We're took a two week vacation to my sisters house in Mr. Carmel TN. We took Matthew to the Smokey Mountains this time. If you watch the video, you'll see why they call them "Smokey".
We had a great time. We even got a tiny bit of snow while we were there. Only bad news is that Matthew's seizures changed again. He's having tonic clusters when he is going to sleep instead of when he is waking up. His seizures are always changing. I think he's having more this week because of ear infections. He went to the doctor today. He's on drops and antibiotics. Normally his seizures increase or change whenever his is sick. It's hard to tell when he's sick because he's always so sweet and angelic. The only way I know that he's got an ear infection is he'll not want to suck his bottle. I guess it hurts his ears to suck and swallow. That makes it very hard to get food and water down him! He's doing a lot better already.
Hope you enjoy the video! Matthew saw the Christmas Lights in Gatlinburg when we were coming back from the Mountains. Gatlinburg is one big light show even a month before Christmas. It's beautiful there! We saw lots of deer and visited some very old homes and mills. After that, we bought our jar of blackberry jelly and went back to my sisters house. Unforturnately we didn't see any bears! We were looking though.
Charlotte
I came across this address today. You can go to the websites (Forbes) and Write yourself an email. Then you can pick if you want it to be emailed to you in 1-20 years. I picked 20 years.
It's hard to think that far ahead. My angel probably won't be here in 20 years and most likely, I won't either!. .. I wrote a lot of things that learned in life. Of course you can guess it was mostly about matthew.. I also wrote it to "whomever" gets the email If I have kicked the bucket by then or if Jesus comes back first. I kind of hope Jesus comes back first to get us because this world is going to be a bad, bad place to live in, in twenty more years. Some people don't like to look back on their past but I would rather look back on my past than look into our future because my past doesn't seem so bad when compared to how things are going to be twenty years from now.. sounds crazy but I have my reasons.
Anyway, I need to get in bed if I am going to get up at three AM. We are going to Tn for almost two weeks,,,, (Thanksgiving). SO KEEP US in your prayers while we are traveling. If feels great to be able to take matthew places without is being such a hassle. He is a great car rider and we have fun singing and dancing while we are driving. (yes it can be done. lol)
Anyway
Good Night and don't forget to check out that time capsule thingy.. it's great.
Charlotte
It's hard to think that far ahead. My angel probably won't be here in 20 years and most likely, I won't either!. .. I wrote a lot of things that learned in life. Of course you can guess it was mostly about matthew.. I also wrote it to "whomever" gets the email If I have kicked the bucket by then or if Jesus comes back first. I kind of hope Jesus comes back first to get us because this world is going to be a bad, bad place to live in, in twenty more years. Some people don't like to look back on their past but I would rather look back on my past than look into our future because my past doesn't seem so bad when compared to how things are going to be twenty years from now.. sounds crazy but I have my reasons.
Anyway, I need to get in bed if I am going to get up at three AM. We are going to Tn for almost two weeks,,,, (Thanksgiving). SO KEEP US in your prayers while we are traveling. If feels great to be able to take matthew places without is being such a hassle. He is a great car rider and we have fun singing and dancing while we are driving. (yes it can be done. lol)
Anyway
Good Night and don't forget to check out that time capsule thingy.. it's great.
Charlotte
I know when we first started our Odyssey with Matthew, we had a lot of questions. Especially when it came to seizures.. There are so many different types of seizures it is unreal! Who would have thought that Matthew would have a "laughing" siezure or who knew it was a seizure whenever he was moving his legs constantly like he was riding a bike? Yes, that's controversial but I know for a fact that they were seizures because as soon as He was put on medication for seizures the cycling stopped.
Anyway. I added a link to the right side of this page entitled "Myoclonic Jerk Video". Or you can click of the title of this post to get to it.
I know I searched everywhere all over the net and couldn't find a video of a myoclonic jerk so I could see if that was what Matthew was having. So i hope this video helps you if you've found this site searching for Myoclonic Videos.
I forgot to mention that lipsmacking. He did that right after the myoclonics and would have a "chill" run all over his body and would have the "shivers".
Matthew was younger when he had these. He outgrew them and now he has one or two tonic seizures a day. I don't have those on video yet. What are tonic? Well just imagine the myoclonics ten times worse as what you see in his video. Instead of one right after the other, he has one and holds it. His face gets white as a sheet. His lips have not turned blue.. yet but he holds it for about 10 seconds and his arms and legs are stiff. He always has his towards the right. It is followed by some quick body jolts but only about 2 or 3 jerks... We heard that if you multiply the siezure he's having now times 5, it will probably take the form of a grand mal siezure which is also a form of tonic siezures.
