I decided to read my Angel Wings poem I wrote, inspired by my little Peekaboo Man, Matthew. You'll also hear our favorite slow dance song at the end of the poem.
Click on the audio and listen to my poem and then read my post below.

Today was a different kind of day. The "big" question was asked by Matthew's pediatrician today. She asked if I ever thought about a DNR meaning Do Not Ressistate (Revive)If Matthew was to ever stop breathing. I was kind of shocked buy she always talks to me to see how we are doing and she can get very personal which I guess is her job.

I told her I couldn't sit down and make that decision until the time came for us to do it. We live one day at a time and that's the only way we are making it. If Matthew was suffering, in pain and the doctors said there was no hope left and there was nothing more they could do, I would probably say DNR but I don't know that for sure. I know if he just stopped breathing while in the hospital for siezures, or something simple, I would make sure they did everything to revive him. It's just not an option right now and when It become an option, I know we'll make the right decision but I don't even want to think about that now. We've come to far to let him go without a FIGHT to keep him alive as he is now, happy, healthy and a blessing to everyone that meets him..

That's like making funeral arrangements. I have not because I don't want too. God will take care of everything financially. It may be the wise thing to do but it's not a part of our "one day at a time" life.

HE's asleep now, doing lots better. We go to the neuro for a check up and then we leave Saturday for his surgery in Shreveport on Monday. I'm still scared about it but I remember when he has tubes in his ears and a cyst removed from his neck. I realized afterwards that I just worried too much because he came out just fine from the surgeries. He is a tough little boy and I know with God's help and your prayers everything will be just fine.

Good Night, Gotta get up early!






this is an audio post - click to play


If you are like me, you are always trying to find "something" for your child to do besides sit or lay around all the time. Matthew outgrew his Jumper a long time ago.
The tray on the jumper only came right above his hips with no support to keep him from falling over because he has no balance. He can however use his legs really good. He knows how to jump if you hold him with his feet on the floor.




I knew if I could get the tray part up higher, like under his arms, he could use it.
I cut out the fabric seat that was in it and sewed a strip of soft foam material for the straddle. After adjusting a few times, I finally got it right.


In this pic, I had to take up the straddle a little more. It was too high up under his arms!

I also added two strips of wood on the arch in his room for extra support. He is almost three feet tall and weighs 25 lbs.

It "looks" uncomfortable but it's not. It tends to bunch up between his legs but he has on his diaper and a thick pair of pants. I checked and there was no "redness" between his legs after being in it for an hour.

Sometimes, he will jump so high that both feet are off the ground. It's really funny to watch because he gets tickled when he gets it going up and down. It's a great way for him to be active. It has also helped with his congestion. Jumping around can really loosen that stuff up!

I wish I could find one that someone has already made for kids like Matthew but so far I've had no luck.

Charlotte
I tried to add this to my Thanksgiving Post but IT WOULDN'T LET ME!

FEARLESS TURKEY SLAYER, A HUNTING STORY BY CHARLOTTE KAPPLER:

I went Deer hunting one year and my Husband put me right in front of a food plot behind a "blind" on the ground. It was freezing cold and all you could see of me was my nose sticking out a little. I was almost asleep when I heard a loud sound. I looked up and about 20 turkeys, hens and a couple of toms landed right in front of me. Let me remind you this was years ago and I had never even seen "wild turkey's" but I knew what they were when I saw them. John always says that turkeys are smart. If you move an inch they can see you and will fly away. I sat there shaking all over. They were only about 10 feet in front of me. The tom knew I was "something" sitting there and walked over to me really slow. He was so close, I could have reached out and touched him, then he walked back to the group.

I tried to be really quiet and pull my rifle up. Every time I inched my rifle up, the Tom would stop pecking in the food plot and look up and all the hens would "freeze" and not move. Then the tom started pecking and so did the hens. This went on for what seemed like hours. Finally I got my gun up and you also should realize, I had never shot anything before and I hate shooting rifles because they are loud and make my ears ring. No, it was not Turkey season "yet" but I felt like I could get by with it "IF" I shot one. I felt fearless and the "hunter" instinct I never knew I had rose up in me and I aimed my gun not at any partcular one because I figured with all those turkey's I should just shoot in the middle of em' and one should fall dead. I closed my eyes and pulled the trigger. BOOM!!!!!!!!!!!!!!!!!!!!!!!!!! You could hear the shot for miles and miles. Once my ears quit ringing and I got my sense of control back I looked and there were turkey's flying everywhere. Most were in trees. I walked out into the food plot and looked for my BIG OLE turkey but there was not a turkey anywhere. Not even a feather. It was an experience I will never forget and one that no one will believe because I was the only one there. I couldn't tell the story when we got back to camp because it wasn't Turkey season. I told them I missed a Big Ole Buck! I guess it will be just one of those hunting stories I'll tell for years to come.
HAPPY THANKSGIVING, DON'T FORGET TO ASK THE BLESSING AND MOST OF ALL
Don't eat too much, you'll regret it later.


THIS IS THE SIBLING OF THE TURKEY WE ARE EATING FOR THANKSGIVING. ABOUT 23 LBS OR SO. ALMOST WEIGHS AS MUCH AS MATTHEW!


Here are some more delicious Turkeys we are raising.
I would like you to meet, Christmas, New Years, Fourth of July and Next Thanksgiving!

HEY HERE'S SOME TURKEY FACTS!


Did you ever wonder why you get sleepy after a Turkey dinner? The reason is that the Turkey has this ingredient in it's meat, that is a natural relaxation hormone. "Tryptophan"

I need lots of Tryptophan, don't you?




The turkey is one of the most famous birds in North America. In fact, Benjamin Franklin wanted to make the wild turkey, not the Bald Eagle, the national bird of the United States!
The turkey's popularity comes from the American people's love of eating the bird for special occasions like Thanksgiving and Christmas. Glad he didn't. I don't think I want to eat "Bald Eagle". Sound Nasty.

The wild turkey we usually see in this photo is not the same as the domestic turkey that we serve at Thanksgiving.
Domestic or tame turkeys weigh twice what a wild turkey does and are raised on farms for profit.
Most domestic turkeys are so heavy they are unable to fly!

That reminds me. I went Deer hunting one year and my Husband put me right in front of a food plot behind a "blind" on the ground. It was freezing cold and all you could see of me was my nose sticking out a little. I was almost asleep when I heard a loud sound. I looked up and about 20 turkeys, hens and a couple of toms landed right in front of me. Let me remind you this was years ago and I had never even seen "wild turkey's" but I knew what they were when I saw them. John always says that turkeys are smart. If you move an inch they can see you and will fly away. I sat there shaking all over. They were only about 10 feet in front of me. The tom knew I was "something" sitting there and walked over to me really slow. He was so close, I could have reached out and touched him, then he walked back to the group.

I tried to be really quiet and pull my rifle up. Every time I inched my rifle up, the Tom would stop pecking in the food plot and look up and all the hens would "freeze" and not move. Then the tom started pecking and so did the hens. This went on for what seemed like hours. Finally I got my gun up and you also should realize, I had never shot anything before and I hate shooting rifles because they are loud and make my ears ring. No, it was not Turkey season "yet" but I felt like I could get by with it "IF" I shot one. I felt fearless and the "hunter" instinct I never knew I had rose up in me and I aimed my gun not at any partcular one because I figured with all those turkey's I should just shoot in the middle of em' and one should fall dead. I closed my eyes and pulled the trigger. BOOM!!!!!!!!!!!!!!!!!!!!!!!!!! You could hear the shot for miles and miles. Once my ears quit ringing and I got my sense of control back I looked and there were turkey's flying everywhere. Most were in trees. I walked out into the food plot and looked for my turkey but there was not a turkey anywhere. Not even a feather. It was an experience I will never forget and one that no one will believe because I was the only one there. I guess it will be just one of those hunting stories I'll tell for years to come.





HERE'S A TURKEY TO PRINT OUT AND COLOR FOR THE KIDS!
HAPPY THANKSGIVIN' YA'LL!




First of all, I have been trying for a few days to post more audio clips with no results. I don't know what's going on. I emailed the help desk but have not heard back yet. I plan to read my poems that I wrote on audio.

Can you see the little cartoon on your right? It's called "unky moods". I can pick the different moods and it automatically posts to my journal. I will be posting Matthew's moods, not mine. Today he was "stuffed up" so I used that one. I think those things are so cute!

I also added a chatter box. this is where you can leave me a message and I'll reply.. You can see it next time you log onto my site.

The lights went out again! We had some really bad weather last night (rain and wind) that blew in a cold front. It's already in the lower 40's and suppose to get around 37. I had the turkey in the roaster oven and a cake in the other oven and was starting my mixer for the potato salad when the lights went out. They were out a couple of hours. Everythings, cooking again. I bet there was some upset folks when the lights went out! We always do our cooking the day before Thanksgiving.


I was crocheting by candle light. Boy did I feel like a real GRANNY then. I was in the rocking chair but that was just a little too much GRANNY for me so I moved to the recliner. (Don't laught 'cause Im only 39!!!) John, my husband was watching TV on a battery operated 5" black and white TV I bought at a garage sale. He was six feet away and I know he couldn't see it. Ha.ha. He needs glasses but he won't admit it. Hold on I gotta check my cake! (Not done yet.)
(Thats a Hershey's chocolate cake mix with one box of instant chocolate pudding in it with 4 FRESH EGGS from our own layers topped with Chocolate chip Icing. The Turkey we are having is one we raised ourselves. It weighed about 20 lbs. The top wouldn't close on the roaster over so I had to cover it in aluminum foil and set the top on it that way... it's almost done!!) When John killed it, it slapped him across the face with his humongous wings, so the Turkey let him know how he felt about it. It was a pretty good slap too!

This is the first year in a long time that my older sister Grace and family won't be here. She's part Yankee and Part Redneck. At least she was about five years ago. Now her dialect is almost full blooded Yankee!!! We try to teach her Daughter Jess how to speak Southern when she comes to visit. Like , Bye Ya'll! Grace sent a flower centerpiece for the table saying, wish she could be there. I told her we will imagine the flowere are HER! We'll set three extra chairs for them. I told her we would have to get someone to run around inside the house and make a lot a noise so we can pretend Jessie was here too. (Ha.ha.) We will miss them but we decided to get together after the first of the year.

Matthew has been congested lately. No fever, just runny nose and congestion. Even a cold for him can turn into something bigger if we are not really careful. At the first sign of congestion or a cold I start breathing treatments twice or three times a day depending on how bad it is. I have a suction machine to keep his nose clear. He gets Robitussen DM and Benedryl until it's gone. It's bad having to give him the extra medicines when he's already on so much other medicine.

He gets back pats for the congestion all throughout the day whenever Im holding him and I also lay him on my lap facing down at an angle and do the back pats to loosen the congestion up.
I do everything I can to avoid the hospital and to keep him from getting pneumonia but sometimes it's just ineveitable.

His seizure are getting less and less. Still no more laughing seizure since we got home from the hospital. He's still having the jerks but they are "softer". He's not as irritable and has been a little angel all day. You should see my house. It's actually clean!

He goes to sleep around 6:30 or 7:00 because to the schedule they had him on in the hospital with the medicine. I don't like him going to bed that early because he gets up too early or if I want to take him to town he passes out before we finish what we're doing like shopping or something.

He sleeps so sound it worries me a lot. I am constantly checking on him. I have to turn him over several times a night because he can reposition himself on his own.

He got bored today but was still being good in his walker. I got him out anyway and we slow danced. He just EATS THAT UP! He lays his head on my shoulder and doesn't move a muscle! My favorite song to slow dance to is "If I lost You" by Randy Travis and "My Redeemer Lives" .
I was going to put a snipet on audio but for some reason THE THANG AINT WORKIN!.

Other songs we danced to was, I'm gonna love you for Ever, Randy Travis, The Angels Cried, Alyson Crousse and Alan Jackson, Three Wooden Crosses and one called "Looks Like we've made it by SHania Twain.


Here are the the word to "If I Lost You." I mainly like the second verse and the I absolutely love the Chorus.

Theres been times ive felt like half a man
life had me down on my knees. Troulbed times i dont understand
why they happen to me

I have struggled through the darkness
And i have found the light of day
But if i lost you
CHORUS

There'd be no sun shine shinin through
I dont know what in the world i would do
If i lost you
VERSE TWO

Like a ship with no harbor,
Like a bird with no wings,
Like a fish out of water,
A dreamer without a dream,

I have learned about losing
I could lose most anything,
but if I lost you
thered be no sun shine shinin through
I dont know what in the world I would do
if I lost you


I gotta go check my cake and finish the potato salad . Keep Matthew in your prayers always!
GAnny
this is an audio post - click to play




PJ (The Canary) Here's What I think happened when PJ flew away and was gone for two days before he finally made it home again.

After you read the story please take a look at the pictures above! You can print this out to color the pictures if you like. The names of the animals in the stories are names of my children,my nieces and nephews.



On Two Wings and a Prayer

A Story for My Grandson Matthew

By: Charlotte Kappler

One Beautiful October day, PJ was just admiring himself in the new mirror his Ganny had installed in his bird cage. He knew he was the most beautiful bird in the world because his Ganny told him he was a "pretty bird" almost every day.

He always checked his face to make sure it was nice and pretty incase Ganny came by to visit him. He would look left and right up and down in the mirror until he thought he looked perfect. His favorite song in the world was also Matthew’s favorite song. It’s called Rubber Ducky. PJ loved to look at himself in the mirror and sing along with the song.

Ganny would turn that song up real loud and PJ would sing while Ganny and Matthew danced across the floor. He looked forward to hearing the song every day around five o’clock. After they got to sing and dance, it was bath time and supper time. PJ always said his night prayers withMatthew and Ganny before bedtime.

While admiring himself in his mirror, he heard the most beautiful sound. It was asound he had never heard before. It made the same sounds that he did. He turned around and looked out the window and there was a little bird brown bird on the other side of the window. It was singing and PJ knew what it was saying. The little bird, named Nick Nick asked PJ to come outside to play. PJ said that he couldn’t because he Ganny didn't think he could make it outside by himself and he had never been outside before.

Every day Nick Nick would peck on the window and pick on little PJ and dare him to come outside. He had never been further than sitting on the top of his bird cage and he really didn’t want to go outside. Ganny told him that there were animals that might eat him if he flew away and he would have to find his own food and water too and he would be very cold because it was getting to be winter time. He was different from other animals and he might not be able to find other canaries to love him like Ganny and Matthew loved him.

Early the next day, Nick Nick pecked on the window and said "PJ you are not a bird!" "You are a chicken!" Well that made PJ very upset because he had seen a chicken before and he knew he was not a chicken! He was a pretty bird because Ganny told him he was. He said, "I am not a chicken". "They are ugly and dirty and most of them can’t even fly". The little bird said, "You can’t fly either!" And PJ said "Oh yes, I can!"

So PJ decided to prove to Nick Nick that he was by no means a chicken! He waited and waited until his clipped wings had grown back. He tried them out a few times when no one was looking. Next, he waited for the right chance to fly outside.

Ganny left his cage door open so he could stand on top of his cage. But little did she know what PJ had up his wings today.

PJ waited and waited. Finally someone left the front door open. He took a deep breath and flew out the front door like a B52 Bomber Jet. He flew out the door and straight up in the air as far as he could. He looked down and got really dizzy and scared so he found a tall oak tree to land in.

