote to 1000mg at night and his Risperdal to 2mg at night. He slept well last night and was actually good and awake at med time this morning. That's awesome! Hopefully his med levels are good now, for a while, and he can start to make more progress. It's odd that he would be more awake with the increase to the Risperdal. Maybe the dose wasn't enough for him to sleep well and not be tired through half the next day? I don't know. I hope that today wasn't a fluke though. He's always had a hard time waking up in the mornings. So much so that he would sleep through most of the morning at school, thus missing out on a lot of learning. When he went in, he was on 1000mg of Depakote but for some reason they lowered it to 500mg. The had increased it to 750mg and now it's back up to 1000mg. Duh. I've been trying to get ahold of the Dr to talk to her about that but never got a call-back from her. Thanks doc. I really hope that now he will be able to control himself and his anger better again. He's still not on level yet.
We had a good visit yesterday. We took him two little lego sets so he was more interested in them than visiting with us. That was okay. As long as he's having a good day and the visit goes well, it's not the length of it that matters.
E is totally potty trained during the day at home now. Sadly, out home and my parents' home is the only place she'll use the potty. She refuses to use anyone else's potty. Daddy took her to visit his dad yesterday and she wouldn't use his either. I can understand not wanting to use public toilets. They are big and loud. I get that. But, a regular toilet, in a home? What's wrong with that? Daddy even had her little Elmo potty seat with them so that it would be more like home but she was having nothing to do with it. Again, she refused, screaming until she peed herself. Poor kiddo. She'll get it. Just trying to be patient. Lord knows, I've learned to be patient over the last several years from dealing with C. We'll get through it all. Eventually ;)
Monday, February 28, 2011
Wednesday, February 23, 2011
Not too bad
Well, today was a pretty good day. "E's" potty training is still going well. The only problem we're having is that she's terrified of public pottys still. We were out all evening and she had on a diaper but refused to pee in it. She asked to go potty 4 different times but refused and threw a fit as soon as we'd enter the restroom (at 2 different places). Finally, in Wendy's, I told her she was being silly and that I knew she had to go. She started screaming and yelling "no, thank you. I go eat." LOL She had to go so bad that she was standing there with her legs crossed. I finally got her top unsnapped and pulled her diaper off just in time for her to pee on herself. Poor kid. She was so upset that she peed on her panties (she insisted on wearing them over her diaper) and her pants. She didn't care that she had peed on me and the floor though. Haha. I got us both cleaned up and hands washed then she freaked out over the hand dryer. Lesson for the day: even if she's got on a diaper and you have a spare, take a change of clothes for her also.
We had a good visit with C. He was in a good mood and said he had had a good day. I didn't get any phone calls either. He looks like he got whooped pretty good yesterday though. Black eye, bruised cheek bone, scab under his chin and one on his neck. Yeah, he picked the wrong kid to piss off. I HATE seeing him like that. I feel so bad for him but I know he has lessons to learn and he most likely instigated at least one of the fights yesterday. *Sigh* I was informed, again, that they were no longer letting little kids go downstairs to visit. I told the therapist who told me this that that was fine, they could bring C upstairs to visit. If they think that I'm not going to take E to see her big brother, they've got another thing coming. She's 2. She doesn't understand. She misses her brother. She WILL see him as often as I feel like taking her. Period. I don't care what arrangements they have to make. C is very loving toward her and very protective. He misses her like crazy. If he's not allowed to see her for the next year, it's not going to do him much good and he WILL go off. And so will I. I understand why they made this new rule. There are at least 2 toddlers, 2 infants, a 5 year old, and at least a couple pre-teens who are there regularly. I get that if one of the boys happens to go into a rage for some reason that someone could get hurt and they don't want to expose these little kids to that. Yeah, I get it. It's a liability thing. When we visit, we keep E right with us. She's not allowed to run around or bother the other people, like the other toddler and the 5 year old. If they don't want her around the other kids that's fine but they will accomodate us and find a place for us to visit with C.
I'll also be calling up there tomorrow to talk to the Dr. As far as I know, she hasn't seen C since he was admitted. That's unacceptable. His Depakote levels are lower than they need to be and he's getting into fights all the time. There is no excuse for her not to have seen him again yet. He's been there since January 10. The bloodwork and ECG have been done. She should have seen him and addressed his meds. She also should have called me by now. I doubt she'll be there but at least she can call me back. We'll see what tomorrow brings....
