Feb 21st Update and Prayer Request

Many of my friends and family have contacted me recently for an update on Keeg. To be quite honest, I didn't have anything good to say, so said nothing at all.

Keeg is getting a bit worse day by day. His chest pains are daily now. He wants so much to get up and play, but can not have any physical activity until his echo-cardiogram is completed. Every now and then he slips away from me and does something physically active. Afterwards his chest pains begin in earnest and he's so very fatigued he can only stand with help. We're counting down the days till he gets in with the pediatric cardiologist and his geneticist.

Emotionally he's regressed so very much. I can't tell you how many times in a day his sister and I have to try to keep him from having an emotional melt down. He completely loses it over minor things. For example, the other day his sister asked him to put the frozen biscuits in the toaster oven. It was a minor task. One she thought would be one step and simple, as those are often the only task he can perform now. He laid the frozen biscuits directly on the wire rack, with no pan under them. When they melted down between the slots, and started to burn, we tried to hurry up and clean the mess up before he saw. Yet, he did see. He was so upset that it was all we could do to calm him. Once he forgot to cut off the screen saver when we were watching a movie, another time he forgot to put his bowl in the dishwasher when done eating, another time he forgot where he'd put his shoes......Little things like this severely upset him. You'd think the world was coming to an end, and it's all we can do to convince him that it doesn't matter, and it's all OK.

Keeg can no longer do even basic math without struggling. He attempted to play an elementary math computer game, and came to me crying, “I can't even figure out what 8 times 6 is”. This from the child who was doing Trigonometry 6 months ago.

At church, he attempted to take notes. For those of you that know Keeg well, you know that he is an ardent note taker. He'll take notes during sermons, Bible courses, etc and then delve into them with research after. Due to his potential heart condition, he sat beside me during the service. He spent the first 15 minutes struggling to write down the first thought that had been spoken. I watched from the corner of my eye, unsure of what to do. Do I let him continue to struggle and try? Or do I tell him not to worry about it? Which of those things would upset him more? I didn't know what to do, so I waited. About 30 minutes into the service he looked at me with tears in his eyes and said, “Momma, I'm sorry I'm not taking notes”. My heart broke, but I smiled, looked him in the eyes and told him it was OK, just to listen.

At times his speech is so slurred you can't understand what he is saying. Any other child would get frustrated, but Keeg just repeats it over and over each time we ask. Often we figure it out, other times he'll motion for us to just forget it. It pains me to see that my child at times has no voice.

There are other times that he tries to read aloud. Keeg has always been the one to read the scriptures aloud in our daily devotion. Yet, now he struggles to read even a few lines form the devotion itself. He stumbles over words and can't figure out what they are. While playing hangman at the neurology office, he had to ask a nurse how to spell “taste”. It was a nurse that has worked with him for 7 years and knows him well. When he asked her how to spell it, she looked at me in shock. There was nothing I could say as it was all I could do to hold back tears.

Although Keeg has noticed these things, the worst for him has been his looking up Scriptures. Keeg was very young when he begin to learn the Bible. It was something that he just had a personal knack with. Keeg learned the Scriptures at a young age, and his understanding was well beyond his years. I remember at not even 4 years old, he stood on a stage at The Straight Gate in Lexington, and gave his personal testimony. When he was done, everyone was wide eyed and had tears all at the same time. As he walked to the back where I sat nursing his teacher, people reached out to touch his shoulder as he walked by. I've seen him sit down with pastors for hours, having conversations that far surpassed my own Bible knowledge. Keeg loves reading his Bible. He loves sharing the Scriptures with people more then anything. He's always told me that there is a Scripture for everything you need in the Bible, and more often then not he could tell you what that Scripture was.

Now however, he struggles to remember where the books of the Bible are located. You can see his frustration when he's looking for a book, and it doesn't come easily to him. I've fallen into the habit of, when searching for a scripture, asking him what scripture I'm looking for. Now however, he can't tell me. He looks at me with this mixture of confusion, despair and heartache across his face.

It's not just hard for him. His youngest brother doesn't understand why he can no longer play with him every day. He pleads and begs and cries.....not understanding that it's not just a matter of choice.

Keeg's sister is struggling as well. Keeg has always been her hero. She's always looked up to him, and wanted to be like him. Now, suddenly, she's become his caretaker. She looked at me with tears in her eyes while we were preparing dinner and asked me, “Mom, is Bubba gonna be OK?”

I did what all Mom's do. I smiled, looked her in the eyes and said, “He's going to be OK.” I then went on, “I don't know what's going to happen. He may get better, he may stay the same, or he may get worse. But what I do know is that God is taking care of him and us, and that no matter what happens our family is going to be OK.”