He was so nervous his heart was beating one hundred milesan hour. After he caught his breath, he whistled for Nick Nick, his little bird friend. Nick Nick said, "I can’t believeyou did it". "You are definetly not a chicken". But Nick Nick said, "You look funny." You don't look like us Sparrows." I better not hang around you." Your feather are too colorful and you might get us killed because every animal and every human can see you." See ya later PJ." Nick Nick flew away. PJ was so sad. All those days of waiting and getting up the courage to fly away to play and now Nick Nick did not want to play with him.

PJ looked around and saw the big blue sky above him and the prickly green grass below him. He checked to see if there were any "mean" animals around and got a running start and off he went up, up, up into the clouds. He had a great time. He landed in a tall Pine Tree to take a break. Just then, a big hawk named Mr. Poo swooped down and almost grabbed him. Mr. Poo said, "Well, I can't believe I missed!" "I never miss!" and he got mad and flew away.


PJ jumped up on another limb and and two little brown squirrels named Ms. Katie and Ms. Jessies started throwing rocks at him Ms Katie said, "You better get away from my nuts before I bite you". Ms. Jessie said, "Hurry up and get out of here before we pound you". "We've been working hard all day to gather these nuts and you can't have them!"


PJ flew out of the tree as fast as he could fly and landed on the muddy and cold ground and a big green snake named Mr.Will wiggled up beside him and said, "Sssssssssss comeer witta birdie, gimme a hug witta birdie, Sssssssssssss". PJ needed a hug but he’d never gotten a hug from a snake before. "Why doyou want to hug me? " said PJ. " Sssssssssss I always hug my dinner. That is right BEFORE I EAT IT Ssssssssssssss!" PJ screamed and flew away as fast as he could.

PJ said, "Oh no!" What have I done? I have to go home! So he flew up, up and up and looked for his home but no matter how hard he looked, he could not find his home.

PJ perched on top of a telephone pole and started to cry. It was dark and he was thirsty and hungry and he missed his family, his mirror and especially Baby Matthew.

It was one of the coldest nights of the year. PJ wished he was in his warm cage and he really was missing his mirror. His feathers were a mess and he was sure he had something on his face. He found an old baby bird nest in the tree and pulled the old stinky straw over him so no other mean animals could get him. When he said his night prayers he promised Jesus if he ever found his way home again, that he would never fly away again even if the front door was wide open. PJ finally went to sleep although he was still cold and hungry.

The next morning he was awaken by a really skinny crow named Big Josh. He was the skinniest crow PJ had ever seen and he was playing music with an old washboard. PJ thought that was really wierd. Just then, Big Josh screamed at PJ and said "Get out of my tree dummy". "This is my tree". "You want to see my muscle?" Don't make me use them on you dummy". PJ was scared and flew up and upand away. He looked all day for his home and still could not find it.

Tired and hungry, he perched on top of an old house that had a mean bulldog in the back yard named Tootsie. Tootise saw PJ and said, "You wanna play with my bone little bird?" PJ knew by the look on Tootsies face that he better not play with a dog that had those two big scarey teeth pointed at him".

He flew on top of a green mailbox and the tears started flowing again. When he wiped away his tears he saw a big German Sheperd Dog named cameron and a little white dog named Lexie staring right into his face. They barked at him and scared him almost to death. He didn'tknow how much more of this his tiny bird heart could take so he flew down the road into an old wood shed. He hid between some old window panes and cried and cried. He began to pray and said, "Jesus, I promise if you will just show me the way home, I’ll be a good bird and I’ll never leave Matthew and my family again". It was getting late and once again, he had to sleep in the old wood shed all by himself, still cold and hungry.

The next morning, he was awaken by the sound of some familiar music. PJ said "Hey, I know that song". He started singing with the music. He flew out of the old wood shed and followed the sound of the delightful music. "Hey," PJ said. "That’s the rubber ducky song". "And there’s my house!" He flew to the front door but it was closed. He flew to the back door and it was closed too! " Oh no! " He said. "I’m home but I can’t get into my house!" He perched on top of a chicken pen and started to cry.

Just then an old White chicken named Ms. Mary slowly walked up to PJ while he was sitting on the pen. This chicken really smelled. Her feathers were dirty and her feet were muddy. She had just pecked a nasty worm from the ground and swallowed it whole! Ms. Mary then said to PJ, "Hey Lil Bird"! "What you doin outside?" Are you crazy?" PJ said, "Yes, yes I am crazy. I want to go back inside." Ms. Mary and all the other chickens laughed hysterically. "Why would you fly outside into this bad old world when you have everything you need inside?" "Don't cry little birdie, you will be okay, I have been praying for you even before you flew away because I saw Nick Nick teasing you at the window daring you to fly away." I also saw you when you flew away". "The outside world can be a cruel place for a cute little birdie like you". "I'm so glad you are home". Then she said,"I knew you would be back". "Don’t worry, you’ll be able to get in soon. Papa John will be out to feed us at six thirty." PJ was so happy because it was almost six thirty. He was so excited he flew to Ms. Mary and hugged her over and over and told her " You are the most beautiful chicken I have ever seen." You were the only one that was nice to me when I needed help". Ms. Mary said, "Well thank you PJ, no one's ever told me I was beautiful before and I'm glad I could help." Ms. Mary smiled and proudly strutted off back to her chicken pen like she was Mrs. America".

Suddenly the back door flew open and there was Papa John, Ganny Charlotte and Matthew. PJ was so excited he could hardly wait but was a little scared to just fly in the house so he sat on the cage and had a really sad look in his eyes.He was trying to say he was sorry for flying away.

Papa John said "Hey look Ganny, on the chicken pen."Ganny said, "Oh I don’t believe it, It’s PJ!" Baby Matthew smiled and giggled and was very happy that PJ came home. PJ was glad they were not mad at him. He flew up to the porch where they were and Ganny put him in his cage. PJ walked as fast as he could to his mirror and fixed his feathers and cleaned himself up real nice for his family. After he cleaned up he gobbled up some delicious bird seed and drank a lot of water. He was glad he was home sweet home. He felt protected, safe and warm.

Ganny and Matthew were happy he was home too because they had prayed for him to come home both nights that he was gone. Ganny told Jesus if he sent PJ home, she would never leave the door open so he could fly out and Jesus heard her prayer too.

They played the song "Rubber Ducky" just to welcome PJ home and PJ danced and whistled as Matthew and Ganny danced across the floor.

The End.........


Religious Morals of the Story:

Even though you have wings, it doesn't mean you are ready to fly but if you decide to try always remember that prayer will bring you home again. Never Judge a person by their appearance or talk bad about them because that person could be the most wonderful person in the world and could very well be your best friend and finally, don't wait until bad things happen to pray, pray everyday.

By: Charlotte Kappler

this is an audio post - click to play
Sometimes my mom tells people I am Matthew's slave. It's funny but that's how I feel sometimes. But I also know that I am not a slave to Matthew, I am a servant. I found these on the net and thought I would share how I feel about being a servant. Not only to Matthew but too God because you see, without God, I would be nothing for Matthew. I would have rejected him like a lot of others have. I would be too busy for him or would always find things to get out of caring for him. THat's how I would have been 10 ten years ago. Thank God, Im not that same person I was then. God knew I had to change because Matthew was already in his plan ten years ago even though Matthew is only two and a half.

I would like to line them up and here's what I want to tell them and one day, I will.


Matthew should be on the top of your list. Visiting him should be a priority. You should feel privilidged to help care for him or to buy him diapers, babyfood, etc. You should cherish every moment with him because the day will come that Matthew will earn his wings back and God will call him home. Have you ever taken him to the park? Have you ever seen the way he loves the whirlpool? Have you ever danced with him?
Have you ever held his hands and let him walk barefoot on the grass? Have you ever sang him to sleep? Have you ever woke him up just so you could hold him even though it was 3am? Have you ever knelt beside his baby bed and prayed for him? Have you ever just sat and stared at him noting every little roll of fat or wrinkle on him?
Have you ever wrote a poem or a song about him?
There's no if's and's or but's about it. He will not live very long. Do what you can now before it's too late. You should call EVERY day and tell him, I love you if you can't visit. There is nothing in the world more Important than Matthew and you'll have plenty of time to think back on all the things you'd wish you had done after Matthew is gone. God sent him for a reason and evidentally some people are just not listenting. THose are the people that will never see Matthew again even after he dies. THat's one thing I don't have to worry about because I know I will see him again in Heaven. I will feel very sorry for the family that did not take part in the life of this God Given Baby after he's gone. Have you ever put everything on hold just for Matthew? Did you give up something that meant a lot to you for Matthew? These are all the things you will think of after he's gone. I can almost promise you that but it's not too late to change things now.

I want to thank those that do call and those that do help and even those that try to help who are not physically able but want to help so bad, you can see it in their eyes. And thanks to even the strangers that handed me checks for Matthew right when we needed it most. THanks to Angel Wish. A group of Great people with big Hearts that helped raise money for Matthew's Van, Whirlpool, new addition and various other expenses. That's part of being a servant too. God says don't outcast the man that has not money, food or clothes and don't make him your slave but be HIS servant. Offer him money food and clothes. Im not completely without money food or clothes but Im sure you get my meaning.


Here's some things I found on the net.

Greatness in God’s economy is about lowering yourself to be a humble servant. Jesus measures greatness by servanthood. To those who have been humbly serving. All you do for Christ is not in vain. One day Jesus will call you great in the kingdom of God. So continue to fight the good fight. Don’t grow weary in doing good. Be a lifelong servant, and your reward in heaven will be great.

Jesus demonstrated the greatest act of humble service the world will ever know, for us. He’s called us to follow His model and serve others, but we’ve been saying, ‘no, I’m too busy.’ It’s time to stop that disobedience. It times to start being a humble servant.
Remember the Lord’s definition of greatness, ‘If anyone wants to be first, he shall be last of all and servant of all.’

I'd give my life for Matthew without even thinking about it. If Matthew needed a heart or liver or lung, I would give it if I could. Even in his condition, just to let him keep living so he could still go on touching the lives of individuals who will let him.
Good NIght.

I wanted to save my guestbook entries so here they are, hundreds of them.
If you want to leave a comment, just click on comment at the end of this journal entry.


