Update

Keeg's hematologist has determined that his spleen is enlarged and his labs are "abnormal". He has referred him to a rheumatologist and mentioned Marfans.

Keeg's immunologist is referring him to a geneticist.

Basically both doctors have said they see lots of issues, but cant' figure out a cause. Right now we're waiting.

Keeg went and got fluids through an IV yesterday as well as phenergan to help with his vomiting. Hopefully it was a virus, and not another "symptom". He's feeling a bit better today, and is able to eat with nausea medication. He's very weak and tired.

The ENT is fabulous. He did a camera probe of some sort that showed that Keeg has severe acid burns in his throat. He said this is due to severe acid reflux, and was shocked that Keeg wasn't in severe pain. I'm guessing the reason is due to his sensory issues. The ENT said there is a possibility of cilia mobility issues, but does not want to do a biopsy at this point due to Keeg's health. He said that since we're not battling lung infections, we can skip the biopsy at this point. He also thinks a geneticist is a great idea.

I'll update more as I learn more.

Lung Biopsy and Various Updates

I haven't had much time lately to update regarding Keeg. So, this will cover several different topics.

First, the labs that were drawn by the Immunologist showed that Keegan is still suffering from low white blood cells, low red blood cells, and low platelets. This has been a continual problem for 10 years, and as of yet there is still no answer. The good news was that, apart from this, the other labs showed that his immune system is functioning normal. Do I completely understand how his labs can be so off, and his immune system working correctly? No, I don't. But at least the latter part is good news.

Keeg has a referral to a hematologist. The hematologist will be addressing his chronic abnormal lab counts and attempting to determine a cause.

The immunologist also feels that Keeg has Cilia Immobility Disorder. This is linked to Situs Inversus, which Keeg has. Five years ago I approached several doctors and requested that Keeg be tested for Cilia immobility. I was consistently told that he couldn't have this, because he didn't have recurring lung infections. He did however have chronic sinus infections. Those sinus infections and his Situs Inversus led me to think he may have cilia immobility, but I could not find a doctor to test. Keeg will now be seeing an ENT that will perform a lung biopsy. With cilia mobility, the actual cell structure of the lungs are changed.

In recent years, it's been determiend that the brain has cilia. When this cilia is not functioning normally, it can cause chronic severe headaches. Keeg has suffered recurring migraines since he was 4 years old. In addition, Keeg has suffered severe acid reflux and projectile vomiting, all of which can be caused by cilia immobility.

I don't have a lot of information yet regarding what will be done if he does have cilia mobility or what the prognosis is. I do know that if this is the case, Keeg will most likely be sterile and unable to father children biologically. This is something that I've known since he was several weeks old. At the time of his birth, it was known that sterility was associated with situs inversus, but no one knew why.

Keeg has also received his results from his auditory processing testing. Keegan has an auditory processing disorder in “Tolerance-Fading Memory”. Children with TFM are unable to process and remember instructions when there is background noise. In addition, when in a noisy environment, Keegan becomes stressed and will often try to get away (flight reaction) or become aggressive (fight reaction). TFM is also expressed in the following ways. First, it may appear that Keeg often “ignores” people, especially if engrossed. He hears less well, or less attentive/productive in ordinarily busy surroundings. He has difficulty following a series of spoken directions and is unusually forgetful of information previously memorized such as correct spelling, household or school routines and responsibilities, despite frequent reminders.

Keegan also has a “phonemic decoding deficit”. Also, Keegan scored at age level in “number memory reversed” and at a 17 year old level on “word memory”. He scored slightly below average (13 year level) on “number memory forward”. However, in sentence memroy, he scored at an 8 ½ year old level. Keep in mind, all these scores are for auditory processing and have nothing to do with what he sees written.

