Zachary is Not Well...

Hello everyone. I know I haven't been on here lately; but alot of things have been going on with Zachary. It is with pain that I tell all of you that he is not his usual self. It started about a month ago and has worsened in the past several weeks. The seizures have piled on, the headaches are more frequent, and he complaines of his legs hurting more in which causes him not to walk much. He hasn't sang a KISS song for the longest time and that's not him at all. He sleeps alot and that's just about all.

Around 4:40pm yesterday, he had a horrible seizure, pupils were completely dialated, he wet his pants, and had no clue who I was or where he was. I rushed him to the ER only to come back late. We stayed until he was himself again. Tomorrow I will take him to the doctor to discuss the scheduling of the next MRI for him. I will keep all of you posted. Don't stop praying for him and I will never give up on him as well. I want to see him make it and win.

Mid August...event vastly approaches...

Hello guys!!! I'm back from broke computer city and ready to inform all of you we are in full force spreading the word of Zachary's benefit. Things have changed here drastically and the comcert has to happen for Zachary. Number One...insurance...which may be gone...Number Two...possible surgery in the fall...and Number Three...his health is starting to falter so something has to be done. If any of you can help, please contact Stephen Cristoforo...Echo 1 Productions at 954-274-7702. Thank You.... Here's some pics of Zachary at the KISS concert in Sault Ste. Marie, Michigan....God Bless all of you!!!

Hey guys!!! Alot's been going on here lately and I have been so busy that I have not had time to write on this site lately!!! Oh well. Not to mention, my laptop's cracked!!! So I am using another computer temporarily until mine is fixed.

I was so happy to be with Zachary when he met KISS and not to mention Paul Stanley. I'm not a fan; but was there as a mother witnessing her child's dream come true. That is important to me enough. We were treated at the hotel very well. It was alot of fun and Zachary got to see the band rehearse before the show!! That was too cool!!! Zachary told me Paul smiled and waved at him. The whole weekend was magical and alot of fun for Zachary and I was just content that everything was falling into place.

The weekend could not end without a private meeting and goodbye from Paul himself. On Saturday morning that is just what Zachary received. Zachary and Paul talked like they have known one another for a while, I took a picture (which is now on KOL and PaulStanley.com) and updated Paul on what was coming up for Zachary. Words cannot describe how proud I was that day. I also had the honor of witnessing Paul as a person and not a rockstar. When Paul was around Zachary at the hotel and backstage, especially at the hotel; he was showing his parental instincts. For that span of time, he was not Paul the Starchild/Rockstar...nor was he Paul the artist...he was Paul the man...Paul Stanley the parent. Not saying he was Zachary's parent...No...but he treated Zachary as he would an innocent child that loves and adores him for more than what he is; but for him and nothing more.

I now believe I understand the bond between the two of them. Most people won't be able to understand this even if it takes them a lifetime. You have to think outside of the box and not within. In my experience, the only way to think outside the box is to look through the eyes of a child and never dare to dream big.

Sault Ste. Marie Update....More to come!!!!!

Hey guys!!!! Zachary and I are back from the big weekend in MI and the KISS show was awesome!!!!! I will be posting pics from our travels soon for all of you to see and a few surprise shots which are very rare. Stay posted.......



Giving a shout out to Auntie Lisa and Uncle Mark as well as the KISS Armies....TX, Canada, OH, NY, and many others supporting the band "rockin' in the free world".....We love you guys.....New KISS Army Division forming in our home state LA....update coming soon....To my family.....tks for all your support we love you!!!! Tks Stephen (from Zach) and sending love out to Superhero Tony Whitfield.....Zachary loves you and will see you soon....




As for the benefit.....stay posted and more info will follow....




Alex.....

Update...Zachary's Benefit...

Hello guys. I hope everyone had a happy and safe 4th of July. Likewise for us as well. We had the traditional 4th...BBQ, TV, conversation, and fireworks. FUN, FUN!!