Matthew Aaron's Gayle
From
California
Time
11/1/2004 6:11:40 PM
Comments:
I don't remember what link I followed to find you people, but I am glad I did. I sat and cried last night while reading this. For I am a Grandma to an Angel also, so I KNOW.
Name
Charlotte
From
MS/USA
Time
9/28/2004 6:29:18 PM
Comments:
Cannot update because it won't let me. Please do not delete until I can figure out what's going on. charlotte
Name
April Macias
From
New Mexico
Time
7/11/2004 10:37:29 PM
Comments:
He is very precious and I'm glad I got to see just how much love has gone into this site for him. Now I know how to do my daughters website, she also is at babiesonline.com under Aureliana Macias it's new so forgive me if I don't know it off hand. I commend you for your strength and compassion. Keep up the great work I know Matthew and Jesus are proud.
Name
SUE BREWER PAUL
From
MS.
Time
6/30/2004 10:26:41 PM
Comments:
YOU HAVE DONE SUCH A WONDERFUL JOB. THE WEB SITE IS BEAUTIFUL.AND YOU ARE SUCH A WONDERFUL GRANNY!!!!!!
Name
Michelle Lerch (mom to Alyson Lerch)
From
Illinois
Time
6/30/2004 11:22:08 AM
Comments:
Thank you so much for sharing, I know I looked at this page some time back, but not sure if I signed it. Having a special liss child myself I know how much suffering, and joy at the same time these children can have. Keep up the good work, and hugs and kisses to matthew.
Name
Shelby
From
Mississippi
Time
6/28/2004 11:01:10 PM
Comments:
awe! hes so cute! it amazing how a lil boy can have so many people to love him.I know his uncle Korey and he talks about Little Matthew alot! he loves him very much.Matt looks like a very cute boy and i wish ya'll the best of luck! I love ya'll and keep loving him so much!
Name
Kerry and Connie Lowis
From
Arizona
Time
6/24/2004 10:06:39 AM
Comments:
Our best to Baby Matt. Thanks for touching our lives with your's. We love you and pray for you, your family and Ganny. God Bless, Kerry and Connie (480) 325-0832
Name
Linda
From
PA
Time
6/3/2004 10:56:56 AM
Comments:
Angels are given to special people. I guess you know that now.
Name
Stephanie & Chris
From
ny
Time
6/2/2004 5:30:20 AM
Comments:
What a wonderful grandma Matthew has! He is extremely lucky to have so much love this is what will make him be the best he can be! You are so amazing thanks for sharing his site :)
Name
Danielle and Sebastian
From
Nebraska
Time
4/1/2004 8:59:46 PM
Comments:
good luck with everything
Name
Debbie
From
Maryland
Time
2/15/2004 12:48:44 PM
Comments:
Hey Matthew, Coming up on the big 2 soon. I bet you are becoming a handsome young man!! All that blond hair and blue eyes.
Name
Holly Kurschner
From
Wisconsin.
Time
2/2/2004 7:14:48 AM
Comments:
This web page for Matthew is very beautiful..
Name
Jill Laurent
From
Missouri
Time
2/1/2004 5:56:54 AM
Comments:
What a handsome little guy! : )
Name
Dianna Cooper
From
Virginia
Time
1/24/2004 1:15:49 PM
Comments:
It is so good to hear his Grantmother is so involved in this childs life. Not many Grandmothers are this involved.
Name
ellie
From
CA
Time
1/8/2004 10:18:42 PM
Comments:
hi, i'm ellie and i'm 2 1/2 years old, primary micro ... my mommy showed me this page and i thought i'd let you know that you are in our thoughts and prayers! God Bless!
Name
C. Laverne Russell
From
Alaska
Time
12/27/2003 4:42:53 PM
Comments:
I will keep Matthew in my prayers.
Name
dawn davis
From
Michigan
Time
11/12/2003 1:45:55 PM
Comments:
Matthew is adorable!
Name
Judy VanNewkirk
From
AR
Time
10/30/2003 8:07:20 AM
Comments:
Hi 'lil Buckaroo. Just wanted to let you know I peeked in on you and think you're still too cute for words. We're all proud of you buddy. Keep up the good work! Judy Erik's mommy in AR
Name
Tina Lincoln
From
new zealand
Time
10/27/2003 6:07:36 PM
Comments:
Little Matthew sure is an angel. These children are sooooo close to God. Thankyou for sharing
Name
Diana Swartz
From
Arizona
Time
9/24/2003 7:02:28 PM
Comments:
Hello! This is a beautiful website! I have a daughter who has been diagnosed with CP who was born 1 1/2 months before Matthew. Her name is Abigail. She is an awesome gift from God. I too am a Christian and have had many prayers for her. Keep believing for all things ARE POSSIBLE WITH THE LORD!
Name
Christy Beebe
From
Wisconsin
Time
8/30/2003 3:44:00 PM
Comments:
I just wanted to say your little boy is so beautiful, what a wonderful little boy he must be. God Bless You All.
Name
Jamie Penrod
From
Ohio
Time
8/28/2003 11:55:36 AM
Comments:
What a little cutie you are :) Hugs Jamie mommy to marissa7 sweet angel Mariah 7/19/99-12/28/00 &Tyler 1
Name
Matthew Brewer
From
Mississippi
Time
8/27/2003 8:19:31 PM
Comments:
Hey! Keep gettin' better Matthew.
Name
Mike Bartenhagen
From
Nebraska
Time
8/25/2003 6:58:37 AM
Comments:
Hi Matthew. What a wonderful Grandma you have and what a fine looking young man you are. Mike Bartenhagen. Father to Broc. Diagnosed with IS July 2002.
Name
wanda coletta
From
ontario, canada
Time
8/25/2003 5:22:27 AM
Comments:
What a sweetheart! Im going to go wipe the tears from my eyes now!
Name
Olivia Yule
From
Montana
Time
8/23/2003 10:22:34 PM
Comments:
It is so nice to meet you Matthew, it sounds like the first year or so has been very exciting and new for everyone. Charlotte, you sound like a very special grandma. Olivia
Name
Betty Madsen
From
Mississippi
Time
8/21/2003 9:58:28 AM
Comments:
Thank you for sharing Matthew's life and your family's. Today was the first time I've been able to visit this web site. See you at the pool. Take care. Betty
Name
Margaret Charles
From
Florida
Time
7/27/2003 8:17:18 PM
Comments:
Dear Granny & Matthew, It was a blessing meeting you today. What a brilliant Granny you have and all I can say is that you are both angels sent by God to reach out to many people all around the world. May God bless your entire family and fill you with strength to continue the path he has created for you. God Bless you both. Love and prayers Margaret ( the irish girl that plays pool with granny!!!! )
Name
Rubaiyat
From
TX
Time
7/15/2003 4:55:29 PM
Comments:
Matthew, It was exactly one year ago that I first visited your website and signed the guestbook. After a year, what a coincidence that I am reading new things about you; looking at the wonderful pictures. Best wishes to you.
Name
Nicole Seele
From
IN
Time
7/5/2003 2:13:20 PM
Comments:
What a wonderful tribute!
Name
Shirley Faye
From
Florida, USA
Time
6/18/2003 11:09:14 AM
Comments:
Thank you for sharing a part of Matthew's life. God Bless You All!
Name
Donna
From
NY
Time
6/16/2003 5:10:14 PM
Comments:
Matthew is adorable! My son Vincent is almost 26 mths old. He has microcephaly and cp. I thank the Lord Jesus that I found your website. I also hold onto the promise of Jeremiah and Isaih! God bless you and your Angel!
Name
Miriam de Gunst
From
Holland
Time
6/7/2003 1:47:15 PM
Comments:
Hi Ganny and Matthew, I just love your site, just as much as I enjoy reading your stories and poems at the schiz-kidsz. See you there! Bye, Miriam (mom to Noah, 25 months and so very 2 year old!)
Name
Brenda Meyer
From
Kansas
Time
6/7/2003 11:14:03 AM
Comments:
Hi Matthew. I am Gage's Nana. Another Angel like you. I love your beautiful smile and know God placed you with a loving family so that you would touch the hearts of many. I bet you and Gage were best friends in Heaven before you came here. I pray for continued lives to be touched by your presence and for The healing us our precious Lord Jesus in your life. Love Gage's Nana Brenda I also think your Ganny's poem would make a beautiful song. http://www.themeyersmusic.com
Name
Jodie Gibson
From
NSW, Australia
Time
6/7/2003 4:58:45 AM
Comments:
Hi Charlotte! I'm glad I finally stopped procrastinating and visited your Matthew's site. I have been following your progress and challenges on the microcephaly group, and I am glad that things are going well for you all. I checked out Matthew's photos, and am amazed how much he looks like my angel, Cameron! PLease feel free to visit our site and see our angel and his big sister, Danielle - www.gibstuff.net/family. I will visit regularly to see how Matthew's going. All the best, love, hugs and best wishes, Jodie. xxx
Name
Tammy Copley
From
West Virginia
Time
6/6/2003 7:33:08 PM
Comments:
Hey I love your web page it is great. I also have a child with IS she is now 9months old we found out when she was 4months old, the doctor put her on Sabril and she is doing excellent she has been seziure free for about 2 1/2 months. If you ever have any questions please feel free to email me or if you have any information you would like to share email me. Thanks and best of luck with Little Matthew.
Name
Helen Miko
From
CT
Time
6/6/2003 6:38:29 PM
Comments:
Charlotte, I'm so happy that Matthew is going to be a star! Please save the piece from the paper and sand it to me!!!!!! Love, Helen P.S.-- are you going to go to the get together?
Name
Aunt Grace
From
PA
Time
6/2/2003 4:33:56 PM
Comments:
WOW! Do I miss that little angel! I have several people emailing me for an update! We're waiting........
Name
Charles Tonet
From
Vicksburg MS
Time
5/12/2003 7:32:57 PM
Comments:
Member of the Angels Wish Committee
Name
angel
From
mississippi
Time
5/8/2003 12:58:37 AM
Comments:
he is adorable!!!! we will be praying for you matthew and god bless!!!!
Name
shirley may
From
ms.
Time
5/7/2003 7:40:29 PM
Comments:
GOD BLESS YALL
Name
Gerald Mckenzie
From
ms
Time
5/7/2003 3:48:56 PM
Comments:
God Bless
Name
dEBORAH lOVINS
From
Mississippi
Time
5/7/2003 3:28:50 PM
Comments:
Working hard for you on the Angel's Wish! You are truly an angel to us.
Name
dEBORAH lOVINS
From
Mississippi
Time
5/7/2003 3:28:48 PM
Comments:
Working hard for you on the Angel's Wish! You are truly an angel to us.
Name
dawn mum to iwan nr.4
From
south wales
Time
5/1/2003 10:39:30 PM
Comments:
mathew aaron, you have a wonderful crib, it was rewarding, thank you for sharing it with us. l/h/xx iwan an mum
Name
Tracy Walbridge
From
New Hampshire
Time
4/11/2003 5:42:38 PM
Comments:
thanks for sharing your life with us Matthew, YOU are the most adorable baby. May God bless you and your family
Name
Aunt Grace
From
Pa (but my hearts in Miss)
Time
4/8/2003 6:56:45 PM
Comments:
More pictures PLEASE!!!!!!!!!
Name
Aunt Grace & Jessica
From
Pa
Time
4/3/2003 5:00:30 AM
Comments:
Need an update!
Name
Nicole Hall
From
NC
Time
3/27/2003 2:41:06 PM
Comments:
Hello there! I am a caretaker of a child with lissencephaly PMG. What special "angels" God gives us!!!God bless you sweet Matthew. You're a cutie pie!!!
Name
Aunt Grace
From
PA
Time
3/14/2003 7:05:19 PM
Comments:
Matthew, you are such a little Angel! I enjoyed my visit so much and I miss u even more! JEssie wont even let me sing the Wiggles song "Head, shoulders, knees and toes..." cause she says it's your song! Love, Aunt Grace and Jessica
Name
Ronda
From
MS
Time
3/11/2003 9:07:09 PM
Comments:
Matt you sure have grown. We love you very much The Lovetts
Name
Julie Bringman and Zachary Anderson
From
Michigan
Time
3/7/2003 7:14:01 PM
Comments:
Hes a cute little angel
Name
Helen Miko
From
CT
Time
2/24/2003 11:22:11 AM
Comments:
Matthew's curls look adorable!!! Did the doc say he was having Infantile Spasms? (that's what they sound like from your description) If so, there are a lot of other drugs they can try 1st before they have to resort to surgery. Give me a call, or e-mail me!! Love, Helen
Name
Korey Pugh aka Bubba
From
mississippi,vicksburg
Time
2/24/2003 11:05:12 AM
Comments:
I love you very much you are special to our family you are an angel! Love,Bubba
Name
Katie Patton
From
Mississippi,vicksburg
Time
2/24/2003 11:02:34 AM
Comments:
I love you very much! Love your couzin Katie
Name
Becky Sirigiano
From
New York
Time
2/23/2003 8:00:40 PM
Comments:
Happy 1st Birthday Matthew. You are growing to be such a big boy. This is Michael's Mommy and I read your site all the time and it brings tears my eyes. For the dear Lord above really does give us such beautiful angels. Michael has Pachygyria and sometimes I see him struggle and it makes me remember that he truly is my special guy. Love Becky mommy to Michael 19.5 months old.
Name
bonnie
From
canada
Time
2/22/2003 7:59:28 AM
Comments:
thanks for sharing your life with us Matthew,you are the most adorable baby.May God bless you and your family
Name
Rev. Barry Mohney
From
PA
Time
2/22/2003 7:56:36 AM
Comments:
Hi Matthew: I am Aunt Grace's Pastor here in PA. We have you on our "Prayer Chain" and pray for you often. May God bless you and your family.
Name
Ruth Ryan
From
Kansas
Time
2/18/2003 1:04:04 PM
Comments:
Mommy to Angelface Brittany, PMG, Age 11. Our prayers are with Matthew. God bless all of you.
Name
Sandy
From
MS
Time
2/18/2003 11:03:03 AM
Comments:
Happy birthday big boy!!!
Name
Sandy
From
MS
Time
2/18/2003 11:02:41 AM
Comments:
Happy birthday big boy!!!
Name
Betty Stephens
From
Louisiana
Time
2/12/2003 1:52:55 PM
Comments:
Work for the Trust Dept. in Shreveport and I'm so glad to see Matthew doing so well. My churh has Matthew on our Prayer list. I can give them a good update on Matthew and HAVE A HAPPY BIRTHDAY, MATTHEW!
Name
Brian O Connell
From
Eire (Ireland)
Time
1/30/2003 11:23:38 AM
Comments:
Can see from the site, your eternal love for Matthew and hope ye may have splendid life together.
Name
Sandi T. Grant
From
Mississippi
Time
1/27/2003 2:29:53 PM
Comments:
'Lil Matt is the son of my son Ben's best friend, Matt. I have followed 'Lil Matt's condition since he was born. Mary and Matt are two of the sweetest people I know. I know God will take care of all of them. For all we know 'Lil Matt may grow up to be the president of the United States. God knows, we need some good people in politics. Love You, Sandi Thompson Grant
Name
BEVERLY YEARWOOD
From
MS
Time
1/25/2003 7:23:08 PM
Comments:
MATTEW- GOD GAVE ME A MIRACULOUS HEALING FROM SCHOLIOSIS WHEN I WAS NINE. MY LEG GREW RIGHT IN FRONT OF ME. I PROMISE YOU THAT GOD IS HEALING YOU 100%. JUST BELIEVE IT WILL HAPPEN.GOD WANTS YOU WELL.
Name
Sandra Culbertson
From
Mississippi
Time
1/23/2003 10:46:49 AM
Comments:
He is such a cutie. He looks like Cory when he was a baby. Charlotte you are not only his Grandmother but, his Guardian Angel.
Name
Dottie Lee (Baby Matt's Aunt Dottie)
From
MS
Time
1/5/2003 8:44:32 PM
Comments:
Matthew is growing leaps and bounds and proving everyday that God truly does answer prayers and that the day of miracles is not past but that he gives us miracles everyday. He is doing so well because of the prayers he has received and the unending love that he feels when he is held by the people who love him most. There is much strength in love....therefore...He is a very strong little boy. He has taught us much. Oh those kissable cheeks!
Name
Angel Stevens
From
Ms.
Time
1/4/2003 8:15:46 PM
Comments:
He obviously is getting lots of love and giving it as well. Many blesings to you little one.
Name
Anita Lynn
From
NC
Time
12/30/2002 3:16:14 PM
Comments:
Way to go Matthew! He's getting so big. My con't prayers!
Name
Bert Friedman
From
Mississippi
Time
12/25/2002 9:42:40 PM
Comments:
Beautiful Baby
Name
Layla Parker
From
Mississippi
Time
12/20/2002 5:39:57 PM
Comments:
that was so sweet!!! see ya'll later!!!
Name
Helen
From
Oregon
Time
12/10/2002 1:09:29 AM
Comments:
Please give MAtthew a great big kiss for me. He's such an angel. My Ashley is 3yrs, She has schizenceaply and cerbral palsy She's my angel too. MAtthew stories from his grandma were great to hear.
Name
Nigel Nicholson
From
Taiwan
Time
12/2/2002 1:23:26 PM
Comments:
He looks so so much like my little boy Hank. God bless.
Name
Beth Howell
From
Delaware
Time
11/27/2002 8:39:12 AM
Comments:
Matthew is gorgeous!! I've looked at Matthew's pictures before, through the Schiz Kids website. My grandson, Michael, has schizencephaly, too. And he's doing great! Good luck with everyting.
Name
Helen Miko
From
CT
Time
11/25/2002 10:12:24 PM
Comments:
Charlotte, This site is just wonderful! You should show everyone the wonderful picture you did of my angel Brandon too. God gave you a wonderful talent to help ease my grief. You are truly a wonderful person. Love, Helen mom to angel Brandon 12/7/95 to 3/4/2000
Name
Kimberly Anderson
From
New Jersey
Time
11/25/2002 8:17:53 PM
Comments:
