Well, Anna rebounded quite nicely from her reaction to the last antibiotic. We have also been strep free for several weeks so that has been a blessing. Zachary caught a little cold which seems to be trying to develop into a sinus infection. He spiked a fever on Turkey day :( Poor thing, but he is running around like usual and not acting overly sick so we are treating with Mucinex at the moment hoping to break it up before it really sticks good.
The kitchen renovation is coming along nicely. Some things happen alot easier than others, but it is all coming around. This weekend the flooring is going in. I hope that we can also get Anna's room back in order by tomorrow. They need to be in their own rooms again :) The countertop should be here before Christmas and we did find out that it's going to be over $500 less than we had paid for it originally, so that will make for an easier time at Christmas this year. I really have to get busy though...I have ALOT of stuff to make between now and the second week of December....maybe next week....LOL.
Jamie is still Jamie. We are looking into get him back into school. He has adjusted nicely to the group home and Day Treatment Program so we need to add something else. The twins are experiencing what appears to be a great deal of anxiety surrounding the visits with Jamie. We were greatly saddened at the last visit when Jamie was presented with the task of saying something positive about everyone. He managed to do so about pretty much everyone, including Gary, except for Zachary. For Zachary he kept repeating what he thought he needed to change in Zachary to make him better...despite the therapists interjection. He just couldn't simply say something positive. He also started to go after Zachary a bit when Zach started to point and walk towards some figures in Jamie's room at the group home. Part of us is glad that Jamie did this as these things need to be worked on. Jamie and Zachary's relationship has been stressed for a good long while. We are not sure why, but Jamie seems to target Zachary. Jamie is now without a roommate at the group home, so we are in hopes that there is a new placement very soon. In all likelyhood, Jamie will end up in a room all his own because it is very likely that by the time he is ready to come home Ian will be off in the Air Force or some other branch of the military. Kyle is off in school and Randy is working on getting settled into a new duty station with the Air Force following Basic Training and Special Forces Training. We are excited and proud of them all.
I see the new cardiologist on Wednesday...finally... and we will plan procedures and surgeries from there. Gary has to have shoulder repair before they can do the work on his foot.
We also had some exciting news shared with us last month. We will be adding a new little one within our extended family late spring 2011...and we pray for an easy and healthy time for the next several months. Geesh...Grandparents....with 7 year old twins...YIKES! It will be fun!!
Saturday, November 27, 2010
Sunday, October 10, 2010
A little update
Anna develped a rash...don't know if its a rash to the med as in an allergic reaction, or if it is a reaction of the med with sunlight....or if the meds not working and she is developing Scarlet Fever. We gave her benedryl...which has already knocked her out...again that is unusual. And her leg pains are back. Her little voice is still very raspy sounding too.
I have to see the cardiologist tomorrow afternoon. I think I will take her with him and have him listen to her and see if we need to find ourselve a pediatric cardio dr. It's too much strep all over her body for my comfort level anymore.
I love the practitioner like she was a sister, but I am seriously doubting capabilities these days :( Miss Anna gets sick way too often and stays sick for way too long when she does get sick.
I have to see the cardiologist tomorrow afternoon. I think I will take her with him and have him listen to her and see if we need to find ourselve a pediatric cardio dr. It's too much strep all over her body for my comfort level anymore.
I love the practitioner like she was a sister, but I am seriously doubting capabilities these days :( Miss Anna gets sick way too often and stays sick for way too long when she does get sick.
Saturday, October 9, 2010
And it continues...
On the kitchen remodel front....Electrical - check, Rough-In Framing - conditional check (but we finished the conditions) ... Insulation is done...ready for inspection on MONDAY!!! Then on to more sheet rock. It's already starting to look like rooms again...minus the tons of boxes of laminate in the middle of the dining room floor...lol...
On the heart condition front...I am on a different type of the newest medication. We are now time released, though I am not convinced of it's efficacy yet. I had a BAD break through today after just going up a set of stairs...and I wasn't even running. Oh how I would love to be able to "run" the stairs again...but I think those days are long passed.
On the Jamie front....We saw him Thursday. He is back to gaining weight again...and up to more of his old tricks. Apparently his old tricks do not fly to well with one of the ladies in the house there with him and she gave him the what for...thankfully. When we saw him, he was rather upset that Anna and Zach had not come with us. So, we explained that Anna and Zach both had been suffering with strep, and that Anna did not seem to be able to kick it and actually ended up with a urinary tract infection! SO what does Jamie do the very next day.....tell the poor ladies at the treatment facility that it hurt him to pee. OH MY LORD! It was really hard not to laugh when the worker called to tell me that he told them that. I did explain to her that likely there was nothing wrong with him, but to be on the safe side, he should be checked....just to make sure. Well, there was absolutely nothing wrong with him at all....NOTHING.
Now, as mentioned, Miss Anna has a UTI. She has been on her meds for three days and states it no longer hurts after she pees. She also states that her throat feels better too. She is acting better as well. I sure hope that this kicks it for good...for a while. It's too early in the year for them to get this sick!!!!
On the heart condition front...I am on a different type of the newest medication. We are now time released, though I am not convinced of it's efficacy yet. I had a BAD break through today after just going up a set of stairs...and I wasn't even running. Oh how I would love to be able to "run" the stairs again...but I think those days are long passed.
On the Jamie front....We saw him Thursday. He is back to gaining weight again...and up to more of his old tricks. Apparently his old tricks do not fly to well with one of the ladies in the house there with him and she gave him the what for...thankfully. When we saw him, he was rather upset that Anna and Zach had not come with us. So, we explained that Anna and Zach both had been suffering with strep, and that Anna did not seem to be able to kick it and actually ended up with a urinary tract infection! SO what does Jamie do the very next day.....tell the poor ladies at the treatment facility that it hurt him to pee. OH MY LORD! It was really hard not to laugh when the worker called to tell me that he told them that. I did explain to her that likely there was nothing wrong with him, but to be on the safe side, he should be checked....just to make sure. Well, there was absolutely nothing wrong with him at all....NOTHING.
Now, as mentioned, Miss Anna has a UTI. She has been on her meds for three days and states it no longer hurts after she pees. She also states that her throat feels better too. She is acting better as well. I sure hope that this kicks it for good...for a while. It's too early in the year for them to get this sick!!!!
Sunday, October 3, 2010
Drywall & Insulation
Electrical - check
Rough-in Framing - conditional check
Drywall - today Mind you...no mudding...just getting it up so that we can insulate overnight, which means we have to go and pick up the machine and the 23 bales of blowin insulation we are going to use instead of paying someone way toooooooo much money to do the same thing.
Tomorrow we need to be checked off the rough-in fully and the insulation, so we can drywall the walls and start putting up cabinets.
The new 5 week goal actually sounds attainable now!!!
On a good note, my heart is mostly behaving itself today. It's a good thing...Friday's scare was enough for me for a LONG time. The medicine however is making me feel like I was run over by a mack truck. YUCKY! I'm not being allowed to help to much since Friday either, which is driving me bats. Guess Friday scared DH as well...
Rough-in Framing - conditional check
Drywall - today Mind you...no mudding...just getting it up so that we can insulate overnight, which means we have to go and pick up the machine and the 23 bales of blowin insulation we are going to use instead of paying someone way toooooooo much money to do the same thing.
Tomorrow we need to be checked off the rough-in fully and the insulation, so we can drywall the walls and start putting up cabinets.
The new 5 week goal actually sounds attainable now!!!
On a good note, my heart is mostly behaving itself today. It's a good thing...Friday's scare was enough for me for a LONG time. The medicine however is making me feel like I was run over by a mack truck. YUCKY! I'm not being allowed to help to much since Friday either, which is driving me bats. Guess Friday scared DH as well...
Friday, October 1, 2010
Conditional Approval
For the love of pete.... Who ever said you could not replicate what was existing? I know that codes have changed. Really I do. And I understand why they have changed too, but people do still stick build houses...everything in this world is not "engineered". We only added three feet to the side of the house...really only 30" if you just count what's on the inside...the rest of it is the overhang on the roof. We did not even change the roof line, just extended it. They wanted baffles up in the roof to keep the insulation from blocking the vents...ummmm we don't have vents.....because we did not mess with what was already existing...we just tied it in. Now they really want us to tie it in....cross straps and all ...really??? Just a little bit of overkill...but rather safe than sorry, we will oblige instead of argue.
I guess it is good they were kind enough to give us the conditional approval so we could go ahead and insulate and be ready to put up drywall on Tuesday.... Electrical passed yesterday...finally...so we can put in the outlets and lights and enjoy the fruits of the last 5 months of our labor.
It will be a busy weekend.
Then we are off to drywall, install cabinets and call for the countertop to be measured.
It means.....
The END is in real sight......that is if my heart survives it all...it's not been a good heart day at all...
I guess it is good they were kind enough to give us the conditional approval so we could go ahead and insulate and be ready to put up drywall on Tuesday.... Electrical passed yesterday...finally...so we can put in the outlets and lights and enjoy the fruits of the last 5 months of our labor.
It will be a busy weekend.
Then we are off to drywall, install cabinets and call for the countertop to be measured.
It means.....