Today I am updating all of you on Zachary's benefit that is located at the Rapides Parish Coliseum. First of all, I want to tell all of you that we have a new promoter. His name is Stephen Cristoforo of Echo 1 Productions. Stephen has over 15 years experience in the music business and concert promotions. I learned about Stephen through my friend Markus Allen Christopher, the lead singer for Miss Crazy. Since our first discussion, Stephen has taken the reigns and moved with as much drive as me to make this concert the biggest and the best, not to mention a reality for Zachary and I. In the past weeks, Stephen has covered more ground with the preparations of the benefit than anyone ever has. For this, I am thankful and I can put my strengths in writing to all of you and continuing my life as a full time mother and home nurse for Zachary.

Zachary is well, as far as I know...he's with his dad until Sunday. Over the past several weeks, Zachary has been pretty hard to handle. He has experienced many seizures and violent spells that have lasted several hours. When these spells occur, Zachary can be pretty hard to restrain; but I have the determination to do so to protect him from himself and others. Zachary's worst enemy is himself and with that, destruction can follow. Everyday he continues to fight the demons inside him and I am always there by his side helping him win the battle no matter how long. Zachary will never give up the fight because I won't let him.

The benefit Stephen and I are organizing for Zachary will be a success, I feel. All the proceeds will go to Zachary's care and medical bills and anything he may need. I am content now that Stephen has taken the wheel regarding the benefit organization. I can go back to being just Kristen: loving mother and caregiver....no longer Kristen: the businesswoman/promoter/spokesperson. I can just be me and love my kids in the process.

If any of you guys want to help with the organization of Zachary's benefit, please don't contact me...contact Stephen Cristoforo. His email address is echo1productions@aol.com... He will be glad to hear from all of you, as well as your ideas for the Zachary's benefit. I would also be honored to have any of you, my family, to help with this event in honor of Zachary, the most cherished gift God ever gave me.....

Love to you all.....

Hello guys....Today has been a busy day for all of us. Zachary has been at school this morning continuing his learning with the summer program for his school. Now we sit at home, Eli's watching Shrek 2, Bailey's having a late lunch, and Zachary's singing "Doctor Love" and giving all of us his Paul Stanley performance. The concert continues here 24/7. Life here is never boring!!!

The preparations for the benefit are still continuing and as the days pass, we become closer to the big day. I can't wait to see his face when the big day reveals itself!!! Lots of things are going to happen with the promotion of this big event....I need not say what they are; but all I can say is stay tuned for more info on this event for our little KISS kid/ Mini Paul, Zachary!!!

Zachary is having a good day today despite all the small problems I have to straighten out, which is no big deal. Just another chapter of our lives. Nothing I can't handle.

As you all know, there have been things floating around for the past several months and recently about Zachary and myself. What I have learned regarding them are none of these rumors are true. The way I see things, people try and drag down a ill child and the mother that supports him because he's gaining all of this attention. Would it be because of the "ugly green monster" or is this just regular jealousy?? Whatever it may be, it doesn't concern me because I have all the proof at my fingertips that could put all these horrible rumors to rest once and for all. What really gets me, is the person who started these rumors has nothing better to do with their life and decided to make their life a little more exciting. What surprises me even more, the people that supposedly believe these rumors who call themselves "supporters of Zachary" and my "friends" in the KISS circle did not come to me regarding any of this. HOW UPSETTING!!! Well I guess in the end you know who your friends are.

In closure, for all of you out there. I am the same person from the beginning and have not changed whatsoever regarding any of this. Zachary is presently ill and that is real. He still needs all of your support, prayers, and love as well as my entire family. And everything I have wrote and said regarding what I am doing and have done for him is true. I have dedicated my life and time to him, my children, and to his dream and theirs and will continue to do so until my last days here. I ask all of you to continue to stand by us during these trying times and not to believe a terrible rumor regarding us. For we are who we say we are and always will be.

Zachary's New Apprentice....

Good morning guy. This weekend has been quiet, yet busy for me. Let's recap... Been busy with the benefit for Zachary and going full blast. Updates are yet to come.... Saturday morning, Zachary had another seizure and fell off the bed hitting the corner of the hope chest below, leaving a bruise and a gash over his right eye. Not to worry, everyone, he's ok; but has the mark which will eventually go away.