Granny, You are awsome !!! Great job on the site, as always. Matthew is such a sweetheart, and obviously soooooo loved. What a lucky little boy.
Name
Pushpinder Paul (Father of Sonam Paul)
From
Calif
Time
11/25/2002 6:21:15 PM
Comments:
Your love is very tranparent. I am very proud of you and Mathew is very luck to have you in his life. Best wishes always!
Name
Jennifer Elling
From
California
Time
11/25/2002 3:42:51 PM
Comments:
It is encouraging to hear how well little Matthew is doing. Praise God! We are praying for him in California. I am Nancy Childers' sister-in-law
Name
Julie
From
michigan
Time
11/22/2002 7:25:46 AM
Comments:
matthew is very cute .I like the way u keep people updated on matthew
Name
Rebecca M Daniels
From
Pennsylvania
Time
11/15/2002 7:25:37 AM
Comments:
Grace told me to have a box of kleenexes with me. I did need It.Will say a prayer every night. Hugs and kisses to Matthew. God bless
Name
Shany
From
IL
Time
11/14/2002 9:48:58 PM
Comments:
I really enjoyed the website. It almost brought tears to my eyes. Great work, my love to Matthew. He is so cute!! Mum to Alex, 3.5 years old, microcephaly
Name
Liza Kronk
From
Melbourne Australia
Time
11/11/2002 5:41:54 PM
Comments:
Hi from Liza, Michael and Sean down under. Sean has microcephlia and other related problems, but he is my little gem. Hope you are all well and take each day as it comes.
Name
Michelle Lerch
From
Illinois
Time
11/11/2002 1:23:56 PM
Comments:
Great page. I am going to steal the words to "Tears in Heaven" from you. I have been looking for them for awhile. Hope that is ok. Keep up the good work with the page. you sure are a dedicated granny. Love, Michelle, mom to Alyson age 7 grade 3a ILS
Name
Joanne Silk
From
London, UK
Time
10/30/2002 2:56:22 PM
Comments:
Great Site - Love to Matthew. My daughter is now 5 yrs old and was dx with I.S. and optice nerve hypoplasia at 4 months old. I was told at the time that Emilie would have 80 % vision in her left eye and 20 % vision in her right eye, but as time has gone on shes amazed everyone and has very functional vision and no-one would know of her sight problems except for a little squint when shes tired. I know Matthews situation is different but never give up hope - Kids are very very resiliant and continually amaze you. Love to you all in the work that you do Joanne and Emilie
Name
Brenda Meyer
From
Kansas
Time
10/30/2002 9:24:14 AM
Comments:
I am forever keeping Baby Matthew in my prayers. I am Gage's Nana from the IS support group This web site is beautiful. And I can see that He placed Mathew "with a certain family and in His great plan you see they're here quite purposely to show us how it's done"
Name
margarita o'dell
From
Texas
Time
10/29/2002 11:15:45 PM
Comments:
your an inspiration for us all. wish you good luck. i will keep matthew in our prayers. prayers for my tucker are also appretiated. love tucker's mom
Name
Becky Orton
From
NH
Time
10/29/2002 10:19:10 PM
Comments:
I loved the sight and your grandson is beautiful. I am 29 and my fourth child was born with severe microcephaly (brain is size of 25 week old fetus), seizure disorder, secondary lissencephaly, hypothroidism and some other issues. He is the joy of our life and we love him SOOO much! My Benjamin is two months younger than Matthew. I would love to recommed a book called "Angel with the Golden Halo". It's a children's book and it is wonderful. You should check out the sight because it's actually based on a true story retold by the nurse that cared for him during the last six months of his life. angelwiththgoldenhalo.com May you continue to treasure and love little Matthew - he's lucky to have you. Sincerely, Becky Orton
Name
Crystal Pigg
From
Alabama
Time
10/29/2002 8:24:23 PM
Comments:
Matthew is a really beautiful baby boy.. I know you feel really blessed to have him... I feel blessed to have my micro angel Danielle... I'll keep u in my prayers... Kris
Name
Aunt Grace
From
Pa
Time
10/17/2002 8:40:25 PM
Comments:
I voted for Baby Matt's picture today! This website is getting better and better each time I visit! See u guys Thanksgiving!
Name
Brenda Meyer
From
KS.
Time
10/9/2002 2:41:34 PM
Comments:
I found it and U are sooo right he his a special angel just like Gage I see that music moves U too did U like the sample songs on the site? I also have a song special angels that I have written that I would like for U to have please let me know how i could send U a copy as a gift from me to mathew and u all
Name
HollyKurschner
From
Wisconsin
Time
10/8/2002 9:35:30 AM
Comments:
He looks to me like a perfect little angel..Cherish every day with him..I know I do with my son..Thank-you for letting me view and read Matthew web page..
Name
Brenda Wells
From
Mississippi
Time
10/8/2002 8:42:47 AM
Comments:
Reading about you makes each of us a better person. Makes us Thank God even more for having healthy babies. You are a very special person . You have and will touch a lot of lives. Thank you for allowing us the gift of getting to know you in this special way.
Name
Tracy Taylor
From
Manitoba
Time
10/6/2002 6:42:54 PM
Comments:
Loved your site! Never thought being too chunky could be a problem! Tracy Taylor and Andrew Malo from Winnipeg, MB. (bilateral open-lipped Schiz, SOD, seizures and asthma)
Name
Tina Lincoln
From
new zealand
Time
10/4/2002 11:45:12 PM
Comments:
Matthew Aaron is a cutey. Such a lovely biblical name. God bless. Mum to Nikki, 4 years old. lissencephaly
Name
Rebecca Sirigiano
From
New York
Time
10/2/2002 7:42:55 PM
Comments:
I just wanted to say that your site for Matthew is beautiful. It brought tears to my eyes. Our little boy Michael who was born June 26,2001 weighing 6lbs 8oz blue eyes and blonde hair as well. Was diagnosed in January of 2002 at the age of 6 months as having Pachygyria.
Name
Mary Ann Gee
From
pa
Time
9/21/2002 4:40:00 PM
Comments:
WOW WHAT A WEB SITE.WE WILL KEEP YOU IN OUR PRAYERS.
Name
Great Grandma Ruth
From
Ms
Time
9/18/2002 3:40:10 PM
Comments:
My Sweet Pea" is so sweet. He is at pt right now. Love you baby
Name
elizabeth ashley
From
mississippi
Time
9/17/2002 8:37:31 AM
Comments:
GOD IS ALWAYS UP TO SOMETHING AND IT IS ALWAYS GOOD!
Name
Sandy Duckworth
From
MS
Time
9/17/2002 7:28:09 AM
Comments:
I am so proud of you (Ganny) I miss you each day but I know that you are where you need to be. GOd bless you and we are keeping ALL of you in our prayers
Name
Aunt Grace
From
Pennsylvania
Time
8/28/2002 5:42:44 PM
Comments:
We need more updates!!!!! I miss u guys sooooo much! Give Little Mattboo (as Jessie calls him) kisses for me and Jessie!
Name
Nichristin Fischer
From
IN
Time
8/27/2002 11:08:18 PM
Comments:
Matthew is beautiful. I also have a special baby and I cherish each and every day. There are good days and bad, easy days and hard, but I know I was given my little angel because I could handle it. Remember to always trust your gut when it comes to Matthew's health. No Doctor is GOD!!! (It's actually amazing what they don't know.) Again, what a handsome little guy.
Name
James,LaDonna,and Christie
From
MS
Time
8/25/2002 9:23:04 PM
Comments:
You are in our prayers. We hope he does well.
Name
Lorene Boatman
From
Ms
Time
8/25/2002 8:44:12 PM
Comments:
You are trully blessed with a special gift from God. I will always keep your family in my prayers. Mammaw
Name
Brent Boatman
From
Ms
Time
8/25/2002 8:41:56 PM
Comments:
You are trully blessed with a special gift from God. I will always keep your family in my prayers. Your cousin, Brent
Name
Brent Boatman
From
Ms
Time
8/25/2002 8:41:32 PM
Comments:
You are trully blessed with a special gift from God. I will always keep your family in my prayers. Your cousin, Brent
Name
Traci Gavin
From
Mississippi
Time
8/22/2002 10:17:48 PM
Comments:
This is the most beautiful and creative web page I have ever seen. Thank you so much for sharing it with me. Thank you for helping me see the blessing in my own life, Traci from Good Samaritan ...Haven't known you long Matt but I love ya lots.
Name
Great Paw Paw Charles
From
MS
Time
8/13/2002 7:52:11 PM
Comments:
Proud Paw Paw. Looks Just like me. Especially his belly.
Name
Angeilc Chavez
From
colorado
Time
8/8/2002 10:46:19 AM
Comments:
Hi Matthew, my son Stephen 9yrs and I are new to the loop and wanted to say hi.I think you are a very cute baby boy, and I love your site
Name
Stacy Kelemen
From
Michigan
Time
8/7/2002 7:57:39 PM
Comments:
Stacy Kelemen, mom to Cole,3yrs.old,MDS.p.s. Cole loved the music.
Name
alison boxall
From
tired & emotional!!!
Time
8/6/2002 10:50:50 AM
Comments:
Hi Matthew and Ganny, We had a minute to have a look at your photos and we think you're beautiful. See you on the loop!!! Alison & Cameron UK
Name
Brandy Corley
From
La
Time
8/2/2002 8:52:17 AM
Comments:
He is a buetiful little boy.
Name
Tammy Davenport
From
MS
Time
8/1/2002 8:39:18 AM
Comments:
Matthew is a very special baby boy. He is one of our Good Samaritan family members! We love you Matthew!
Name
Korey Pugh
From
MS
Time
7/27/2002 8:20:27 PM
Comments:
My little nephew!
Name
Tina Rowland
From
MS
Time
7/24/2002 5:12:57 AM
Comments:
Hey Matt, love your web page, "aunt" Tina
Name
Dawn Kitelinger
From
Tennessee
Time
7/19/2002 9:19:06 PM
Comments:
He is soooooo adorable and he has the most beautiful blue eyes. It is nice to get to see a face that you have prayed for. I will continue to pray for Matthew. The poem was beautiful.
Name
Rose
From
Pa.
Time
7/19/2002 1:29:20 PM
Comments:
Hello Grace sent me the web site the other day God bless you all and keep up the site I will be back to see how you all are doing I will send this address to some of my E-mail friends
Name
Priscilla
From
Texas
Time
7/19/2002 3:32:06 AM
Comments:
I linked to this site from the yahoo microcephaly group I am new to it and left a post, anyway. This is a BEAUTIFUL site!! Matthew is blessed to have you in his life. I really, really enjoyed reading all about him. Thank you so much for sharing your little angel with me. He is beautiful in everyway!!
Name
Theresa Martin
From
Louisiana
Time
7/17/2002 3:46:39 PM
Comments:
My prayers are with you.
Name
Jewl
From
IL
Time
7/17/2002 3:46:14 PM
Comments:
Hello, I think you are the most handsome baby I have seen since my son was born 17 years ago. May paryers are with you. Jewl http://home.earthlink.net/~darkmagewall/
Name
Brenda Meyer
From
Kansas
Time
7/17/2002 10:28:11 AM
Comments:
I am Gage's Nana and Rochelle Ramsey Gage's mom is my daughter like you we have a special Angel with us here and I also write words and music about him I love your poetry and the love expressed for your beautiful little angel We are truly blessed to have them in our lives
Name
Brenda Meyer
From
Kansas
Time
7/17/2002 10:23:58 AM
Comments:
I am Gage's Nana and Rochelle Ramsey my daughter Gage's mom is my daughter like you we have a special Angel with us here and I also write words and music about him I love your poetry and the love expressed for your beautiful little angel We are truly blessed to have them in our lives
Name
Rochelle and Gage Ramsey
From
Nebraska
Time
7/16/2002 10:09:42 PM
Comments:
I felt like I was right there with you all of your days. Please know you are not alone. I pray for the same things as well. Irronically Gage was tested for Miller Deiker as well, but it was negative. WE don't know what is taking our sone from us. Million blessing to you. You are such a loving family, God only picks the best!!!!
Name
NANCY GORDON
From
pa
Time
7/16/2002 2:20:33 PM
Comments:
I will keep Matthew in my prayers.
Name
Cindy
From
Michigan
Time
7/16/2002 10:03:52 AM
Comments:
Beautiful baby. Enjoyed the site very much. Matthew is a lucky boy to be so loved by all. God Bless You All. I will remember you in my prayers.
Name
Vicki Baker
From
New South Wales, Australia
Time
7/16/2002 3:05:17 AM
Comments:
I have a lovely 8 year old son with bilateral schizencephaly and what a handful he is. He also has sight problems and other things but is going well. He is on the intergration program at school and is in year 2. We were told lots of things all very bad but Ethan has been a real trooper and is going ok a few seizures but not medicated. Enjoy him and you will reap the rewards. Ethan has 3 sisters and 1 brother lots of big and little people to learn from. Kind Regards Vicki
Name
Rubaiyat
From
TX
Time
7/15/2002 2:32:25 PM
Comments:
Thank you for showing us what a beautiful and blessed baby Matthew is. He will remain in our prayers! Rubaiyat
Name
Anthony Papadopoulos
From
England
Time
7/15/2002 12:47:15 PM
Comments:
Hi Matthew, My name is Anthony. I am 20 years old this year. I also have problems like you, but I am a happy boy. I learned to swim, ride a bike and walk since the age of six. I cannot walk for long distances and often I need someone to hold my hand. I eat by myself. I have worked very hard to be able to do all these things. I love swimming, riding my bike and especially love going out in the car and I also love multi-sensory lights soooooooo much!! Please think of me as your friend. Kisses to you from Anthony. I too was a little fat baby!! But I am a slim teenager now!! I have Botulinum injections every six months to help my spasticity which has got worse as I've grown older. I need stretching exercises everyday and exercise and hot baths like you too help. Love Anthony xxxx
Name
Melody
From
Minnesota
Time
7/12/2002 10:16:26 PM
Comments:
I love your page. That is a beautiful angel you have! Be proud. There is no such thing as "normal" in this world we are all special in our own ways!
Name
Beth and Cameron
From
New York
Time
7/12/2002 7:33:17 PM
Comments:
Cameron was born w/ Schizencephaly. He is now 2 yrs old and has also been diagnosed w/ Infantile Spasms (seizure dsorder), and Septo-Optic Dysplasia (vision impairment).
Name
Kim Hutchings
From
Shreveport, LA
Time
7/11/2002 3:08:44 PM
Comments:
Matthew is indeed God's special treasure. Not only have you been a blessing to Matthew but he has also been a blessing to you! May God's blessings continue to strengthen Matthew and his family. God's greatest gift is our children!
Name
Nancy Wilkerson
From
MS
Time
7/10/2002 11:06:25 AM
Comments:
Matthew is a very special child. God bless him and his love ones.
Name
Nancy Wilkerson
From
MS
Time
7/10/2002 11:06:21 AM
Comments:
Matthew is a very special child. God bless him and his love ones.
Name
Brook Regeski
From
Indiana
Time
7/8/2002 10:57:22 PM
Comments:
Matthew, You' are an adorable baby! I know you will triumph over this because we can do all things through Jesus. I'll be praying for you little man! Never give up the fight!! Brook
Name
Lisa Thielman
From
MN
Time
7/8/2002 8:18:30 PM
Comments:
Thank you for sharing your wonderful little boy with us. I enjoy checking in when you notify the "loop" of your updates. Matthew is very lucky to have all of the support. Keep up the great work Matthew. You are in my thoughts and prayers. Lisa, Mom to Angel Daniel
Name
Jacqui Castillo
From
California
Time
7/6/2002 4:58:53 AM
Comments:
GOD BLESS YOU MATT. YOUR GANNY SURE DOES ADORE YOU! YOU ARE BOTH SO LUCKY TO HAVE EACH OTHER EVEN IF... AT LEAST YOU HAVE TODAY. I ENJOYED YOUR HISTORY AND HOPE TO BE ON YOUR E-MAIL LIST. MY BEST FRIEND'S SON HAS RING-14...
Name
Jen and Izaiah Carpenter
From
NC
Time
7/5/2002 8:47:34 PM
Comments:
Looks like you are doing great lil' Matt-keep up the good work! You are a special little miracle and you are truly blessed to have a loving family. From one PMG kid to the other-love you and GOD bless you always.
Name
Tammy
From
CA
Time
7/5/2002 5:48:20 PM
Comments:
He is a beautiful angel
Name
Ronda Lovett
From
Mississippi
Time
7/4/2002 11:01:18 AM
Comments:
Charlotte this was great iwas so good.. Good job
Name
Sue Kleinman
From
Ms.
Time
7/4/2002 10:49:13 AM
Comments:
you are such a beautiful angel. see ya at church!
Name
Stacy Ellingen
From
Wisconsin
Time
7/4/2002 9:03:31 AM
Comments:
I'm 17. I have Athetoid Cerebral Palsy
Name
Dot
From
Arkansas
Time
7/2/2002 4:50:47 PM
Comments:
Thanks for the regular updates on Matthew. I am glad he is enjoying the therapy classes. Just a bundle of joy and love from God with no limitations. Love you Dot
Name
Connie Roy
From
MN
Time
7/2/2002 2:18:53 PM
Comments:
Beautiful Boy!
Name
Chris Wickman
From
NJ
Time
7/2/2002 7:22:26 AM
Comments:
Hi, Charlotte !!! Matthew is a doll baby !!! I looked at your photos. The great-grandparents look to be MY parents age !!! I be you & I are around the same age ( heck, you might even be YOUNGER then me )!!! I'm 43... All I can say is WOW, I could be a Ganny <> ... Anyway, this is a lovely site. Thanks so much for sharing Matthew with us... Love & Light... Chris - mommy of Crystal Aquielle - 4 years old - Bilateral Perisylvian PMG - Grade 3...
Name
Lorri and Veronica
From
OHIO
Time
6/30/2002 12:18:47 AM
Comments:
Loved your site we are from the c.p group just wanted to say hi and welcome. My daughter Veronica has seizures and C.P. Matthew is a beautiful little angel. Congrats. By the way I loved your poam I was crying my head off. Your a special grandma its great. Take care hope to chat more at the group.
Name
Lorri and Veronica
From
OHIO
Time
6/30/2002 12:13:19 AM
Comments:
Loved your site we are from the c.p group just wanted to say hi and welcome. My daughter Veronica has seizures and C.P. Matthew is a beautiful little angel. Congrats. Take care hope to chat more at the group.
Name
SANDRA K. FRANTZ
From
OH
Time
6/29/2002 8:23:40 PM
Comments:
I TOO HAVE A CP ANGEL. HE IS NOW 4 YEARS OLD. HE CAN'T SIT ALONE, WALK, TALK OR EAT VERY WELL, BUT I LOVE HIM TO PIECES. HIS SMILE CAN MELT YOUR HEART. WE DO PT/OT/AND SPEACH EVERY WEEK PLUS WHAT WE DO AT HOME. IT TAKES A SPECIAL FAMILY TO CARE FOR OUR LITTLE ANGELS. GOD BLESS YOU AND YOUR FAMILY. GRANDMA KAY
Name
Rachel Steen
From
WI
Time
6/29/2002 9:46:23 AM
Comments:
Hi, Matthew is beautiful!! What a great webpage...you did a supers job. Rachel
Name
Sue, Dee, and Clarke
From
Louisiana
Time
6/29/2002 5:32:07 AM
Comments:
Hi Precious !! We love your website and all the love that shines through it. Love, your neighbors in Louisiana, Sue, Dee, and Clarke
Name
lois
From
WA
Time
6/28/2002 11:16:29 PM
Comments:
Sweet, sweet baby.
Name
Ruth,Baby Matt's great Grand-ma
From
Ms
Time
6/28/2002 2:07:31 PM
Comments:
Ilove you baby!!!!!
Name
SHANNON JAMES
From
JACKSON, MS
Time
6/28/2002 12:45:12 PM
Comments:
HE IS SOOOO CUTE! HOPE HE'S DOING WELL TODAY. WILL KEEP YOU IN OUR PRAYERS.
Name
Robin Sayers
From
Missouri
Time
6/28/2002 12:13:30 PM
Comments:
Matthew is such a sweetie! Thanks for sharing him! I have two children with CP so I know what sweet angels they are and how blessed we are that God shared them with us. God Bless you all!
Name
Sandy Duckworth
From
Mississippi
Time
6/28/2002 11:15:13 AM
Comments:
Love and Kisses to you! You are one sweet precious angel. Ganny loves you with all her heart. I know she tells me all the time.
Name
Bob Schmid
From
Ohio
Time
6/28/2002 10:51:40 AM
Comments:
Friend of Darrell and Dale Childers
Name
Betty M. Thornley
From
Mississippi
Time
6/28/2002 9:22:13 AM
Comments:
Way to go. Hang in there, little one. Remember if Jesus is for you, no one can be "agin" you.Love to all.
Name
Alice Childers
From
Texas
Time
6/26/2002 9:05:20 PM
Comments:
I am praying for your family! Nancy has kept us informed about Lil' Mat. Your poem is expresion of a grandmother! God Bless you all in this hard time.
Name
Alice Childers
From
Texas
Time
6/26/2002 8:59:53 PM
Comments:
I am praying for your family! Nancy has kept me up on Mat.
Name
Great-Aunt Nancy
From
Texas
Time
6/26/2002 10:50:21 AM
Comments:
I can not tell you how hard it is to be here in Texas, wanting SO BADLY to hold you, Lil' Matt! Aunt Nancy, Uncle Darrell, and all of their friends and family, are prayng for you and your family. God has placed you in our lives for a specific reason and the blessings of that are already apparent! Don't give Granny Charlotte ALL of your kisses! Save a few for me! Great-Aunt-Nancy-from-Texas
Name
Deb Chenoweth and Miss Rebecca(schiz-kid, 12)
From
Ohio
Time
6/26/2002 9:09:57 AM
Comments:
Your poem is so lovely! Now my eyes are Leaking. Love and Kisses to sweet Matthew.
Name
papaw John Kappler
From
MS
Time
6/25/2002 7:40:47 PM
Comments:
God sent us a perfect little man to bring our family closer together
Name
Dulce Pina
From
massachussetts
Time
6/25/2002 7:00:15 PM
Comments:
God bless your little angel ;-)
Name
Kyle K. Smith
From
TN
Time
6/25/2002 2:46:11 PM
Comments:
Just popped by to check out Matthew's pics, what a cutie. No wonder grandmother is so proud! to you all! Kyle, Toni & Cody Colton Smith
Name
ANGIE BETTEVY
From
LA
Time
6/25/2002 1:01:14 PM
Comments:
I AM A GREATAUNT TO AVERY WHO HAAS SCHIZENCHEPHALY.I JUST FOUND THE SCHIZBUDDY SITE,AND OF COURSE SENT INFO TO JUDI ABOUT HIM.I FIRMLY BEELIEVE THAT GOD SENDS BABIES AS THESE TO SPECIAL PEOPLE,AND (EVEN IF I AM A RETIRED NURSE)DOCTORS DON'T KNOW EVERYTHING.GOD HAS SPECIAL WORK FOR THESE ANGELS,AND THAT IS WHY HE SENDS THEM.I LOST 4 GRANDCHILDREN BEFORE THEY WERE BORN,AND ALTHO I HAVE 11 NOW AND THANK GOD EVERYDAY FOR THEM,I STILL MISS THEM.THIS SPECIAL BOY IS SO MUCH CLOSER TO ME THAN MOST OF MY OWN!!!!I KNOW AVERY WILL BE A GREAT PERSON,AS HE SHOWS MUCH CAREING FOR ALL OF HIS FAMILY.IN ADDITION,HE LIKES TO HELP HIS"GEELEE" CROSS THE ROAD TO OUR HOME AND TELLS ME TO BE CAREFUL!!THIS FROM A 4 YR OLD!!REGAARDLESS,I TRY TO KEEP ALL OUR SPECIAL ANGELS,AND THEIR GUARDIANS IN MY PRAYERS EACH DAY!!GOD BE WITH YOU'L,AND MATTHEW.LOLANG
Name
kim murphy
From
mississippi
Time
6/25/2002 11:00:19 AM
Comments:
they are all lil angels
Name
Connor Bode
From
Georgia
Time
6/25/2002 8:50:13 AM
Comments:
Your Schiz Buddie Always!
Name
Annika &Kayleigh
From
Netherlands
Time
6/25/2002 3:43:52 AM
Comments:
Matthew, your grandmother obviously loves you a lot, and of course she should. What's not to love about such a sweet boy ! My daugther Kayleigh (10 months old now) has pachygyria and we also love her very much. You are special children and deserve all the love and care you can get !! By the way... beautifull poem !!
Name
Mary and Matt
From
MS
Time
6/24/2002 8:05:38 PM
Comments:
proud parents of Matthew!
Name
Margo Uzzle Harger
From
Texas
Time
6/24/2002 4:09:23 PM
Comments:
Oh what a joy to have a new little in your life to love--May the Lord be with your family Little Matthew as you go through life--you are a very special little man and we all love you!!! You will be in my prayers--all the way from Ft Worth TX. :O)
Name
Rev. Barry Mohney
From
PA
Time
6/24/2002 3:07:45 PM
Comments:
Hi Matthew: Our church here in California, PA is praying for you. Aunt Grace & uncle John Shonts attend here. We wish you God's best in the future. Pastor Mohney
Name
Diane Yarbro
From
MS
Time
6/24/2002 12:59:01 AM
Comments:
Baby Matt,you are soooo cute. The web site is great. Thanks for sharing with us all about you and how you are doing. I'm going to continue to pray for you. Tell your Ganny Charlotte the peom was really good!
Name
Helen (Mum to Jonathan ,ILS)
From
Northern Ireland
Time
6/23/2002 2:58:34 PM
Comments:
Hello Matthew you're a real cutie-pie.I really loved you're photos. You have a very Special Grandma who loves you very much. Keep well Little Man. God Bless!!
Name
jackie arnold
From
mississippi
Time
6/22/2002 10:32:24 PM
Comments:
what a precious baby!! what a wonderful web site!! charlotte, the poem was touching. love to you all. keep doing so well.
Name
Kimberly (Tori's mom)
From
New Jersey
Time
6/21/2002 5:11:15 PM
Comments:
Mathew is a sweetheart !! And the poem his grandmom wrote brought me to tears ;) It's beautiful.
Name
Dot Weaver
From
Arkansas
Time
6/21/2002 1:11:33 PM
Comments:
Beautiful Poem - with Love
Name
Maria Augusta
From
Maryland
Time
6/21/2002 11:01:54 AM
Comments:
My son has XLAG and I know how wonderfull and hard too to take care special kids like ours. I'm from Brazil and It's hard for me to talk to the doctors and everything. You can send e-mail any time and I will pray for Matthew. He is so handson! God Bless You and your family.
Name
Anna-Deyla Perez
From
Texas
Time
6/21/2002 9:08:12 AM
Comments:
Hi Matthew, it is wonderful meeting you. Your web page is very nice also. I have a 3yr old daughter who has microcephaly among other things. She is the youngest of 5 children and is loved immensely. Thankyou for sharing your story with us.
Name
Rachel Trindle
From
WA
Time
6/20/2002 7:58:24 PM
Comments:
God bless Matthew
Name
joanne Whittle
From
ont, canada
Time
6/20/2002 7:21:56 PM
Comments:
i just want to say that Matthew is so cute, all the best to him in the future.... take care all
Name
Tina
From
MS
Time
6/20/2002 9:59:24 AM
Comments:
Pictures of Matthew are great. May God continue to shower both Matthew and his family with blessings. Love ya, Tina
Name
Kris Pigg
From
Alabama
Time
6/19/2002 8:11:18 PM
Comments:
You have a beautiful grandson. I have a little girl who has microcephaly (severe). Although she loves to laugh and play. She's my little angel. I too am a young mom only 21 years old and she will be 3 in October. I would love for you to e-mail me with information on how to create a website because I would love to make my little girl one so everyone can see how special she is. Thank you, Kris
Name
Rhonda Ford
From
ga
Time
6/18/2002 7:29:06 PM
Comments:
I think all kids are wonderfull. I think matthew is really cute.
Name
Steve; y ddraig Gymraig
From
Cymru Goggeldd (North Wales)
Time
6/18/2002 6:20:25 PM
Comments:
So, if I work back 4 months you were really born on 18/2/2002 (or 2/18/2002 in that funny way your Ganny does dates) Don't seem to say that anywhere else on the site! Happy thirdth birthday. tell your ganny she is a real wraith draig. And love to you's all
Name
Connie Williams
From
Mississippi
Time
6/18/2002 5:39:34 PM
Comments:
Matthew is a handsome little man. A gift from God. You are very blessed! ~Connie
Name
Great-granny Ruth
From
Ms
Time
6/18/2002 4:55:10 PM
Comments:
Hey yall this is my only great-grandchild! Me and great-grandpaw love him lots. I am praying for all the group. GGRUTH
Name
WES ROBERTSON
From
MS
Time
6/18/2002 3:43:21 PM
Comments:
Matthew is a cute little rascal. Charles looks like he has his hands full......
Name
Pam and Jake Lischewski
From
Illinois
Time
6/17/2002 4:09:36 PM
Comments:
My son Jake has microcephaly and are in the microcephaly support group....Matthew is a beautiful little boy with a beautiful family who loves him. My Jake is almost 8 and is doing wonderful....you will be suprised at how well Matthew does and overwhelmed at the amount of love you have for him. Just keep praying.....
Name
Vicki Scotney
From
Arkansas
Time
6/17/2002 4:06:09 PM
Comments:
Matthew is so cute! Thanks for writing me through the schiz group!
Name
Tammy
From
Illinois
Time
6/17/2002 3:48:32 PM
Comments:
Matthew is a beautiful baby! My Tate also has schizencephally on the left side(closed lipped unilateral schizencephally to be exact) He was and still is a large boy. He was a 11 lbs. when he was born and he now weighs about 42 lbs. (he is 2 1/2), he is very tall also. Matthew is so lucky to have such a wonderful network of loving people. God Bless Tammy
Name
Becky
From
Missouri
Time
6/17/2002 1:17:09 PM
Comments:
I especially liked How God chooses mothers. Thanks for sharing
Name
Lisa
From
Texas
Time
6/17/2002 8:00:36 AM
Comments:
What a cute guy you are, Matthew! We're thinking about you. Lisa and baby Robert (1 year old with PMG) in Houston.
Name
cris gentry
From
ms.
Time
6/17/2002 6:53:11 AM
Comments:
I love baby Matt and feel like he is everyones child , to pray for him as if he were my own. I count it as a gift of great joy and privalidge every time I get to hold him! I praise God for him!
Name
Joanne Singletary
From
Georgia
Time
6/17/2002 6:16:26 AM
Comments:
Baby Matt is a beautiful lil' boy. And it's great to hear how he's doing.
Name
MARYANN AND JONAS GEE
From
PA.
Time
6/16/2002 3:59:15 PM
Comments:
I GUESS ALL GRANNYS GET WEEPY WHEN WE SEE NEWBORN BABBIES SO GLAD HE'S DOING SO GOOD PRAYER WORKS
Name
mary
From
NC
Time
6/15/2002 7:59:37 PM
Comments:
He sure is a cutie!
Name
Mawulom Kumordjie
From
kmawulom.sympatico.ca (still under construction)
Time
6/15/2002 5:42:11 PM
Comments:
I luv u and I say GOD has already made u a miracle in your family. u are going to be a very great person to shock this whole universe. GOD BE WITH U always
Name
Tina Lincoln
From
New Zealand
Time
6/15/2002 3:43:56 AM
Comments:
Thankyou for sharing little Matthew with us all. He is a honey.I am mum to Nikki who woll be 4 next month. You sound like you are full on christain. We are too. God is still in the business of healing. His way's are not our way's. God bless. You sound like an awesome woman od God. God Bless. From Tina
Name
Michelle Lerch
From
Illinois
Time
6/15/2002 1:39:29 AM
Comments:
Great webpage baby Matt. So ironic that I just posted that same story about the angels on the loop. That story is really getting around, or I am just late in my sharing of it. lol. Best to you and your family and I know that you will make them proud in all you accomplishments. Michelle Lerch. mom to Alyson Paige Lerch born 2-17-95 Has grade 3a ILS.
Name
Trisha and Alison
From
OH
Time
6/14/2002 11:17:22 PM
Comments:
Matthew, what a cutie you are aaand I see you are such a blessing for your family! Hugs and kisses Trisha and Alison
Name
Tammy Blackwell
From
delaware
Time
6/14/2002 8:40:47 PM
Comments:
Matthew is just so cute!!!!!I am mom to Rhianna Eve, she has Lissencephaly & Pierre Robin Sequence. Rhianna was born Aug,27,1999. Matthew keep up the good work. Love, Tammy&Rhianna
Name
Kay Ann Griebel
From
Iowa
Time
6/14/2002 7:02:30 PM
Comments:
Hi Charlotte ~ What a handsome little boy! :) Thank you for sharing him. I lost my two little boys, Alex and Isaac, to Walker Warburg Syndrome. Our precious Alex passed away on 01-31-98. He was almost 17 months old. And our precious little Isaac earned his wings on 12-06-00. He was 4 days away from his 2nd birthday. It is truly wonderful what you have done for Matthew! You are a beautiful, special Grandma! Love, Tim, Kay Ann, Alex, and Isaac Griebel
Name
Melinda Patton
From
Mississippi
Time
6/14/2002 6:04:37 PM
Comments:
Proud Great Aunt!
Name
Eva Daffron
From
Kansas
Time
6/14/2002 5:20:48 PM
Comments:
I'm am so glad you are growing and you are adorable. May God bless you and your family richly. Love in Christ, Eva
Name
Neuquen
From
Spain
Time
6/14/2002 5:15:46 PM
Comments:
Hi Matthew! INice to meet you. I'm 2 y.o and I have some of the same things you have. Let's keep life interesting! Best wishes, Neuquen.
Name
Kathy Smithey
From
Mississippi
Time
6/14/2002 2:28:50 PM
Comments:
Great website!! Pictures of Matt are beautiful!
Name
Erin Collopy
From
Texas
Time
6/14/2002 12:50:41 PM
Comments:
Oops! Lydia's website is www2.tltc.ttu.edu/qualin/Lydia.
Name
Erin Collopy
From
Texas
Time
6/14/2002 12:44:38 PM
Comments:
Matt is gorgeous! He reminds me of my beautiful Lydia, who is also microcephalic and absolutely perfect. Visit her at www2.ttacs.ttu.edu/qualin/Lydia. I hope Matthew and Lydia get to meet each other sometime.
Name
Deb, Mark & Raegan Storck
From
Maine
Time
6/14/2002 12:00:08 PM
Comments:
Beautiful family! We send our love & prayers to you all. Our daughter, Raegan, age 2 1/2, has Microlissencephaly. We hope to meet you in person one day. Love and strength! -Deb, Mark & Raegan
Name
Helen Miko
From
Connecticut
Time
6/14/2002 11:43:09 AM
Comments:
Matthew is absolutely beautiful. I couldn't get over how much he looks like my Brandon did at that age. In the picture when you said he's smiling at the angels -- well, maybe he's smiling at my angel Brandon. Love, Helen
Name
Aunt Grace
From
Pennsylvania
Time
6/14/2002 11:28:12 AM
Comments:
He is so beautiful! I miss him sooo much! Give him lots of kisses and hugs for Aunt Grace and Jessica!
Name
Matthew's Ganny Charlotte
From
Mississippi
Time
6/14/2002 11:07:18 AM
Comments:
I had to put my two cents in. I love Matthew very much. Yes, we know he is a handsome little fella. love Ganny
Name
Mary Munoz
From
Maryland
Time
6/14/2002 10:53:52 AM
Comments:
Matthew, you are so handsome and sweet! What a great Web site. Love, Mary and Thomas (from the Loop)
Name
Jori Hazen
From
Texas
Time
6/14/2002 9:08:28 AM
Comments:
Hi! What a cute website! Matthew is a handsome young man. Thanks for all your support on the loop. Love, Jori and Isaac
Name
JEAN BROWN
From
JUNE 14, 2002
Time
6/14/2002 8:57:41 AM
Comments:
YOUR SMILE IS BRIGHT AND FULL AS THE SHINING SUN AND I KNOW YOU ARE A PRECIOUS SON.
Name
Gina Bulinda
From