The END is in real sight......that is if my heart survives it all...it's not been a good heart day at all...
Thursday, September 30, 2010
Hump Day
Wednesday, yes, I realize it's already Thursday, well in my time zone anyway....however today really hasn't "happened" yet even though I am up and about.
A med change....the cardiologist called me at work Tuesday, evidently whatever went on with my ticker over the weekend was not a good thing and really indicated the medication was not working the way it should have any longer...so we are trying the "next" med. My body is VERY sensitive to these meds, so we are starting out lower than the recommended dose. Before "we" realized this, I was on one that nearly put me in the hospital. I think if my GP had not intervened and demanded to speak with the dr vs the nurse it is exactly where I would have ended up. Thankfully, my GP knows that I know my body and knows when I say something isn't right and it must be the new med, generally, I am right. My cardio now knows the same about me...so we start out slow and gradually increase to try and avoid side effects.
I am thinking 24 hours into the new drug that I am not liking it, but I will give it one week. I go for another EKG next Wednesday. Off the flecanide I did sleep better last night and my breathing was easier, however, after three good doses of rhythmol, here I sit at nearly 3 am and I have been up with strange symptoms since midnight. My head feels like it is spinning, and it is worse when I am laying down. I guess I could sleep sitting up...but when I have tried that in the past, I end up sideways anyway. I've got some right side weakness too, so that is a little diconcerting, but it only happens with the dizzy spells...or loose brain attacks as we have come to call them around here. They are just more frequent now than they ever used to be. We are trying to determine if these are actually related to the heart conditions, or if the heart condition is in some way causing mini TIA's, or if this is totally a new, neurological issue. My heartbeat is definitely more irregular. Time...it's all a waiting game.
I have yet to sew this week, although I did put some lucious fabrics into my "cart" at Fabric.com while I was sitting here.
Yesterday the case manager called to "explain" about case management...it's ok dude...not sure we plan to keep you anyway...that is a whole other issue...I have a list of complaints to tackle with an Easter Seals supervisor on that one. I left him on hold because he called at work with a non-emergency question, and I had kids in the office to deal with. He was concerned I believe about a treatment team meeting we set up...w/o him. Sorry...the job wasn't getting done and I was having to be too squeaky of a wheel. I'm also tired of hearing that my son has too high of an IQ. I don't care how high his IQ is, if he can't function at home safely without 24 hour 1:1 supervision, then we need help. Autism is not a fun thing, couple it with bi-polar and it can be and often is unmanageable...add in a brain injury and it spells disaster in real life. Had we had the support for his autism we needed when we needed it w/o out the debate over exactly what kind of autism it was, w/o the arguement of school teachers trying to diagnose ADHD that is non-existent (it's the brain injury that causes those symptoms), and w/o the county trying to then blame his "symptoms" solely on the mental health issue, I am certain we would be in a completely different place than we are right now. He would probably be at home functioning pretty well with needed supports and his siblings wouldn't be afraid of him. They love him, but don't try to leave them in a room alone with him...they freak because of past experiences and then he freaks because they freak. It's a sour snoball effect. It's sad. He's trapped, and so are we.
The twins are still sick. I am not sure if we need to see the ENT or just a new primary care provider for them. This one keeps giving them zithromax and seriously, Anna now sounds like she is developing pneumonia. They are both still running low grade fevers which would go right along with the pneumonia theory for them. We cannot go 3 months without them getting sick and usually go through at least 3 different antibiotics before we see any relief and they usually miss at least a week of school each time. I will have to call the drs again tomorrow. Anna has been up twice tonight coughing until she tossed her cookies. It hurts. I know it hurts her, and it hurts me to watch her. I can't fix it.
Soon there will be an upper post....there has to be.....this is depressing me just reading what I wrote
A med change....the cardiologist called me at work Tuesday, evidently whatever went on with my ticker over the weekend was not a good thing and really indicated the medication was not working the way it should have any longer...so we are trying the "next" med. My body is VERY sensitive to these meds, so we are starting out lower than the recommended dose. Before "we" realized this, I was on one that nearly put me in the hospital. I think if my GP had not intervened and demanded to speak with the dr vs the nurse it is exactly where I would have ended up. Thankfully, my GP knows that I know my body and knows when I say something isn't right and it must be the new med, generally, I am right. My cardio now knows the same about me...so we start out slow and gradually increase to try and avoid side effects.
I am thinking 24 hours into the new drug that I am not liking it, but I will give it one week. I go for another EKG next Wednesday. Off the flecanide I did sleep better last night and my breathing was easier, however, after three good doses of rhythmol, here I sit at nearly 3 am and I have been up with strange symptoms since midnight. My head feels like it is spinning, and it is worse when I am laying down. I guess I could sleep sitting up...but when I have tried that in the past, I end up sideways anyway. I've got some right side weakness too, so that is a little diconcerting, but it only happens with the dizzy spells...or loose brain attacks as we have come to call them around here. They are just more frequent now than they ever used to be. We are trying to determine if these are actually related to the heart conditions, or if the heart condition is in some way causing mini TIA's, or if this is totally a new, neurological issue. My heartbeat is definitely more irregular. Time...it's all a waiting game.
I have yet to sew this week, although I did put some lucious fabrics into my "cart" at Fabric.com while I was sitting here.
Yesterday the case manager called to "explain" about case management...it's ok dude...not sure we plan to keep you anyway...that is a whole other issue...I have a list of complaints to tackle with an Easter Seals supervisor on that one. I left him on hold because he called at work with a non-emergency question, and I had kids in the office to deal with. He was concerned I believe about a treatment team meeting we set up...w/o him. Sorry...the job wasn't getting done and I was having to be too squeaky of a wheel. I'm also tired of hearing that my son has too high of an IQ. I don't care how high his IQ is, if he can't function at home safely without 24 hour 1:1 supervision, then we need help. Autism is not a fun thing, couple it with bi-polar and it can be and often is unmanageable...add in a brain injury and it spells disaster in real life. Had we had the support for his autism we needed when we needed it w/o out the debate over exactly what kind of autism it was, w/o the arguement of school teachers trying to diagnose ADHD that is non-existent (it's the brain injury that causes those symptoms), and w/o the county trying to then blame his "symptoms" solely on the mental health issue, I am certain we would be in a completely different place than we are right now. He would probably be at home functioning pretty well with needed supports and his siblings wouldn't be afraid of him. They love him, but don't try to leave them in a room alone with him...they freak because of past experiences and then he freaks because they freak. It's a sour snoball effect. It's sad. He's trapped, and so are we.
The twins are still sick. I am not sure if we need to see the ENT or just a new primary care provider for them. This one keeps giving them zithromax and seriously, Anna now sounds like she is developing pneumonia. They are both still running low grade fevers which would go right along with the pneumonia theory for them. We cannot go 3 months without them getting sick and usually go through at least 3 different antibiotics before we see any relief and they usually miss at least a week of school each time. I will have to call the drs again tomorrow. Anna has been up twice tonight coughing until she tossed her cookies. It hurts. I know it hurts her, and it hurts me to watch her. I can't fix it.
Soon there will be an upper post....there has to be.....this is depressing me just reading what I wrote
Monday, September 27, 2010
GAAAKKKKK
The twins have strep, AGAIN. We may seriously have to consider returning to the ENT :(
It was a wild day at school....well, so was Friday for that matter...but that is all I *can* say.
Got a call from FACT and Jamie has already attempted to "go after" someone there. This is a good thing though...it just means the real work can begin. They were actually calling to set up a treatment team meeting and wanted to know if we wanted to include our "local" case manager...ummmmm....no...not really....
We had Boston Market for dinner. It was yummy, but it's been a real pain to order ahead from them the last couple of days.
I have a headache...I think it's humidity....
It was a wild day at school....well, so was Friday for that matter...but that is all I *can* say.
Got a call from FACT and Jamie has already attempted to "go after" someone there. This is a good thing though...it just means the real work can begin. They were actually calling to set up a treatment team meeting and wanted to know if we wanted to include our "local" case manager...ummmmm....no...not really....
We had Boston Market for dinner. It was yummy, but it's been a real pain to order ahead from them the last couple of days.
I have a headache...I think it's humidity....
Sunday, September 26, 2010
It's Sunday
We did not make it to church again today...lots of reasons, the biggest being that we woke up late again :( We MUST get back into the habit, so DH and I have decided October is start over month...lol.
It's probably pretty good we didn't go. After I got up and got moving around, I developed a wicked headache. Thinking it was mostly an allergy type thing, and not being able to take allergy meds like most normal people can do, I was trying to wait it out. I think I waited a little too long...my heart went off again, slowed it self down...dizziness sets in, and then it went off again...I'm ok with a once in a while job, but this back to back crud has to stop and it seems like it is worse since they upped the meds that are supposed to be regulating it. I had to use one of the manual cardio conversion techniques to get it to stop. DH and the kids were at the hardware store and I was in front of the computer. I could understand it getting out of whack if I were really doing something, but seriously, I was simply sitting and reading...that's pretty sad.