The best way to explain the seizures to your doctor is NOT to "explain them" but get it all on Video.
Matthew is sound asleep. We are leaving Monday for TN. Yep, Back to the Mountains! I love it. I feel like a bird out of prison when we visit the mountains. It's not been very long that we have been able just to pack up and go whenever we wanted. One reason, the main reason is because matthew was a "cry baby".. He would fuss and whine everywhere we went, non stop and nothing could stop him unless we got him out of his wheelchair and held him. I have a totally different little boy now. He will sit for hours or lay for hours if I let him. He smiles when he gets up and smiles when he's going to sleep. He NEVER cries or fusses.. only when he's hungry.! Praise God for that and I don't want to ever forget how much he has changed. An answered prayer again. He is really living up to his screen name "angelbaby" now.
Charlotte
Here is some information on the types of seizures.. this is not all of them but the most common type of seizures.
Seizures are generally divided into 2 main types:
Focal: involving a limited brain region
Generalized: involving the entire brain. Therefore always associated with loss of consciousness.
Focal seizures may spread to the rest of the brain, therefore becoming focal seizures with secondary generalization.
Partial (focal) seizures
Simple partial seizures (without loss of consciousness)
With motor signs (uncontrolled muscle movements)
With somosensory or special sensory symptoms (smell, vision,...)
With autonomic symptoms (nausea, blood pressure changes,...)
With psychic symptoms
Complex partial seizures (with loss of consciousness)
Simple partial followed by a loss of consciousness
Impaired consciousness from the onset
Partial seizures evolving to generalized seizures
Simple partial with secondary generalization
Complex partial with secondary generalization
Simple to complex to generalized
Generalized seizures
Typical absence seizures (petit mal): consists of staring for a few seconds then returning to full function, where activity was left at the onset of the seizure, as if nothing occurred. The patient has no recollection of the event. This is unlike most other seizures that will be followed by as after seizure (or postidital) drowsiness and confusion that may be prolonged at times.
Myoclonic seizures: Usually presents with rapid muscle jerks. These may be caused by:
Benign (non-epileptic myoclonus): similar to the jerks one has when falling asleep.
Benign myoclonic epilepsy: A rare disorder that starts between 4 months and 2 years
Severe myoclonic epilepsy: A disorder that results in chronic progressive brain damage
Lenox-Glastaut syndrome: A severe epileptic disorder, associated with atypical absence (atonic and myoclonic), slow spike–wave complexes on EEG, and mental retardation.
Clonic seizures:
Tonic seizures
Clonic tonic seizures (grand mal)
Atomic seizures: Loss of muscle tone (drop effects)
Unclassified epileptic seizures: seizures that do not fit in the above classification, such as neonatal seizures and febrile seizures.
Anyway. I added a link to the right side of this page entitled "Myoclonic Jerk Video". Or you can click of the title of this post to get to it.
I know I searched everywhere all over the net and couldn't find a video of a myoclonic jerk so I could see if that was what Matthew was having. So i hope this video helps you if you've found this site searching for Myoclonic Videos.
I forgot to mention that lipsmacking. He did that right after the myoclonics and would have a "chill" run all over his body and would have the "shivers".
Matthew was younger when he had these. He outgrew them and now he has one or two tonic seizures a day. I don't have those on video yet. What are tonic? Well just imagine the myoclonics ten times worse as what you see in his video. Instead of one right after the other, he has one and holds it. His face gets white as a sheet. His lips have not turned blue.. yet but he holds it for about 10 seconds and his arms and legs are stiff. He always has his towards the right. It is followed by some quick body jolts but only about 2 or 3 jerks... We heard that if you multiply the siezure he's having now times 5, it will probably take the form of a grand mal siezure which is also a form of tonic siezures.
The best way to explain the seizures to your doctor is NOT to "explain them" but get it all on Video.
Matthew is sound asleep. We are leaving Monday for TN. Yep, Back to the Mountains! I love it. I feel like a bird out of prison when we visit the mountains. It's not been very long that we have been able just to pack up and go whenever we wanted. One reason, the main reason is because matthew was a "cry baby".. He would fuss and whine everywhere we went, non stop and nothing could stop him unless we got him out of his wheelchair and held him. I have a totally different little boy now. He will sit for hours or lay for hours if I let him. He smiles when he gets up and smiles when he's going to sleep. He NEVER cries or fusses.. only when he's hungry.! Praise God for that and I don't want to ever forget how much he has changed. An answered prayer again. He is really living up to his screen name "angelbaby" now.
