September 2009 Edition--Kenneth Is Featured In The Newspaper!

September 2009 Edition

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Don't Ever Shave Your Thighs!!!

I am the youngest of eight children, with a ten year gap between me and the next youngest. It was like having 7 sets of parents (half were married). My sisters-in-laws delayed the vaccinations for my nieces, saying they wanted to wait until their kids were older (maybe hippie philosophy)--this was the late 1970's. One of my sisters was a nurse. She gave me two words of advice (one I listened to)--don't shave your thighs and don't immunize your children until they are older.

There was no link between autism and immunizations at this point in time. I never did shave my thighs and am glad about that. I didn't immunize the children, either (until they were older).

It took many years and a lot of thinking to figure out what happened to Kenneth. Then it hit me one night--it all made sense--Ken falling off the growth charts, sticking his tongue out to one side, his high mercury levels...That time at the dentist, when Kenneth was six months old. I remember it vividly now, and it haunts me in my sleep. As I write this, I cannot stop the tears from pouring down my face.

Some old cavities had fallen out. Silver amalgam fillings. No big deal. Ken was six months old and nursing. I took him to the dentist with me. She drilled out the old fillings. He slept on the floor in his seat. She drilled my teeth for two hours that day. The mercury was vaporizing and you could smell it in the air. Ken was right there under this, breathing it in his fragile, six month old body. Mercury is much more toxic when it is vaporized. You could eat it and not be harmed like you could be when it is in a gas form. The dentist was kind enough (yeah, right, the stupid fatty fat butt) to let me nurse Kenneth during breaks in the drilling. The next day, I went in for more amalgam drilling. Ken slept again on the floor and nursed during another two hour procedure.

I tested Kenneth's mercury when he was 5 1/2 years old. Dr. Neubrander and Dr. Bradstreet had never seen mercury levels this high in any of the autistic kids they have treated at their offices (they treat thousands of kids). 9 was the high reference range and Kenneth's mercury registered at 95. We thought it would be very important to try to chelate him, to get out some of these metals. But his little body only weighed 29 pounds at this point and we just knew how very sick all of this mercury and other poisons were making him.

After Kenneth was exposed to all of that mercury in the dentist's office, many changes started happening in my new baby. At his next doctor's appointment, he had fallen off the growth chart. The pediatrician told me this was nothing to worry about. Kenneth was 7 months old, not gaining weight, not growing and this was nothing to worry about--well, you are the educated DOCTOR, so I had no choice but to stuff my concerns. Just a normal over cautious mother...

Kenneth also was not able to nurse very well anymore. He would often gasp for air and seemed to have trouble with the suck/swallow reflex. He started letting his mouth hang open and his tongue would rest to one side. He seemed weaker, not able to pull himself up on furniture like he use to or crawl around as well. His babbling never progressed. He developed a weird spitting noise with his lips (like a raspberry?) and he would make this noise all day. This lasted months.

Soon Kenneth's first birthday came and went. I looked at my baby, very tiny, not growing. He was no closer to walking or talking. Our pediatrician thought this was all okay. We went to another one. Still okay. Another. Okay. Finally, we found Dr. Clough. He listened to us and sort of helped. By this time, Kenneth was 18 months old. He had started walking a little. No talking...

Played Really Well With His Sister Today!

Kenneth continues to amaze us! Today was a fantastic day--he played with his sister, following her around and being very gentle. He is such a doll. I wish I could spend all of my days like this with these two angels right from heaven...

The Miracle We Have Been Praying For...

As I look back through the years we have suffered with autism I am reminded how we, like many other parents, were left with no hope. We prayed to God for a miracle and felt that if he wanted our son better, he would just do it. It took us years of waiting, but eventually we did come across mild hyperbaric oxygen therapy and adult stem cells. These treatments have saved our son. This may be the miracle we were praying for.

We are already seeing tremendous things from the adult stem cell transplant. We believe, by God's grace, that our son will recover with these treatments. A non verbal girl from Florida can talk after stem cells, a blind girl has some sight after stem cells, and a autistic boy from Orlando is 80% recovered now after stem cells.