After DH and the kids got home, and my heart had sufficiently settled and stayed that way, I took three of the shingles and finished off the roof. OK..I know...wacky heart beat and dizziness and roofing don't go together, but it had really normalized itself. Besides, it was getting ready to rain...which it is doing a great blessed deal of right this moment, and the roof is now done :) Well, that is, except for the underside where they have decided we have to have baffles to keep the air flow....would be fine if we had vents in our soffetts but we don't because this is a house from 1970 and they did not put vents in the soffetts then. They didn't put in ridge vents either, but we did that modification across the whole darn peak of the roof and it looks good!! So, the addition no longer looks like an addition except for a slight difference in the color of the shingles, but it's only really noticeable from a close up angle and considering we were matching 40 year old shingles we think we did pretty darn good.
I really have to get some sewing done this evening. We had plans to go to the movies with the kids this evening, but dear little Anna has herself yet another wicked sore throat. She is very hoarse, poor baby, but not feverish...so daddy will probably be taking her to the drs tomorrow as her throat is not looking promising. Zachary is in a mood because of the movie delay :(
We must get the electrical done this evening as well. I will have to ask for the supervisor to come out because it's just not making sense some of the things they are asking for us to do. The plans were approved, we have done them as they were drawn...I don't get the issues.
My headache is coming back...not a good sign...I read yesterday about TIA's, head aches and atrial fibrilation...sometimes the internet is not a good thing...having knowledge so handy can be helpful, or harmful....
It's probably pretty good we didn't go. After I got up and got moving around, I developed a wicked headache. Thinking it was mostly an allergy type thing, and not being able to take allergy meds like most normal people can do, I was trying to wait it out. I think I waited a little too long...my heart went off again, slowed it self down...dizziness sets in, and then it went off again...I'm ok with a once in a while job, but this back to back crud has to stop and it seems like it is worse since they upped the meds that are supposed to be regulating it. I had to use one of the manual cardio conversion techniques to get it to stop. DH and the kids were at the hardware store and I was in front of the computer. I could understand it getting out of whack if I were really doing something, but seriously, I was simply sitting and reading...that's pretty sad.
After DH and the kids got home, and my heart had sufficiently settled and stayed that way, I took three of the shingles and finished off the roof. OK..I know...wacky heart beat and dizziness and roofing don't go together, but it had really normalized itself. Besides, it was getting ready to rain...which it is doing a great blessed deal of right this moment, and the roof is now done :) Well, that is, except for the underside where they have decided we have to have baffles to keep the air flow....would be fine if we had vents in our soffetts but we don't because this is a house from 1970 and they did not put vents in the soffetts then. They didn't put in ridge vents either, but we did that modification across the whole darn peak of the roof and it looks good!! So, the addition no longer looks like an addition except for a slight difference in the color of the shingles, but it's only really noticeable from a close up angle and considering we were matching 40 year old shingles we think we did pretty darn good.
I really have to get some sewing done this evening. We had plans to go to the movies with the kids this evening, but dear little Anna has herself yet another wicked sore throat. She is very hoarse, poor baby, but not feverish...so daddy will probably be taking her to the drs tomorrow as her throat is not looking promising. Zachary is in a mood because of the movie delay :(
We must get the electrical done this evening as well. I will have to ask for the supervisor to come out because it's just not making sense some of the things they are asking for us to do. The plans were approved, we have done them as they were drawn...I don't get the issues.
My headache is coming back...not a good sign...I read yesterday about TIA's, head aches and atrial fibrilation...sometimes the internet is not a good thing...having knowledge so handy can be helpful, or harmful....
Saturday, September 25, 2010
Another try....
So, it's Saturday and Jamie has been at FACT since Monday afternoon. His move there went relatively well, despite the fact that many of his belongings are still there. They were supposed to have been shipped to us, and as ready as they seemed at Camelot to be rid of him (well, maybe us as his parents) you would think that they would have had everything ready for him in one spot...but we have yet to receive anything from them at all. Not even a follow up call.
All of that said, there was a lot that went into him being where he is now. It is the place that we had originally wanted him to go to straight from the hospital, but they didn't have a bed available. Well, that's not totally true...a bed was coming available, but then with all the State budget cuts, that poor child's next placement fell through, so he was stuck and so was Jamie. Sadly, it became very clear that Camelot was not all we thought, or had hoped, it to be, so when they started talking discharge we ran with it, even though we did not understand why? It's clear he still needs intensive treatment in a small group setting. Please continue to pray that "this" facility will be able to help.
As for the rest of the group....
Randy, our eldest son, is now in the US Air Force and doing very well!
Kyle, is a sophomore in college, and finished his freshman year with Straight A's. Yes, momma is very proud.
Ian is a senior this year...where has the time gone.
Zach and Anna are in 2nd grade and doing really well. Zach's speech is progressing along. For the first time they are in separate classes. It was a little rough at the beginning of the first quarter, but they have both adjusted and are making friends in their respective classes. It helps that they both knew most of the other children having been either in kindergarten or 1st grade with them. They take martial arts at a local facility called Apex Hapkido ( http://apexhapkido.com/ ). We LOVE it there. It is a very special place with a very unique atmosphere you will not find anywhere else.
The older girls are doing well and still live locally.
We are still mid construction with the kitchen remodel. Gary is supposed to have foot fusion surgery at the end of October, but it looks as if that will be postponed until late spring, early summer as he has a shoulder that needs attention and time to heal so that he will be able to use crutches after the foot surgery. This weekend we hope to finish up the roof, electrical, and framing and get all of those inspections done and passed on Monday of next week. Of course we have been saying that for several weeks now...LOL. It's the little tweaks that keep getting us.
I'll try to get some pictures up soon of some of the changes. It will be nice to have it all done and have a fully functional kitchen again and not be tripping over extension cords all the time.
We got Anna's hair cut relatively short...it's just above her shoulders. I could not go full bob with her...I had to be able to do a pony tail at least somewhere on her head.
Sewing, ha! What's that? I have so much to do it's not funny. I have been relagated to making bday gifts for the kids friends birthday parties. The kids really need some fall clothes. I hope to get some sewing in this weekend after construction work is done. They are both high priority though. I have also been travelling back and forth to the cardiologist as this beloved ticker of mine is acting wacko again. I'm on yet another month of cardio monitoring...that is, if I can withstand the itch from the reaction to the sticky pads I have to wear. So much for fair sensitive skin...it's now red and scaley...parts of me feel like an alligator.
We did take a break over Labor Day weekend and travelled to Williamsburg and did the "timeshare" thing. We also took Ian and the twins to Water Country, USA the last day we were there. Then we took the kids to Noni and PawPaw's and surprised them.
All of that said, there was a lot that went into him being where he is now. It is the place that we had originally wanted him to go to straight from the hospital, but they didn't have a bed available. Well, that's not totally true...a bed was coming available, but then with all the State budget cuts, that poor child's next placement fell through, so he was stuck and so was Jamie. Sadly, it became very clear that Camelot was not all we thought, or had hoped, it to be, so when they started talking discharge we ran with it, even though we did not understand why? It's clear he still needs intensive treatment in a small group setting. Please continue to pray that "this" facility will be able to help.
As for the rest of the group....
Randy, our eldest son, is now in the US Air Force and doing very well!
Kyle, is a sophomore in college, and finished his freshman year with Straight A's. Yes, momma is very proud.
Ian is a senior this year...where has the time gone.
Zach and Anna are in 2nd grade and doing really well. Zach's speech is progressing along. For the first time they are in separate classes. It was a little rough at the beginning of the first quarter, but they have both adjusted and are making friends in their respective classes. It helps that they both knew most of the other children having been either in kindergarten or 1st grade with them. They take martial arts at a local facility called Apex Hapkido ( http://apexhapkido.com/ ). We LOVE it there. It is a very special place with a very unique atmosphere you will not find anywhere else.
The older girls are doing well and still live locally.
We are still mid construction with the kitchen remodel. Gary is supposed to have foot fusion surgery at the end of October, but it looks as if that will be postponed until late spring, early summer as he has a shoulder that needs attention and time to heal so that he will be able to use crutches after the foot surgery. This weekend we hope to finish up the roof, electrical, and framing and get all of those inspections done and passed on Monday of next week. Of course we have been saying that for several weeks now...LOL. It's the little tweaks that keep getting us.
I'll try to get some pictures up soon of some of the changes. It will be nice to have it all done and have a fully functional kitchen again and not be tripping over extension cords all the time.
We got Anna's hair cut relatively short...it's just above her shoulders. I could not go full bob with her...I had to be able to do a pony tail at least somewhere on her head.
Sewing, ha! What's that? I have so much to do it's not funny. I have been relagated to making bday gifts for the kids friends birthday parties. The kids really need some fall clothes. I hope to get some sewing in this weekend after construction work is done. They are both high priority though. I have also been travelling back and forth to the cardiologist as this beloved ticker of mine is acting wacko again. I'm on yet another month of cardio monitoring...that is, if I can withstand the itch from the reaction to the sticky pads I have to wear. So much for fair sensitive skin...it's now red and scaley...parts of me feel like an alligator.
We did take a break over Labor Day weekend and travelled to Williamsburg and did the "timeshare" thing. We also took Ian and the twins to Water Country, USA the last day we were there. Then we took the kids to Noni and PawPaw's and surprised them.
