Hey guys!!! Today is Thursday and is a pretty laid back day. I'm in the middle of contemplating a possible move for the near future so Zachary and I will be closer to our mark, Houston. Anything to shorten the aggravating drive. Anyhow, here I sit at the computer and it is the start of a quiet morning.....I type while all the children are fast asleep.
Update....Zachary is still continuing on as he has in the past in what seems to have him leveled off for now. Mind you, we still wait for the doctor's appointment and wonder what she may say, but I don't believe he will remain like this forever. I still believe something will be done with his condition to end his nightmares and mine as well. My fears are still directed to him and his condition; but other problems in my life have arose; but that's another story. I do not use this blog for my self promotion; I only chose to write about Zachary and his daily dilemmas. The way I see things, this is why I'm here and therefore, I write about him....end of story.
I can tell all of you this, lately, Zachary has been more aggravated as well as seizure like on a daily basis than he has ever been. And what follows that you may ask?? Total destruction of anything that stands in his way. I don't understand it; I'm wondering if this is normal behavior or is this something that usually follows with the illness. Tough call to make. I just deal with it all the time the best way I can, we get through the day and see what tomorrow brings. At the moment, he rests silently and undisturbed. KISS is still the highlight of his life, as well as Paul Stanley and Bruce Kulick (who he calls his Uncle Bruce) and the music continues to find him the ultimate peace he has never imagined knowing.
Thursday, May 31, 2007
Tuesday, May 29, 2007
Happy Tuesday Gang!!!
Good day guys!! WOW...I have really went behind with the blog. Sorry I will try and catch everyone up...
Where to start...As you all know, Zachary and I are back from Houston and are going to return for his appointment on July 20th...which is on a Friday. That day I will discuss with his doctor regarding the upcoming surgery/surgeries he will be up against as well as the aftermath and his care. Until then he and I wait.
There are many things I haven't told any of you regarding what my boss, Barry Carr and I are planning for Zachary within the next several months. I intend on keeping that story under hat until it is time for the unveiling of what I call "The Big Bash". Yes, it is a very exciting event for Zachary and will make a great story to tell by him in the years to come. I can just put it this way, Zachary will have a very eventful summer and one he will never forget!!
So to all of you...STAY TUNED!!! Love from all of us and I will TTYS!!!!
Where to start...As you all know, Zachary and I are back from Houston and are going to return for his appointment on July 20th...which is on a Friday. That day I will discuss with his doctor regarding the upcoming surgery/surgeries he will be up against as well as the aftermath and his care. Until then he and I wait.
There are many things I haven't told any of you regarding what my boss, Barry Carr and I are planning for Zachary within the next several months. I intend on keeping that story under hat until it is time for the unveiling of what I call "The Big Bash". Yes, it is a very exciting event for Zachary and will make a great story to tell by him in the years to come. I can just put it this way, Zachary will have a very eventful summer and one he will never forget!!
So to all of you...STAY TUNED!!! Love from all of us and I will TTYS!!!!
Sunday, May 13, 2007
New Updates and more to come!!!!
Happy Mother's Day mommies!!! My day started off great and continues to get better as the day proceeds. To start off, Zachary's feeling better since his bad excursion yesterday.
He was really ill yesterday; his legs hurt and he couldn't walk. I had to carry him everywhere we went yesterday and he was sick literally. The doctor told me numerous times this is because of the tumors in his brain. Now I have learned he not only has them in the brain, but other locations as well. I am still waiting on the results of the EMU and I will pass the results down through family and on this blogspot.
Now for the good news....I am in the middle of organizing a benefit event for Zachary. This will be held at the Rapides Parish Coliseum in Alexandria, Louisiana on August the 11th. I have 3 slots for artists filled and have 2 more bands I'm looking for to play their hearts out and bring the event the ultimate success. Zachary has no knowledge of the event and won't know until the big day. I'm very happy and excited for him regarding the whole thing and so excited that I don't mind the extra work that I put towards it. We have a strong lineup so far and will finish the event with the final bands powerful performance. The final song that I have chosen to be performed is Zachary's song that was recorded for him and this will be the grand finale of the whole event because Zachary will make an appearance as Paul Stanley (complete in the Paul Destroyer costume with guitar in hand) playing along with his song. This I feel, will make his whole day and night complete regardless of how much the benefit makes for him towards medical. This is what makes him happy and I feel as he does, the music heals and is his spirit. So stay tuned for more info as the process continues.....
He was really ill yesterday; his legs hurt and he couldn't walk. I had to carry him everywhere we went yesterday and he was sick literally. The doctor told me numerous times this is because of the tumors in his brain. Now I have learned he not only has them in the brain, but other locations as well. I am still waiting on the results of the EMU and I will pass the results down through family and on this blogspot.
