Saturday, January 17, 2015

Public Statement


For at least three years, my son Alex Malarkey has been speaking the truth and pleading to be heard regarding The Boy Who Came Back from Heaven. I’m thankful to the Pulpit and Pen blog for posting Alex’s open letter last week and finally helping his voice to be heard. The sudden interest of the media has meant that many reporters are seeking to investigate the story and I would love to answer every question, but since 2006, I have been Alex’s only nonstop caregiver, and I also have three more precious children to care for. So I’m forced to say no to all interview requests. I hope people understand. The facts of the case are being heard, through sources like the Pulpit & Pen website ( and the Grace to You blog (

I do stand with my son and I’m proud of the courage he has shown. “I have no greater joy than to hear that my children are walking in the truth” (3 John 4).

I also want to correct one glaring error that has appeared in countless news articles over the past few days: I have not divorced my husband and I am not planning to pursue a divorce. Kevin and I are still married. My hope is that all of this can be resolved in a way that exalts Christ by honoring the truth (2 Thessalonians 2:14). That, likewise, has been Alex’s only aim in all his attempts to set the record straight.

“Now may the God of peace . . . equip you with everything good that you may do his will, working in us that which is pleasing in his sight, through Jesus Christ, to whom be glory forever and ever. Amen.” (Hebrews 13:20-21).

Monday, August 18, 2014

First 5 k!

In June of 2013 I heard about a special jogging chair that would allow my son ALex to able to experience the fun of running. I then heard about AInsely's Angels through a connection through a connection with a gentleman who now builds specialized running chairs for individuals who would not be able to go do a road race on their own.

Here is the post and video...

ALex got in his jogging chair again yesterday after standing first for almost an hour on his tilt table. He did great. We made it four laps on the driveway. I am posting a video that my Grace shot. She did a fantastic job!!!You will see in the video how steep our driveway is and how long. I want to go to the track at the school so bad. I know we could make it quite a distance. We are both going to build up so much endurance. ALex used his pacer only again while we were jogging/walking, and he said his breathing felt great. He only struggled when I put him back into his wheelchair. The change of position caused the struggle. I will have to put his wheelchair into a more reclined position the next time. We are making progress. Again, thank you to all who donated to help us to get the chair, to those who have prayed and offered words of encouragement, to Ainsleys Angels, who do an amazing job of trying to promote inclusion, and to Team Hoyt, who have inspired so many to get out there and run, feel the wind, just move. Here's the video....

Well, one year later after a lot of hard work, ALex and I were able to complete our first 5K race!!!

Friday, June 6, 2014

Sola Sisters: Beware the Heavenly Visitation Books

Sola Sisters: Beware the Heavenly Visitation Books: Posted by Christine Pack In a recent article ( The Burpo-Malarkey Doctrine ), Pyromaniac's Phil Johnson takes to task the recent onsla...

Monday, May 26, 2014

Memorial Day 2014

Though videos and Hollywood movies can do a great job at attempting to portray the reality of war, nothing can accurately help us to really even come close to understand the depth of pain that those that bravely sacrifice for us. A pain that they did not have a choice of stepping out if it, they had to perservere through and endure it for a freedom such as posting on here. The cost is high and few will pay it. God bless those that have and do!

My father was a veteran of the Second World War. He died 2 weeks shy of my 6th birthday of a heart attack believed to be caused by the stress from the trauma of his battle experiences. My neighbor was a P.O.W. Of the Korean War. I have utmost respect, admiration, and appreciation for those that have and do sacrifice for others in battles and life. I wish I could have known my Daddy longer...

Friday, May 23, 2014

2 Peter 2:10-19

English Standard Version (ESV)

10 and especially those who indulge[a] in the lust of defiling passion and despise authority.

Bold and willful, they do not tremble as they blaspheme the glorious ones, 11 whereas angels, though greater in might and power, do not pronounce a blasphemous judgment against them before the Lord. 12 But these, like irrational animals, creatures of instinct, born to be caught and destroyed, blaspheming about matters of which they are ignorant, will also be destroyed in their destruction, 13 suffering wrong as the wage for their wrongdoing. They count it pleasure to revel in the daytime. They are blots and blemishes, reveling in their deceptions,[b] while they feast with you. 14 They have eyes full of adultery, insatiable for sin. They entice unsteady souls. They have hearts trained in greed. Accursed children! 15 Forsaking the right way, they have gone astray. They have followed the way of Balaam, the son of Beor, who loved gain from wrongdoing, 16 but was rebuked for his own transgression; a speechless donkey spoke with human voice and restrained the prophet's madness.