Charlotte
Here is some information on the types of seizures.. this is not all of them but the most common type of seizures.
Seizures are generally divided into 2 main types:
Focal: involving a limited brain region
Generalized: involving the entire brain. Therefore always associated with loss of consciousness.
Focal seizures may spread to the rest of the brain, therefore becoming focal seizures with secondary generalization.
Partial (focal) seizures
Simple partial seizures (without loss of consciousness)
With motor signs (uncontrolled muscle movements)
With somosensory or special sensory symptoms (smell, vision,...)
With autonomic symptoms (nausea, blood pressure changes,...)
With psychic symptoms
Complex partial seizures (with loss of consciousness)
Simple partial followed by a loss of consciousness
Impaired consciousness from the onset
Partial seizures evolving to generalized seizures
Simple partial with secondary generalization
Complex partial with secondary generalization
Simple to complex to generalized
Generalized seizures
Typical absence seizures (petit mal): consists of staring for a few seconds then returning to full function, where activity was left at the onset of the seizure, as if nothing occurred. The patient has no recollection of the event. This is unlike most other seizures that will be followed by as after seizure (or postidital) drowsiness and confusion that may be prolonged at times.
Myoclonic seizures: Usually presents with rapid muscle jerks. These may be caused by:
Benign (non-epileptic myoclonus): similar to the jerks one has when falling asleep.
Benign myoclonic epilepsy: A rare disorder that starts between 4 months and 2 years
Severe myoclonic epilepsy: A disorder that results in chronic progressive brain damage
Lenox-Glastaut syndrome: A severe epileptic disorder, associated with atypical absence (atonic and myoclonic), slow spike–wave complexes on EEG, and mental retardation.
Clonic seizures:
Tonic seizures
Clonic tonic seizures (grand mal)
Atomic seizures: Loss of muscle tone (drop effects)
Unclassified epileptic seizures: seizures that do not fit in the above classification, such as neonatal seizures and febrile seizures.
I'm just wondering how much space e blogger is giving me? I'm wondering if all these videos will crash their system or better yet,, mine? ha.ha. I might let this be my last video. At lease until the calous on my right wrist goes away. I need a softer mouse pad I guess. Ha.
We had fun today making this video. Matthew was really getting into the Music Video thing. He put his heart and soul in it. He danced everytime I said to dance and then some. It was a fun day.
Charlotte
We had fun today making this video. Matthew was really getting into the Music Video thing. He put his heart and soul in it. He danced everytime I said to dance and then some. It was a fun day.
Charlotte
OK,
I finally taught myself how to upload videos from my mom camera. Now I've got hours and hours of video of matthew I want to get on CD. This is the first one. I found some really cute ones. This one is uploaded on Sharkle.com and youtube.com. It has really helped sharing my videos there to direct traffic to matthew's website. This one will especially because it's like an advertisment for his website.
Hope you enjoy it. Matthew had a rough night last night. He woke up laughing. I don't know if it's those gelastic seizures again or maybe he his guardian angel Brandon was tickling him??... It was more of a cute laugh and not like the laughing seiuzure but with kids like him, you just never know. Anyway, he decided he would stay up from two am to five am! I guess I better go to sleep too before he decides t wake up.. one more thing.
Seeing the old videos made me realize how thankful I am that he has adjusted to his world. I had almost forgotten that the first two years of his life was a mess. He didn't even sleep all night until he was two and a half years old. I can remember driving around at three am trying to get him to sleep. His mind just didn't know when to go to sleep but his body was tired. The Neuro said he would probably always be like that but guess what? Wrong... He sleeps all night and sometimes 10 hours if I let him. He sleeps like a normal kid his age. He has an enlarged hypothalamus and that's why the neuro said that. Plus he is on a very strick schedule. I wish I was. I better go to bed!
Good Night
Charlotte
I finally taught myself how to upload videos from my mom camera. Now I've got hours and hours of video of matthew I want to get on CD. This is the first one. I found some really cute ones. This one is uploaded on Sharkle.com and youtube.com. It has really helped sharing my videos there to direct traffic to matthew's website. This one will especially because it's like an advertisment for his website.