You'd figure that with the auditory processing issues and his health problems, Keeg has enough on his plate. Yet, this isn't the case. We got Keeg's evaluation results from his neuropsychologist. Keegan received his “official” diagnosis of Asperger's. I'm still awating the evaluation to come in the mail. Intellectually, Keeg is quite adept. When it comes to intellectually knowing what a person should or should not do, or feel, in a certain social situation, Keegan is aware. However, when it comes to his perceiving these situations when he is in them, he is unable to do so. Keegan doesn't understand the majority of what happens in a day regarding people. He misses things such as facial expressions, tone of voice, and body language. He takes what is said literal and doesn't understand what is really meant. He is unaware of what is considered socially acceptable. There is so much more that I could list. What's worse is that when I asked for a referral for someone that specializes in working with children with Asperger's, I was told that there is no one in our area.

Keegan's OT evals came not to long ago. They show gross motor delays and sensory integration dysfunction. The gross motor delays result in his being unable to use both sides of his body simultaneously. This means he is unable to do things like ride a bike or jump rope. He also means he has difficulties in cutting with scissors. Keegan's sensory integration dysfunction is why he isn't aware that his clothing is twisted, his shoes are untied, or that there is food on his face. Occupational therapy will help correct these issues.

Please take the time to follow the links below to learn more about Keeg's health concerns. He has a lot to deal with right now. At an age where all kids want to be accepted, he's learning that he doesn't understand a lot of what goes on in a day. He's frustrated, uncertain, and at times even depressed by it all. Please keep him in your prayers. Learn more about the battles he faces daily at the following links:

Aspergers Syndrome:

http://www.webmd.com/brain/autism/tc/aspergers-syndrome-symptoms

http://www.ninds.nih.gov/disorders/asperger/detail_asperger.htm

http://www.mayoclinic.com/health/aspergers-syndrome/DS00551

Chronic Neutropenia:

http://www.bcm.edu/pediatrics/documents/4120.pdf

Chronic Thrombocytopenia

http://www.mayoclinic.com/health/thrombocytopenia/DS00691

Chronic Anemia:

http://www.mayoclinic.com/health/anemia/DS00321

Central Auditory Processing Disorder:

http://kidshealth.org/parent/medical/ears/central_auditory.html

Sensory Integration Dysfunction:

http://www.sensory-processing-disorder.com/

Cilia Immobility Disorder:

http://path.upmc.edu/cases/case233/dx.html

RIP Dixie

RIP Dixie

I don't know where to start. I guess first I need to tell you how we met Dixie.

Our family purchased a home in a very rural area in March of this year. It's perfect....the location is all we've ever dreamed of. We live in the midst of a forest, with a lake nearby. Neighbors are practically non-existent and we never hear sounds of traffic. Our lullabies are crickets, frogs and wonderful, peaceful, calming sounds of night.

About a week after we started moving in, my friend James and I were traveling with my three children to go pack up some more belongings at our former home. As we came near a stop sign, we saw something run across the road. We weren't quite sure what it was, but thought it might be a dog. Living in a rural area means that it's not uncommon to see animals get dumped. We stopped at the stop sign, opened the driver's door, and whistled. Up came running Dixie. She was wagging her tail so much the whole back half of her was swinging from side to side. Without hesitation she climbed into the drivers door, under his legs, across the center console and stretched herself across my 3 children's laps.

I'd always told my daughter, Keara, that when we bought a home, we'd get a dog. She'd waited 11 years. When we bought our home, she told Pookie (our 5 year old son with Autism) about our deal. He had prayed each night for a week for God to give us a dog. When Dixie stretched out across his and his siblings laps, he smiled as big as he could and with wide eyed wonder told me, “Mommy! God gave me a dog!” Whose to argue with a child's faith?

A few weeks after Dixie came into our lives, it was warm enough for the children to go swimming. You know the time of year....when the air outside is warm, the sun is bringing a warmth to your skin that you longed for all winter, and though no adult would ever get into the still chilled water, the kids all think it feels great! As us adults sat on the shore with Dixie, our children frolicked and played in the lake. Our 11 year old daughter, got caught in a current. Though she could paddle and keep herself in the same spot, she couldn't get up to shore. As I was getting ready to get in to bring her to shore, Dixie jumped in the water. To our shock and surprise, Dixie swam out to Keara, placed her collar under Keara's hand, and pulled her to shore. Everyone was shocked and thrilled.