17 These are waterless springs and mists driven by a storm. For them the gloom of utter darkness has been reserved. 18 For, speaking loud boasts of folly, they entice by sensual passions of the flesh those who are barely escaping from those who live in error. 19 They promise them freedom, but they themselves are slaves[c] of corruption. For whatever overcomes a person, to that he is enslaved.

Saturday, April 26, 2014

Questions to think about

Alex is now sixteen years old. Have you noticed that you can not find any interviews with Alex that have been done since the book came out? In contrast, have you noticed that Colton Burpo is and has been interviewing since the book in which his supposed "heaven-visit" experience is written about came out? What if Alex disagrees and has disagreed with the book? What if he had tried to stop something that he could not, at the time, quite define the wrong of it(but knew it wrong somehow)so tried the best that he could with his young mind but those that could stop it did not listen? He is not a little boy any more!

The Bible is sufficient! Jude 3 Beloved, although I was very eager to write to you about our common salvation, I found it necessary to write appealing to you to contend for the faith that was once for all delivered to the saints.

Friday, April 25, 2014

Justin Peters on Heaven is for Real

Brothers and sisters in Christ, for your edification here is part 2 from Justin's internet radio program dealing with the heretical film "heaven is for real." Please share

Colton himself is speaking more boldly on his so-called trip to heaven. Some people have asked me if Alex now believes he did not see heaven. Here's the thing, even "if" Alex saw something, should we just take it as so? If Alex said he made most of it up to get attention, would that make you then still want to believe that the story that is written, or would you think for a moment about him(at the time of the accident) being a young child in a very traumatic situation? Would you be upset with Alex? Would you try to prove that he really did see things even if he said he did not, or could not remember whether he did or did not? What if Alex himself suggested that the book that is carrying his name, claiming to be "his" story" and portraying him as having some "gift" to be able to freely come and go to heaven, talk to and see angels and demons, is biblically in error? But it is not said that ALex, or Colton, or Don Piper, or Jessie Duplantis just "saw" heaven, they are said to have actually have gone there and returned to tell us "new" things that are not in the Bible already. So here is a question, should we then believe what they say(even though each description is different)and then start writing new scripture? Revelation 22:18 18 I warn everyone who hears the words of the prophecy of this book: if anyone adds to them, God will add to him the plagues described in this book,......

Does everyone get to heaven?

By the way, the answer to the above question is one that ALex gives as a now, sixteen-year old not a young child, but also in light of what the Word of God says(which he searches daily)....No, ALex says he did not see heaven let alone go to heaven and come back, or does he have any "new" things to add to the Bible! I do not want to speak for him, be the voice for him, or answer questions for him, but I will defend him and defend truth! I will be held accountable by God!

Sunday, April 20, 2014

The Boy Who Came Back From Heaven...not quite

I never intended this blog to be a place that I would have to defend my son ALex's indentity let alone the journey that he and he alone has endured. I started this blog as a "fun" thing to do and with the intention of maybe sharing some hope and bits of wisdom that has been learned through the struggles. I have taken this blog down from time to time not sure what to do with it and NEVER wanting to make it appear as if any of the people that I write about are extraordinary individuals. The people that I write about and share some of their accomplishments(Scott Fedor, Steve Gleason, and Kory Wiita are examples)are people that got thrust into extraordinary situations and have chosen to embrace the struggles they face head on and work hard to something positive with those struggles. AS Scott said the other day to ALex, "the challenge does not mean a stop sign, it just means that you might hve to figure out how to do that thing that you want to do differently." WHat a wise piece of advice.

This past week a movie based off the book Heaven is for Real came out. I have not read the book, do not plan to, and am strongly opposed to the movie. Let's just say that the Burpo book and the book that has Alex's name listed as coauthor(The Boy WHo Came Back From Heaven),as does the Tyndale Publishing website(can not understand how that can be), have a few things in common which I will not get into on here. I am trying to defend my son and truth. Here is something to think about....

