Levi and AHC

Soooooooooooo, Kristen has suggested I tell what it is exactly that Levi has. Can I be stubborn and say that I don't want to? That I want it all to just go away? Most days I can put up those walls and casually talk about Levi and what he has and that oh ya, by the way.......he could die any day anytime.......and what he goes through is excruciatingly painful.

I don't know why but this weekend the emotions are a bit closer to the surface. I've allowed that fear to creep in again which I know is wrong. Very wrong. I hate not being in charge sometimes. Oh if I could only make it all go away and have some sort of reassurance that Levi is going to live a long and healthy life.............but I can't and for some reason this weekend I am scared to death of the day he has to leave this life. I do this every once in awhile. It passes and I am able to stand up straight and look forward with fierce determination. Or is it denial.........what ever it is I don't have it this weekend. When you have a child like this you go through the grieving process way too many times. You would think once is enough. Sniffle.....it is over........move on. Then something happens and it triggers it again and you have to go through it AGAIN and AGAIN and AGAIN.

Here's the thing. Thanksgiving is coming.......then Christmas. Levi has a hard time with the holidays. Last Thanksgiving was quite quiet as Levi was down with an attack so we put him on a mattress next to the kitchen and we quietly gave thanks and had dinner. Maybe I am afraid of something happening to him during the holiday season. The holidays would be difficult if I lost him during that time........Okay, moving on..........No sense crying over something that hasn't happened or isn't going to happen. Honestly, where is a bag of chocolate chips when I need them? Oh yea........I ate them already.

My son Levi Rubow is 5 years old. He operates more on a level of 2 and 3 years of age. Levi has been diagnosed with a rare disease called Alternating Hemiplegia of Childhood. There is a website for more information: http://www.ahckids.org/ . This disease is recently found and so that is why the “Childhood” as those who have been diagnosed with this disease are/were children. The oldest known person to have this is in her 30's. Levi is one out of 200 children in the entire world to have this disease and one out of 100 in the United States. It is a difficult disease in that no two cases are exactly the same. There are similarities but that is all. It appears that over time the children degenerate ending up in wheel chairs, not able to write or hold pencils when there were able to before. How long these children's life expectancy is, we do not know. Several have passed away from this disease. There is no cure as of yet.

Levi is also mentally handicapped. Levi suffers from seizures and is on the autistic spectrum. Levi is affected by AHC (as we call them for lack of a better word) “attacks”. The attacks can be triggered by just about anything. Over stimulation, swimming, change in temperature, loud noises, hitting his head, etc. Hitting his head is pretty much a guarantee that he'll go into an attack. When Levi has an attack it runs through a series of phases. The first phase is as the attack comes on Levi begins to go through intense pain and can feel his body start to become paralyzed. He also has multiple seizures so this is a painful and terrifying time for Levi. He will become as an infant on the ground in the fetal position screaming and crying and throwing up. This can last for a half hour or longer. During this time we can usually start to tell which side is going to become paralyzed but not always as sometimes he will switch sides through the attack. As the attack progresses he will then become completely paralyzed on one side of his body. If it is the right side of his body it will be more severe and last longer. If it is the left side then it is less severe and won't last as long. At this point Levi then goes into the what we call the coma stage. He is as if in a coma and remains so for several days up to a week or longer. If it is the right side of his body then he is in this coma stage longer. He will lose his eye sight and the control of his mouth. Because he loses control of his mouth there is the threat of him suffocating or swallowing his tongue. There have been children who have died because of this. Suffocating in the night because of an attack. He can't swallow at this time so dehydration is also a big enemy as we try to keep him hydrated with a tube we place between spaces in his teeth as his jaw is usually clenched and trickle fluids down his throat. Another concern is he is still throwing up usually so making sure the fluids stay down and do not drown him are also a threat. If it is the left side of his body then Levi can see and use his mouth but his mouth is still affected a little bit. Certainly not as bad as if on the right side. When these children have these attacks there is no guarantee that they will either survive or that they will come out of them meaning they will become unparalized and get their motor skills back. The last phase is when Levi starts to recover. This is again very painful as the feeling returns to his body.

Each time Levi has an attack he has to relearn some things. Because his disease is neurological Levi has a difficult time with sensories and autistic behaviors. A lot of time Levi is in a great deal of pain or he may wake up and his body doesn't feel right. He has many meltdowns because he does not understand and doesn't “feel right”. Levi does not understand danger and boundaries. During a 4th of July parade when the crowd got up to leave Levi left with the crowd and we could not find him. He had seen a balloon which he loves and followed it. Thankfully, the story has a happy ending in that a kind woman found him and noticed he seemed to be alone and brought him to a police officer. I happened to be talking to that police officer asking for his help in finding Levi. Anytime we are out Levi has a tendency to wander off. He can't be alone ever not only because of this tendency to wander off but because of his safety and his seizures.

So there you have it. This is what our little angel lives with. You know the cool thing though? He doesn't know any different. He is happy.........and that makes me happy.