Dixie seemed to also have been trained as a therapy dog. Though we have no knowledge of her background, she always stayed beside Pookie when he was out of doors. She would run beside him on his bike, and even get in front of him if she felt he went to far. He would lie down, resting his head on her and she was content. When he would start to have a meltdown, she would come and push against him.....calming him tremendously. She was in tune with him on a level I'd never seen between child and pet.

As time progressed, so did Pookie. His neurologist wasn't surprised. He'd told me the best thing I could do for him, and his older brother that has Asperger's, was to get them a good dog. He said he'd seen children advance and make progress with a dog that otherwise wouldn't have been accomplished.

A few months after God brought us Dixie, our daughter was attacked by a much larger dog. Dixie was a cocker spaniel mix. The other dog was a German Shepard/Lab mix. Dixie, despite being a fourth of this other dogs size, defended Keara with a vengeance. I have no doubts that she saved my daughter's life. At one point, Dixie stuck her entire snout into the other dogs mouth!

Dixie became loved by all the children that came to visit. Being that I have children on the autistic spectrum and with health issues, I am often visited by other families that have children with special needs. Dixie always connected with them. She offered them a sense of security and calm in a world these children often don't understand. Somehow, Dixie made everything OK.

When my 14 year old with Aspergers, Keeg, decided to walk to my parent's house, it was almost dark. I hadn't realized he had left, but merely thought he was taking a quite time in “his spot” in the woods near our house. When my daughter and I began to look for him, it was getting close to dark. He didn't answer, he wasn't in “his spot”, and we began to worry he was lost. We walked the drive, calling for him, but to no avail. I noticed that Dixie wasn't in the house, or outside. I knew that if Dixie wasn't coming to us when we started to call her, then one of two things was happening. Either Keeg was hurt and Dixie wouldn't leave his side, or they were out of ear shot. This realization prompted me to run back to the house so I could call 911. By now it was dark, and it was cold out. Keeg was only wearing shorts and flip flops. He has health issues and is unusually weak. I was panicked. As I started to call 911, a call came through from my parent's. I heard Keeg's voice say, “Hey Mom!” He hadn't realized the gravity of what he'd done. He said that when he started to leave our property and Dixie followed, he tried to run her home, but she wouldn't leave him. He said she stayed with him the entire time. At one point he said he saw some dogs and was scared, but Dixie barked a few times and that was that. He had gotten scared on the way, and cold, but Dixie kept him centered and moving forward. He said without her, he'd have probably hid in the woods on the side of the road. But, Dixie was there with him and so he knew it would be OK.

After that incident, Dixie got it into her head that she could leave our yard and try to get to my parents where she'd walked with Keeg that night. Although she occasionally wandered to our neighbors home (often invited by the renters that stayed there), she never went the opposite direction unless leashed. Yet, for some reason she figured that if she'd gotten to go that night, she was going to continue. Finally, we quit letting her go out with the boys unless she was leashed. She spent her time in the house and at times would drive me insane. She was used to running and jumping with Pookie, and since she didn't have that outlet outside, decided to do it inside. Pook of course missed the same play, and actively participated indoors.

A week ago tomorrow, my husband was involved in a terrible accident. He suffered a skull fracture and an epidural hematoma, pooling blood and air pockets that put pressure on his brain. He was air lifted to a hospital to be seen by a neurosurgeon. We are blessed to have a large network of prayer warriors, all who spread the word quickly and got many people praying for him. He was blessed, and quite surprisingly to all, came home after only 1 night in ICU, and 1 night on a general floor. He is in pain, and has memory loss. He also doesn't remember much of what happens in a day. He has to stay supervised for the most part, as often he doesn't remember his injuries.