It is both puzzling and painful to watch the book The Boy who Came Back from Heaven to not only continue to sell, but to continue, for the most part, to not be questioned. I could post facts and try to dispel many of the things contained within the pages of that book(have done a bit of that), I could continue to try to point out how Biblically off the book is(a few strategically placed scriptures does not make a book Biblically sound) and how it leads people away from the bible not to it (have done that as have others including John Macarthur and Phil Johnson), I could talk about how much it has hurt my son tremendously and even make financial statements public that would prove that he has not received monies from the book nor have a majority of his needs been funded by it (a fund that was set aside by a friend a few years ago has actually been paying for most things in the past few years but that fund is dwindling), I could.....but it seems like many people want to believe what they are given despite the wrong that it may be doing or the wrong that was done in the making of it. When Alex first tried to tell a "pastor" how wrong the book was and how it needed stopped, ALex was told that the book was blessing people. Ok...first, ALex said that while he was struggling physically and trusting this person as someone who seemed to be concerned so the person was invalidating Alex's feeling while justifying the wrong that Alex was trying to make that person aware of. . The person told Alex to "trust" him. ALex is the ONLY one that supposedly had the experiences being written about(ALex was a 6 year old and coming out of major brain trauma...note I am not saying what is true and not just that Alex was a kid with major brain trauma which alone should raise questions as to validity) Alex is the ONLY one who has endured not only a horrific set of injuries, but having his journey capitalized on. His struggles are NOT past tense nor is the "story." The ones making money from the book are NOT the ones staying up through the night, struggling for their breath, or were they the ones at six years old, waking up unable to move or breathe and in a strange place after last remember seeing a car coming right at the car he was riding in. What I have walked through with Alex over the past nine years has nearly broken me personally and spiritually. I have wept so deeply for what I have watched my children go through, been made aware of how ignorant I was of some things, how selfish I was, and how Biblically illiterate I was which allowed me to be deceived! Sure, I had read my Bible ALOT, but I had not studied it. I had listened to teachings but probably enjoyed more ear tickling than I am still even aware of(for that I repent and have experienced deep sorrow) I am so thankful that God is so merciful and patient. I am thankful that God allowed me to go ahead and fall for the junk that I did(and it was that junk)for I am fully aware of what it feels like to be pulled in. There are many who are scamming and using the Word of God to do it. They are good, especially if you are not digging into your Bible and truly studying it. They study their audience and even read "success" books to try to build better and bigger..."ministries/businesses". Please, examine what you see and read. I see many things from a different vantage point because of how much I have witnessed and am witnessing first hand...not second hand. I will remain puzzled and remain seeking truth in the Word of God! One more time..ALex did not write the book and it is not blessing him! Saying that it is blessing others to try to justify its wrong is just that...justification of wrong!

Something else that is really important is missing from the book that ALex is identified with, the gospel message. Following is a video of Todd Friel explaining the gospel to someone who does not know it a well as an audio recording from a guy named Justin Peters....

If you listen to nothing else of the recording by Justin, please listen in to the last ten minutes. The bottom line in these heaven visit books is that they exclude the gospel message. Heaven is a real place but not everyone will get there. There is a way and that is through Jesus Christ.

The gospel message...

Justin Peters...

ALex's name and identity are being used against his wishes(I have spoken before and posted about it that Alex has tried to publically speak out against the book), on something that he is opposed to and knows to be in error according to the Bible. How can this be going on??? Great question....How did it get this far?..another great question...sometimes bits of truth can become so twisted and distorted that it seems impossible to straighten out. Your words can get taken, twisted, and out right fabricated! His name is Alex Malarkey and "his story" is yet to be written!...don't worry, not planning to do a book:) just stating a fact.

Tuesday, March 4, 2014

First Standing Frame

These pictures show ALex in the first standing frame that he used. It was fourteen months after his accident when he stood for the first time, and he LOVED IT!!The lady standing next to ALex in the tank top was a nurse that was here with us for about sixteen/eighteen months. She was the last nurse who helped here. She rode out some scary storms in those early months after ALex first came home, but she hung in there. She moved on and has a goal of being a trauma flight EMT/nurse. How awesome is that!! The lady in the blue shirt in the second picture is our dear Wendy:)

AS for the stander, we, at first, could not find a doctor to sign a prescription to get Alex a standing frame. That is shocking since the studies show how important it is for individuals with paralysis to weight bear in order to decrease(or try to slow down) bone density loss. There are many studies that show that it is even more crucial to weight bear for a child since their bones are still maturing. So, we found, and purchased, ALex's first standing frame on EBAY. When I was able to get Alex to Shriner's in Philadelphia for a week evaluation, a doctor there understood the importance of standing and signed the script that would enable us to get a bigger stander for Alex when he outgrew his first one.