Yesterday, the boys went with their dad for the night and will be returning home this afternoon around 5pm. While they were gone yesterday, I took it upon myself to complete my yard work (which lasted all day), cleaning off my carport, and washing my van. Everything which needed my attention. This morning, I will continue my work with the interior of my home and the patio. I have been trying to keep myself busy with the home during the week and on the weekends so I don't have time to think about anything else that could upset me in any way. I have been getting better at this on my own.

When Zachary and Eli are here, I usually cater to their needs over the home and my own. Not to mention, I have 24 hour entertainment by not just Zachary, but by his little brother, Eli as well. Now they both perform KISS songs together. The baby is learning as much about KISS music as the older brother now. It's pretty amazing how quickly he can learn. What's funny, I have never pushed this on either of them...they just learn this on their own. Even when a KISS song is not playing on the DVD, Eli will walk around the house singing it. He doesn't go full blast like Zachary, but he's learning. He has the best teacher in the world....his big brother!!! Zachary tells Eli he can be Gene and Zachary, of course is Paul. Eli wants to be Paul too. What's so cute about Eli, he even got the puckered lips down like Paul!!! All I can say is looks like I have 2 KISS fans in the home now. It makes me happy to see them singing KISS songs together and performing them on my coffee table together. I have the hottest act in the world and with that it makes me the luckiest mom alive!!!!

Take care all of you and God bless!!!

Mini Starchild in Concert!!!

http://www.youtube.com/watch?v=hXXZCuAF1KU

Hello guys....This week has been constantly busy for me and the children. Not to mention the changes that Zachary is experiencing during this rough time in his life and with his illness. Everything has taken a tole on the family. I am dealing with the stress by staying busy in the home and that is why I have not been able to get back to all of you. I have gone back to full time mother and supporter of the children. This is my life and this is why I do what I do daily.

They say you never forget your roots when someone or something has been recognized. This is sincerely true. I began this 3 years and 7 months ago with Zachary because it was his only wish to meet KISS. It wasn't because I was a fan, nor was it to get recognized by famous people; it has and always will be strictly because of Zachary and only him. I am simply a mother with a heart as big as Texas and will do anything to make my children happy and if it involves making their dreams come true, so be it. Until this wish is carried out involving the benefit concert for Zachary, my work will continue and I am prepared to fight the long fight for my son. I would do this for any of my children and I do. But so far, Bailey and Eli's wishes haven't been too extreme nor impossible for me to accomplish. Granted if it ever does, I will do the same for them as I did for Zachary. I do this to make each of them happy or smile; not for my own satisfaction...this is what I live for everyday.

As for Zachary's benefit, things are looking up daily and I get more and more excited as the days pass. I just know this will be the ultimate concert Zachary and any fan will experience and I can't wait for all of you to get to share it with us. Zachary's KISS will go into full promotion soon and tickets will go on sale at the box office in July...prices will vary. My goal was to organize an event with the spirit of Zachary as he would want it down to the music. I have decided to make it a family function with a music influence....fun for all. The proceeds will go to help Zachary with his medical bills and future ones as well as traveling for he and I to and from the hospital.

I hope to see all of you in Alexandria, Louisiana for this very important event for Zachary...together we can all make a difference for him...KISS Army/Fans Unite!!!!

A New Week....

Good morning!!! Well the weekend is over and back to normal everyday life. What I strive to do, like most, is to make it to the next weekend. I completed many tasks that have been put on hold for quite sometime....like detail cleaning and organizing my home. Needless to say, my weekend was pretty eventful. I have been energetic the entire time.

The children have been pretty well behaved and helpful the whole time...hardly no sibling battles to intervene. Zachary has had several breakdowns and last night experienced another seizure; but didn't last no time. This morning, he goes to school for 3 hours for the summer program for special education with his present teacher. This is his second summer to participate in this program. I agree with the teacher that he attends because it helps him prepare for the following school year and he will excell as he did the last. He's a really smart kid and was the top student in his class as well as the regular pre k class. He's an unbelievable child with a huge capacity of learning and I know he will go far with the proper tools handed down through education. Learning has been very important to me; in fact, Zachary and I brush up on skills out of school. I feel it is very important for him to learn something new everyday to add to what he has previously learned.