While we were in the hospital, Dixie was left alone. Although she was fed, watered, and taken out.....she had not been alone since God brought her to us. I remember my horror when we got home from the hospital. There was not a square inch of floor uncovered. Toys from the kids rooms were scattered throughout the house, mixed with the garbage that had sat in the can unattended during our hospital stay. I couldn't believe one stressed out dog could have created such destruction.

I felt bad for having left her cooped up and unattended. I let her out and stayed with her to make sure she didn't run off. She stayed right around the house. Apparently her extended stay inside, only being taken out long enough to use the bathroom and only seeing someone for 10 minutes a day had fixed her issue of running off. She stayed close to the house, only venturing to the end of our personal driveway, then coming back. She was so happy to see us.

The next day, I had to run into town to grab some groceries. I couldn't find anyone to stay with my husband, but had to get him something to eat. I timed my trip so that he'd be sleeping and rushed to get things done. I came back in aprx 30 minutes. As I rushed to come in and check on him, Dixie jumped from the van. I checked on my husband, and went out. Dixie stood at the end of our personal driveway barking. I knew she was barking at the trespassing hunters. I'd seen their truck on my way in. Despite continually asking hunters to leave our property and the property adjoining ours, and explaining that we have to children with Autism, they still continue to return. Dixie stood at the end of the drive barking as I carried in groceries. Suddenly, she quit barking and started wagging her tail. She got excited and her whole back end started to move back and forth. I couldn't help but smile. Dixie would get so excited when she was going to get affection that she'd shake her back end so much she could barely run. She took off down the drive. I assumed that someone we knew was coming down the drive.

I was wrong. When I got the last of the groceries in, I went to get Dixie in. No one had come up the drive and I couldn't figure out what she had taken off the drive so happy about. She wouldn't answer my call, and I didn't see nor hear any sign of her.

I found her later. It was dark and I was driving out the drive. I just happened to get a glimpse of her green collar as I drove by. My heart sank. I backed up and cut on my high beams. There was Dixie, laying on the side of the drive in the grass. My heart sank as I realized she wasn't moving. “She's been hit by a car” I thought. Then I thought, “She's just hurt. The vet can save her!” I jumped out and ran towards her.....and then I saw it. An arrow.....extending out of her. She was dead. My husband said he was so scared and worried for me. He said it was as if I crumpled, but was still standing on my feet. He said he'd never heard anyone scream like that. My heart was shattering....all I could see was our beloved pet, our family, lying there with that arrow protruding.

I drove back home and called my best friend. Halfway up the drive I stopped as my sobs and screams were wracking me so much that I couldn't drive. I made it home and called my best friend who advised me to report it to the police. I called 911 and was told a deputy was coming out. I drove down to sit beside Dixie, worried that the coyotes or other animals would disturb her. My husband insisted on coming with me, telling me he could never rest knowing I was sitting there alone. I finally convinced him to go home and lie down. I drove down the drive to turn around. There were headlights coming towards me, but as soon as I spotted theirs, they must've seen me. They turned around rapid fast and took off down the drive. Instinct made me go after them and I was shocked to see a small pickup truck, very similar to the one that was there when I'd gotten home from the grocery store. I wrote down the tag number and returned to give it to 911, hoping that the deputy coming out would see them as he passed. When the officer arrived, I told him about the truck. He had passed them on the way, but had not gotten the message from dispatch. After getting all the needed information, he told me that unless they confessed, he couldn't do anything. If they confessed, the only thing he could do was give me the information so that I could go to the magistrate for “destruction of personal property”. I was dumbfounded. These hunters repeatedly trespass posted private land, lured my dog from our property and shot it, and nothing could be done. I was told that nothing could be done because their was a leash law, and my dog wasn't on a leash when he was killed. My heart sank. She'd been killed within 15 minutes of jumping from my van. I saw her run down the drive happily to greet her murderers, and never had a clue what was happening. I even remember hearing the truck drive up and leave as I was calling out to her, but never considered that any hunter would ever harm an innocent dog. Especially not hunters that had already been told that there were two children with autism living in the home. Did they have no heart?