Reminder picture

This is one of the "reminder pictures" that I have. The kind of picture that after an amount of time has past after a major life event, you can reflect back on and be reminded of where you have been and what God has brought you through. In the picture Ryan is in the crib in the background just a playing with his toes, and happy as a lark, while Aaron is all smiles eating his corndog and playing CandyLand(love that game!!), Grace is content with her thumb, and Alex is there sitting in his chair. This picture would have been from 2005. ALex still could not swallow so he received tube feeding only. You can see his puffy arms which can happen with tube feeds. Also, ALex still had a manual wheelchair which was not really a good fitting one, but it worked! Life's a journey.....

Sunday, March 2, 2014

This is the first van that we had after the accident. It was bought for us by a local church in 2007. The van had been previously owned by a family who had a young daughter who was on a ventilator for an undiagnosed condition. She had passed away. The van seemed to work for us until we figured out that the seatbelts in the back did not work for the emergency catch. We drove around two vans for a time until we eventually found a very large silver van. Prior to having a van of our own, if we needed to go somewhere, we used the public transit van or the first church that we had attended out here would bring their bus. The dear lady who was the bus driver came one time just to take us out on a ride for she knew how little we were able to go anywhere. She even took us to McDonald's!!! What a sweetheart!

A video of pictures from 2007

The following is a slideshow of pictures of ALex standing in a standing frame. We had to buy his first standing frame off of Ebay because we could not find a doctor to sign a prescription for him to get one. That was even with medical evidence stating how important it is for individuals that are paralyzed to get weight through their bones to try to slow down bone density loss. That is even more important in children whose bones are still maturing. Alex was able to stand quite well until his spine started to curve as he grew and his muscles would not support his spine. That started to really advance sometime in 2008 until he eventually had his spine surgery in December of 2009. The other person in this video is a dear lady named Wendy Evans. She is ALex's physical therapist and has been around us since Alex first came home in 2005. Wendy has been through so much with us.

I hope to put together many more videos to capture the story of out lives as seen from my view. I want to try to put the pictures together in a way to save for my children in a way that they can remember the good things that have come through the toughness of the journey as well as share with others in a way that shows hope. We have had many laughs even though sometimes only after many tears....God bless those that have truly been there with us through this!!! Their names are not well known..Wendy is one of them.

Thursday, February 27, 2014

"Spiritual warfare is just that:a battle. It is a fierce conflict against spiritual lies, damnably erroneous doctrine, and destructive false religion." - John MacArthur from The Jesus You Can't Ignore

Saturday, February 22, 2014

A journey in pictures...

This, I think, was the very first slideshow of pictures I put together. The slideshow does not even have captions...sorry...I will attach this verse to it...

1 Corinthians 13:4-7
4 Love is patient and kind; love does not envy or boast; it is not arrogant 5 or rude. It does not insist on its own way; it is not irritable or resentful;[b] 6 it does not rejoice at wrongdoing, but rejoices with the truth. 7 Love bears all things, believes all things, hopes all things, endures all things.

This is a slideshow that someone else put together and set to music. The person did a fantastic job of capturing the personalities of my children...thank you..

I can not control the twists and turns of life, but I can try to stay clinging to the One whom I know gives me strength to persevere..God! And seek His truths in every given situation. Thank you Lord for the technology to capture these memories...

A video for Grace's 6th birthday...done in 2008

This is a video I made for Grace when she turned 6. I will eventually put together a new one, but this one is fun.

Monday, February 17, 2014

How hard does Alex work at doing school... He even has to work over his breaks and on weekends. Why? Because just to get ready for his day takes 3-4 hours on average and to go to bed takes about 2 hours. There are various things that have to be done throughout the day as well so school gets done when the time is available and often that is when others are enjoying "free time." Work is not a foreign word in Alex's vocabulary as it is not to any individual that deals with an ongoing challenge which they choose to embrace, adjust as they need to and seek to overcome instead of succumb to it. You can!!!

Friday, January 31, 2014

Dr. Raymond Onders --Diaphragm pacing

Ray Onders, MD, Chief of Minimally Invasive Surgery at University Hospitals Case Medical Center, gets a young patient off the ventilator and back to college

Team Gleason

Until a cure is found for ALS....