Sunday, March 14, 2010
So I missed on my resolution...
It's been a crazy month. After Jamie's article came out, well, really in the midst of it, we got word Jamie was getting approval to go to Camelot. We are SOOOOOOOOOOO excited!!!
We picked him up on a Sunday afternoon from the hospital and we left 6 hours later to head to Camelot. We arrived early in the am and checked into the motel, and met the admissions coordinator a few hours later. To say that Gary and I were wiped is an understatement!! The twins and Ian were awesome...Ian especially.
We know that we have made the best decision possible, as hard as it was to leave him where he is. Camelot was amazing. He has his own room...and it's good sized as well. It's super structured and very nicely staffed. His "classroom" teacher was amazing and his class consists of seven other children. We were so relieved to find they really were all that they had said they were.
We talk with Jamie by phone three times a week...and with the therapists on a weekly basis. We will visit monthly. We are leaving to go and see him Thursday night :) and even Ian and the twins are excited. Of course...that could have something to do with the "breakfast bar" that is at the motel where we will be staying....LOL... It has clearly been a LONG while since I had stayed in a motel...They now have belgian waffle makers as part of continenetal breakfasts.
So...since Jamie was safe, the tax refund came in and we went and purchased a new bed...and new fangled foot and back massagers...and Gary told me to go ahead and get a "Featherweight" that I had seen on glorious Craigslist. I have already made a quilt top which will probably become Jamie's. The funny (or sad depending on how you choose to look at it) is that the quilt top pieces were cut about 18 years ago and have sat in ziploc bags all this time. The Featherweight came with it's own little quilting foot and I was set on fire. It also came with two cases, the original antique one, that has broken clasp locks and a new antique reproduction one. There were ALOT of feet/accessories that came with this machine too. I probably paid a "tad" too much for the machine, but all the restoration grunt work was done, and while that part is often the most fun...I wanted a machine that I could EASILY take with me when we travel...and now I have that. It was worth that little extra...and that fact that it came from a quilter...oh just that much sweeter.
You can see a Featherweight here http://featherweight221.com/ . I love the little table that folds up on it for storage.
I have a new quilting task at hand. I mentioned earlier that we got our new bed. It arrived yesterday. It was supposed to be here last week, and it was also supposed to have arrived shortly after 9 am yesterday but that didn't happen either....lol. Anyway...Gary got a wild hair and decided we needed to paint our bedroom...he got this "idea" at 8 pm Friday night...LOL One might learn that I usually follow his wild hair ideas....lol So off we went to Lowe's to pick out paint colors, buy the paint...came home rummaged through the shed in the rain to get the paint supplies out...and we painted. ALL NIGHT LONG. We had dark blue on our walls so we had to prime first. However, with all the crazies with jamie and getting him placed...household organization has taken a back seat to everything...well...half the bedroom is now organized...the other half...well...it still had to be painted...so it will happen.
I have to make a quilt to go with the new colors...and choose a pattern too :)
WE NEEDED THIS. It is a back to "us" type of thing. We find the paint color names amusing. We put "Honesty" on the wall the bed faces...lol...our therapist will have a field day with that one :) The other walls we have "Misty Surf". We did chose equally amusing color names for the family room...one of them is "lettuce" . The "WE" things......and the therapist told us just this week not to let things go "boring" because Jamie is settled...LOL....as I said...she will have a field day with this one :) but all in a good way...
We picked him up on a Sunday afternoon from the hospital and we left 6 hours later to head to Camelot. We arrived early in the am and checked into the motel, and met the admissions coordinator a few hours later. To say that Gary and I were wiped is an understatement!! The twins and Ian were awesome...Ian especially.
We know that we have made the best decision possible, as hard as it was to leave him where he is. Camelot was amazing. He has his own room...and it's good sized as well. It's super structured and very nicely staffed. His "classroom" teacher was amazing and his class consists of seven other children. We were so relieved to find they really were all that they had said they were.
We talk with Jamie by phone three times a week...and with the therapists on a weekly basis. We will visit monthly. We are leaving to go and see him Thursday night :) and even Ian and the twins are excited. Of course...that could have something to do with the "breakfast bar" that is at the motel where we will be staying....LOL... It has clearly been a LONG while since I had stayed in a motel...They now have belgian waffle makers as part of continenetal breakfasts.
So...since Jamie was safe, the tax refund came in and we went and purchased a new bed...and new fangled foot and back massagers...and Gary told me to go ahead and get a "Featherweight" that I had seen on glorious Craigslist. I have already made a quilt top which will probably become Jamie's. The funny (or sad depending on how you choose to look at it) is that the quilt top pieces were cut about 18 years ago and have sat in ziploc bags all this time. The Featherweight came with it's own little quilting foot and I was set on fire. It also came with two cases, the original antique one, that has broken clasp locks and a new antique reproduction one. There were ALOT of feet/accessories that came with this machine too. I probably paid a "tad" too much for the machine, but all the restoration grunt work was done, and while that part is often the most fun...I wanted a machine that I could EASILY take with me when we travel...and now I have that. It was worth that little extra...and that fact that it came from a quilter...oh just that much sweeter.
You can see a Featherweight here http://featherweight221.com/ . I love the little table that folds up on it for storage.
I have a new quilting task at hand. I mentioned earlier that we got our new bed. It arrived yesterday. It was supposed to be here last week, and it was also supposed to have arrived shortly after 9 am yesterday but that didn't happen either....lol. Anyway...Gary got a wild hair and decided we needed to paint our bedroom...he got this "idea" at 8 pm Friday night...LOL One might learn that I usually follow his wild hair ideas....lol So off we went to Lowe's to pick out paint colors, buy the paint...came home rummaged through the shed in the rain to get the paint supplies out...and we painted. ALL NIGHT LONG. We had dark blue on our walls so we had to prime first. However, with all the crazies with jamie and getting him placed...household organization has taken a back seat to everything...well...half the bedroom is now organized...the other half...well...it still had to be painted...so it will happen.
I have to make a quilt to go with the new colors...and choose a pattern too :)
WE NEEDED THIS. It is a back to "us" type of thing. We find the paint color names amusing. We put "Honesty" on the wall the bed faces...lol...our therapist will have a field day with that one :) The other walls we have "Misty Surf". We did chose equally amusing color names for the family room...one of them is "lettuce" . The "WE" things......and the therapist told us just this week not to let things go "boring" because Jamie is settled...LOL....as I said...she will have a field day with this one :) but all in a good way...
Monday, January 18, 2010
Productivity
So it's been a pretty productive weekend even if I didn't accomplish all I had planned...all I have done has turned out well, and that is all that matters... And to boot...one room in the house is really clean...really really clean....like the baseboards got vaccuumed and everything....well, the windows didn't get washed, but I did beat the drapes :) and the fireplace is clean again too!
I did some sewing...more embroidery with a machine that scares the beans out of me...but us in the office at work will now have "mostly" matching shirts and all matching embroidery. I was minus two shirts, so I had to go and get those today and since I bought the others this time last year, they don't have the same one's out...so they are similar, but not exact...but will do. I was pretty pleased with how the embroidery turned out. They are all in the wash now so they are nice and fresh when I take them in tomorrow....
I got Miss Anna some things cut out and will hopefully get at least two things sewn tonight :) I need to get upstairs and get their room finished organized....it should only take another half hour and that would be two really clean rooms :) The room by room things is exciting me, can you tell. It's odd what I do with a day off...really odd.
Today we also went to Toys"R" Us. They were OUT of ZhuZhu Pets...the twins want those for their birthday. I also got some other ideas for gifts for their birthdays.
I got an email from the Social Worker at the hospital. I will have to call that one treatment center tomorrow during my lunch for them. It doesn't usually take much other than me asking what they need to know to send a denial letter because my son will not be coming to their facility. It is insane that these places take on kids that they have no business touching just because of the "secure" insurance dollars filling a vacant bed. It's frustrating they are apparently not out there to truly help, but rather to make the almightly dollar. Thank you but no thank you....no more band-aids for our son...NONE...and the dr agrees. He needs a very specialized plan...but I will call tomorrow and get them to send the denial letter...some how...some way.
Dinner was fast and easy....Hamburger Helper with a salad. Used up the chunk of beef left from tacos last night as well as the shredded lettuce...
Church was awesome as usual....Sunday School hit a nail on the head and put into words some things I had been mulling over in my heart and my head and put some peace into my heart as well. Now, if I can regurgitate it to get someone else to understand it, things will be very good! You see, I don't deal well with two-faced people...you know people who act one way in front of you, but as soon as you turn your back say completely backwards thoughts...well, I shouldn't say I don't deal well with them, I simply choose not to have them in my life....just because I choose not to set myself up for the hurt and pain that is caused by such people, doesn't mean I haven't forgiven them...but in the same light, just because I have forgiven their "trespasses" against me, doesn't mean that the "relationship" is restored or that it has to be restored...and it set to peace in my heart that it really is OK that this is the case. Sometimes it is OK to choose not to have certain people in your life if all they do is cause pain in some form or fashion. This all came out of one lesson in a class that DH and I are taking called "Blessed are the Peacemakers". It's a shame he was in NY with his extended family instead of hearing this in class...I truly can't wait for next week...or for our Wednesday night class "The Power of We". It's all good stuff...very good stuff... :) The other thought it brought to mind was something that was shared with me a while back....it's like picking a sore...it heals, but if you pick at it, it will bleed again...but it will also heal...and then if picked at bleed...and so on and so forth...sometimes it takes putting a wall between you and the sore to protect everyone/thing invovled...When someone/thing continually does the same thing over and over again...it's just like picking a scab off a sore...and sometimes the only way for it to heal is to make sure it can't be picked....