Keeg has so much on him and I can not imagine what he is going through. I don't know what I would be like in his situation. Yet, I honestly don't think I'd be as unselfish as he is. He prays more often now then I've ever seen. He carries his prayer journal with him everywhere. I occasionally catch a glimpse, and am always amazed to find him praying for someone else! He prays for every one we come in contact with and hear of. He prays for people he's never even met! If anyone ever says to him or he overhears a prayer request, he'll pray wholeheartedly. I see people in our lives that are blessed by God, and I can't help but think of the scripture in James that says, “The effectual fervent prayer of a righteous man availeth much.” I see my son's prayers being answered, and am moved by his faith. Even as he asks God why God has made his life so hard, he still believes in God with his whole heart, soul and mind.

Keeg's prayers are unselfish. Each night, as he's regressed more and more, he's cried for the loss of someone in his life he loves greatly. Yet, his prayers are always for that person to return to God and to have a relationship with God. Not only has he not asked God for that person to return into his own life, he even went so far as to ask God to restore that persons relationship with Himself, “even if they never see me again”. How does a child at the age of 14 learn to pray so completely unselfishly?

My children and myself don't know what is going to happen. Right now, we are standing on a path that appears to have tall, dangerous, craggy mountains ahead of us. Yet, we know that often God will divert our path before we have to go over those mountains. We also know that should we have to go over those mountains, that God will stand by us and carry us when needed. He will not forsake us. This path isn't an easy one, but the one thing I am sure of is that my family will serve the Lord regardless of what path we are led down. We will praise Him even in the midst of the storm. We will continue to love Him with out whole hearts, minds, and souls.

If ever our family should lose sight of that, then I ask you my dear friends to remind me. There is no way we can ever get through this without our God holding our hands, and even carrying us in His. He's here with us, and I am forever indebted to Him. I do not deserve the love He has shown us, yet I am so thankful for that love.

Please continue to keep my wonderful son in your prayers. Please pray for his siblings as they struggle to handle Keeg's rapidly changing health.

No matter what happens, Keeg is my son and my love for him will grow each and every day. I'm so very proud of him. He is a daily example of how we should love. He's had some issues, and at times I didn't know what to do with him. Yet, at the end of the day, his love for others is unconditional and his forgiveness reaches out even in the midst of his own pain.

I am blessed to be called his mother. Please, keep praying for him.

Chest Pains and ER Visit

As we were on our way home today, Keeg started to have chest pains again. Whereas the chest pains he's had before only lasted arpx 5 minutes, this one didn't go away. He started out having a sharp pain in his lower left chest. The pain then, within seconds, was also in his upper right chest. Keeg has situs inversus totalis (all organs on opposite side of body). He then got sharp pains behind his eye and an instant painful headache at the back of his head. He began to have pain in his ear and jaw. At this point in time he had turned very white and was in obvious pain. His left leg followed by his groin area began to hurt. He then flushed a dark red and told me he needed the air conditioner on. Over the next couple of minutes both legs, feet and his lower stomach begin to hurt. He described it as, "All the pain I've ever had in my whole life is happening right now at the same time." As the pain in his chest and head (the worst two pains) intensified, he became lightheaded and simultaneously weak. He felt very sleepy but said he was scared if he went to sleep he'd never wake up again. He has also been having a constant back pain that intensified.

Upon arriving at the hospital he was skipped ahead of everyone else in the ER and taken back. His blood pressure was taken upon arrival, and he was then taken back for an EKG and a chest x-ray. He was kept on a heart and oxygen monitor. His blood pressure was not taken again. He also had a blood test done to check some kind of enzyme. During his chest x-ray he again experienced sharp chest pains, but at that time he was not hooked up to any monitors.

The results of the EKG and chest x-ray, as well as the blood enzyme test, was normal. The ER doctor told me that he could go home but could not do any strenous activity. He could not run, play, experience stress, etc. He told me to call the cardiologist that he was referred to, tell them we were seen in the ER for chest pains, and that he needs an echocardiogram done immediately. He said that the fact that Keeg's pain moved to multiple places (two different locations in his chest and then other parts of his body) was a good sign and meant it probably wasn't his heart.

