Thursday, May 8, 2014

Wanting To Know Why, Even If It Meant No Cure



There is tons of truth to the above statement. I have learned that all to well on my journey to finding out what caused Manny's Autism.

A bit of history on Manny he was born 10-27-09 at 32 weeks gestation. I was seeing a perinatologist due to a genetic mutation that I have called MTHFR. He checked my cervix via ultrasound and told my obgyn over the phone In front of me NOT TO MANUALLY check me. I left that office and went to see the on for my regular check up. He did exactly what my other dr told him not to do. When he did that he hurt me and with cause he had stripped my membranes that was at about 415-430 in the evening. I went home made dinner for Kobran and I. I thought I had to pee so I got up and headed that way and my water broke. After the fiasco of finding a way to the hospital I got there it was 630pm. I was left to lay there in the hospital in labor with no orders and he wasn't coming to do the repeat C-Section. When shift change happened at 7am and the new nurse came in to check me I was ready to push as he was right there. She was teaching me how to push when the dr walked in. They got into a argument about once a cs always a cs. Thankfully I had a friend who is really like a mother who stepped in and told them if they were to fight it would happen outside. They left shortly and came back. He had papers and said if you don't sign this you don't have a dr. I signed not knowing I didn't have to. During the cs they had one pulling Manny's feet out the top and one getting his head out of the birth canal via forcups. He was bruised from the top lip to the top of the head. He looked like he had a fight.

Manny was never on time for milestones. By the time he was 2 he should have caught up even with being a preemie. The diagnosis of autism came April 2, 2012 oddly enough I went home to goggle autism and found it was World Autism Day. In complete denial I listen to loved ones around me that said, "oh  he's a normal kid" , "all kids do those things", and "there is nothing wrong with him "! I tried to put it out my mind and act like he as ok but as time went by I realized the Drs. were right. I asked for a second oppion and those Drs. Agreed he had Autism. I was told "not to worry about why he had Autism because the Likelihood of me ever knowing was slim to nothing. 

Anyone that knows me know that I don't except No for an answer. So why would I when It mattered the most, that's just it I couldn't. I never really believed it was vaccines that brought us here. I have my own conservative opinion on that matter. I went back to the very beginning. I started with Phillip and I's  medical history. I looked more at my pregnancy with him and less at the MTHFR. 
I had several factors that they though could cause autism like high fevers during pregnancy and prematurity just to name a couple. I went with my gut and it told me that it wasn't that. More research  books, med journals and documentaries. In the end I came up with what his dr called a hypothesis. 

The Hypothesis 

MTHFR 

MTHFR stands for MethylTetraHydroFolate Reductase Deficiency. MTHFR is a genetic disorder that inhibits some people from being able to convert folic acid from food to the active form of folic acid,
 L-methylfolate, that is used by the body. MTHFR was identified in the Human Genome Project, a study designed to identify treatable genetic disorders.

This gene mutation severely limits the conversion of regular folic acid into activated folic acid which is essential for growth and development.  Folic acid is fundamental in the development of the brain and nervous system as well as many other body processes.  

This appears that is has been very possibly a highly overlooked issue in regard to triggering and 
causation of ASD. Quite obviously there would be in having this MTHFR/ as a remethylation defect condition, and in as well combined with situations of known less than adequate levels of glutathione, also known often present in those with existing diagnosis of autism, (ASD). When such a condition is present, quite obviously all vaccines would be contraindicated, and this condition appears to be much more prevalent than a person would think. 


Knowing that Kobran, Edmundo, and myself had the mutation I felt that Manny would to. I took this finding to the Pediatrician and he forwarded it to the Genetic  Specialist whom I saw Tuesday. He walked in with a smile on his face. He said a lot ! However nothing was negative.  He was happy to see a parent attempt to find an answer in the midst of being told not to. He also said that my "hypothesis" had more than 90% chance of being the answer to Why. He cautioned that it would only give us the Why but not a Cure. 

As I walked out with Manny he called to me and said "Mrs. McKee I proud of you." 

At that point I felt like I could breath. I thought I was going to get told off and laughed at. I really did.

With this being that case I went home and that night I knelt down to pray like I do all the time to ask God to heal Manny. When I went to utter the words I paused and thought about what I was asking God todo. I was asking him to essentially Rewrite Manny's DNA. That would bet he only way to rid him of the autism. Growing up you are told of miracles you might even see some. I personally have never heard of this happening. I though as I sat there "Do I believe that he can do that" the answer was simple yes!

Please be in prayer for Manny ..



Monday, February 10, 2014

Insomnia and autism

   First, I would like to apologize for not keeping up with the blog. Since the last post so much has happened. In Manny's life that has effected his autism. I took time to focus on those things. And I will address them  in subsequent blog post.