I'm now officially rambling...but maybe it provided good thought :)
I did some sewing...more embroidery with a machine that scares the beans out of me...but us in the office at work will now have "mostly" matching shirts and all matching embroidery. I was minus two shirts, so I had to go and get those today and since I bought the others this time last year, they don't have the same one's out...so they are similar, but not exact...but will do. I was pretty pleased with how the embroidery turned out. They are all in the wash now so they are nice and fresh when I take them in tomorrow....
I got Miss Anna some things cut out and will hopefully get at least two things sewn tonight :) I need to get upstairs and get their room finished organized....it should only take another half hour and that would be two really clean rooms :) The room by room things is exciting me, can you tell. It's odd what I do with a day off...really odd.
Today we also went to Toys"R" Us. They were OUT of ZhuZhu Pets...the twins want those for their birthday. I also got some other ideas for gifts for their birthdays.
I got an email from the Social Worker at the hospital. I will have to call that one treatment center tomorrow during my lunch for them. It doesn't usually take much other than me asking what they need to know to send a denial letter because my son will not be coming to their facility. It is insane that these places take on kids that they have no business touching just because of the "secure" insurance dollars filling a vacant bed. It's frustrating they are apparently not out there to truly help, but rather to make the almightly dollar. Thank you but no thank you....no more band-aids for our son...NONE...and the dr agrees. He needs a very specialized plan...but I will call tomorrow and get them to send the denial letter...some how...some way.
Dinner was fast and easy....Hamburger Helper with a salad. Used up the chunk of beef left from tacos last night as well as the shredded lettuce...
Church was awesome as usual....Sunday School hit a nail on the head and put into words some things I had been mulling over in my heart and my head and put some peace into my heart as well. Now, if I can regurgitate it to get someone else to understand it, things will be very good! You see, I don't deal well with two-faced people...you know people who act one way in front of you, but as soon as you turn your back say completely backwards thoughts...well, I shouldn't say I don't deal well with them, I simply choose not to have them in my life....just because I choose not to set myself up for the hurt and pain that is caused by such people, doesn't mean I haven't forgiven them...but in the same light, just because I have forgiven their "trespasses" against me, doesn't mean that the "relationship" is restored or that it has to be restored...and it set to peace in my heart that it really is OK that this is the case. Sometimes it is OK to choose not to have certain people in your life if all they do is cause pain in some form or fashion. This all came out of one lesson in a class that DH and I are taking called "Blessed are the Peacemakers". It's a shame he was in NY with his extended family instead of hearing this in class...I truly can't wait for next week...or for our Wednesday night class "The Power of We". It's all good stuff...very good stuff... :) The other thought it brought to mind was something that was shared with me a while back....it's like picking a sore...it heals, but if you pick at it, it will bleed again...but it will also heal...and then if picked at bleed...and so on and so forth...sometimes it takes putting a wall between you and the sore to protect everyone/thing invovled...When someone/thing continually does the same thing over and over again...it's just like picking a scab off a sore...and sometimes the only way for it to heal is to make sure it can't be picked....
I'm now officially rambling...but maybe it provided good thought :)
Saturday, January 16, 2010
One Center Away
I got a call late Thursday that we were simply ONE center away and I might have to make another call to get that one to send their denial letter. I haven't heard anything since...so we might actually be ready to submit the out of state compact agreement.
I have lots of mixed emotions about this still. I know it is what is best and what is needed...but it will be odd to have my son living in an entirely different state!!! I went to see him last night and he has come to terms with it all. It was funny though because when I was talking to the orderly walking me up...the one that is always there...and mentioned it getting closer...he commented on how strange it would be not to have Jamie roaming the unit. Gotta figure after nearly three months it's like losing an employee or something...
The twins have a birthday party today so I have to go get busy making gifts...and pray I get done....luckily the party is only about 5 minutes from the house...
I have lots of mixed emotions about this still. I know it is what is best and what is needed...but it will be odd to have my son living in an entirely different state!!! I went to see him last night and he has come to terms with it all. It was funny though because when I was talking to the orderly walking me up...the one that is always there...and mentioned it getting closer...he commented on how strange it would be not to have Jamie roaming the unit. Gotta figure after nearly three months it's like losing an employee or something...
The twins have a birthday party today so I have to go get busy making gifts...and pray I get done....luckily the party is only about 5 minutes from the house...
Thursday, December 31, 2009
The last day of yet another decade
Hard to believe that this is the last day of yet another year, but even more so, yet another decade...
What's happened to the time...
I moved...
Had twins...YIKES!
Got married again...and didn't have a honeymoon... :(
Bought and sold too many cars...
Bought a house...
Started a blog...something I never thought I'd do....
Changed jobs four times within the same organization...
Found a wonderful church home...
Changed my sewing room around more times than I can count on my fingers and my toes...
Too many UFO's ... (unfinished objects for those that don't sew)...
Got a Facebook page...another never thought I'd do that...
Hopefully more than halfway to getting Jamie to a place that can really help...
Gotten more outspoken publicly about how cruddy the services for kids like him really are...
Helped finish an addition on the house after DH had back surgury because it had to be finished...
Learned more about self-employment that I didn't like....
And a whole bunch more stuff too....but this is getting lengthy....
One of these days I will figure out how to get this thing to show pictures at the top in the slideshow box....
That can go in the resolutions file...along with keeping the kids well because this year alone has been awful....seven bouts of strep and we are now doctoring the third documented case of pneumonia...
Maybe the house is making us sick???? It still needs new drywall and major insulation improvements...and windows...and roof work...and...and..and.... Good thing there is another decade starting...
What's happened to the time...
I moved...
Had twins...YIKES!
Got married again...and didn't have a honeymoon... :(
Bought and sold too many cars...
Bought a house...
Started a blog...something I never thought I'd do....
Changed jobs four times within the same organization...
Found a wonderful church home...
Changed my sewing room around more times than I can count on my fingers and my toes...
Too many UFO's ... (unfinished objects for those that don't sew)...
Got a Facebook page...another never thought I'd do that...
Hopefully more than halfway to getting Jamie to a place that can really help...
Gotten more outspoken publicly about how cruddy the services for kids like him really are...
Helped finish an addition on the house after DH had back surgury because it had to be finished...
Learned more about self-employment that I didn't like....
And a whole bunch more stuff too....but this is getting lengthy....
One of these days I will figure out how to get this thing to show pictures at the top in the slideshow box....
That can go in the resolutions file...along with keeping the kids well because this year alone has been awful....seven bouts of strep and we are now doctoring the third documented case of pneumonia...
Maybe the house is making us sick???? It still needs new drywall and major insulation improvements...and windows...and roof work...and...and..and.... Good thing there is another decade starting...
Tuesday, December 29, 2009
2010...I promise to do better
Good golly...where has the time gone...Christmas has come and gone and I have posted nothing since Thanksgiving time.
We are still not a whole lot closer to getting Jamie placed. We still have all the Level 4's to go. I have to call one or two who are being particularly difficult....maybe I will tackle that today since my "good" serger seems to have gone on the fritz. I am hoping it is simply a power cord as suggested by my "friends" on http://www.sewingmamas.com/ . I love that site. A bunch of friendly, idea filled people. I even got major ideas for all those last minute gifts I had to make.
Anyway...I was going to go to The Hughes Center for Exceptional Children in Danville, VA, but in the process of getting the twins ready to leave the house to go and visit, they decided that no one under 13 was allowed on their campue. So, that has totally nixed the idea that Jamie might be able to be placed closely. It's sad that he will have to be 6.5 hours away. I'm not comfortable with him being that far away, but short of a spot opening up at FACT in Jacksonville, NC, we are stuck sending him to TN. The center in TN is awesome, don't get me wrong, and we will be very blessed by the services he will receive while he is there...it's just that is it so far away.
Christmas was a total fiasco with Jamie. We went Christmas day having been told by the dr that we could "carry" Jamie his presents, but it didn't happen that way. The receptionist at the desk doesn't seem to care to much for us. It's ok, her behavior has made the feeling pretty mutual. So upon leaving I called the dr on Christmas day. I suspect he was none to happy to have had his day interrputed by an upset parent. He said he would take care of it. The receptionist's attitude was no better the next day when we returned to have "special" visitation with Jamie so we could have "Christmas" with him a day late. She even ended up cursing at Gary. That issue remains to be settled. It just seems that the longer he is there, the more issues that arise.
Well....off to play with my serger with a mind of it's own....and promises to keep better postings...I think a daily dose of writing would do me well.....