Upon arriving home I looked at the discharge papers I was given. It says he is to follow up with his regular doc in 1-2 days. It also says that although his EKG and X-ray were normal, sometimes "the signs of a serious problem take more time to appear". I am then told to "return promptly or contact his doctor if any of the following occur:  1) A change in the type of pain such as it feels different, becomes more severe, lasts longer, or begins to spread into your shoulder, arm, neck, jaw or back. (Considering the pain in his chest spread to each of these areas, I'm sure you can see my concern). 2) Also, shortness of breath or increased pain with breathing. He's already experiencing that as well and hospital personnel saw it first hand. 3) Weakness, dizziness, or fainting. Keeg had to have assistance getting his jacket and shoes on and had to be taken out by wheelchair due to how dizzy and weak he is. He needed assistance to get into the vehicle. He needed help getting home and due to how weak he is, he's sleeping in the clothes he wore today as he's to weak to change clothes.

It's a bit disconcerting (OK, a LOT) that the doctor felt he needed an echocardiogram ASAP but that one could not be done while we were at the hospital. It's also disconcerting that the doctor would say the pain being in multiple places is a "good sign" when the paperwork we were sent home with seems to say the opposite. It's also disconcerting that the ER doctor feels that getting a quicker appointment with  a pediatric specialist is as simple as a parent calling the specialist!  Overall, it's disconcerting that my son had the worst pain he's had in his life, and we were sent home with no answers.

Please keep him in your prayers. I am getting on the phone with each of his specialist tomorrow and insisting that they get him in with the geneticist and cardiologist immediately. I'll do whatever it takes for this to happen. Today's events, on top of what else has been happening is quite frightening. Please keep praying for Keeg.

Update Feb 13, 2012

I've been waiting to tell others about Keeg's latest issues until we saw his neurologist again. Today, we saw the neurologist.

Over the last couple of years, Keeg's health has not improved past a certain point. He stays tired and weak. Playing only a short time requires hours of sleep to recuperate. He's also moved from the 36^th percentile in height to the 76^th percentile. He is now 5ft, 81/2 inches at 14 years old.

Over the last year, his emotions have started to suffer. He is unable to identify emotions, unable to control emotions, and struggles with feeling overwhelmed. His social skills have regressed and he was recently diagnosed with Asperger's.

Over the last few months, Keeg has been losing his mental abilities. He had started doing Trigonometry at the end of last school year. Now he struggles with math he was able to do easily a few years ago. His reading comprehension has steadily gotten worse. His speech has started slurring on and off over the last two weeks. Today, he struggled to read a simple devotion. Keeg taught himself to read by the time he was 2 ½ years old.

For 4 months Keeg has had an ongoing headache. The pain fluctuates between a 5 and a 10 (on a scale with 1 being least pain and 10 being most pain). His severe migraines that land him in bed for 36-48 hours have decreased to aprx 4 a month. Keeg was prescribed Depakote to help with his migraine.

Two weeks ago Keeg started having chest pains. With his Situs Inversus (internal organs on opposite side of body) and the possibility of Marfan's Syndrome this requires a referral to a cardiologist.

As for his regression in mental and emotional abilities, I was told that this has been seen often in cases of long term immune system issues. There is no clear answer on how long it'll go on, or even how much worse it will get. Until we get him in with the geneticist, there isn't really much that can be done. We've been on the cancellation list for some time now, but still haven't gotten the call about an appointment.

The doctor did prescribe a medication today that he hoped would slow down Keeg's regression. Vayarin is Omega-3s and Polyunsaturated Fatty Acids. In addition to possibly slowing his regression, it will also help regulate his emotional state. It will help him sleep also. This medication is a good fit for his symptoms and there are no significant side effects. However, neither our CareMark Prescription Drug Insurance or Medicaid will pay for this medication. The cost is $75 a month. There is not an alternative available or a generic.

Right now, I'm completely overwhelmed. I'm supposed to just sit and wait while watching my son fall apart. How do I sit every day and see that he is getting worse and worse and do nothing? This is the hardest thing......not being able to help your child.

As Matthew West said in the song “Strong Enough”, “Hands of mercy, won't You cover me? Lord, right now I'm asking You to be strong enough, strong enough.....For the both of us.”

Newly Diagnosed

The following post was copied and reposted from pathsfrommysoul.blogspot.com   It's insight on how I handled Keeg's diagnosis.



Yet now (finally, the meat of this post), I don't think any of us know what to do with the latest diagnosis. Not of Pookie, but of my eldest son. You see, Keeg has, up until recently, been the perfect and most exceptional child. I know you think I'm biased (and I am) but there was just so much about him that was unique. At 2 1/2 years old, he taught himself to read!! I was teaching him letters and sounds and he already was reading Doctor Seuss books. By the time he was in Kindergarten, he had already tackled his first Isaac Asimov novel (not an easy read for many adults even). He was super bright when it came to intellect and I watched him carry on conversations with his medical specialist that blew everyone in the room away. I can not tell you how many times someone told me that he was the smartest child they'd ever seen. I was PROUD. It seemed like no matter all the wrong I'd done, I'd been blessed with a child that was an enigma. Keeg always battled some pretty severe health issues, but his behavior was always above and beyond. He was the child you look at in the store and stop the mother just to say, "You have the best behaved child I've ever seen". He was the child you told once and once only. He was the child who always seemed to know who was upset and would ask what was wrong. He was the child who always did his schoolwork, always kept his room clean, and always ate his vegetables.