Matthew

MI
Time
6/14/2002 8:53:46 AM
Comments:
Matthew is such a beautiful baby. Best wishes for love & health.
Name
Dot Weaver
From
Arkansas
Time
6/14/2002 8:24:03 AM
Comments:
Love is the greatest gift you can give or receive... Love to all your family Friend, Dot

Welcome To Matthew's Crib (A Star is Born)Matthew Aaron

Our Lil Cowboy
"To the world I might be one little person, But to Ganny I am the world." "For I know the plans I have for you," says the LORD. "They are plans for good and not for disaster, to give you a future and a hope. In those days when you pray, I will listen. If you look for me in earnest, you will find me when you seek me. I will be found by you," says the LORD. Jeremiah 29:11-14

A Poem From Matthew (Author Unknown)"I Am So Very Special"I am so very specialI have been from the start.Before they held me in their armsMy family held me in their hearts.And like a single drop of rainThat on still waters fall,My life and love will ripples makeAnd touch the lives of all.So read this precious storyAs step by step I grow.I am a special blessing and giftAs each page here will show
GANNY'S JOURNAL
I was born at River Region Hospital in Vicksburg MS Feb. 18, 2002 I weighed 6 lbs 8 oz. I have blonde hair and handsome blue eyes. At my doctors appt. yesterday 06-13-02 I weighed 16 lbs 8 oz. I don't think her scales are right. She said I needed to slow down!!Mommy says big babies run in the family so the Dr. Is not too worried right now. I guess this means no more Ice Cream from Sonic!
WELCOME TO MY CRIB!My name is Matthew but everyone calls me "Baby Matt". I am a "Special" little boy. The day after I was born the doctor said. "Hey, your head is just a little too small". Me and mommy didn't think my head was too small. She said it looked perfect to her. Well, they did this thing called an MRI.. it was pretty scarey.The Mri told them I had Miller Dieker Syndrome. I didn't know what that was but I felt just fine.Miller Dieker is a combination of brain development problems. (PLEASE SEE JUNE 24,2002 ENTRY FOR UPDATED DIAGNOSIS FROM DR. DOBYNS.,) Some of the big words they told mommy was; Lissencephaly, Schizencephaly, Polymicrogyria. You will have to look those up on the web if you want to know what it all means. They also said I had Optic Nerve Hypoplasia. That means Im not suppose to be able to see much, but I bet they are wrong about that. I sure like my Disco Ball Ganny Charlotte bought me. I especially like the red lights on it!I had a doctors appointment today because Mommy said I had a snotty nose. Dr. Fairchild said it was just the beginning of an ear infections.If you ever want to see how I am doing, you can visit here at least once a month and please sign my Ganny's guest book cause she's gonna keep emailing this to you until you sign it.Love Matthew and Keep praying cause' I am doing just fine!P.S. Some of the pics ganny put on this site make me look fat. And don't worry, I have had my hormones checked. I am not fat.. just fluffy and healthy.
Update: 6-14-02 Physical therapy went well. The therapist said that I was progressing but slower than I should. I am almost 4 months and she said I was at about a 2 1/2 month level. Everyone is just happy and thankful that I am progressing at all. It's all because yall are praying for me. I Love you!
6-15-02 I finally slept all night at Ganny's! She was sooo happy. I got up at 5:00. She took me to some garage sales and bought me lots of stuff!
6-16-02 Happy daddy's day. I went to Eagle lake with my daddy and mommy. I have my own sunglasses and life jacket. I looked very KEWL! I was mad cause it rained all day. But I got to spend a lot of "close" time in the camper with mommy and daddy.
6-17-02 Im ok. Just chillin.
6-18-02 I AM 4 MONTHS OLD TODAY! I have not had any siezures and I am feeling just great. I have to go to the Endochrinologist. I don't even know what that is and I don't think mommy does either! I hope I don't get stuck or nothin'. I'll let you know what they say. Love me.
6-18-02 The endochrinologist said that I was doing good considering what I got. He said I was a little short for my age but he wasn't going to put me on any growth hormones right now. He said all my other stuff was working pretty good. Once again, we have to just "wait and see". Im glad he didn't put me on a diet. Oh, He said I have to have water everyday. He asked if mommy notice me wetting my diaper a whole lot and sometime I do that. I just have to have water to keep me from getting dehydrated. I doubt I can get dehydrated. I eat and drink a lot as it it. Love ME
.6-21-02 Ganny bought me a wimmin' pool and a tinie tiny life jacket. I floated for a while then I kicked and had a blast. (I was naked! and Paw Paw Charles got it on video!!.. How Rude!) That was just what I needed to get me going! I stayed awake until 10:00pm and I was showing off to everyone. I was smiling and talkin' up a storm. Ganny is going out of town today so for the first time since I was born, I won't be at Ganny's on Friday night. I don't think I like that but I will be good and maybe she will bring me something. Love Matt
6-24-02 Dr. Dobyns at the University of Chicago finally gave us Matthew's diagnosis. Dr. Dobyns is a world renowned expert when it comes to brain genetics and malformations. His diagnosis was "similair" to Dr. Vada's Diagnosis but we got what we hope is an "exact" diagnosis. He said Matthew has Polymicrogyria & Schizencephaly with Septo Optic Displasia. Polymicrogyria means "many" folds in the the brain and Schizencecphaly means there is a cleft in the middle part of his brain. Septo Optic means his optic nerve is a lot smaller than it should be. We were told that already by the eye doctor. Dr. Dobyns could not say what the long term prognosis for Matthew would be. He said because each child with this is different when it comes to what their abilites or disabilites. I just feel better knowing that the "BEST" has seen Matthews MRI and gave us his opinion. It really doesn't matter what he's got, we just wanted a name so we would know what to tell people when they ask "what's wrong with your grandson". Of course, he is perfect in our eyes but some people have not had the blessing of having their very own angel and they can't see that he is PERFECT and nothing is wrong with him. John and I had a great weekend. Just Got home last night. Of course, you can bet I thought about Matthew at least once and hour! I hope I will be able to take him to Marine Life and SHip Island one day. I am going to get him RIGHT after work today. Mary's says he's doing good today. Just Chillin' again. Love Sunburned and Tired Ganny Charlotte
6-25-02 Had Physical therapy again. She said I did really good. She said I was strong and she was impressed with me. I think Im starting to liker her. xxoo Matthew
6-26-02 I have physical therapy again today. I am glad cause I like it. My therapist's name is Mary, just like my mama's name. She is nice to me and plays with me. slept a lot yesterday and kept mommy up last night and she didn't like that. Please pray for my runny nose cause I just finished my antibiotics and Im still congested. xoxo Chunky Cheeks
6-28-02. I am going to Ganny's today. I hope I can sleep all night for her! I hope you like my 4th of July Theme. Ganny will change it back Next Friday. I am happy and even making more noises than I used to. I don't know what I am saying but my mommy said I said . uh, ye hu hu uh ye. Love Matt
THe following are poems that I have written inspired by Matthew but words were given from Jesus.My Grandbaby Matthew and MeWritten by Ganny Charlotte It's two AM, everyone's asleep,and no-one's here but Jesus to see. As we rock slowly back and forth, My grandbaby Matthew smiles at me. His little hand is feather light Tucked up against my chin. I hold his tiny hand in mine, and stroke his chubby baby skin. I kiss him on the creases of his neckAnd Jiggle his cheeks aroundHe snuggles closer to me still, He smiles again making his baby cooing sounds. I love these quiet hours so much, And cherish each and every one. I Store these memories up inside my heart For lonely nights to come. Jesus let us borrow Matthew to soften our hardened heartsTo teach us each how to love each otherand gave us the choice of a brand new startHe’ll be back one day to take Matthew homeAnd the Statistics show it wont be longBut until then I still have time For soft sweet kisses and for song. I’ll always treasure Time for quiet hours like this with him cuddled in my arms, Where I wish he'd always stay forever Protected, safe and warm. But until then he's mine to love Where only Jesus , Matthew and I can see. As we rock slowly back and forth, My grandbaby Matthew and me
.November 11, 2002The words of this poem came to me whenever I noticed that in most allof Matthew's pics, he is looking up towards the sky. He will alwayslook up and smile whenever you touch his forehead and especiallywhenever you play peek a boo with him. I also I sketched a pic to gowith the poem and I am going to try to scan it.Love Ganny Charlotte
Angel Wings
Angels gathered `roundJesus stood nearbyThey gazed at one little Angel BabyWith great big tears in his eyesJesus called the Angel to himAnd said "It will be okay", youKnew this time would come, youGotta go to earth today."The baby looked at JesusWith his eyes He seemed to say"But what about my wings?I want them to stay!""You must leave your wings,I'll hold them everyday,I won't let anyone touch them,I promise you this today."But how will I know where they areYou know I cannot seeYou made me a special baby andI want my wings with me!"Jesus brushed his nail scarred handsAcross the angels browThe angel looked way up at JesusAnd said "I feel a lot better now."So when you see little Matthew,And you brush your hand across his brow,You'll see him as he looks towards the heavens,Then he'll show you his beautiful smileAs he looks up towards the heavensHe can hear the Angels singAnd he can also see Jesus,Standing over him,Holding his Angel WingsBy: Ganny CharlotteTo my Grandson Matthew Aaron Sanderson
I am the child who cannot talk. you often pity me, i see it in your eyes. you wonder how much i am aware of...I see that as well. I am aware of much...whether you are happy, sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for i cannot express myself nor my needs as oyu do. you cannot conceive my isolation, so complete it is at times. i do not gift with clever conversation, cute remarks to be laughed over. i do not give you answers to your everyday questions, responses over my wellbeing, sharing my needs, or comments about the world around me.i do not give you rewards as defined by the worlds standards...great strides in developement that you can credit yourself, i do not give you understanding as you know it. what i give oyu is much more valuable... i give you instead opportunities.opportunities to discover the depth of your character, not mine;the depth of your love, your commitment, your patience, your abilities;the opportunity to explore your spirit more deeply than you imagined possible. i drive you further than you would ever go on your own, working harder,seeking the answers to your questions, creating questions with no answers. I AM THE CHILD WHO CANNOT TALK.i am the child who cannot walk. the world sometimes seems to pass me by. you see the longing in my eyes to get out of this chair, to run and play like other children. there is so much you take for granted. i want the toy s on the shelf, i need to go to the bathroom, oh i've dropped my fork again. i am dependent on you in these ways. my gift to you is to make you aware of your great fortune, your healthy baack and legs, your ability to do for yourself. sometimes people appear not to notice;i always notice them. i feel not so much envey as desire, desire to stand upright, to put one foot in front of the other, to be independent. i give you awareness. I AM THE CHILD WHO CANNOT WALKi am the child who is mentally impaired. i don't learn easily, if you judge me by the worlds measuring stick. what i do know is infinite joy in the simple things. i am not burndened as you are with strifes and conflicts of a more complicated life. my gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me really means, to give you love. i give the gift of simplicity. I AM THE CHILD WHO IS MENTALLY IMPAIRED.i am the disabled child. i am your teacher. if you allow me, i will teahc oyu what is really important in life. i will give you and teach you unconditional love. i gift you with my innocent trust,my dependency upon you. i teach you of respect for other s and their uniqueness. i teach you about the sanctity of life. i teach you how very precious this life is and about not taking things for granted. i teach you about forgetting your own needs and desires and dreams. i teach you giving. most of all, i teach you of hope and faith. I AM THE DISABLED CHILD
6-29-02 I stayed up till 2:30 AM. Ganny ain't happy. Type more later.
6-30-02 I went to bed for Ganny at 12:00. She was so happy. I slept until 4 and I went right back to bed.
6-31-02 Went to church and had a blast. They always pray for me every service. Ganny makes sure I get to go to the alter every service, even when there isn't an alter call. She like to keep me really close to Jesus. I like the smell of the annointing oil. It's on my prayer blanket too.
7-1-01 Doing okay. Gotta a stuffy nose and spitting up my milk but Im okay.
7-2.02-2-02 I am doing good today. I have been spitting up my milk and I still have a runny nose and congested. I will go see Dr. Fairchild in the morning. I am suppose to go see Dr. Parker the Pediatric G.I. in September. Please pray the I am better before then. I laughed out loud for my Ganny Sunday night. She was so happy that she was cyring. She said she was happy that I could laugh and smile. She said some kids like me can't laugh or smile. I didn't think it was a big deal and it was really easy to do cause' I was so happy. They were playing a fast song and I was moving my arms and legs as fast as I could and got all excited and let out a big holler but Ganny said it was a big laugh. Please pray that I am better before the G. I. appointment comes up. Got Physical therapy today. I like Mrs. Mary cause she always comes to play with me and brings me toys!I love you. X0x
07-3-02 I had a doctors appt this morning. I'll let you know what she says. I still got that stuff in my nose. I am going to Ganny's tonight and we are going to cook out tomorrow. I want some chikin'.
7-3-02 THis is Ganny Charlotte. I wanted to share my conversation I had with my 5 year old niece , Katie yesterday. I took her fishing after work and she can talk your ear off. She began to say some things that I knew wasn't true. And the more she talked, the bigger the FIB got. I asked her if she knew where little girls went that told lies, heaven or to the devil? She said, to the devil. Then I asked where do little girls go that steal, (just to be the leader of the conversation for once I continued on) She said, To the devil. Then I said,,,, okay, what if a little old lady dropped a hundred dollar bill and you picked it up and kept it, where would you go? She says with the most serious look on her face.. "TO MCDONALDS". Kids, you gotta love em.Happy Fourth!7-3-02 Dr. Fairchild said for me to keep taking bynadryl and robitussen. She doesn't see any infections so I should be ok in a few days. She is also going to get my reflux problem checked out so I don't have to wait until September.xxoo Matthew7-5-02 Hope you all had a nice Fourth. I stayed with Ganny and I had a fun time. We have lots of pictures. I went swimming in my pool. I am still spitting up. Please pray for me. My tests are next week. Pics will be posted this weekend. Wait till you see how much I have grown.xxx00 Ganny's Lil Peek a Boo Man.7-8-02 Stayed with Ganny Charlotte all weekend. Ganny didn't go to sleep until 1:00 AM because I wanted her to play with me and she did. I am laughing out loud now. I got a message at 12:30 AM and that made me sleepy. I think Ganny was sleepy too because she quit messaging me for a few minutes but when I kicked her with my foot she started messaging again. I think I finally got her on the same sleeping schedule as me. Ganny says her goal is to get me to roll over before I reach 5 months. That means she has 10 days to do that. I can almost turn over but I get mad cause I have to be laid down to do it.Love Peek A Boo Man7-10-02 I had an upper G.I. on Wednesday and a Swallow study done on monday. I don't know what these are but it wasn't bad at all. They didn't tell mommy not to let me eat anything Wednesday morning and I had eaten a whole bottle for breakfast. We had to go back at 12:00. I was really good and all I had to do was to lay on a table and drink some pediatlite with some white junk in it it. It was pretty good. I could see the my tummy on the TV and I could see my heart. The doctor said I had a lot of air in my tummy but that was because mommy hadn't had a chance to burp me yet. I didn't have any reflux all day wednesday. We won't have the results of the test until we see Dr. Fairchild. I don't think there is anything wrong with my eating cause' everyone of yall had been praying for me. I had all the old ladies in the waiting room making eyes at me cause' Ganny had me laughing and giggling for them. THank you for your prayers and I love all of you. xxoo Lil Peek a Boo Man