   However, insomnia (the lack of sleep) has been gradually getting worst. When he was a baby he was a very good sleeper. Never a problem . But after about 18 months old he began to have a problem. Till now he is 4 and naps are out the window and bedtime is nothing short of a three ring circus ! Perfect example tonight he as bathed by 7pm and in bed no later than 8 we are still fighting to go to bed it's after 10! I have done this countless times and he has stayed up till 1 or 2 am. I'm exhausted!  And I know deep down inside he is too. For him mornings come early even if he goes down late as mentioned above. He can be up at 5or 6 am. Once he's up he is UP! Manny doesn't stop ! In my mind I'm like how in the world do you have this much energy you didn't even sleep that much.

   To me the sad thing is that if I tell his dr all he will want to do is give him a sleep medicine. Quite honestly I DONT want him medicated for any of his symptoms. But to each it's own right. For someone like myself that wishes to do things naturally I have tried Lavender. For him it will make him sleepy but not sleep. So in questioning around I found melatonin and essential oils... So I will try the latter first and hopefully it will work. I found this blog very helpful you might like it as well. And remember all things are possible with God !

http://pioneeringautism.com/autism-and-sleep/

Wednesday, July 25, 2012

There's an app for that!

                Realizing that every child with autism has a journey to travel unique to them was a hard to digest. This essentially meant that there is no text book one size fits all answer to the struggles that we were to face. I went on a mission to try to find as many resources that could help him find his way through life in the most comfortable way. I have quickly learned that this is done strictly by trail and error. In the past few months alone I promise we have found those errors along the way but I am very happy to say that I believe we found apart of Mannys gold mine. The iPad! I had heard that there were some apps geared toward autistic children; honestly i didnt know weather to jump on it or not. So I did what I do with most anything else I got on google and did some homework on it. And to my surprise it was factual and backed with studies. So I began with just trying the apps one by one and oh boy his  world opened up in so many ways. I was so excited. It was like I began to see light at the end of the tunnel. We started with an alphabet writing game. And he would just look at me trace the letters with my finger and his brother do the same and for several weeks did not want to even touch it, but then today he pulled for the iPad and began to do it. I just started to cry. I was just so overjoyed that he was doing it. And not just doing it but by himself. And he got through "K" and said No and pushed it away. And to be honest I was excited as if he had done the whole alphabet. I tell you autism has really gotten me to a point where i stop and Thank God for the small things in life. It has humbled me and help me notice the things I would have normally taken for granite . I'm so proud of manny I can't stand it..

Thursday, July 12, 2012

A Window In My World

People say ,"oh he has autism?!" He must be high fununtioning it must not be so bad.. Your lucky! I smile and just walk away. Because no matter if you see me in the grocery store, church or McDonald's you only have a window into my life. You see glimps of my life not my life as a whole. The things that we live though on the daily basis at times all I can do is sit and cry . You don't see the melt downs that might not stop for a hour. Or the times that he punches and bites us when he is so angry about just having a toy taken. The times he just sits in the corner and won't let no one come near. It hurts when you say oh he is not that bad . I hate to even admit that this is our life. Because I want you to think that it is not that bad, that he is really well off and in more ways than one he is. AUTISM is not a death sentence. He will live and most end up being really good ; extremely good dare I say genius at one thing or another. He will make it. But I can't tell you that this is a walk in the park because it is not what you think. It is not what you see. We need prayer. The only way I can get him out of a melt down at times is to grab him hug him really tight so he can't hurt himself and begin to pray and at times all I can say is JESUS . But it's whAt works . There is power in the name of JESUS . Manny has become comfortable around most church people. Which has made our lives at church a great deal easier. Oh how I am thankful for this. Autism has really made me stop and thank God for so much more. You know the small things I am so greatful for . So when you see me out at the store, at church, or AT McDonald's realize you only see a window in our life. And this goes for all families with special needs children, passing comment or judgement is not the thing to do a simple I praying for you or Im thinking about you does so much . Because lets be honest God is the only one that can help us.

Friday, April 27, 2012

Thanks Home Depot!

Home Depot did a workshop for Autistic Children
All of the projects were geared in a direction that they would and could 
understand what they were doing and have lots of fun.
This workshop was separate from the on they have at the beginging of the month 
it deffinatly touched me that they did this for Autism Awarness Month..
I thought I would Share thes pictures!! 
Have Fun!





Monday, April 9, 2012

My Thoughts!