A year ago I started having issues with him. He was always reading. He'd read the tags in laundry, he'd read the labels on the cans in the pantry, he read and read and read. He could no longer complete tasks or chores because he stopped to read everything. I even caught him a few times reading the garbage in the kitchen can. He'd walk by and it would catch his attention so he'd stand over the can, peering in and reading. I would have to tell him over and over and over again to do something before he would complete it. He would tell me he didn't hear me, or didn't remember. I would ask him to complete a chore and hours later would be appalled that it wasn't done, even after he told me he completed it. He'd walk into the room, look around and dumbfounded ask me, "what else needs to be done?"  I was at my wits end. How could the once perfect child suddenly be this rebellious, disobedient teenager?? I talked to friends with teens and they assured me that this was just part of growing  up and eventually (albeit a long eventually) he'd outgrow his rebellious streak. How did I not see what was really happening?


About 4 months ago, Keeg and I were home alone. I told him that I was going to give him a chore and I was going to observe his completing it. Each time he stopped to read, I would redirect him. He was to try his best not to read, and if he read something and I didn't notice, he needed to tell me. About  3 minutes into this, he was crumpled on the floor, tears streaming down his face, his hands pulling at his hair, and saying, "I can't do this! I have to read! I have to! I have to!" I sat, completely blown away. The agony in his cries froze me. Something was wrong....terribly wrong....and I didn't know what it was.


I talked to several professionals I've become friends with through the years and heard lots of different ideas. I decided that the first step was to get him in with a professional therapist. Someone that would address the needs of our family and help Keeg deal with the stress he was going through. I got a referral from a friend and set up our first appointment. The doctor had me feel out a bunch of assessment forms online for Keeg so that he could review them before our appointment. When my husband and I went to meet the doctor, he handed me a scholarly article to read about Asperger's. Confused I looked at my husband. Why would he give me this when I'd already told him our youngest was diagnosed with High Functioning Autism and not Asperger's? The doctor let me know that the information wasn't for Pookie...........it was for Keegan.


The foundation of my world shook. Reality started to spin and meld. I sat in the midst of the chaos, frozen in a warp that wracked my awareness of all. This isn't what I was supposed to hear. I was supposed to be told that he was ADD with maybe some OCD. That's what I was prepared for. Asperger's??? NO NO NO....my youngest son is on the Autism spectrum....not my oldest! I pushed myself to read the article he had handed me, floored to find out that it addressed how it's actually COMMON for children with Asperger's to not be diagnosed until they are in their teens. I managed to make it through the appointment, and back out to the truck. My first words to my husband after we pulled away was, "How could I have missed this?"


I grew up with family members and friends that had special needs. I went to college for Early Childhood Education with a special interest in Special Needs. I've volunteered, helped out and fund raised for various organizations that help with Special Needs. I've spent the last 5plus years studying Autism Spectrum diagnosis, Asperger's included. And then the lighbulb went off............how many times did I pull Keegan over to me while researching and say, "Hey, this sounds like you!"