We had a good visit with C. He was in a good mood and said he had had a good day. I didn't get any phone calls either. He looks like he got whooped pretty good yesterday though. Black eye, bruised cheek bone, scab under his chin and one on his neck. Yeah, he picked the wrong kid to piss off. I HATE seeing him like that. I feel so bad for him but I know he has lessons to learn and he most likely instigated at least one of the fights yesterday. *Sigh* I was informed, again, that they were no longer letting little kids go downstairs to visit. I told the therapist who told me this that that was fine, they could bring C upstairs to visit. If they think that I'm not going to take E to see her big brother, they've got another thing coming. She's 2. She doesn't understand. She misses her brother. She WILL see him as often as I feel like taking her. Period. I don't care what arrangements they have to make. C is very loving toward her and very protective. He misses her like crazy. If he's not allowed to see her for the next year, it's not going to do him much good and he WILL go off. And so will I. I understand why they made this new rule. There are at least 2 toddlers, 2 infants, a 5 year old, and at least a couple pre-teens who are there regularly. I get that if one of the boys happens to go into a rage for some reason that someone could get hurt and they don't want to expose these little kids to that. Yeah, I get it. It's a liability thing. When we visit, we keep E right with us. She's not allowed to run around or bother the other people, like the other toddler and the 5 year old. If they don't want her around the other kids that's fine but they will accomodate us and find a place for us to visit with C.
I'll also be calling up there tomorrow to talk to the Dr. As far as I know, she hasn't seen C since he was admitted. That's unacceptable. His Depakote levels are lower than they need to be and he's getting into fights all the time. There is no excuse for her not to have seen him again yet. He's been there since January 10. The bloodwork and ECG have been done. She should have seen him and addressed his meds. She also should have called me by now. I doubt she'll be there but at least she can call me back. We'll see what tomorrow brings....
Tuesday, February 22, 2011
Enough already!
OMG what a day! We got another phone call. "C" went after a kid and had to be physically removed from the room. I don't know what led up to it. After he calmed down, they let him go back in the "community" room. Within 15 minutes, he went after the kid again. He's homesick and wants to come home but he KNOWS that his behavior is why he's there and what is going to keep him there. I just don't get it. I'm so damn frustrated. I wish I knew more about what was going on. I am so used to being the one having to deal with all of this and coordinating his care and appointments that I feel completely lost right now. I give up for the day. I'm done. Hopefully tomorrow will be better.
Already?
Yes, I already have another post. Another reason I started this blog is to keep track of "C's" progress. So, some days, I may post several times and not at all on others.
I just got a call. I always dread answering the phone when they call. I never know what they are going to say or what has happened and my stomach turns as soon as I see the caller ID. Some calls make me cry but nearly all of them give me the urge to vomit.
Seems like today isn't going to be a good day for "C". He got into an argument coming from art class and ended up getting punched in the mouth. His lips are already chapped and his bottom lip is split so the punch re-opened it. He's fine and has calmed down now. There's another write-up. He's got to start again. With what? With trying to get "on-level". In order to get "on-level", he has to go 14 days without a write-up. That doesn't sound too difficult. Right? I wish it wasn't. It's apparently extremely difficult for some kids.
I just got a call. I always dread answering the phone when they call. I never know what they are going to say or what has happened and my stomach turns as soon as I see the caller ID. Some calls make me cry but nearly all of them give me the urge to vomit.
Seems like today isn't going to be a good day for "C". He got into an argument coming from art class and ended up getting punched in the mouth. His lips are already chapped and his bottom lip is split so the punch re-opened it. He's fine and has calmed down now. There's another write-up. He's got to start again. With what? With trying to get "on-level". In order to get "on-level", he has to go 14 days without a write-up. That doesn't sound too difficult. Right? I wish it wasn't. It's apparently extremely difficult for some kids.
Here we go...
Seriously? Why is it taking me so long to figure out what to write? There is so much in my head that needs to get out that it's all getting stuck. I'll tell you now; my mind runs in circles, I'm not the best at expressing my thoughts, and some of what I type may make no sense to you at all. If you're still willing to torture yourself by sticking around, then feel free to do so. If not, thanks for stopping by. Have a great day.
For those of you who are still here and willing to deal with my sarcasm, frequent rants, times of joy, and sadness, welcome! I decided to start this blog to share what we are dealing with as a family. My friends and family know what we're going through so I won't go into that very long story right now. Anyway, I decided that I needed an outlet for those times when I get into a funk, just need to get things off my chest, or have something great to share. Welcome to my roller coaster. I hope you enjoy the ride.
The past week has been a rough one. We, once again, had some insurance issues but I'm pretty sure that's been straightened out now. I spent two hours having a panic attack over it last Tuesday and ended up with a migraine for the next two days.
When we went to visit "C" on Wednesday, we found out that most of the kids there had the flu and they weren't allowing any kids to visit. Thankfully my sister was there with her sons and they took "E" with them to get something to eat while the hubby and I visited. He was upset that the boys and "E" couldn't visit but he understood. We didn't have the best visit. Most of it was spent with his therapist discussing things that had happened on Monday and Tuesday, what he did, what he should have done, etc. Yeah, not a great visit, but not the worst. At least he was in a fair mood when we got there.