This last week has went so fast almost like a whirlwind! I have learned a lot .. I have heard a lot...
Noticed a lot ...And to say the least I'm a wee bit over whelmed! 
I cant explain you how much it hurts to see Manny be to himself and not want to be bothered with anyone or anything... it breaks my heart...
Friday I took him to the park with Kobran and some church friends .. the park is his favorite place to go ... we can feed ducks and play its a blast for him...
NOT Friday he wanted to stand right next to me and hold on to me .. 
the kids tried to involve Manny but he didn't want to ...
I truly think apart of me cries inside when he does that..
I have to find a way to become OK with autism
that will only come through God...
Things are no were near smooth around the house yet...
there is a lot of adjusting to do and lots more learning...
I want him to be involved with others ..
This week he has not really wanted much to do with anybody..
I know he will have these weeks but it does not make it any easier for me as a mom..
You want the best for your child ...
But I soon realized...
That is the best For Him..
Whatever makes him comfy..
feel secure
and OK with who he is as he gets older...
as long as it is in the will of God 
I'm All For It...
We Will make it With God ...

I have had this ear worm all week and it is true with all we have been through....

I Feel Jesus
I Feel Jesus
I Feel Jesus
In This Place
And My Soul Does
Burn Within Me
I Feel Jesus
In This Place

 I feel Jesus in my car, my house, at the store, in the doctors office, when I cry, when I'm cooking ... what ever I'm doing where ever I am at I feel Jesus... I feel the Prayers going up for our family during this time and when I have a moment that I feel down.. it is that carries me through...
I Have Realized That If I Put God First He Will Work Out The Rest!!!
Thanks for the Prayers and Support... 
Da McKeez

Thursday, April 5, 2012

Miracle Manny!


Daddy & Manny First Time Holding Him
My First Time Holding Manny
Here is the back round Manny was born on October 27, 2009 at 31.5 weeks gestation.. I usually just say 32 weeks.. but there is more Manny was born 8:35 am weighing 3 pounds 15 ounces tiny little thing bruised around the entire of his head. bruised foot and hand.. it was so hard to look at him... all i knew at that time is that I was going to nurse him.. but Manny was to weak to suckle.. so at the age of 19 I began to pump every 3 hours round the clock they told me that night that Manny would not make it through the night because his lungs were so under developed.. I told them before you interbate him because we were given a choice of what we wanted I said let me call my Pastor and have him come pray for him first. so at 11pm that night my pastor walked into the nicu and prayed for Manny his stats came up instantly.. from that time forward he became Miracle Manny He progressed extremely fast and was put on 70% pressured room oxygen for 1 week and room oxygen for 1 more week He came home in 2 weeks .. I never left the hospital they were so proud that I was nursing that they gave me my own room in the back hall...
They said that they had never seen a 19 year old mother nursed or rather pump as I did and stick to it.. 
that was my life for 4 months take care of 1yr old Kobran and pump round the clock .. 
 needless to say a I was tired those days..
BUT I HAD MY MIRACLE BABY!!!!
Mariano Emanuel McKee
At 4 months a breastfeeding Dr in Mississippi got him to solely nurse! another hurdle over comed!
At 6 Months They told us that his apnea monitor was showing episodes of Atrial Tachycardia . We changed Machines several times and they finally tested his and it can back true He has Atrial Tachycardia and we Kept worshiping God !
First Smile
We were able to get him off the Apnea Machine at 9 moths after 1 month of no Apnea and No Tachycardia!
Praise GOD! 
Another hurdle overcome!
now Here we are 2years later..
Not that we have not had our ups and downs with Manny we have ..
But God Has Been Good To Us!
 I found this Poem today and Would Like to share it 
Its About Autism! 
Loving Autism

By Jamie Knopik

If only you could comprehend how hard life is for me,
I know I’m only a little boy, but my world I want you to see.
Things are always changing right before my eyes,
but don’t you see I can not change with the direction of the tide?

It’s a different kind of world I see, with my big brown eyes;
they call it autism, and they think it’s my demise.
What I’d really like for them to know
is that my life is really about surprise.
Everyday is something different--something very new,
a phone, a clock, no a watch, I mean a shoe.
Sometimes I have a hard time expressing what I want,
and changing my mind ... well I do that a lot.

I have a hard time talking to people; please don’t think I’m rude.
I try to talk to another child: I really do.
But sometimes my words don’t work, and I hit instead--
now I really blew it, and no one wants to be my friend.
Some people are trying to find a cure for autism right now as I speak,
but why do I need to be cured?
There is nothing wrong with me.

Please don’t try to heal me, I’m not sick;
and instead of trying to fix me, enjoy my creativity.
My autism makes me who I am and sets me far apart,
but it only brings me closer to my family’s heart.
Autism is not something you should accept—it’s something to embrace;
for life with me is full of wonder and constant change.
I break up the monotony of daily life,
and although I don’t mean to, I sometimes cause some strife.
Autism changed me from all others except for my own kind,
and it has succeeded in showing all the world,
that love and autism bind.

Inspired by my darling son Donovan
September 6, 2006
I will Praise God No Matter What Comes My Way!