Now for the good news....I am in the middle of organizing a benefit event for Zachary. This will be held at the Rapides Parish Coliseum in Alexandria, Louisiana on August the 11th. I have 3 slots for artists filled and have 2 more bands I'm looking for to play their hearts out and bring the event the ultimate success. Zachary has no knowledge of the event and won't know until the big day. I'm very happy and excited for him regarding the whole thing and so excited that I don't mind the extra work that I put towards it. We have a strong lineup so far and will finish the event with the final bands powerful performance. The final song that I have chosen to be performed is Zachary's song that was recorded for him and this will be the grand finale of the whole event because Zachary will make an appearance as Paul Stanley (complete in the Paul Destroyer costume with guitar in hand) playing along with his song. This I feel, will make his whole day and night complete regardless of how much the benefit makes for him towards medical. This is what makes him happy and I feel as he does, the music heals and is his spirit. So stay tuned for more info as the process continues.....
Saturday, May 12, 2007
Back to Normal Life...
Good Morning, guys. Today celebrates a week anniversary since Zachary and I returned home from Houston, in which was early in the am. So let me recap you all from the last entry...
Zachary was unhooked from the EMU around 4pm, we went to the ground floor several times thereafter so he could stretch his legs and get out of the room, and at the same time waiting for the doctors and the technicians for the MRI. While we were at ground level we walked over to medical records and I signed a release for a copy of his records to be sent to my address. Soon after, we returned to the 10th floor to get his lab drawn and to wait for the doctor. During this whole time, Zachary could not have anything to drink until after the MRI. In which he was getting extremely violent as well as aggravated.
Around 6:30pm the technician came to retrieve Zachary for his MRI and we went back to the ground floor. I signed paperwork while they checked Zachary's vitals and soon after met with the anesthesiologist to discuss the anesthesia and medication that needed to be administered to Zachary after the MRI was complete. The medication I'm referring to is for nausea. I was told the anesthesia would work quickly, but was shocked with the results of how quickly it took effect. Soon after, Zachary was taken to the back for the MRI in which should have lasted 2 hours. I went and bought a coffee and waited for a while. When Zachary was brought into recovery and I was called in, it was 9:10 pm and the nurses were having problems waking him up. I had to literally sit him up and begin to speak to him to wake him. Zachary refused to drink anything they offered him. Soon after this, we were back on the 10th floor to have the IV removed from his hand. This was a long wait because the nurse on the floor was attending to other children and it took time. While we waited, Zachary too became restless to go home, but was very drunk from the anesthesia and the medication that was administered to him for nausea. He was very hard to handle. He also was very mean, in which I had to stroll him down the halls to calm him until the nurse was ready for him. Once the IV was out, in which he put up a fight; we were escorted to garage 12 to my van to go home. Zachary was in and out of sleep the whole 6 hours and by the time we walked in the door refused to go to bed; it was 4:30 am. I was beat and after tucking him in to bed fell asleep too and didn't wake up until much later.
We are happy to be home for now; but know this will be happening once again on July 20th, but have no idea what Texas Children's Hospital has in mind for him until we arrive there once again. I'm awaiting the remainder of the test results and will post them all at once for all of you to read about....some are definite, some are not really positive, but I hope to get some good news on results by next week. Until then, keep praying for him, and I will write all of you soon. Have a productive weekend...We love you all!!!
Zachary was unhooked from the EMU around 4pm, we went to the ground floor several times thereafter so he could stretch his legs and get out of the room, and at the same time waiting for the doctors and the technicians for the MRI. While we were at ground level we walked over to medical records and I signed a release for a copy of his records to be sent to my address. Soon after, we returned to the 10th floor to get his lab drawn and to wait for the doctor. During this whole time, Zachary could not have anything to drink until after the MRI. In which he was getting extremely violent as well as aggravated.
Around 6:30pm the technician came to retrieve Zachary for his MRI and we went back to the ground floor. I signed paperwork while they checked Zachary's vitals and soon after met with the anesthesiologist to discuss the anesthesia and medication that needed to be administered to Zachary after the MRI was complete. The medication I'm referring to is for nausea. I was told the anesthesia would work quickly, but was shocked with the results of how quickly it took effect. Soon after, Zachary was taken to the back for the MRI in which should have lasted 2 hours. I went and bought a coffee and waited for a while. When Zachary was brought into recovery and I was called in, it was 9:10 pm and the nurses were having problems waking him up. I had to literally sit him up and begin to speak to him to wake him. Zachary refused to drink anything they offered him. Soon after this, we were back on the 10th floor to have the IV removed from his hand. This was a long wait because the nurse on the floor was attending to other children and it took time. While we waited, Zachary too became restless to go home, but was very drunk from the anesthesia and the medication that was administered to him for nausea. He was very hard to handle. He also was very mean, in which I had to stroll him down the halls to calm him until the nurse was ready for him. Once the IV was out, in which he put up a fight; we were escorted to garage 12 to my van to go home. Zachary was in and out of sleep the whole 6 hours and by the time we walked in the door refused to go to bed; it was 4:30 am. I was beat and after tucking him in to bed fell asleep too and didn't wake up until much later.
We are happy to be home for now; but know this will be happening once again on July 20th, but have no idea what Texas Children's Hospital has in mind for him until we arrive there once again. I'm awaiting the remainder of the test results and will post them all at once for all of you to read about....some are definite, some are not really positive, but I hope to get some good news on results by next week. Until then, keep praying for him, and I will write all of you soon. Have a productive weekend...We love you all!!!