Wednesday, January 29, 2014

Faith's Corner: Reading "The Boy Who Came Back from Heaven" finally

Clicking on the following link will take you to a blog that does a fantastic job examining the claims made in the book, The Boy Who Came Back From Heaven, through the lens of scripture.

Faith's Corner: Reading "The Boy Who Came Back from Heaven" finally

Wednesday, January 22, 2014

Acceptance and Inclusion

This is little Owen Johnson. Owen was injured in a car accident a few years ago. He is absolutely adorable isn't he. His mom shared a really cool story from ta recent day at the park. Here it is...

"While at the park, one of the dads was chasing his kids around and as Owen passed he said, "Hey little man, what's your name? We are playing Shark Attack. Wanna be on my team?" Owen's face lit up. The dad introduced Owen to a bunch of kids and they all went off to play. Before that, all of the kids were just kinda checking Owen out but not interacting. And then once that dad included him, all the kids were playing with him. Take note parents- kids act how you act. They fear what you fear but will embrace what you embrace. This dad taught an entire park of kids and parents about acceptance today, and I gotta tell you, it was pretty freakin' awesome."

What a great lesson......

Saturday, January 4, 2014

Colossians 3:3-17 ESV

3 If then you have been raised with Christ, seek the things that are above, where Christ is, seated at the right hand of God. 2 Set your minds on things that are above, not on things that are on earth. 3 For you have died, and your life is hidden with Christ in God. 4 When Christ who is your[a] life appears, then you also will appear with him in glory.

5 Put to death therefore what is earthly in you:[b] sexual immorality, impurity, passion, evil desire, and covetousness, which is idolatry. 6 On account of these the wrath of God is coming.[c] 7 In these you too once walked, when you were living in them. 8 But now you must put them all away: anger, wrath, malice, slander, and obscene talk from your mouth. 9 Do not lie to one another, seeing that you have put off the old self[d] with its practices 10 and have put on the new self, which is being renewed in knowledge after the image of its creator. 11 Here there is not Greek and Jew, circumcised and uncircumcised, barbarian, Scythian, slave,[e] free; but Christ is all, and in all.

12 Put on then, as God's chosen ones, holy and beloved, compassionate hearts, kindness, humility, meekness, and patience, 13 bearing with one another and, if one has a complaint against another, forgiving each other; as the Lord has forgiven you, so you also must forgive. 14 And above all these put on love, which binds everything together in perfect harmony. 15 And let the peace of Christ rule in your hearts, to which indeed you were called in one body. And be thankful. 16 Let the word of Christ dwell in you richly, teaching and admonishing one another in all wisdom, singing psalms and hymns and spiritual songs, with thankfulness in your hearts to God. 17 And whatever you do, in word or deed, do everything in the name of the Lord Jesus, giving thanks to God the Father through him.

The Steve Gleason Story - 2013 ALS Evening of Hope

Steve Gleason, with his precious wife Michel at his side, are choosing to embrace the challenges they have been presented with as opportunities instead of seeing them as limits.

Inside Edition Investigates TV Preachers Living Like Rock Stars

The following video was done a few years ago. What is shocking is that even with the exposure these thieves are getting(yes that is what they are)multitudes are still flocking to them and unknowingly enabling them to continue to exploit the poor, steal from the weak and sick, and take advantage of the gullibility of their target audience. They often study the audience. Their motto is that you only have to know slightly more than the people you are speaking to to make them think you know a lot. I have watched this kind of behavior, on a smaller scale, but from individuals that desire to be the "successful" preachers(I mean wolves) that are shown in this video. Trust me, I did not get it and listened to and even defended some of these individuals until I watched the evil from up close. I met a wolf and the wolf snarled! Having money is not evil itself, it is how you obtain it and what you do with it that can be. If you want to seek the truth you will not just accept what a human feeds you as truth. There are master deceivers and manipulators amongst us!