After the officer left, I made a call to my best friend. With my husband having a brain injury, he isn't allowed to lift anything. There was no way I could bury Dixie as I'm not strong enough to dig through the hard clay rock. She couldn't be buried until the next afternoon, when a friend of mine would get off work and come do so. I had to get Dixie to the house and protected from the wild animals of night. I drove down to where Dixie lay. I could have walked there in less then 3 minutes, but it was very cold and I needed the warmth of the van. I took my camera and using the flash surveyed the area. I could see where the hunters had stood next to Dixie in the tall grass, even as she stood in the grass beside the drive that was mowed that very morning. The hunters and Dixie were on the neighboring property to ours.......property that is private and posted as no hunting allowed. Using my headlights and the flash of my camera, I walked a bit further down and saw a well worn path the hunters had been using to get from their truck to the adjoining property. I came back and took pictures of Dixie. I wanted to make sure that somehow her death would not be in vain, and maybe the photos would help that.

I sat with Dixie until my friend could arrive. As we lifted Dixie to place her on a piece of wood, I almost choked. When we lifted her up, we could see the other end of the arrow. We could see the angle, and how far the arrow protruded from her. Although I had never doubted that it was intentional, due to her having been shot beside our drive, it had never occurred to me exactly how cold hearted these hunters had been. They had stood directly over her when they shot her. They shot her through the heart and the evidence of this was pooling around her. Dixie would have been looking up at them with her adoring eyes, tail wagging so much that her behind swung from side to side. How could they have looked at that adoring face and brutally murdered her that way?

We laid her Dixie in the van and brought her home for the last time. My husband had been building a storage building next to our home. We put her in there and wedged a large piece of wood over the door. I laid awake for hours in bed that night. I just kept seeing those so called hunters standing over her, with her excited to be getting attention, and the arrow piercing her. Although I was glad it had been a shot straight through her heart, my own heart felt just as pierced. I cried throughout the night, muffling my sobs so as not to disturb my husband who was still in immense pain from his injuries.

I woke the next morning going over the needed chores to be done. Then the image of her laying beside our drive pierced through my mind. I got up quietly, pulled on my shoes and sweatshirt, and headed out with my camera. I walked this time. Though still cold, I needed that extra minute to prepare myself. I had noticed the night before that the end of the arrow with the quills had been broken off. I had remembered hearing in the past that hunters mark that end of their arrow with their initials or an identifying mark. They do this so that they know who made “the kill”. I searched the area where I'd found Dixie and as I walked back towards where their truck was parked, I found the broken piece of the arrow that had the quills. Dixie's blood was still on it. I found two pieces, laying next to each other. Yet, the very end, beyond the quills, was missing. The part where the initials would have been.

I then thought back to their returning that night. I figured it had to be the same truck, despite it having been dark and my vision being limited. Why else would they have turned around so rapidly and taken off like a race car driver down a curvy gravel road when they saw me? I wondered for a moment why, as I'd done the night before. I felt that they must've been coming back to take Dixie's body. I still haven't thought of any other reason they would have had to return.

I came back home and headed straight to the shower. I thought back over the last week. Finding out my eldest son has to have a lung biopsy done, my husband's accident and injuries, and now Dixie. I felt.....fragile. My husband woke as I came through our bedroom. I got into the shower and as the water poured over me, I lost it. The tears wouldn't stop and I was grieving for so many things. I was grieving for Dixie's life. I was grieving having to explain it all to my children. I was grieving for their heartache. I was grieving for all the children that loved Dixie and would have to be told. At some point, though I didn't notice, my husband opened the shower door, turned off the water, wrapped me in a towel and held me. I was thinking of all the ways I might have saved her. If I hadn't taken her with me, if she'd been on a leash in the van before I opened the door, if I hadn't carried in groceries first, if I'd gotten someone else to dog sit while I was caring for my husband. I must've spoke these out loud because I remember my husband telling me over and over again that it wasn't my fault.