We are still not a whole lot closer to getting Jamie placed. We still have all the Level 4's to go. I have to call one or two who are being particularly difficult....maybe I will tackle that today since my "good" serger seems to have gone on the fritz. I am hoping it is simply a power cord as suggested by my "friends" on http://www.sewingmamas.com/ . I love that site. A bunch of friendly, idea filled people. I even got major ideas for all those last minute gifts I had to make.
Anyway...I was going to go to The Hughes Center for Exceptional Children in Danville, VA, but in the process of getting the twins ready to leave the house to go and visit, they decided that no one under 13 was allowed on their campue. So, that has totally nixed the idea that Jamie might be able to be placed closely. It's sad that he will have to be 6.5 hours away. I'm not comfortable with him being that far away, but short of a spot opening up at FACT in Jacksonville, NC, we are stuck sending him to TN. The center in TN is awesome, don't get me wrong, and we will be very blessed by the services he will receive while he is there...it's just that is it so far away.
Christmas was a total fiasco with Jamie. We went Christmas day having been told by the dr that we could "carry" Jamie his presents, but it didn't happen that way. The receptionist at the desk doesn't seem to care to much for us. It's ok, her behavior has made the feeling pretty mutual. So upon leaving I called the dr on Christmas day. I suspect he was none to happy to have had his day interrputed by an upset parent. He said he would take care of it. The receptionist's attitude was no better the next day when we returned to have "special" visitation with Jamie so we could have "Christmas" with him a day late. She even ended up cursing at Gary. That issue remains to be settled. It just seems that the longer he is there, the more issues that arise.
Well....off to play with my serger with a mind of it's own....and promises to keep better postings...I think a daily dose of writing would do me well.....
Sunday, November 22, 2009
Another one of "those" days
Poor Jamie....
We did get "another" call from the hospital today. Jamie was put in isolation for near an hour for kicking a peer and a staff member (over his lunch tray) …so…it looks like he is not as stable as we thought…or anyone else for that matter. He's cycling again….first the argumentativeness kicks in, then the aggression comes on….his moods…well they will probably be way out of whack by mid week. They have rooms for that there. Here at our house, we have dented walls where he kicked and would bang his head. He tore the blinds out of the window in one fit. We are afraid he will go after a window some day and really get hurt. Can't put him in the only room in the house that doesn’t have windows either…that's two of the bathrooms and that's just plain not safe….not to mention that he weighs more than I do now and there is no way in one of his fits that I could control him enough to get him to his room where he could pitch a royal fit..
I wish I could move mountains to make what we KNOW needs to happen...to happen. I wish I could wave a magic wand and it all would be the way it needed to be.
It's one of those things....I know that God has gotten us this far with him...finally to a dr who won't give up until he can get to Jamie somewhere that has the best chance to help him be what God intended him to be... I have to keep the faith that this is all going to happen....I have to keep fighting for my son even if there is no fight left in me because he can't do it for himself.....
We did get "another" call from the hospital today. Jamie was put in isolation for near an hour for kicking a peer and a staff member (over his lunch tray) …so…it looks like he is not as stable as we thought…or anyone else for that matter. He's cycling again….first the argumentativeness kicks in, then the aggression comes on….his moods…well they will probably be way out of whack by mid week. They have rooms for that there. Here at our house, we have dented walls where he kicked and would bang his head. He tore the blinds out of the window in one fit. We are afraid he will go after a window some day and really get hurt. Can't put him in the only room in the house that doesn’t have windows either…that's two of the bathrooms and that's just plain not safe….not to mention that he weighs more than I do now and there is no way in one of his fits that I could control him enough to get him to his room where he could pitch a royal fit..
I wish I could move mountains to make what we KNOW needs to happen...to happen. I wish I could wave a magic wand and it all would be the way it needed to be.
It's one of those things....I know that God has gotten us this far with him...finally to a dr who won't give up until he can get to Jamie somewhere that has the best chance to help him be what God intended him to be... I have to keep the faith that this is all going to happen....I have to keep fighting for my son even if there is no fight left in me because he can't do it for himself.....
Saturday, November 21, 2009
It's been a long few days
We have had a couple of pretty intense meetings the past couple of days. The beginning of the week started off with Debbi receiving a phone call stating that the case manager had been told by the hospital's Social Worker that there was another upcoming court hearing next Thursday. We sort of knew that couldn't be correct because that would make it Thanksgiving, and the courts are closed that day.
So, we first had to tackle Jamie's IEP as if he were getting released, the way his IEP was written and the way the school was set up, Jamie was destined for immediate failure and we refuse to send him into that situation. So, we took the camcorder to the meeting, and had invited to the meeting, but not gotten confirmation back, from an autism specialist...and were very excited to see that she did indeed show up! Truly a blessing as not nearly as much would have been accomplished. Granted, there is still a LONG way to go, but it's getting workable. It's amazing how accountable people become when there will be a permanent record. But seriously, it did get tense, especially when one of the Sr. Administrator's for the county tried to tell me that Jamie wouldn't be taught on his grade level. I stopped her in her tracks. It is their job to teach him at his grade level in the setting in which he requires to show growth and success. I think the school finally realizes we are not going to back down. I am also equally as sure that they will be extremely excited to learn that they probably will not have to execute his IEP as he will probably go directly from the hospital to the residential setting.
We have received in writing a statement from the doctor, that he will not release Jamie to any program unless we as the parent's and him as the treating physician are in agreement that it is in Jamie's best interest. I was floored when my husband passed that to me in yesterdays meeting. After the meeting, and after all the confusion was dispelled, we got down to business... The email below is one we have sent to MANY legislators and news reporting professionals late last night/early this morning. It was suggested that due to the beauraucratic hoops that have to be jumped through to get a child placed out of state because no where in the state can truly help him, it would be a good idea to start lighting some major "political" fires. We know our son is not the ONLY child out there like this, and every child deserves the best chance he can have...
'We would be interested in talking with any or all of you about our son and our journey through the MH/DD/MR maze. He is a twelve year old autistic, bi-polar child with CP. We too, like the story of the McLeod family featured in the Cary News recently, have had major issues with Special Education services in Wake County Schools. I (the mom) am also in a bit of a precarious position as I work for the school system. However, our bigger beef is with the whole entire County and its lack of support to parents of children with special needs and the lack of access to appropriate medical care. Our son is currently hospitalized at Holly Hill (since 10/20/09) after becoming psychotic in his second "therapeutic" foster care home where he was placed to help him learn more appropriate behaviors. His first therapeutic foster placement ended rather abruptly because he suffered a broken arm and received no medical care for 10 days. That is a story all in itself. It was investigated by a neighboring counties CPS department and quickly squelched; we suspect because the "foster mom" was a Wake County CPS worker.
Jamie has no place to go within this state. He is stuck in Holly Hill, where in two weeks time he gained 20 lbs, his cholesterol levels have escalated, and caused further issues with his already weakened ankles that he has because of his Cerebral Palsy.
There is only ONE treatment facility in this state that could take him because of his dual diagnoses….but they are full and don't know when placement will open up because so many step down facilities have been closed due to the dramatic budget cuts within MR/DD/MH services.
What we had initially been told would be a three week process taking about 20 hours per week to complete, has grown into a six to 8 week process as we have now learned that we MUST receive a denial letter from EVERY treatment facility in NC that treats children Jamie's age, regardless of what they are designed to handle. If they take mentally retarded children only, we have to have a denial letter, even though Jamie's IQ is still well above that level. If they only take children with sexually deviant behavior, we have to get a denial letter. Most all of the facilities in NC treat children with Mental Retardation, which our son does not suffer from…his IQ is 103 at last testing earlier this spring, or majorly deviant type behavior, which again our son does not yet exhibit. He definitely can get out of control, but his behavior is far from deviant. If even one place says they have a bed and they are willing to take Jamie, not because they truly think they can help him, but because they are greedy for Medicaid $$, we have to either place him there and let it fail, or send him to the facility we have found out of state that can help him at our own expense. Now, even IF we get all 23 or so denial letters in writing, which requires submitting an admissions packet to each facility because they won't give you a written denial letter until you submit a packet, Medicaid may still deny him placement at Camelot for Kids in TN, even with the approval we have already been given by the LME (local management entity) for this type of long term level 4 placement. At this point we have to go to the DMA (sorry I did not catch what that acronym was for) to attempt to demand that the DMA insist that Medicaid pay for Jamie's treatment. Then once all that is done and approved, we have to have some "interstate compact agreement" signed off on by the legislator (whose name we were not told even though we asked), and that is another 80 page packet and can take up to another week and a half. North Carolina does not like to sign off on these agreements because the revenue expended remains outside of the state. However, they are doing nothing to provide appropriate treatment facilities within the state. In fact, many have been shut down leaving little to no wiggle room for a child as complex as our son.
We seriously understand why the case manager doesn't want to do it, but it is also seriously our son's ONLY hope at a REAL chance to become a successful individual in life. It MUST be done. There can be no more quick fixes for Jamie. His psyche can't handle it and frankly, neither can our families. Our son has been out of our home for most of the year, where we had NO clue of his living conditions. Turns out, at the last foster home in which he was placed through Caring Family Network, "his room" was what truly appears to have been an added on "storage" room with a mattress ON THE FLOOR…a mattress…no frame, no box spring…a mattress…in a room so crammed full of the foster family's "stuff" that the door would not open all the way. That is how our son lived and the foster family was getting paid a pretty penny to keep him from the insurance and we were getting billed on top of it!