Looking back..........I missed so much. The way that Keegan never really cared much for affection. Yes, he'd let me hold him, hug him, and give him kisses as a child. But deep down I always felt that he was only tolerating it for my benefit. The way that his room always stayed so clean because he didn't really own much of anything. He would always ask me to give his toys to children that didn't have any. Proud as can be, we'd do so. It's only in hindsight I see that it was because he didn't care for the typical toys children played with. His room has always been minimal in decoration and toys. For as long as I can remember he's only wanted an alarm clock with radio, a lamp, his hotwheels and a chess set. Looking back, I can see how unusual this is for a 5 year old.....but at the time I just saw it as a sign to his immense intellect. Keegan has always been particular about his clothing. He has always preferred khaki pants and shorts after he went to a charter school that required school uniforms. He likes long socks with the tops pulled straight up his legs. Keegan never really had any sense of style, but being a single mom that didn't really have any other Dads to chat with, I just thought it was a guy thing. There were always gross motor skill delays and clumsiness...........he had really big feet and I chalked it up to that. I never noticed that Keeg didn't recognize personal space until he was older. When a small child sits down immediately next to someone, it's cute. It's not a red flag that he doesn't realize that people have personal space. Keeg has never known a stranger.....NEVER. It's not uncommon for his interactions with someone to start off with 20 questions. I just thought he was curious and trying to feed his intellect. When my husband and I married two years ago....Keeg had pretty much spent his life caring for me and his little sister (due to my own health issues). He'd been the man of the house. My new husband, his now step-dad, sat him down before our marriage and told Keeg that he was proud of him for all that he'd taken on through the years. He was proud of him for the way he took care of me and his sister. Now, he could just relax and be a kid! He could play and have fun. Once Keeg accepted this, play he did. My husband asked me then if I noticed Keeg's play. Did I notice that he played like a young child? Did I think there was something wrong? Did I notice that Keeg had gone from one end of the extreme (never playing) to the other end of the extreme (continuously playing)? Did I think it unusual that Keeg's imaginary play was immature yet intensely intelligent at the same time? Nope.........I didn't think there was a problem. He'd spent years taking care of me and his sister and now was just letting out all those years of pent up play. Besides, he was altering his play to match that of Pookie to help keep Pookie entertained. He just continued the same games when Pookie was otherwise entertained, right?


I could go on and on. You see, I've had 3 weeks and 2 days since the first doc told me he thought Keeg had Asperger's. Since then we've met with a pediatric neurologist who has all but confirmed the original therapist ideal. He's scheduled the appointments necessary to get the "official" diagnosis. Keeg was admitted into the hospital for unrelated tests, and numerous nurses and therapist he came in contact with assumed he'd been diagnosed with Asperger's long ago. (My mind screamed REALLY? REALLY? REALLY? the entire time). A child life specialist told me that her brother has CP and mild mental retardation and that Keeg reminds her so much of him. She said their mannerisms are identical. She said this with the sweetest affection for Keeg and her brother that I was deeply moved, yet inside I could feel the vibrations resonating through my body as my brain screamed "WHAT? MY SON? HOW DID I MISS THIS?"


Thursday, Pookie went for another evaluation with a speech therapist. I had to meet with the OT there so when Pook didn't want to go back with the therapist alone, I sent Keeg with him. When it was time for me to meet with the therapist, she wanted to make sure I'd realized that Keeg had special needs as well. Again, my mind screamed "DID EVERYONE SEE THIS BUT ME?"


There are always times in a parents life that you feel like a failure. That there were things you missed, things you should have done differently, things you should not have done at all. Yet, I can honestly say that nowhere in my 14 years of parenting have I felt so totally off the mark. My son has lived with me for 14 years....his entire life....and despite all my knowledge and training, I missed that he has Asperger's. I don't care that it is COMMON for children to miss diagnosis till teen years...........THIS IS MY SON. My firstborn. It makes a difference somehow.


Each day I make so many mistakes. I am trying so hard to change my perspective, to see Keeg as who he is and not what I always dreamed he would be. I'm trying so hard to realize that I'm in Holland and that Holland has so many things to offer (click on the blue word Holland if you don't know what I mean). I have to stop myself and apologize a thousand times each day because I realize I reacted to him without realizing his actions weren't intentional, that he didn't understand, and that he was doing exactly what I said just as literal as I said it.


I try not to think about his future right now. Don't get me wrong.......I'm doing everything I need to so that he gets the best of everything and reaches his full potential. I know that he can still be and do anything he wants to and that Asperger's is not a limit on this. Yet, since before he was born I'd dreamed of his future. When he was 2 he told me he wanted to be a doctor and didnt' sway from this except for when, at age 4, he decided to be a missionary. He talked of working at NASA so that he would have the means to reach the goal of missionary doctor. Those dreams haven't changed...........but the paths to get there are forever altered. It's not a bad thing......... but change is always hard for us adults. Selfish as it is, my life was always so chaotic there were only a few constants I felt I could depend on and those were God and my children. That hasn't changed.....but for me to be the mother Keeg needs, I have to change my entire perspective and outlook. I have to let go of my dreams to visit Paris and find the beauty of Holland. Ironically enough, when I read "Welcome To Holland" the first time I didn't really understand the full impact of it. I'd known since I was pregnant with Pookie that something "wasn't quite right" and the moment he was born it was obvious he had some type of special needs. I read "Welcome to Holland" shortly after Keeg's initial diagnosis and suddenly it all made sense.


I know that through all these things God will make sure our needs are met and dreams fulfilled. This is going to be a beautiful and joy filled journey. Yet, we all must mourn the things in life we have lost..............even when the door God has opened for us is so much more beautiful, amazing and breathtaking.