7-15-02Had a great weekend. I have had some concerns over matthew's muscle tone and also believe he is having infantile spasms. The neurologist called him in some Baclofen for his muscle tone today. It will make him sleepy but maybe he will be less irritable. They say he will get used to the baclofen and then the side affect of the sleepiness will wear off. My other concern is Infantile Spasms. Matthew can be just waking up and he will drop his head and for a brief moment, his legs and arms will move straight out in front of him like he's stretching but it doesn't look "voluntary" to me... It's hard to explain. He has been doing this for sometime now but, like I said, it looked like he was just stretching. I also found out that those "Chills" he has may not be chills but they may be spasms. Just to be sure I put a call in to his neurologist and he has an appt July 31st for another EEG. Dr. Dobyns at UC emailed and said that the baclofen was a good prescription for his muscle tone but I needed to get him something for his spasms first because that was more important. Please keep Matthew and family in your prayers. Please pray for Me because I am about to make a big decision concerning my job. I know what God wants me to do, But I keep having second thoughts doing what he wants me to do. Matthew will be back (in first person) tomorrow to update his journal. I got to give him a bath at 3:00 AM . How bout' that. I never knew what 3:00 AM looked like in a bathtub before! He was up all night because "SOMEBODY" gave him Benedryl Sunday morning and he slept all day.. I won't call any names but you know who you are. LOLLove Ganny and Matthew
7-16-02I went to visit grandma last night at 11:45. She was surprised to see me. She ought to know by now that I am coming over anytime after 10:00 PM and before 5:00 AM.. She looked very sleepy. She was stumbling over stuf and I thought she was gonna drop me so I raised my arm and popped her in the nose. I think that helped. She said she need her eyedrops because her contacts dried while she was asleep.. I thought she'd been been nippin on the juice or something. Mommy couldn't get me to go to sleep. I was given my knew medicine baclofen around 10:00 pm. We found out it takes about and hour and or so to get me sleepy. She took me in Uncle Casey & Korey's Room around Midnight. They were watching movies with there Friend Dusty. Uncle casey sang "The Roof in on Fire" while I "raised the roof" with my hands.(YOu gotta be Kewl to know what Im talkin' about) My uncles are KEWL. They do "Guy" stuff with me. I like listening to Uncle Casey's CD Player with the ear phones. After I got through "raising the roof" with the guys my Ganny set me on the couch to fix me a bottle and I passed right out before she finshed. I slept "Like A Baby" for the first time in a LONG time. The medicine is working good and my Ganny says I don't act drugged so I can keep taking it and she will keep a close eye on me incase I get sick or sick or something. My legs and arm muscles are not tense and they don't hurt as much. My neurologist is suppose to call and get me an earlier appt so they can check to see if If am having spasms. Ganny always tells my Pa Pa John "You Don't have to have a Spasm". Im wondering if that's the same thing she thinks I am having. She says she aint gonna say that no more. But I feel fine.I can smile so big and laugh out loud and hold my head up and look around just like all the other 5 month olds. But sometimes when I first get up ganny says my head drops down and my arms and legs flail out in front of me. Kind of like what Happens when my Uncle Casey scares me but she said this happens when nobody scares me. I dont remember when it happens but they make me mad and sleepy. Please ask Jesus to help my doctor know what exact seizure control medicine to give me the first time so I don't have to try too many of them. Jesus Loves Me and You too so I know he will listen.XXoo Lil Peek a boo MAN.
7-17-02Grandma Becky took me too get my shots today. I didn't like that at all but I was really good. My head has grown to 40 cm and that's good. I weigh 19 lb 8 oz and am 26" long. They still say I need to cut back on my MILK and give me more baby food. My Ganny was doing the opposite because of what the endochrinologist told her. I was wide awake and showing off for Dr. Fairchild. I played Peek A Boo with her. The new medicine seems to be working good. The neurologist has not called back yet about the spasms. He better call back pretty soon or my Ganny is going to "GET" him. Hope to see some of you that are reading this at church tonight. I have lots of free "sugars" for you!Love Matthew.
7-17-02 The neurologist finally called back and I have an EEG Tomorrow at 8:00. He better be glad he called cause' Ganny was about to get on his case. Love Lil Matt XXOO
7-19-02 EEG was normal??? We are so thankful! I have been told by other parents of special children like Matthew that what we are seeing him do may be caused from his muscle tone. (He has "startle" reflexes and some very unique movements that are hard to tell from Infantile spasms or just motions caused by his high muscle tone.)I am just greatful these are NOT seizures and the his development has not been damaged any further. His Upper G.I. and Swallow study came back normal but he has "tongue thrust". He will se a speech therapist for that. Tongue thrust means that his tongue is hight sensitive and need to get used to different textures. THere is a special spoon he can use that is cupped front to back instead of side to side that will help the food stay in his mouth. With tongue thrust, he pushed the food out insead of taking the food in. Kind of like his tongue is working in reverse. It can be easily corrected with the special spoon and a oral stimulator. We found the perfect therapy for matthews tight muscle tone in his legs and ankles. A FOOT WHirlpool!. His mom was using this messager that vibrates AND bubble like a hot tub. My first thought was PUT Matthews feet in there! He loved it. He was so relaxed, he just sat there and enjoyed every minute. A few minutes later he was ready to go to sleep! I am going to get him his own personal whirlpool and foot messager. Maybe one day we can get him his own whirlpool bath.Love Ganny. TGIF
7-19-02 EEG Results changed!!!! Dr. Vada Matthew's Neurologist called around 2:00 today and said that matthew's scan did NOT show I.S.But IT DID SHOW FRONTAL LOBE SEIZURES. He wants to keep matthew overnight at UMC for observation and monitoring to make sure these are in fact frontal lobe seizures and then he will start him on some kind of medications. The thing that scares me the most is the medication. Most of them make them gain weight. Matthew is fluffy enough and we all know that! 19 lbs. I am scared and I know his mommy and daddy are scared but we know he is in Gods hands. We are very fortunate that we caught these seizures while he is so young. Most people think seizures are Jerking and foaming at the most. That's NOT true, especially with babies. If not for the informaiton for the LIss Loop and the I.S. Loop I may have never caught this. These seizures look more like "startle" refexes and "chills". At first I thought maybe I was overreacting and being "grandma" but Now I know that I AM going to listen to my inner feelings now and not listen to what some people may tell me like I am overreacting. I have a devine hand leading me in my journey with Matthew and when He speaks I always try my best to be still and listen and not question it.Please keep us in your prayers. Matthew is NOT in any pain and is happy and still giggling like he's a year old or something. These seizures just happen once or twice a day and he is not in any pain with them so dont feel too sad. He's still doing GREAT.Ganny Charlotte
7-20-02Matthew is still at UMC. Doing great. He had his first Phynelybarbitol (spell that right?) treatment at 9:30. Didnt phase him a bit. We still partied until 11:45, woke up at 2:30 partied some more then passed out at 4:00AM. I left this morning to go home and be with my boys and get some housework done. He had already had 3 doses of the new med before I left. one dose every six hours. He was playing and smiling, riding his bike and of course wearing granny out. We are waiting now on the EEG results from the one he had this morning. Of course, we have been waiting on the doctor since the EEG was done. Dr. Vada wants to make sure the seizure have stopped. He only "jerked" or "twitched" once and that was 2 minutes after he had his first dose. And that is great for him. I am anxious to see how he reacts when he gets home. He tends to have the seizures more when he is first awaken or in his walker. He's doing great and his "sugars" are all gone bye-bye.Me and matthew (Matthew and I for you teachers) got to meet two very special little boys while we were there. One little boys name was Kevin Garrett. He didn't have a mommy or daddy or no one at all was with him in his room while we were there. He was crying and crying. I thought maybe he was just sick and no one could console him. When Matthew woke up the first time, I decided around 12:15 AM to take a walk. When I got to the room I saw a tiny little boy in a big baby bed. He had an oxygen tube in his nose but was laying on his side looking toward the door. I asked the nurse If I could talk to him and she said YES, PLEASE DO!. We threw a blow up foot ball with him for a few minutes and I talke to him and played with some toys. He kept pointing at Matthew and then holding his hands out to me because he wanted me to hold him. I had my hand full and couldn't. After a few minutes I hugged him and he gave Matthew a kiss and we went back to our room. I didn't hear him crying again until around 7:00 Sat morning. I walked to his room and still no one was there but his tiny little body in that big baby bed. I finally saw a very young girl walk into his room around 8:00 Sat. morning. When I walked back by his room, he was still in his bed, Mommy, (I guess was his mommy ) was in a chair on the other side of the room. Broke my heart.The next little boy was just passing us in a stroller. He looked to be 5 or 6 but he didn't look like he weighed 20 lbs. His lil head was almost bald and you could tell he had some type of chemo. Not a word was said as he passed down the hall because he didn't have too. He looked at me and Matthew and smiled the most beautiful smile and waved and stared at us until he couldn't see us any more. It was like He and Matthew had a big secret. Maybe they knew each other in another time, another place and His bright smile and wave seemed to be saying, Hey Matthew, I'll see you again soon! He blessed me with just his smile. That one big smile from that fragile lil boy Gave me more strength, made me more thankful for Matthew, for my children, my husband, mom, dad and my church family. I better go. Gotta get ready for Matthew. They just called and are on their way home. I didn't get any EEG results because I was on line when she called. The EEG results must have been good otherwise they would not have let him come home!! Thank You Jesus! Ganny Charlotte7-22-02 Matthew is doing well today. He seems more comfortable and not so irritable. I believe that the frontal lobe seizures had a lot to do with him not wanting to lay on his back. He layed on his back for 20 minutes last night just smiling and cooing. I had an IDEA the other day when I say my sister using her CONAIR foot messager the other day. I borrowed it, poured some warm water in it. Put Matthew's walker on it, then turned it on vibrate , message and whirlpool. Then I put matthew in the walker. His feet fit perfectly into the bottom of the bowl. He sat there "in Heaven" for 30 minutes then he started fussing because it made him relax and made him sleepy. I can actually bend his feet at the ankles now. They can bend, just takes a lot of messaging and exercise. The baclofen has a little to do with that but I hope with all the physical therapy that we can wean him off of it soon. I am currently looking for a whirlpool tub or something I can use in the bath tub for him. For now the foot messager does great. I better go.Let me know if anyone has one they want to donate or sell.Ganny Charlotte XXoO7-24-02 I am doing good today. I sat had occupational therapy today. That lady rubbed all my muscles! Mommy said I felt like a "real" baby when she got finished. I also laid on my Ganny's bed while she ran my bath water. When she came back, I was staring at my disco light on the ceiling and smiling and talking to it. She called for pa pa John but when she called him it scared me and I stopped looking at them. Ganny was going crazy. I don't know why she acts like that. She always gets excited when I do stuff. This was the first time she said I was REALLY and TRULY was focusing on something. I had two baths, one with my floatie so I could kick all around the tub by myself then I had physical therapy, Then I got to use the foot messager. I was tired and limp as a dish rag by 9:00. I am taking 5 CC of phenylbarbitol twice a day and still on the baclofen. Mommy is going to try to reduce the baclofen little by little since I am getting so much physical therapy. I better go get ready for church. Ganny will be here to pick me up soon. Love Peek A Boo MAN