Hope you enjoy it. Matthew had a rough night last night. He woke up laughing. I don't know if it's those gelastic seizures again or maybe he his guardian angel Brandon was tickling him??... It was more of a cute laugh and not like the laughing seiuzure but with kids like him, you just never know. Anyway, he decided he would stay up from two am to five am! I guess I better go to sleep too before he decides t wake up.. one more thing.
Seeing the old videos made me realize how thankful I am that he has adjusted to his world. I had almost forgotten that the first two years of his life was a mess. He didn't even sleep all night until he was two and a half years old. I can remember driving around at three am trying to get him to sleep. His mind just didn't know when to go to sleep but his body was tired. The Neuro said he would probably always be like that but guess what? Wrong... He sleeps all night and sometimes 10 hours if I let him. He sleeps like a normal kid his age. He has an enlarged hypothalamus and that's why the neuro said that. Plus he is on a very strick schedule. I wish I was. I better go to bed!
Good Night
Charlotte
In almost every picture we have, me or someone is always holding Little Matthew. So I decided to made a little video with one of our favorite songs. If it doesn't load fast enough here on the web page ,you can go to http://www.youtube.com/?v=TkJrNd19iVs to view it.
Ganny Charlotte
Ganny Charlotte
My Reward is Just a Sweet Little Kiss. Matthew's doing pretty good. He had his flu shot a few weeks ago. I think I should have gotten one too. I am coughing and my throat hurts. Probably sinuses. I am eating antibiotics and coughdrops with vitamin c. Hopefull it's just a sinus infection.
Yesterday I took Matthew outside. It was a beautiful day. The weather has been perfect for him. As soon as I walked outside he started squealing. It's hard to describe it. It's a very High pitch,, long... Squeal. He kicks and giggles too. I should have him in his wheelchair but I decided to carry him. (Old habits are hard to break)
We walked out onto the porch and I let him "walk" while I held him up. He didn't want to walk, he wanted to run! So I let him run with me holding him under his arms as long as I could.... He was squealing all the way. He loves the sun on his face and it just drives him crazy whenever the sun flashes through the trees. I think that's the angels way of playing peekaboo with him. He just loves it and you can tell because he squeals and giggles even more.
I pick him up and he turns his head back and looks right at me, or I should say through me and opens his mouth so I can kiss him. He leans his head as far back as he can and that means I can have more kisses if I want it.
Next I ask him if he want to "swing swing". He nods his head with and unmistakable YES!!! Yes!!!.. As we swing he leans back and forth trying to get his old grandma to go higher and faster! He's just like his daddy.. He likes going fast!
I turned him upside down on my lap and let his head hand down and he thinks that's just the best thing in the world. It's like being in disney land or something. Ha.ha.
Finally we get bored, I mean I get bored and try to think of something else he can do outside. That's when we head to Pappas shop and get his keys to the lawnmower.
Finally after convincing papa to let us use his brand new lawnmower, we're off.
You should have heard the sounds he was making. We stayed in second gear going really slow. The whole time he is squeeling and leaning back and forth which of course means GO FASTER OLD GRANDMA! So I put it in fourth and man we are flying all over the place.. He will laugh uncontrollably and then lean way back and give me sugar and more sugar. When we hit a bump he even thinks that just great.
Finally we get finished and walk back towards the house. He's tired and has his head lying on my shoulder. That's his way of saying Thank You. You can just feel the love oozing all over me. lol
He keptd a smile on my face all day. We played most of the day. Didn't do ANY housework. It was still there when I got up this morning and guess what? I didn't do ANY housework today either and it's stil there. (Just twice as bad!)
It takes a lot out of me to try to keep him active but as you can see it's worth it.
I wonder how many people that have normal kids take the time no matter how tired they are to go outside with their kids and play with them. I know that I didn't spend nearly enough time with my kids doing things like that but I can't change the past and they turned out pretty good but I still have regrets because one is grown and married, one is now a Marine and could possible be going to Iraq and the other is well on his way to being on his own.
I guess when you have a special child like Matthew you have to learn to slow down and enjoy life. You try desperately to "slow down" time instead of rushing through life. Some people don't even realize they are doing that until they wake up one day and their kids are grown and leaving home.
I have learned patience, committment,responsibility,understaning,all from one little boy that has never spoken a word to me. I have learned it just from looking into eyes that cannot see and my rewards are angelic smiles and kisses.
Good Night!
Charlotte
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