My husband and I have decided it's time to go to the press and to seek the assistance of any attorney ready to take on the system…because it is all wrong. We are a blended family of eight on a limited income due to my husband being disabled due to a car accident some 18 years ago. Two of our other children are also on the "spectrum".
Some attention, somehow, someway, has to be brought to this. The doctor did tell us today he had never, in all of his 30+ years at the hospital, meet with parents so set on advocating for what was best for their child. Our thoughts on that were…."what happens to all those kids who do not have parents who either don't have the time, the ability or the where with all to stand up to the system and fight for what is good and right and appropriate"… Bottom-line, the system has to change, and services need to be more readily available for these higher functioning, complex children. Granted, Jamie is probably the most medically complex child you will ever meet along this spectrum, but we know we are not the only family facing these difficulties.
Our child can wait no more!"
SO, if any news reporter or political figure reads this blog, or if any lawyer interested in piloting change for the backwards system, wants to contact us, please do....we will respond and we will be your forefront. We are done with accepting that our child is "too complex". Whatever happened to the hypocratic oath these medical professionals take?
So, we first had to tackle Jamie's IEP as if he were getting released, the way his IEP was written and the way the school was set up, Jamie was destined for immediate failure and we refuse to send him into that situation. So, we took the camcorder to the meeting, and had invited to the meeting, but not gotten confirmation back, from an autism specialist...and were very excited to see that she did indeed show up! Truly a blessing as not nearly as much would have been accomplished. Granted, there is still a LONG way to go, but it's getting workable. It's amazing how accountable people become when there will be a permanent record. But seriously, it did get tense, especially when one of the Sr. Administrator's for the county tried to tell me that Jamie wouldn't be taught on his grade level. I stopped her in her tracks. It is their job to teach him at his grade level in the setting in which he requires to show growth and success. I think the school finally realizes we are not going to back down. I am also equally as sure that they will be extremely excited to learn that they probably will not have to execute his IEP as he will probably go directly from the hospital to the residential setting.
We have received in writing a statement from the doctor, that he will not release Jamie to any program unless we as the parent's and him as the treating physician are in agreement that it is in Jamie's best interest. I was floored when my husband passed that to me in yesterdays meeting. After the meeting, and after all the confusion was dispelled, we got down to business... The email below is one we have sent to MANY legislators and news reporting professionals late last night/early this morning. It was suggested that due to the beauraucratic hoops that have to be jumped through to get a child placed out of state because no where in the state can truly help him, it would be a good idea to start lighting some major "political" fires. We know our son is not the ONLY child out there like this, and every child deserves the best chance he can have...
'We would be interested in talking with any or all of you about our son and our journey through the MH/DD/MR maze. He is a twelve year old autistic, bi-polar child with CP. We too, like the story of the McLeod family featured in the Cary News recently, have had major issues with Special Education services in Wake County Schools. I (the mom) am also in a bit of a precarious position as I work for the school system. However, our bigger beef is with the whole entire County and its lack of support to parents of children with special needs and the lack of access to appropriate medical care. Our son is currently hospitalized at Holly Hill (since 10/20/09) after becoming psychotic in his second "therapeutic" foster care home where he was placed to help him learn more appropriate behaviors. His first therapeutic foster placement ended rather abruptly because he suffered a broken arm and received no medical care for 10 days. That is a story all in itself. It was investigated by a neighboring counties CPS department and quickly squelched; we suspect because the "foster mom" was a Wake County CPS worker.
Jamie has no place to go within this state. He is stuck in Holly Hill, where in two weeks time he gained 20 lbs, his cholesterol levels have escalated, and caused further issues with his already weakened ankles that he has because of his Cerebral Palsy.
There is only ONE treatment facility in this state that could take him because of his dual diagnoses….but they are full and don't know when placement will open up because so many step down facilities have been closed due to the dramatic budget cuts within MR/DD/MH services.
What we had initially been told would be a three week process taking about 20 hours per week to complete, has grown into a six to 8 week process as we have now learned that we MUST receive a denial letter from EVERY treatment facility in NC that treats children Jamie's age, regardless of what they are designed to handle. If they take mentally retarded children only, we have to have a denial letter, even though Jamie's IQ is still well above that level. If they only take children with sexually deviant behavior, we have to get a denial letter. Most all of the facilities in NC treat children with Mental Retardation, which our son does not suffer from…his IQ is 103 at last testing earlier this spring, or majorly deviant type behavior, which again our son does not yet exhibit. He definitely can get out of control, but his behavior is far from deviant. If even one place says they have a bed and they are willing to take Jamie, not because they truly think they can help him, but because they are greedy for Medicaid $$, we have to either place him there and let it fail, or send him to the facility we have found out of state that can help him at our own expense. Now, even IF we get all 23 or so denial letters in writing, which requires submitting an admissions packet to each facility because they won't give you a written denial letter until you submit a packet, Medicaid may still deny him placement at Camelot for Kids in TN, even with the approval we have already been given by the LME (local management entity) for this type of long term level 4 placement. At this point we have to go to the DMA (sorry I did not catch what that acronym was for) to attempt to demand that the DMA insist that Medicaid pay for Jamie's treatment. Then once all that is done and approved, we have to have some "interstate compact agreement" signed off on by the legislator (whose name we were not told even though we asked), and that is another 80 page packet and can take up to another week and a half. North Carolina does not like to sign off on these agreements because the revenue expended remains outside of the state. However, they are doing nothing to provide appropriate treatment facilities within the state. In fact, many have been shut down leaving little to no wiggle room for a child as complex as our son.
We seriously understand why the case manager doesn't want to do it, but it is also seriously our son's ONLY hope at a REAL chance to become a successful individual in life. It MUST be done. There can be no more quick fixes for Jamie. His psyche can't handle it and frankly, neither can our families. Our son has been out of our home for most of the year, where we had NO clue of his living conditions. Turns out, at the last foster home in which he was placed through Caring Family Network, "his room" was what truly appears to have been an added on "storage" room with a mattress ON THE FLOOR…a mattress…no frame, no box spring…a mattress…in a room so crammed full of the foster family's "stuff" that the door would not open all the way. That is how our son lived and the foster family was getting paid a pretty penny to keep him from the insurance and we were getting billed on top of it!
My husband and I have decided it's time to go to the press and to seek the assistance of any attorney ready to take on the system…because it is all wrong. We are a blended family of eight on a limited income due to my husband being disabled due to a car accident some 18 years ago. Two of our other children are also on the "spectrum".
Some attention, somehow, someway, has to be brought to this. The doctor did tell us today he had never, in all of his 30+ years at the hospital, meet with parents so set on advocating for what was best for their child. Our thoughts on that were…."what happens to all those kids who do not have parents who either don't have the time, the ability or the where with all to stand up to the system and fight for what is good and right and appropriate"… Bottom-line, the system has to change, and services need to be more readily available for these higher functioning, complex children. Granted, Jamie is probably the most medically complex child you will ever meet along this spectrum, but we know we are not the only family facing these difficulties.
Our child can wait no more!"
SO, if any news reporter or political figure reads this blog, or if any lawyer interested in piloting change for the backwards system, wants to contact us, please do....we will respond and we will be your forefront. We are done with accepting that our child is "too complex". Whatever happened to the hypocratic oath these medical professionals take?
Thursday, November 19, 2009
We must find a way....
to get Jamie here and to get the insurance to agree to pay for it....
http://www.camelotforkids.org/tennessee.html
it is a six hour trip from here, but it is the ONE place that meets all of his needs....they now say that a LEGISLATOR has to sign off on it before it can happen....can you guess where I will be on the wednesday before thanksgiving...yep you guessed it...I'll be at the capitol bldg busting down doors....someone has to listen to what a horrid job they have done at handling this states mental health and DD services!!!
http://www.camelotforkids.org/tennessee.html
it is a six hour trip from here, but it is the ONE place that meets all of his needs....they now say that a LEGISLATOR has to sign off on it before it can happen....can you guess where I will be on the wednesday before thanksgiving...yep you guessed it...I'll be at the capitol bldg busting down doors....someone has to listen to what a horrid job they have done at handling this states mental health and DD services!!!
Monday, November 16, 2009
It's starting
Today was a very good day...or shall I say, has been thus far. It's not over yet :)
We got word from one of the people at the newspapers that they would like to tackle our story. This shall get very, very interesting very quickly I do suspect.
We also have another meeting scheduled for Jamie's school on Thursday morning....not that I expect much to change...they haven't been willing to meet his needs thus far...but we shall see.
They have apparently been putting the kids to be "early" at the hospital because Jamie's not been allowed to call and we haven't been able to get anyone to answer when we have tried to call...it simply rings and rings and rings. The going to bed early thing...that was Jamie's comment...it may or may not be true...but with all that has happened there, I wouldn't put it past them to do such a thing.
Oh well...time to run and finish up dinner :)
We got word from one of the people at the newspapers that they would like to tackle our story. This shall get very, very interesting very quickly I do suspect.
We also have another meeting scheduled for Jamie's school on Thursday morning....not that I expect much to change...they haven't been willing to meet his needs thus far...but we shall see.