Over the weekend, Barry Carr attended the KISS Coffeehouse 1st year Anniversary party with special guest, Ace Frehley. While there, Barry presented Ace with a custom made manaquin of Ace from the era, Love Gun. While there, Barry also promoted Zachary's benefit concert in which is to take place in August. Barry also had some time to talk with Ace regarding the benefit for Zachary and extended an invitation to appear to the event to meet Zachary. I have no word as of yet what transpired with this discussion; but will give you all an update as breaking news surfaces. Barry was a busy person at the coffeehouse....from promoting his business (Rock Bottom Costumes), meeting with Ace, promoting Zachary and the benefit, passing around Zachary's petition to meet KISS, and also promoting two of the bands that will be performing at the benefit (Miss Crazy and Absense of Concern). To know more about these two bands, click on their sites and listen to their music. These guys are two awesome bands that Zachary loves and are becoming extremely popular during this day and age.

I will be updating all of you as the week progresses as we prepare for the largest concert ever to hit Louisiana for the smallest KISS fan!!! Take care and love to you all.....

Updates....

Hello guys. I hope all of you have had an enjoyable weekend so far. To all you dads out there...Happy Father's Day from us.

Ok here's the updates....Zachary's seizures have increased now due to emotional stress as well as the tumors in which he has continued to take his medicine twice a day and most of the time he gets no relief. He has become extremely aggrivated and impatient as well and I can't explain this. I took him to the doctor on Tuesday and was given some choices of one I will not do because it will tramatize him more. I choose to be the supportative mother and stand by my son at his time of need. Everyday that passes, is another day in which I see we are running out of time to make Zachary's wish come true.

Barry and I are working tediously everyday to promote this benefit and to make it a success for Zachary and at times we both feel like we're digging a hole for ourselves in which all we need to do is jump in. Barry is now working on Zachary's Paul Stanley Destroyer costume for the benefit and Zachary is so excited about this. I believe this is what keeps him going. In which now Zachary knows about his upcoming benefit in which bands are going to attend. Every week, Zachary speaks with Markus Allen Christopher of Miss Crazy (from Los Angeles) and is excited to meet him; not to mention Zachary sings a KISS song with Markus over the phone for entertainment. It's an absolute trip to see them interact. It makes Zachary happy and I am always smiling to see him in such good spirits dealing with the music from his heart.

Also, I received additional information regarding Zachary's wish from Make A Wish. If you remember from the posts in the past, Zachary has been on a list to receive a wish granted for a celebrity meet and greet. His wish you ask?? To meet KISS!!! Well guys, looks like that will be happening on July 20th. I did some research as to where this will be taking place and it looks like KISS will be in Michigan on that day in concert!!! I'm so happy to know that Zachary will be experiencing his very first KISS concert less than a month before his benefit is about to take place. Needless to say, my hopes are that all or some of the members of the band would make an appearance to Zachary's event...It wouldn't be titled "Zachary's KISS" for nothing!!! Zachary has told me he wants to sing at his concert. I asked him what will you sing?? He says he wants to sing "Heaven's On Fire". He may change his mind before then, but whatever song he chooses, I'm sure it will be a great performance. We don't call "Mini Paul" for nothing!!! He is the real deal; he acts just like the original and wouldn't have it any other way. Oh wow, if Paul could see him now!!! Well who knows, maybe he will....

Zachary Wish

Good morning KISS fans. I'm writing to thank all of you who are supporting Zachary in his quest to meet KISS. This has been a tough road he and I have traveled to now and it continues to get harder everyday. Many of you have helped us along the way and I want to thank you all. I now have 4 reasons why I get out of bed every morning. Everyday is a gift and is also a new day of possibility. It would make me very happy to see Zachary get his wish and when that day comes, it will be an emotional day for the both of us; because we never imagined beyond our wildest dreams that the day would ever come.