One thing that my husband and I are always amazed at is how some parents are satisfied with what they are doing and don't want to keep researching treatments for their child. Maybe it is finances that holds them back. Maybe it is lack of drive and complacency. Please, research everything you can for your child. And never stop fighting. Maybe there is a miracle, you just have to make it happen!

WVII News Story Link

This is a story that WVII did this week. I am not sure why you can't just click on it and link it, but if you copy and paste it onto the address bar, it should work!

http://titancast2.titantv.com/c2511788594d40e488bf1b78f245f011/60059/share.aspx

See The Story WVII Did Today!

Ok, the story is up on the news site www.WVII.com click on the 6 o'clock news and fast forward to the story. During the story, we saw a HUGE "WOW"--it is Ken's sound clip--this would not have happened two weeks ago pre stem cells!

WVII and Foxx Bangor did a story on Kenneth today. It will air on tonight's news. During the interview, Kenneth told the reporter details that he would not have been able to do before stem cells. He told her how we had to drive four hours in the car and how we flew eight hours in the plane. He also said how we had to go to the airport three times before we could fly out!

Left Costa Rica A Week Ago

It was a week ago today that we left Costa Rica. We are pulling out all of the antioxidants that we can find, COQ10, Xango, blueberry juice, Oregon Grapeseed, Pau d Arco, Cell Food--too many to list...Kenneth is such a good sport about taking his supplements. It happened upon a stroke of luck three years ago that he learned to swallow pills--Philip and his friend were swallowing tick tacs and Kenneth was coping them--hence, he swallowed pills ever since. Kenneth will even take a teaspoon of cod liver oil for me every day. He really does well!

Things Are Happening!

Okay, I just have to say this--"THINGS ARE HAPPENING". It is official. There is a huge improvement in speech, already. Words are clearer and he is talking up a storm EVERYWHERE he goes. We noticed this while in Costa Rica, as well, but didn't know if it was just the excitement from the trip. 20% of an improvement in speech diction and content. That is a modest estimate.

My Brothers Notice More Speech In Kenneth

Two of my brothers are blown away by Kenneth's improvement in speech. He is speaking much more clearer. There is also a lot more cognition and spontaneous speech. Hopefully, this is just the beginning...

Remember When We Went On The Monster Ride Last Summer?

I think Kenneth is starting to remember more things now--or at least he is able to express this. This morning we were getting ready to go to the fair, and he asked me if I remembered going on the "monster" ride with him last summer...this stopped me in my tracks--I could not quite understand what he was saying, since he has never talked like this. He has never talked about the past before. It is still kind of hard for me to really believe that he actually asked me this question.

Showing Changes...

It has been over a week since Kenneth had his first stem cell injection. We are seeing lots of new language. We hope this is from the new stem cells working in his body. With each day that passes we grow more anxious to see the results that come as the eight week mark gets closer. Already, Ken is showing changes...

Here is a link from Daniel Faiella's blog www.recoveringmatthew.blogspot.com

It is on the brain and how it can be fixed at any age

http://www.cbc.ca/documentaries/docplayer2.html?playlistId=9cc84af0ef424e74902e7b19193efde5ebcac807&id=937819740

Leaving No Stone Unturned...

Donald and I are not going to leave any stones unturned when it comes to our children. We will fight until the end to take Ken as far as we can, and, if God is willing, this will be recovery. We will take the road less traveled and look for answers to their health problems. We will not stop at closed doors, but look for other doors to be opened. This is my prayer for all of those abandoned mothers and fathers out there with no hope for their autistic children...Don't give up, your children need you.

Snore Away!

Ok, we are finally leaving Boston. The latest delay, I am very excited to report, was Kenneth. He just woke up and it is 1:45 in the afternoon. Daniel Faiella told me that the little girl from Orlando also slept a lot after her stem cell transplant. This is a wonderful thing! Snore away!