That afternoon, my two best best friends came over to help me bury Dixie. James had been there the first time we saw Dixie, and now he was helping lay her to rest. It was a very emotional time for us and anyone watching the three of us would have surely wondered as to our sanity. It took a long time to shovel through the clay rock. When it came time to get Dixie ready and to lower her, my dear friends sent me on an errand so that I wouldn't have to see. By the time I got back, the grave was already half way filled in.

Yesterday evening my children came home. Due to their father's injuries, they had not come home yet. I spent the evening consoling Pookie. After he fell asleep, exhausted from his cries, our older two children came to me. They cried for hours before falling into restless sleep.

Dixie was a blessing to our family. I will never be able to understand how anyone could take the life of an innocent. I've never been able to understand how someone could get so angry at another that they would intentionally hurt their children. Maybe these so called hunters thought that by killing my children's therapy dog, that I would leave them alone and let them hunt here. Maybe they figured I'd settle for keeping my kids inside at all times for fear of them hunting next to my home. I guess I'll never know what they were thinking. Part of me hopes that they will always see her beautiful eyes and her wagging tail begging for love as they took her life. Yet, what I really want is for pets and children to be forever safe from these people. I want to make sure that somehow, these people are never allowed near my home again. I want to know that my children can jump on their trampoline, ride their bikes, and check the mailbox without being worried that they'll be mistaken for game. My children always wear hunter orange vest when venturing into the forest, even the forest on our own property. Should they have to wear it just to jump on the trampoline or to check their own mailbox?

I pray that somehow, some way, our home is restored to the dream home that we envisioned it to be. I pray that the children with special needs, and even those without, can come here again and not worry about whether or not they may be within feet of a hunters bow or gun. I pray that once again this home and these woods can become that which God intended it to be......... paradise.

RIP Dixie. Our hearts yearn for your presence. We love you and will never forget the love you showed us. 

Immunology, Upcoming Appts, more

Keeg visited the Immunologist this past week. I don't think I've ever seen so much blood drawn in one setting. We return in 4 weeks to get results. The doc did say that he hoped that it was cyclic neutropenia and that his WBC aren't always low. I let him know that Keeg has never had blood drawn and it shown his WBC or Platelets at a normal level. *sigh The doc and nurse assured me that if the blood tests show something that is "urgent" they'd call me immediately.

Keeg had his Occupational Therapy evaluation and we've already gotten the results. He has quite a bit of gross motor skills and more sensory issues then I realized. He'll be getting OT once a week along with some other suggestions made by OT.

This week Keeg will have his Central Auditory Processing Disorder evaluation done by an audiologist. We just got his little brother's results in the mail today.

We're adapting. We're discovering the path that we are walking, together. It's not easy, and I never really seem to know what I need to do to help him. I am trusting in God to show us the way.


Please keep praying for Keeg.

Thank you.

Perspective

Written by Mom:

For the last two years, I thought my son was being defiant. He was almost a teen when it first seemed that he was no longer listening to me, or doing as I asked. I assumed that he was going to be as rebellious as I had been at that age. As the offenses appeared to grow larger, he was grounded and fussed at.

I've spent the last few months letting go of those terribly wrong ideas I had. My son isn't defiant or rebellious. He has Asperger's and his world is different from mine.

Today, Keeg came out the door so emotionally distraught I was instantly in a panic. He was crying, shaking and holding a washcloth to his mouth. I was frantic....what in the world was wrong with his mouth? How bad was he hurt? What happened?

Keeg pulled the washcloth away from his mouth, showing a small speck of blood. I was confused. He was soooo upset, was there another injury? Through choking sobs, he explained to me that, as I had requested, he had stayed with his 5 year old brother (who is also on the Autism Spectrum) in the bathroom while his little brother was in the bath. Keeg explained that they had been playing well and having fun. Then, Keeg didn't do something exactly the way his little brother wanted. His little brother threw a Hot Wheel car, hitting Keeg's lip. It left a small cut in his lip, and knocked one of the brackets on his new braces loose. I still couldn't understand all the heart wrenching sobs. I understood that it hurt, but Keeg's despair was so intense.