I have not give up hope for Zachary; I just continue to push the issue because I know he would want it that way. I always stop and think what would he want or what would he say if he were here or what would he do if he were faced with this?? Anything regarding the band or music automatically leads me back to Zachary and I decide which road I should travel on walking in his shoes. Barry and I have traveled many bumpy paths to achieve Zachary's goal, but the goal has not went out of sight nor mind. Zachary is my daily reminder of what is well and good in life....the music of the band he loves the most...KISS.

These men have been like brothers and friends to him even though he has never had the honor to meet them. They have been there for him through thick and thin since the age of 2. Not only do they mean the world to him, but they have served as role models for him since day one. They are his heros and that is why Barry Carr and I feel so taken by Zachary that we have to achieve his goal to meet them one day soon. We will not stop until Zachary's Wish becomes a reality. This is our ulitmate goal to give back selflessly to a child that deserves the best.

Please support us in our quest for Zachary's Wish. Go to www.myspace.com/kisskidmom03, request me as a friend, and repost Zachary's petition with your comment(s). He needs our help. Come on KISS Army today is the day we unite and become one with and for Zachary to pursue his dream!!!!

Calling All KISS Armies!!!!

I am writing all of you tonight to let all of you know what has been going on with what Barry Carr and I have been working on for Zachary since November.

As you all know, it all started with the pair of boots Barry made for Zachary and later it was the KISS Expo. Presently Barry and I are working on the benefit concert for Zachary and hope it will be a success. I'm jumping ahead of myself, though.

I will start with Make A Wish first. Zachary has been on the list for over a year and his wish has not been met as of yet. Last week, he had a horrible spell and I nearly lost him during this. As of now, Zachary presently awaits for his wish to be granted and to meet his idols. Now to jump ahead....

When I brought Zachary to the KISS Expo in Myrtle Beach, promises were made to him through me regarding care packages from the Expos if he was unable to make the trip due to doctor appointments and health. These promises came from the webmaster for KISSONLINE; but to no avail, nothing ever came. It upsets me as a mother to see Zachary on a daily basis waiting for the man in the brown truck to bring him a package. The package in which never came and presently he still waits. How do I feel you ask?? I feel Zachary was used while he was there at the Expo and once he was out of sight, he was out of mind. The good deed was done for the day. It's kind of like giving a kid a cookie to keep them quiet, sit them down in front of the television, and go about your business as if they're not there. This depresses me more than anything and infuriates me more because Zachary is the one that is getting cheated out of his only wish and that is to meet the original four that stand for the band he loves in which he calls them his friends.

In conclusion, I am compiling a petition that will be passed around on the web. Zachary needs your support with this petition to help make his wish come true to meet KISS at his benefit concert on August 11th. Your comments are needed and your voice will be heard. Thank you KISS Armies and fans....Zachary needs your help. We love you all.....

Prayers are Needed....

Hello guys. This past week has been pretty rough for Zachary, as well as myself since I have no control. On Thursday of last week, might as well say early Friday morning, Zachary experienced the worst seizure of his life. Unfortunately, I was unable to control it this time and had to rely on the assistance of medical professionals to put the monstrous seizure at bay. Luckily, Zachary was released and we went home.

Things since then have been going well/going rough for Zachary ever since. It's all been mediocre and this is beyond our control. My goal is to just get through the day and to have a sound night; and with that we take one day at a time. I wish it didn't have to be this way for him, but it's the best we can do with what lifestyle we have to work with.

I want all of you to know your prayers, emails, cards, gifts, ect has been wonderful for Zachary and great for his spirits. I want to thank all of you for what you have done for him by lifting him up in this way. I truly believe the music does wonders on him that no one else can do....it gives him peace. Please keep Zachary in your prayers during this troubling time. On a nightly basis, I pray for his health, strength, ect. I ask the lord to give him a sound night and a great day. I also bestow that he have peaceful dreams of what he loves the best...and for any fear he may have during sleep to be put to rest. I end it with please find a cure and let him endure here.

Please keep him in your thoughts and prayers. He needs your help again...Pray for him....We love you all...

Update on Zachary...

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.

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!!!!

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.....

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!!!

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....

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....

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...