A lot of you have been emailing me about whether we will need to take Ken back to Costa Rica for more adult stem cells. The answer is, "yes". One of the reasons for this is because of the differences between adult stem cells and embryonic stem cells. Embryonic stem cells are very powerful and dangerous cells. Once injected in the body, these cells work quickly to repair damaged areas, but the trouble is they will not stop there. Embryonic stem cells keep growing, often becoming tumors and other things in the body, a lot of which we don't know about yet. There is the potential for trouble down the road with embryonic stem cells.

Adult stem cells, on the other hand, will stop growing--they work sort of like the hyperbaric oxygen chamber. The cells in got in Costa Rica will grow for a while, take Kenneth to a certain level of recovery, and then stop growing (at about six months). The next few months we will work on reading/math skills, to help train his new cellss (an MS patient would add lots of physical therapy to help their cells). So, after about six months, you would want to go back for more adult stem cells to take your child to the next level of recovery.

Why Ken Is Naked And Screaming On Top Of The Volcano Display In The Airport...

While in Costa Rica, we met some really wonderful people (most of whom had family with autism). Here is how odd our experiences went. One couple in the hot tub lived in Bangor until they were 20.

Then, at the airport, we kept running into this really cute baby (and her parents) for two days (we were at the San Jose airport since Friday night at 10 pm until Sunday at 1 pm--had to keep checking flights and the 10 minute trip to the hotel was two hours because of construction).

Yesterday, I felt the need to explain to this cute baby's mom how my son had autism and that is why he was naked a screaming on top of the volcano display in the airport. We told her how we were in Costa Rica for an adult stem cell transplant. She told us that her friend was a doctor who did this. And it was one of Ken's doctor's at the clinic. This cute baby's mom could have donated her baby's cord to the clinic, but it didn't work out for them at that time. Needless to say, they are going to donate the next cord. We talked for a while and learned so much about stem cells and the clinic. It was really weird to meet these people at the airport!

A Brand New Boy With Brand New Adult Stem Cells

We are just coming back from our first treatment at the clinic in Costa Rica with our brand new boy and his brand new adult stem cells. I am actually using the internet on the plane right now (I didn't know this was possible).

Donald and I loved the doctors, especially Dr. Lara. I was surprised how Kenneth was upset when Dr. Lara wasn't there one day to do the transplant. Ken questioned him, "Where were you yesterday?" It was very funny to hear his "new" ways of communicating. I can't exactly say what is different. More words in each sentence, or more common sense types of conversation, but something is different.

Dr. Lara is a very kind, caring man and you can tell he is doing this because he loves his patients and what he does. We were very happy with the clinic Costa Rica. The clinic was right beside our hotel parking lot.

It appears to be that we are somehow stuck in Costa Rica. We spent most of the day at the airport. I guess we will be home sometime Monday around noon, our flight leaves Costa Rica tomorow at 1 pm.

Ken and Philip got to swim in the pool. It is a little chilly/windy here. This is winter in Costa Rica.

Ken is definately talking up a storm. He is approaching everyone and telling them all of his adventures--very funny, for us. We are really in awe at all of the conversations he is making. Is it from the excitement of the trip, or the stem cells?

Stuck In Costa Rica

It appears to be that we are somehow stuck in Costa Rica. We spent most of the day at the airport. I guess we will be home sometime Monday around noon, our flight leaves Costa Rica tomorow at 1 pm.

Ken and Philip got to swim in the pool. It is a little chilly/windy here. This is winter in Costa Rica.

More Speech Today!

Just wanted to write that we are seeing a little more speech. Unfortunately, we are too close to Ken to know whether this is a huge change or not...

Swam In The Pacific Ocean...

We drove over some volcano to reach the Pacific Ocean today. Philip and Kenneth toured a butterfly farm with lots of blue butterflies and poisonous tree frogs. The monkey loved Ken and kept jumping on his back and hugging him. I will never go to these places again. The roads are deadly, with 5000 foot drops on either side of a small winding road, traveled by huge trucks that speed and pass in deadly corners.

Kenneth has been talking a lot more. He seems to have a lot to say. I wouldn't say that this is the stem cells, yet. We are in some dive of a hotel, put up by Spirit Airlines. I hope Ken's stem cells don't die from the dirty room...hopefully, the airlines will fly us home tomorow. I miss the USA!