My impulse was to tell him to just calm down, that it wasn't that big of a deal, and it couldn't hurt that bad. But, my inpulses have been terribly wrong the last two years, and I've learned to stop and try to look at the situation through Autistic lenses.

With a heart wrenching cry, Keeg said, "Mom, I was playing with him and staying in there. I was being good! I didn't do something just the way he wanted, and he hurt me Mom! I never want to play with him again!"

And suddenly, I saw.

Keeg wasn't wrecked with sobs because he was in physical pain. He was wrecked with sobs because even though he'd done his best and done everything "right", his little brother had hurt him. He was heartbroken. He didn't understand what had happened, he had not anticipated the event that happened, and he felt crushed under the weight of not having full understanding.

As I looked at Keeg, I saw him through my Autistic lenses. I saw that, just as when he was younger, he needed me to hold him, comfort him, and tell him it would all be OK. I realized that, as he had grown taller then me, begin to shave, and entered his teenage years, I had thought to put behind those "childish ways". I had never seen him as clearly as I saw him today.

Keeg is struggling. The world doesn't make sense to him. He doesn't realize why children his age don't hang out with him. He doesn't understand why people walk away in the middle of conversations. He doesn't understand why everything can seem to be going along a logical path, and suddenly an unexpected twist or change occur. He feels a depth of emotions that most teens have already learned to leave behind in childhood and that adults usually never return to. He feels despair at the overwhelming feeling that he never really knows what is going on.

Keeg cried out in despair a couple of weeks ago and told me, "I don't want to have Asperger's!"

I am his mother. I love him more then I could have ever dreamed possible. Together, we'll find the beauty of Asperger's and how it completes him and makes our family whole. Together we'll brave the world that is little understood and doesn't make sense. I will be his interpreter. He will achieve independence and accomplish his greatest dreams.

And through it all, he will teach the world that "different" is more then OK.

Latest Information

Keeg visited his neurologist the day before yesterday. We went over various tests that were performed during his latest hospital stay. It was determined that Keeg's magnesium, Vitamin B12, and his iron were low.  We've previously discussed how it appears that Keeg's body is not absorbing the nutrients and vitamins it should from the foods that he eats. He eats large quantities of food throughout the day and eats a healthy diet. However, it never seems that the foods benefit him as they would a healthy person.

The neurologist also mentioned that the results for tests related to Epstein Barr showed very high titers. Epstein Barr is a virus that causes mononucleosis. Mononucleosis was the initial diagnosis Keeg received at 4 years old (after several weeks of being sick). However, the doctors then explained to me that mononucleosis did not explain why his lab counts were so out of whack (many items low, many items high) nor did it explain why his immune system responded so violently to the Epstein Barr virus (EBV). Doctors assured me they felt that something else was wrong and causing the violent reaction to EBV, but they didn't know what it was.

Keeg has consistenly had a low platelet count and low white blood cells. The neurologist also said that Keeg has neutropenia, which is a low neutrophil count.

I asked if there was the possibility of Keeg's health problems having caused the Asperger symptoms he was now exhibiting and the neurologist mentioned the possibility of Childhood Disintegrative Disorder.