FROM HOUSTON WITH LOVE....

Hello guys...Well Zachary and I made it to Houston safe and sound and didn't get lost. Just like planned, Zachary brought all or most of his KISS collection; but unfortunate for me, I had to carry this from the parking garage to the 10th floor. WHEW!!!! By the time I got to the 10th floor, I was pooped!!! Needless to say, we finally settled in for the evening and here I am typing to you while Zachary lays in his bed, hooked up to the monitors watching KISS Rock the Nation Live.

The room we are in is KISSED OUT to the extreme and among the major things that were brought were Zachary's KISS Light, the picture of Zachary and Bruce with the Paul doll and many other things. Well too many to name on here for now, considering my time is limited and Zachary needs my constant attention. It is nearly dinner now and I thought I'd update all of you so far.

We have seen 4 doctors today and several other medical professionals. Tonight he is being watched and we will see what there is to report tomorrow. For now, we take this day by day because it all depends on Zachary. All I can do is be here for support.

Until then, have a great night and I will be writing to all of you soon...

Hello guys...I hope this entry finds everyone well. I've been extremely busy all week with the preparations for the trip for Houston that Zachary and I will be taking on Sunday. To be honest, I do dread the trip because I hate driving for long periods of time alone and the traffic in Houston itself can be absolute MURDER and I hate traffic jams. But to no avail, I'm preparing myself and Zachary for the big trip.



For several weeks, Zachary has been extremely aggressive and whiny. The medicine has not helped relieve him at all and his illness has worsened by the day to the point when I no longer have the answers anymore. I knew someday it would come to this point, but I didn't know when this would occur and was hoping it wouldn't be for a long time until it happened; but I fooled myself once again and Zachary continues to prove me wrong on a daily basis. Sometimes it is very easy to care for him and fill his needs in all aspects; but it pains me to see him continue to worsen by the day and week. I don't like to see him that way and I hate to feel powerless as a mother to this wonderful child and not be able to solve all of his problems to the best of my ability.



Last night, for instance, he went into a rage (in which is unexplained by me); and at some point, I had to administer the medications hours early to him in which he continued to fight off the effects because his rage was so extreme. I was called names, hit, kicked and bit as well as his brother and sister were attacked for reasons they can and cannot explain...needless to say, they were in his path and that's what usually happens with Zachary when his rage has reached its peak. Around I say 8 or 8:30 last night, he finally fell asleep and woke up fairly early this morning rested; but he was on the rampage once again first thing this morning regarding a single stop sign. After I settled him down, he allowed me to dress him for school and get him on the bus; in which he was fine. At the end of the day, it will be another story and I will update all of you on his progress tomorrow before I leave for Houston on Sunday.


Love you guys and have a great weekend!!

Welcome to Zachary's New and Improved Blog

Hello everyone. I would like to welcome you all to the new and improved Zachary the Mini Starchild blog. Alot has changed within the past few months. To get all of you back up to speed (so you all know what's going on); I would like to give you a quick run through.

I am now the acting Marketing Manager of Rock Bottom Costumes in which is run by Barry Carr the awesome artist that makes all of those KISS costumes and boots you see on the net, Ebay, and his blog...http://kisscostumes.blogspot.com. Zachary and I were affilated with Motorcowboy.com in which is run by Gary and Jim Evans and Barry was in charge for the KISS costumes and boots in which were made through them. To make a long story short, many things occurred and the happy bunch split down the middle and now all that is left of the "Dream Team" are Barry, Zachary, and myself. Since this has occurred, things have been great for all of us.

To all of you that have subscribed to Zachary's blog in the past, welcome back because I have many things to report regarding him and our little family. To our new subscribers...WELCOME there is more to come and many exciting things to occur for Zachary within the next few months also many pictures to follow.

As you can see, this blog is being run by me and it will be run correctly and updated daily regarding new information on Zachary during his illness and following surgeries. I will keep all of you updated with all the information you need to know of him as much as I can if and when time permits.

Until then, it's good to be back. Will write and update all of you on his progress tomorrow. Love to you all!!!

Kristen and Zachary Johnson