They have apparently been putting the kids to be "early" at the hospital because Jamie's not been allowed to call and we haven't been able to get anyone to answer when we have tried to call...it simply rings and rings and rings. The going to bed early thing...that was Jamie's comment...it may or may not be true...but with all that has happened there, I wouldn't put it past them to do such a thing.
Oh well...time to run and finish up dinner :)
Sunday, November 15, 2009
Sunday School
Not really about our fight per say, but interesting none the less...please leave your comments...we are interested in them all... :)
We were on the way to church this morning and DH said, "Look Zach! There's a $125,000 car!" It was a LOTUS, which DH went on to explain is only manufactured in Italy and has to be shipped here. Which brought me to the point of "Why?" I mean seriously??? So we got off on the discussion of 'want vs. need' and DH kept trying to justify why a car such as the LOTUS would be a need.
The church sermon was great, though I had to leave twice...once because I forgot the offering envelope in the car and no sooner than I get back in the kids have to potty...but it was still good...what I heard of it at least... And then we were off to Sunday School. You would think it was a carnival the way the kids race to get to their class. It's nice they like it so much and they are making good friends.
So DH and I head to our class, which right now is discussing the topic of traditions and making memories, but somehow we got off on that LOTUS again...but the conversation did bring us right into our lesson and scripture on "need". It got me thinking about alot of stuff...you know...the kind of stuff you want, and then try to find a way to rationalize that you really need it...and how our house is really "cluttered" with all kinds of that "stuff".
I wonder how it would feel to get rid of all the "stuff"? I wonder how much less complicated life would be w/o it? All that said.... I NEED my sewing things :) No, not really, but they are things I enjoy and I do use them on a regular basis..not just as a creative outlet, but to make clothing for the kids...
We also talked about Manners and children....and a course called "Growing Kids God's Way". Now, there were only four of us there today, DH and myself being two of them, but it is something we want to look into as a group...and would make for an interesting challenge...
How do you handle your kids, manners, speaking to adults and engaging in conversations with adults...do you make you littles learn to do it because it is expected? Do you let them shy out of it? Do you think it's rude if a child shys out of a conversation?? Lots of questions we raised....lots of personal answers...feel free to share your thoughts.
We were on the way to church this morning and DH said, "Look Zach! There's a $125,000 car!" It was a LOTUS, which DH went on to explain is only manufactured in Italy and has to be shipped here. Which brought me to the point of "Why?" I mean seriously??? So we got off on the discussion of 'want vs. need' and DH kept trying to justify why a car such as the LOTUS would be a need.
The church sermon was great, though I had to leave twice...once because I forgot the offering envelope in the car and no sooner than I get back in the kids have to potty...but it was still good...what I heard of it at least... And then we were off to Sunday School. You would think it was a carnival the way the kids race to get to their class. It's nice they like it so much and they are making good friends.
So DH and I head to our class, which right now is discussing the topic of traditions and making memories, but somehow we got off on that LOTUS again...but the conversation did bring us right into our lesson and scripture on "need". It got me thinking about alot of stuff...you know...the kind of stuff you want, and then try to find a way to rationalize that you really need it...and how our house is really "cluttered" with all kinds of that "stuff".
I wonder how it would feel to get rid of all the "stuff"? I wonder how much less complicated life would be w/o it? All that said.... I NEED my sewing things :) No, not really, but they are things I enjoy and I do use them on a regular basis..not just as a creative outlet, but to make clothing for the kids...
We also talked about Manners and children....and a course called "Growing Kids God's Way". Now, there were only four of us there today, DH and myself being two of them, but it is something we want to look into as a group...and would make for an interesting challenge...
How do you handle your kids, manners, speaking to adults and engaging in conversations with adults...do you make you littles learn to do it because it is expected? Do you let them shy out of it? Do you think it's rude if a child shys out of a conversation?? Lots of questions we raised....lots of personal answers...feel free to share your thoughts.
Saturday, November 14, 2009
The beginning of a new fight
This is all new to us...the blogging and the fighting for what is right for our son. Seemingly odd enough none of the news papers are biting on our story...so we will take it on...starting here, and maybe just maybe someone will become interested enough to help or to join our fight. We know we are not alone...
A little back history....we have a 12 year old son who was born prematurely at 31 weeks and 6 days. He spent a LONG time in the NICU, coming out of it with what we thought were little to no ill effects. We were wrong. At 18 months this boy did not walk or talk....he screamed or he laughed, but he did not talk. Allergies to both food and medicine were coming out of the woodwork faster than we could count. He was constantly sick, RSV, pneumonia, ear infections, sinus infections....if it was catchable, he caught it. I quit my job and started sewing from home because, though my employer had been gracious enough to allow me to bring my boy to my job, it was increasingly clear he needed much more attention, and my job also needed more attention. It was an easy transition that also allowed me to be more involved in my other boys schooling at the time too which was a good thing in the long run. At the ripe old age of three, we learned some heart wrenching news...my boy was labeled with Atypical Autism...but the Chief of Neuropsychiatry didn't thing that was all....so an MRI was ordered...and yet another tear into this momma's heart... My boy had suffered a stroke prior to being born and was diagnosed with PVL...periventricular leukomalacia...the brain damage that causes Cerebral Palsy. By three, we had been in speech therapy for over a year, so there was language, so there was hope.....you know that string you tie a knot at the end of and hang onto with dear life...that was my hope. More therapists and more therapists and specialist after specialist....and then we moved. We moved to where we were led to believe that we would be able to get the best services available for this ball of non-stop rollercoaster emotional filled little man.
We were wrong. Since our move, it has been nothing short of a battle to get the appropriate services. You see...this little man was also diagnosed at 4 with Early Onset Bi-Polar disorder. There is alot of debate on diagnosing children of this age with "this" disorder... My response...live with it and you KNOW. The school system fights us, the insurance companies fight us, and the therapists turn us away because he is in their words "too complex". Trust me, I know...I've lived with him...but they go to school for this...they should know how to help. We are not asking for a miracle cure....we are asking for someone to give us the right balance of medication and to help teach him the right tools so that he can somehow learn to cope in "normal" society.... but we have learned....budget cuts have all but taken away that chance. They are the reason that our son is sitting in a mental hospital at the moment thinking we don't want him. We do want him...but we all want to be safe...and we want him safe too. That won't happen at home because the programs have been ended that made it possible for a number of years to him to successfully live at home.
Oh how I could go on and on about how the budget cuts have hurt not only my son but thousands of other across this great state we live in....the legislators don't get it...they don't live it. My challenge...come live a day in my life....live a day in my son's life...then tell me it's still fair that all the programs that enabled him to live safely at home have been cut...
A little back history....we have a 12 year old son who was born prematurely at 31 weeks and 6 days. He spent a LONG time in the NICU, coming out of it with what we thought were little to no ill effects. We were wrong. At 18 months this boy did not walk or talk....he screamed or he laughed, but he did not talk. Allergies to both food and medicine were coming out of the woodwork faster than we could count. He was constantly sick, RSV, pneumonia, ear infections, sinus infections....if it was catchable, he caught it. I quit my job and started sewing from home because, though my employer had been gracious enough to allow me to bring my boy to my job, it was increasingly clear he needed much more attention, and my job also needed more attention. It was an easy transition that also allowed me to be more involved in my other boys schooling at the time too which was a good thing in the long run. At the ripe old age of three, we learned some heart wrenching news...my boy was labeled with Atypical Autism...but the Chief of Neuropsychiatry didn't thing that was all....so an MRI was ordered...and yet another tear into this momma's heart... My boy had suffered a stroke prior to being born and was diagnosed with PVL...periventricular leukomalacia...the brain damage that causes Cerebral Palsy. By three, we had been in speech therapy for over a year, so there was language, so there was hope.....you know that string you tie a knot at the end of and hang onto with dear life...that was my hope. More therapists and more therapists and specialist after specialist....and then we moved. We moved to where we were led to believe that we would be able to get the best services available for this ball of non-stop rollercoaster emotional filled little man.
We were wrong. Since our move, it has been nothing short of a battle to get the appropriate services. You see...this little man was also diagnosed at 4 with Early Onset Bi-Polar disorder. There is alot of debate on diagnosing children of this age with "this" disorder... My response...live with it and you KNOW. The school system fights us, the insurance companies fight us, and the therapists turn us away because he is in their words "too complex". Trust me, I know...I've lived with him...but they go to school for this...they should know how to help. We are not asking for a miracle cure....we are asking for someone to give us the right balance of medication and to help teach him the right tools so that he can somehow learn to cope in "normal" society.... but we have learned....budget cuts have all but taken away that chance. They are the reason that our son is sitting in a mental hospital at the moment thinking we don't want him. We do want him...but we all want to be safe...and we want him safe too. That won't happen at home because the programs have been ended that made it possible for a number of years to him to successfully live at home.
Oh how I could go on and on about how the budget cuts have hurt not only my son but thousands of other across this great state we live in....the legislators don't get it...they don't live it. My challenge...come live a day in my life....live a day in my son's life...then tell me it's still fair that all the programs that enabled him to live safely at home have been cut...
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