Yesterday, Keeg went to the first set of appointments with a neuropsychologist to evaluate him for Aspergers.  The doctor asked many questions about Keeg's childhood. The more I answered his questions, the more I realized that Keeg had always shown the signs of Aspergers. We talked about how at 5 years of age, Keeg's grandfather sat down and introduced Keeg to a game of chess. Keeg spent the rest of the night playing chess against various adults, doing so well that it was as if he'd played for years. Around the same time Keeg was introduced to the game "Pillars of Plato" and excelled at it as well. Keeg never really played with peers of his age, he preferred to hang out with adults. He would have conversations on a variety of subjects, advanced beyond his age. Keeg didn't like toys. He would play with Legos and HotWheels with racetracks. However, the typical toys for his age would only interest him long enough for him to tear them apart and determine how they worked. He had no interest in the way toys were supposed to be played with once he passed abotu 16 months of age. By 2 1/2 years old, Keeg had taught himself to read and was reading Dr. Seuss books. His reading progressed rapidly and in no time he was reading books many adults won't pick up. Keeg showed a special interest in the Bible, math and science. His Bible knowledge is very advanced for his age and one of his favorite things to do is to discuss the Bible with pastors. Keeg was very social as a child and could always determine which person in a crowd was upset or sad. As more and more was discussed, I could clearly see the the signs had always been there.

Keeg has several referrals. He is going to be evaluated by a pediatric immunologist. He has a referral to be evaluated for auditory processing disorders. He'll also be evaluated by an occupational therapist who can help him with the gross motor issues that have recently gotten worse, as well as get him in social skill classes.

As for Keeg, he's not happy. He told me that he doesn't want to have Aspergers. He said that it means people will look at him differently. Although I've always raised my children to believe that "different" is not bad, a dear friend pointed out to me that during teen age years, the desire to fit in and be accepted is very strong. Being diagnosed during those years is bound to be hard for any teen to swallow.

I'm thankful that Keeg was diagnosed after several years of attending Sibshops. Sibshops has helped teach him how to advocate for those with special needs, and I'm hoping he'll be able to apply those lessons to himself. He recently watched Temple Grandin and saw how she advocated for herself despite obstacles. Sibshops has taught that different is not wrong.

Keeg has several strong examples in his life that will help lead him and encourage him during this time. I can't help but look at the advantages that Aspergers will give him. He wants to be a missionary. His extensive knowledge of the Bible is a direct result of his Asperger's. What a wonderful gift God has given him so that he will be well equipped to serve God and teach others of God's unconditional love.

Keeg will still be able to meet his full potential and follow his dreams. The paths may involve more work, but as a dear friend told me last night.................."Doesn't everything in life worth having demand hard work?"

Intro

Keeg is my 14 year old son. This blog will be about his journey. His journey with chronic health problems, severe environmental and food allergies, and suspected Asperger's.

Background info:

Keeg was born full term at 9 and 1/2 pounds and 23 inches long. He had breathing issues at first and it was 45 minutes before the doctors were able to get him breathing well on his own.

At one month old, Keeg turned blue and I rushed him to the ER. Three days later it was determined that he had situs inversus totalis (all his internal organs on on the opposite side of his body) and severe acid reflux with projectile vomiting.

The first 4 years of Keeg's life, he suffered from febrile seizures. He would go from a normal temperature to a temperature upwards of 104 degrees within a few minutes. The fast rising temperature would trigger the seizures.  The highest temperature he had was 106.8

At 4 years of age, I went to wake Keeg one morning only to find that he was completely lethargic. He could not talk, sit up, walk, or even swallow. We went to the ER where he was admitted and numerous tests run, but the doctors could never pinpoint the cause of his severe lethargy nor his constantly changing labs. This scenario has continued to be repeated a couple of times each year. Yet, despite more hospitilizations then I can count over the last 10 years, the cause of his recurring fatigue is unknown.

Keeg suffers from migraines that rage anywhere from several times a month to several times a week. His migraines are severe and he's not responded to any of the typical migraine medications.

About 2 years ago, Keeg started exhibiting other problems. He became consumed with reading, having to read every written word he sees (even the tags in clothing). He started to have difficulty with day to day task and struggled with social interactions. Recently we got a referral to have Keeg evaluated for Asperger's.

Although I'm writing this initial post, I hope that Keeg will be able to use this blog to help others see the world from his eyes. Keeg has a unique perspective and I think the world would be enlightened by hearing it.

Please continue to pray that we find a way to help Keeg with his health issues as they've gotten increasingly worse of late. We are praying for healing for Keeg!

Thank you for following Paths From Keeg's Soul.