If giving money would bring you health and wealth then all I would need to do is give a certain amount and my precious son would be ok right? What is that amount and who determines what amount I should give? Does someone dealing with a chronic situation mean they lack faith? Did you ever notice Benny Hinn sometimes can be seen with glasses? Can he not heal himself? And do not each that has ever claimed to be "faith healer" end up in death? When I was young, we used to laugh at the faith healers that claimed they had some power to touch and heal. They looked so silly with what they were doing. There actions did nothing to teach me about God or make me want to know Him. I have found that many people that I know who are not saved see these individuals and there arrogant, greedy behaviors and want nothing to do with what they claim to be Christian. If these people truly could heal, why in the world are they not going to pediatric hospitals and trauma centers instead of those needing "healing" having to go to a massive arena and "pay" for the slim chance of getting the "touch?" The number of people who claimed that "healing" ability when I was young was a small number. Today though, suddenly healing, preaching, "Christianity" has become big business. These scam artists know they can shelter their money behind church walls right? They claim to be doing the Lord's work while living lives contrary to the Lord's teachings and commandments. Watch the reaction of Copeland when asked a direct question about his money/"things." Is that the kind of response you would expect from a man truly representing Jesus? Is a church in a small town, that has multiple businesses owned by "members" of that "church, where the employees are members, and then the money flows back into the "pastor's" wallet seem legit or crooked? Sounds like a great way to hide funds.

The Bible does not tell us to "pay" a pastor for praying does it? Yet there are many individuals getting up on platforms and swindling money out the unsuspecting crowd. Search the scriptures!!! Your funds will NOT buy God's blessings!!!!You can NOT earn your way to God nor do you lack faith if you stay sick or dealing with a chronic condition. These scammers even spiritually abuse people to the point of believing that their lack of faith is the cause for a loved ones death. That my friends is just plain sickening! Those who are truly serving the Lord will be more like Christ with humility as a top characteristic not pride and greed as the "rock star" preachers/wolves. Beware!! You are not dumb or weak if you have been taken advantage of by these individuals but you are responsible for what you do with the truth you have been given...either examine it further or choose to ignore it and continue on as you were. These characters do what they do because they can!

1 Timothy 6:9-11

English Standard Version (ESV)

9 But those who desire to be rich fall into temptation, into a snare, into many senseless and harmful desires that plunge people into ruin and destruction. 10 For the love of money is a root of all kinds of evils. It is through this craving that some have wandered away from the faith and pierced themselves with many pangs.

Friday, January 3, 2014

Answer to a question...

SOmeone sent me a question about my son Alex. They asked me how I know when he is struggling to breathe at night. I put up a post about on November 20th about the reality of ALex's injury. The post talked about ALex struggling to breath when we were going through a drive thru to get food. That post prompted this individual's question about nighttime. Well, first of all.. when ALex first came home, night time was frightening. The fear of an alarm not working properly was scary to say the least. I remember when a neighbor from our old neighborhood had a son born prematurely and he had to come home and use an apnea(breathing) monitor at night. I thought the thought of the monitor was so scary. My neighbor assured me that, "you get used to it". Over time, you do get used to the monitors, to trust them as much as you need to, and to learn to tune in special ears or sensors that God gives to parents:)so we do not have to just depend on machines but instead on the natural alert systems that God wired into us. So how do I know when Alex is in trouble at nighttime? First, a very helpful thing that has occurred, but took time to happen, is that ALex has figured out how to come up with a good and effective way to get someone's attention in the day or night. ALex has his own "clucking" alarm system that he himself developed. A few years ago, Alex came up with a way to cluck with his mouth. It can be very loud and annoying when he wants it to be....he is a kid you know...but this cluck has also become a way that he can alert me to a need before an alarm goes off, or the cluck can be used to alert others to a need that an alarm would not go off for...i.e. like Alex needs his nose wiped(which can be alot! like it can be for you)or an itch. Another thing is that I sleep in a bed that is a few steps away from Alex so I can get to him very fast. I would love to have an ability to safely have him in a room by himself but it has not been figured out quite yet. (I do not trust video monitors) (1).ALex has alarms on his ventilator itself which will go off if something starts to go wrong with the machine or if his breathing tubes come totally detached(they have lots of times) (2).He wears a monitor that registers his oxygen levels and pulse and has an alarm on it. I made sure it is set at the highest, most annoying, sound possible. I wanted to make sure that the monitor sound is as different from the ventilator alarms as possible. You have seen these monitors on shows with scenes from hospitals or perhaps you have had to have one on yourself during a hospital or E.R. visit. Then there is what I feel to be the most important ability to gain, you learn to hear things before there is an alarm.(what I mentioned towards the beginning of this post) It is really alot like when you have a newborn baby and suddenly learn how to become attuned to the slightest sounds. There is one thing on Alex's ventilator that controls the pressure that pulls the air through his tubes and if that "pressure control tube" comes detached, the machine does not alarm. I have called the company and asked them why but they still have not put an alarm on that particular piece. I can usually hear the tube start to come detached before it is completely off. If Alex is awake, he knows the tube is coming off right away and either tells me(if he still has some air)or clucks. He can cluck without much air reserve...the cluck is a cool thing actually! So, I hope that gives you a bit of an idea of how I know Alex is in trouble at nighttime. I have jumped out of bed for detached tubes and at times when ALex was having major trouble and alarms going off like crazy. You learn to wake up real fast and react accordingly. Remember, I had no medical training before Alex came home as is the case with most of the other parent caregivers that I have come to know on this journey. We love our children and just pray and engage. God is a great teacher and He is patient and thorough in the way He instructs if you are willing to learn. Thanks for the question!