I talked to "C" on the phone Saturday and he was having a pretty good day. He was in a good mood but sounded a little sad. God, how I wish I could just go and give him a hug.
Sunday's visit - even worse. I called ahead to see if "E" could visit and if the other kids were feeling better. Thankfully, most of them were well again and "E" could go. We were so excited to see "C". When he walked in, he seemed fine. We all got hugs and sat down. I asked him how he was doing, if he was having a good day, etc. Then he started crying. "I want to go home. I promise I'll be good. I'll do better. Please, I just want to go home. Why won't you take me home? I miss everybody so bad. I want to go home." Have you ever had your heart break into a million pieces and want to bawl your eyes out, and not be able to do anything about it? Ever have to hope that you are able to hold it together, again, when you feel like you are totally falling apart inside and your heart is being ripped out of your chest? Try telling your crying child that they can't come home. Try explaining to your toddler where their brother is every day and why they can't go play with them right now. Try having your toddler ask, every time you start to leave the house, if you're going to go see their brother. Try going anywhere and seeing happy, healthy, "normal" kids, then go home and not have one of your children there. Yeah, I think that gives you a little idea of what I go through on a daily basis. Anyway, I finally got him to calm down and stop crying long enough for us to have an "okay" visit and talk. Then it was time for us to leave.
Back on the roller coaster.....then there's "E". She's so full of life, has a great sense of humor, and keeps me on my toes. We're in the middle of potty training and she's doing great with it. She's such an easy toddler, most days. Yesterday she peed in the potty at Walmart, for the first time. Until then, she was terrified of the toilets that are in most public restrooms. She finally did it though!
I know that I am blessed. It's just hard to feel it through the frustration and sadness some days. I can't wait until the day that "C" comes home and we can begin the next stage in our lives. It's going to be a rough ride and there may be some potholes once we're there, but we're going to get there. That's the main thing.
For those of you who are still here and willing to deal with my sarcasm, frequent rants, times of joy, and sadness, welcome! I decided to start this blog to share what we are dealing with as a family. My friends and family know what we're going through so I won't go into that very long story right now. Anyway, I decided that I needed an outlet for those times when I get into a funk, just need to get things off my chest, or have something great to share. Welcome to my roller coaster. I hope you enjoy the ride.
The past week has been a rough one. We, once again, had some insurance issues but I'm pretty sure that's been straightened out now. I spent two hours having a panic attack over it last Tuesday and ended up with a migraine for the next two days.
When we went to visit "C" on Wednesday, we found out that most of the kids there had the flu and they weren't allowing any kids to visit. Thankfully my sister was there with her sons and they took "E" with them to get something to eat while the hubby and I visited. He was upset that the boys and "E" couldn't visit but he understood. We didn't have the best visit. Most of it was spent with his therapist discussing things that had happened on Monday and Tuesday, what he did, what he should have done, etc. Yeah, not a great visit, but not the worst. At least he was in a fair mood when we got there.
I talked to "C" on the phone Saturday and he was having a pretty good day. He was in a good mood but sounded a little sad. God, how I wish I could just go and give him a hug.
Sunday's visit - even worse. I called ahead to see if "E" could visit and if the other kids were feeling better. Thankfully, most of them were well again and "E" could go. We were so excited to see "C". When he walked in, he seemed fine. We all got hugs and sat down. I asked him how he was doing, if he was having a good day, etc. Then he started crying. "I want to go home. I promise I'll be good. I'll do better. Please, I just want to go home. Why won't you take me home? I miss everybody so bad. I want to go home." Have you ever had your heart break into a million pieces and want to bawl your eyes out, and not be able to do anything about it? Ever have to hope that you are able to hold it together, again, when you feel like you are totally falling apart inside and your heart is being ripped out of your chest? Try telling your crying child that they can't come home. Try explaining to your toddler where their brother is every day and why they can't go play with them right now. Try having your toddler ask, every time you start to leave the house, if you're going to go see their brother. Try going anywhere and seeing happy, healthy, "normal" kids, then go home and not have one of your children there. Yeah, I think that gives you a little idea of what I go through on a daily basis. Anyway, I finally got him to calm down and stop crying long enough for us to have an "okay" visit and talk. Then it was time for us to leave.
Back on the roller coaster.....then there's "E". She's so full of life, has a great sense of humor, and keeps me on my toes. We're in the middle of potty training and she's doing great with it. She's such an easy toddler, most days. Yesterday she peed in the potty at Walmart, for the first time. Until then, she was terrified of the toilets that are in most public restrooms. She finally did it though!
I know that I am blessed. It's just hard to feel it through the frustration and sadness some days. I can't wait until the day that "C" comes home and we can begin the next stage in our lives. It's going to be a rough ride and there may be some potholes once we're there, but we're going to get there. That's the main thing.
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