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
Thursday, September 30, 2010
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.
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