Friday, May 4, 2007
Friday's Update from TCH...
It's nearly noon and I'm writing all of you to let you know what has went on today and what will be going on to my knowledge. Zachary sleeps for now and had a minor outbreak just now in which picked up. This morning after breakfast, the nurse put his IV in (in which he put up a fight and got ugly), his appetite is still the same (will not eat much). He will be unhooked from the EMU test around 1pm and the MRI on the brain and spine will begin around 4pm and last for several hours because he will be under general anesthesia. After the MRI, we will be on the road homeward bound. The test results will not be in until Monday morning, but I will check with the doctors on Monday afternoon.
Zachary is very impatient for the moment...with the violent behavior, fear of needles, and wanting to just go home...I know how he feels and if I could take him away from all of this I would. So here we are sitting and patiently waiting for the paperwork to go home in which will not come until evening....
Zachary is very impatient for the moment...with the violent behavior, fear of needles, and wanting to just go home...I know how he feels and if I could take him away from all of this I would. So here we are sitting and patiently waiting for the paperwork to go home in which will not come until evening....
Thursday, May 3, 2007
Thursday in Houston...
Last night was pretty rough...I don't believe Zachary or I slept well. First of all the rain beating on the glass early in the morning. Before Zachary went to sleep, he was experiencing headaches and it was to a point he had to stop his fun activity and physically grab his head with both hands. Then it progressed to pain in the legs, to blackouts and finally a semi violent fit of rage. Things are slowly progressing and as the days continue, I will keep all of you informed on what the doctors decide and how Zachary is doing.
Few thing happened to Zachary while he slept...blackout/daze, and a fit of rage as well. I have been pushing the button for anything different (in which I was told to do so). If they find anything, I will keep all of you posted in this. As far as tomorrow goes, an MRI is scheduled for the brain and the spine as well as genetic testing before he is discharged and I know this will take plenty of time, considering the MRI itself will have him under general anesthesia. Ok....let you know more tomorrow. Love you guys and pray for his health to improve and a safe trip for us to return home....
Wednesday, May 2, 2007
The testing continues...
Good morning guys...Zachary and I are still here in Houston at TCH, it is now Wednesday, and the testing continues. So far, nothing traumatic to report yet; but we continue to wait for him to give them what they need in this so he can be released early. Like the doctors say, most children do not give them what they need during their stay because of the new environment and all of the attention; but that doesn't mean this is not happening, it's just because it's a new place and new people.
Zachary received his last and final dose of Tegretol this morning and will not receive another one until the moment he is discharged from TCH to go home. The reason is logical....the doctors want to see this violent rage and seizure activity while he is here so they know what to do for him in this matter and to make sure he is treated properly. In which I completely agree with this reasoning. I do feel Zachary will give them what they want before he is discharged...it's a matter of time when this happens...we just have to be patient and wait...that's the hardest thing because we don't know when this may strike.
Until Friday, we are living here in this room on the tenth floor and being taken care of extremely well by all the personnel. My aunt, who lives near by, has been stopping by to make sure we have everything we need while we are here and making our stay comfortable as possible. There are plenty of drinks and snacks for Zachary and I to get us by until we get a chance to have meals. Radio Lollipop comes by to bring Zachary arts and crafts to do on a daily basis. Yesterday he won the contest by completing a shield with his initials and the Paul Stanley star. Zachary received a monkey beanie baby by the name of "Cheeks" as his prize. Today, there will be another contest and maybe another prize. All the people here are very friendly and making Zachary's time here as peaceful as possible just like at home. The only thing different, he cannot leave the room because he is plugged in; but can walk freely around the room. Other than wanting to be unplugged, he is content. The tests will tell us soon what is going on and so will his actions later during the night and day.
More to report later...
Zachary received his last and final dose of Tegretol this morning and will not receive another one until the moment he is discharged from TCH to go home. The reason is logical....the doctors want to see this violent rage and seizure activity while he is here so they know what to do for him in this matter and to make sure he is treated properly. In which I completely agree with this reasoning. I do feel Zachary will give them what they want before he is discharged...it's a matter of time when this happens...we just have to be patient and wait...that's the hardest thing because we don't know when this may strike.
Until Friday, we are living here in this room on the tenth floor and being taken care of extremely well by all the personnel. My aunt, who lives near by, has been stopping by to make sure we have everything we need while we are here and making our stay comfortable as possible. There are plenty of drinks and snacks for Zachary and I to get us by until we get a chance to have meals. Radio Lollipop comes by to bring Zachary arts and crafts to do on a daily basis. Yesterday he won the contest by completing a shield with his initials and the Paul Stanley star. Zachary received a monkey beanie baby by the name of "Cheeks" as his prize. Today, there will be another contest and maybe another prize. All the people here are very friendly and making Zachary's time here as peaceful as possible just like at home. The only thing different, he cannot leave the room because he is plugged in; but can walk freely around the room. Other than wanting to be unplugged, he is content. The tests will tell us soon what is going on and so will his actions later during the night and day.
More to report later...
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