Thursday, January 2, 2014

"Truth has no degrees or shades. A half truth is a whole lie, and a white lie is really black." ~John MacArthur

Monday, December 30, 2013

The Bridge School

What do you think of what you see a person in a wheelchair? Do you think things like, they can not talk, they can not think,'s ok, much of the world has felt that way and still thinks that way. I know that there have been people that see Alex and all of his equipment and make the immediate assumption that he is non verbal and non cognitive. That is until he says hi:) The good news is that there have been many doors open for individuals with communication and physical challenges. I have to share this. What an incredible place!! It is called The Bridge School. ALex has missed out on so much because I could not find the right devices and/or individuals that could help us. The Bridge School is a place that is trying to make a difference in the lives of the individuals, who like ALex, have tremendous challenges. It used to be those individuals were just placed in institutions. I know we were greatly encouraged...every day during Alex's initial hospital take him to a "place." The words were, "You know, there are places that can care for your son." I tried simply to reply, "Yes, that place is home." Please share this video and spread hope and help to open eyes to possibilities not limits!

Click here to go directly to The Bridge School's website. Thank you!

Sunday, December 29, 2013

When Alex was injured, he sustained what Is called a closed head injury. When this type of injury occurs the injury can either be focal of diffuse. Focal meaning that it is in a specific area of the brain but diffuse means that the injury is to a more widespread area. This is he definition of diffuse axonal injury or D.A.I. diffuse axonal injury (DAI),

- a type of brain injury caused by shearing forces that occur between different parts of the brain as a result of rotational acceleration. The corpus callosum and the brainstem are often affected. DAI most commonly occurs in motor vehicle crashes when the vehicle suddenly stops.

The way they diagnosis the difference is by accessing and testing. There is a scale called the Glasgow Coma Scale. You will see in the following article the degree according to the rating. Alex was a 3 at the scene of the accident and for days after. I will be trying to post more information about Alex's injuries to not just try to educate those that want to know, but to provide hope. Please know that D.A.I. is a devastating injury and most of the time the result is death. I read one article that said only about 10% ever regain consciousness and of that number that do, there is usually severe physical and cognitive challenges. I do not know why God chose to intervene in such a huge way with Alex but I know that He did and I want to try to do what I can to help others. The road is not easy and can be very lonely, but I hope those that may face this diagnosis with someone they love can find us who have traveled before them so that we can at least walk with them. You will face many who do not understand what you are facing, do not want to know, and in their ignorance will make hurtful comments...BUT....that will only serve to strengthen you if you allow it to. There ARE many who do want to help, do want to understand, and do care!!! Hang on!!!! The rocky road can be very tricky and challenging at first, but the gains from navigating it and the depth of appreciation for the smallest of things will make it a journey you want to stay on! God's grace(generous benefit given)is sufficient! P.S....the medical professionals repeatedly used that term "persistent vegetative state" when referring to Alex and I STILL hate that term!

Click here for a direct link to a page that will give you a bit of information on traumatic brain injury or T.B.I.

And here is a little video about diffuse axonal injury/D.A.I. also called brain shearing. In the video, brain bleeding and brain hemorrhaging are mentioned. Alex had some big bleeds and hemorrhaging. Thankfully, the brain pressures only elevated slightly and the swelling was minimal.

Thursday, December 26, 2013

Cell Model

Alex had to make a model of a cell for his Comprehensive Biology class. SO he guided my hands and this is the result. Yes, that is play dough that we used. He looks quite pleased with the product don't you think:)