7-31-02Thank you Jesus for one more month on earth. Thank you for letting me meet the all the people you told me about before you sent me down here. Thanks for letting me be a "special" blessing to these people here. You were right. They really did need me. They were getting awful lazy and kind of greedy and self centered. Most of them have already changed a lot. The best part is, I didn't even have to do anything. Ganny can just carry me into a room of people and everyone stops what they are doing and suddenly their hearts are changed in some way or the other. Thank you for making me the way I am. I wouldn't want to be any other way. Thanks for showing Ganny about the seizures as quick as you did and for my new physical Therapist at Good Samaritan Physical Therapy, Tammy Davenport. She is definatly a "Good Samaritan".Love Lil Peek a Boo Man.8-2-02 I am doing okay today. My grandma becky thought I had a seizure this morning but she just wasn't sure. I have not had anymore and mommy has been watching me close today. I am going to "tucky".. That's baby talk for Kentucky. I don't know if I want to leave tonight or in the morning. Ganny says it's all up to me. I am going to the Doctor next week to have my blood counted. That sounds funny. Ganny says that means they are going to see how much Phenylbarbitol is in my system. It can be either too much, not enough or just right. I am also going to the Ear Doctor on the 7th. Ganny say I can hear GREAT out of my right ear but she's not to sure about my left ear. The left side of my body is most affected by my. Ganny told a friend of hers about me . She said I will be "Mentally Unique." Her friend looked at her kind of funny and said. "Hey,now that's how everyone should look him,, as "Unique". Not retarted. God made me just the way I am and just because my brain doesn't act like your brain doesn't mean that I am not normal. It means that I am unique.I'll see yall when I get back from Tucky. I hope Ganny can handle me cause I plan on partying the whole weekend!! I brought my swimming trunk and a lot of bottles and I am ready to go1Love "Little Chunk". That's what Mrs Ronda Calls me. 8-6-02 (late again.. sorry)(This is from GannyOWe arrived back from Kentucky Sunday night. Matthew was a perfect angel as always. He stayed awake 7 hours of a 9 hour drive. He was fascinated by the lights. We drove at night. I had more trouble with my teenagers than I did Matthew. We stayed at a motel with a huge indoor pool.. very warm inside and out. Perfect for Matthew. He floated around in his ring and was very excited!Matthew's Physical Therapist wants to put him in her next TV commercial. She owns Good Samaritan Physical Therapy and is also Matthew's personal P.T. We said "SURE". Not sure when it will happen but when it does, Im sure I'll have enough copies for everyone.Matthew hypotonia is still an issue but not near as much as it was 2 months ago. THe Physical Therapy and Play Therapy and of course the baclofen have done wonders. He will begin wearing "finger splint gloves" within the next few weeks. They look like "Biker" gloves. He opens his hands but he keeps them in a fist more than he opens them.I didn't get to see him at all yesterday. (I did try).. I was having "angel withdrawals". lol.. I told his mommy she better be there when I get home so I can get over my "angel withdrawals". Oh,, Tammy Davenport of Good Samaritan Therapy asked if we would consider letting Matthew be in her next Television Commercial. Of course we would love that! I always knew he was a star!Love GannyAugust 20.. Sorry it's been so long since I updated. First of all, Matthew is doing well. His siezures are under control and he is still making progress. His phenylbarb is up to a teaspoon and a quarter because he had a small seizure a week ago. He is still on the baclofen and his muscle tone is great. He is getting Physical, Occupational and Speech therapy every week. He will have some special "thumb splints" any day now. This will keep him from clenching his hands into fists all the time and will make his thumb grow normally. ON friday we will go to the orthopedic doctor. Not sure what he will do right now but just to keep an eye on the way his bones are growing,, especially his hips. We are trying to teach him to suck his thumbs. THat's kind of hard when he keeps his hands in a fist! Another thing we do is put pudding on his hands to get him to put his hands in his mouth. Yesterday me and my neice Katie cut out shapes out of black construction papaer and glued them to the window in front of his baby bed. He layed on his stomach and stared at them until he fell asleep. I had ready the babies with SOD can see dark shades and I believe thats true since seeing him focusing on the shapes. He still wakes up with a smile and is alway ready to give hugs and loves to be cuddled and kissed. His ear infection seems to be better and he's not been sick,, just a little constipated. He can move his legs in a "walking" motion and the therapist said that was a good sign. He walked, with me holding his hands on his own all the way up to my shoulder. He was grinning and squealing all the way! I better go. I have to give him his meds at 8:30. Love Ganny and Matthew.September 17, 2002 (FINALLY)It's been a while since I have been on line. Hope everyone is doing well and I have kept you all in my prayers. I have added new pics to Matthews web site at Peek A Boo Man will be 7 months old on the 17th of this month. So far the phenybar and baclofen are working great. He has only had a couple of ear infections and that's pretty good considering his polymicrogyria and schizencephaly diagnosis. I am sure it's only because of the prayers that he is doing so well.He has not rolled over but he is very close. HE has physical therapy 3 times a week and has shown and slow but noticeable improvement. He's not stuck in the 3 month old mental capacity as we were told he might be. He is grasping and putting things in his mouth. Even though he can't see, he knows voices very well. Well enough to cry when Ganny leaves a room full of people!He has great head control according to the O.T. and according to the bone doc, his legs are just fine right now.He is focusing more and his back strength is really great. He can stand on his legs if you hold his hands and takes high toe steps.His thumb splints have worked great. His thumbs look normal now and his is learning to hold stuff longer.He still loves peek a boo and yesterday, he went from giggling and cooing to a HIGH tone squeal that shocked us all. HIs uncle was rubbing his head and he got excited and squealed ..The sound was so high pitched it could have shattered glass!!I have never been so busy in my life. Even with me and his mom Mary taking care of him, it is still a lot to handle for even two people.Since he is blind his level of security is low so he is either scared to be layed on his back by himself too long or he is just SPOILED. Not sure yet!He will go to the Low vision clinic soon and also to the Blake clinic (cerebral palsy) clinic in Jackson soon. Not sure what they plan to do but I'll let yall know.My husbands aunt has an adopted daughter that has Cerebral Palsy.(Not related) and last time I saw them at the P.T. clinic she said she has a wheelchair that Matthew can have. All I have to do is go get it and she lives two streets over. That was several months ago and so far I can't bring myself to get it. I want to take one day at a time and I have convinced myself that looking too far ahead gets me depressed and stessed out. God has taken care of Matthew so far and I am still handling things one day at a time. I believe that God will let us know when It's time to get a wheelchair, IF we need too. He has already let us know ahead of time what we need to know. If I picked up that wheelchair now and put it in the back room,and just let it sit there,, waiting on Matthew....It would be just like the devil sitting there saying.. "You don't have to pray as much for him to walk cause' he's gonna have to use me no matter how much you pray". I'll be able to face it when the time comes. October 21, 2002October 18th. My 8 mos Birthday!I am 8 mos old today. I went to the Eye Doctor. He said that My vision was the same but still cant' tell what I can see. Ganny said that I was really beginning to focus more to my right (periperally) I also lay on my back and stare at the shapes on the ceiling that my disco ball makes. When we take a bath, I alway stare at Ganny to my right. Sometimes when Im staring, Im smiling the whole time. Ganny starts crying when I do that. I don't know why. I think she's just glad to see me actually look her in the face. I go back to the eye doctor in 6 months. I will go to the low vision clinic in Jackson Oct. 30 . (MS school for the blind) There is a lady that comes to my house once a months and plays with me. She is from the Blind school. She brings me toys. (some of them I already have!). I got an electronic pony from Great Grandma Ruth. They have to tie me on it with a table cloth but I can ride that pony like any other kid! I can't hold on yet but I can sure rare back and throw my hands up. Just imagine someone riding a bucking bull and that's how I look. Ganny says I look funny. I am having my room painted and it sure is taking along time. Mommy has blue jean teddy bears everywhere! I'll be glad when I get through.I am going to be a "little devil" for Holloween. Ganny says I look funny because I am more of an Angel and NEVER a little devil. Well, I better go. I am staying at mawmaw Becky's tonight to visit with my great aunt JUdy. Love Lil Bronco Bull rider Matthew.October 27, 2002October 31, 2002HAPPY HOLLOWEEN!.I am going on a Hay ride with My Mommy & daddy tonight. Ganny doesn't want me to get sick cause I got a runny nose. She worries too much. I am a tuff lil man. Ganny said she thought about it and she wouldn't want me to miss out on my first holloween. Sometimes she tends to be overprotective because she loves me so much. I wore my Lil devil costume to physical therapy and every said I looked silly cause my golden lil curls were sticking out of my costume. I better go, gotta get ready to go get some candy.October 31st. GREAT NEWS EVERYONE!We had an appointment today at MS School for the blind. The doctor at the low vision clinic checked him out. He was able to get matthew to track several times left to right while holding a red light. He also go him to follow a lit up toy. He SAID THAT MATTHEW NOT ONLY HAS LIGHT PERCEPTION BUT ALSO HAS "SOME" VISION! We are so happy! That is a long way from being told (BY ANOTHER DOCTOR) that he would only have light perception. We noticed during the last month or so that Matthew would look at us peripherally to his right and stare straight at us. We just don't know what he's seeing. I always thought down in my heart that when he looked at me like that, that he really could see me because once he got really focused on my face, he would smile.SEE EVERYONE!!! DOCTORS DO NOT KNOW EVERYTHING!!Another thing he told us was to start working with the vision that he has. He said to shine a small flash light on his bottle and try to get him to focus on it. You can shine the flash light on any toy that you give him.He also suggested wrapping aluminum foil around some styrofoam balls and hanging them throughout the house, like a mobile. (Im doing that tomorrow.Well I better go and you all that have children with this S.O.D. (Optic nerve hypoplasia) should never accept what the doctor tells you. Be patient and your child will almost prove them wrong Every time! I have not only seen it demonstated in Matthew but in MANY other special little angels like Matthew!Love Ganny & MatthewNovember 5, 2002Great news!Endochrinologist Appointment.Dr. Moll at UMC was VERY impressed with Matthew height and weight. Matthew is above average in height and of course in weight too. He's not too tall and not too fat, at least that's what Dr. Moll said. Matthew's head is 42 CM which means his head growth is "on the charts" now for his age. So his head is growing and so is the rest of him. Dr. Moll doesnt see growth hormones in his future but wants to keep and eye on him. I told him that we new what was making him grow. Your prayers!Love Ganny!Nov 6, 2002MATTHEW ROLLED OVER FROM TUMMY TO BACK TWICE LAST NIGHT! And statistics show it couldn"t be done?Well take that and put it in your statistics! Doctors are never 100% right! Not when you got prayers on your side!l0ve Ganny % rollin MattNovember 7th, 2002What Matthew has taught me. By Ganny Charlotte1. Never spend my days griping and complaining because the house never stays cleaned up. It's been that way for 14 years so it's not happening any time soon. A clean house means no kids, grandkids and a bored ganny.2. Always tell the ones you love that you love them everyday.3. Take extra time to jump on the bed in your teenage sons room, grab the playstation remote and say "move over" Im playing now!. You should see the look on their faces!4. Surprise one of your kids on the way to school and surprise them by stopping at the donut shop on the way. Take one at a time so that this is their special time.5. Those dirty clothes wont wash themself but they can wait at least a couple of days. Especially if you have something to do with the kids or grandkids.6. If someone wakes you up around 3:00AM, like your kids or grandkids because they can't sleep, use this time to play or Rock them. Don't rush them back to sleep and get all mad, cherish each moment. Make some Hot chocolate. Matthew loves Hot chocolate. I actually washed dishes at 2:00AM while matthew played in his swing last week.7. Call your husband at work, just to say you love him, and vice versa. John always thinks I want something when I do that so that tells you I wasn't doing that near enough!8. Don't dump your kids or grandkids everytime you want to go to town. Take them with you. It's hard getting them dressed but it's worth it. 9.Always, always get sugar from your kids and grandkids before bedtime.. Always and say I love you!10 and finally. ALways take your kids and grandkids to sunday school. Invite kids that you know that never go to Sunday School and even let them spend the night on Saturday and take them to church on sunday. I once read that just like you should teach your child to brush his teeth, go to school, wash his hands and scrubb behind his ears, you should also teach them to go to Sunday School and learn about God. They need to know that life has a purpose and being able to reach God when they need Him is the most important. When everyone else can't help you, God will always be there for you.Love GannyNov. 15, 2002I am almost 9 mos old. Can you believe it? I weigh 23lbs too. I am suppose to not be eating, not be growing not be using my arms and legs, not be able to see and not recognize people, not able to laugh, giggle or smile, not be able do much of nothing. WEll guess what? Im doing ALL of it. I am already rolling from stomach to back and can almost roll back to stomach. I can see lights and have some vision. I am very vocal. When I cry, I say mamamamammam and dadadadadadadad. I know when my ganny leaves the room and I know when a stranger is holding me. I am above average in my height. Now you can look at these as little miracles or you can just say that the doctors were wrong. Me and Ganny know they are all little miracles. It took me longer to do each one of these things because they had to prayed for, one by one. God told me that whenever he sent me that I would have to rely on the prayers and if no one was praying that I would just get back my angel wings early. I told him that I really liked it down here and so far someone is praying for me everyday and everyone loves me very much so I think I'll stay a while longer. HE said that was fine with him and he would still hold on to my wings for me. I don't need my wings down here anyway, someone is always holding and carrying me.I better go. Ganny's gotta get ready to take me to Physical therapy. Pray for Mommy, she had two wisdom teeth cut out today.Love Pooh-pooh Man (New name after last nights diaper change)November 17, 2002Hi everyone! Matthew is doing great today. He goes back to the doctor tuesday for a follow up fr his ear infection. We think Matthew learned a new word. HEre it is "ONION". Yes, I said ONION. This is sound that he makes when he is just laying around or making a "pooh". I know it's kind of silly but that's what he says. He may be trying to say GAnny and calling me "Onion" instead.. lol Who knows. He can call me ONion if he want's too. Love "Onion" Ganny and MatthewDecember 7, 2002 (I know, it's about time)Matthew will be 10 mos old on Dec. 18th. I Can't wait for his 1st b'day. We are already making plans! Here are some of the things Matthew has accomplished since I last wrote in the Journal. He can roll over from stomach to back all by himself. He has sat up by himself for 8 whole minutes! He can roll from back to stomach with very little help and is expected to do it by himself any minute. If we would just let him lay on the floor and ignore his pitiful cries, he would probably do it. He is so spoiled!!! His mama said he said "Mama" last week. They have also heard him say "DaDa". I have not hear it yet. HE continues to say "Onion". We are almost convinced that's what he's calling me.. I'll take what I can get! He has not been sick and his ears are still clear. It's amazing how his health is better than the ordinary baby!.He is grabbing with his hands. It's a slow but VERY firm grab once he gets it in his hands! Especially hair, necklaces and earrings. He was playing with a toy at Physical Therapy yesterday. He would slowly open his Middle finger and claw at the toy with it. He did this twice! Today is also the Birthday of Brandon Miko. He would have been 7 years old today. He is now doing fine,smiling,running and playing with the angels. I never got to meet him and when I met his parents he had already became and Angel. HIs parents, Helen and Matt are great supporters on the Lissencephaly Loop. Even though their Angel had to go back home, they continue to stay and give love and lots of support to all the other parents who have borrowed Angels.I sketched a pic that His mom, Helen sent me. His mom said that he never smiled but he did all his smiling with his eyes. She sent me a picture and I did some adjusting when I got to his cute little lips. You will even notice how much he favors Matthew. That's one of the things I believe that drew us to each other. Well, Happy Birthday Little Brandon. We all miss you lots! You are doing a Wonderful Job as Matthew's Guardian Angel because he is doing great!. Even though we are far apart, you will forever be in our hearts.Ganny & MatthewDecember 12, 2002Old Eyes, New Eyes. A Story From Ganny Inspired by Matthew.My Old Eyes....BEFORE Matthew was born, I was to sing at a church in our town. I noticed in the audience that there was an older man holding a "older boy" in his lap. The boy in his lap looked to be about 20 years old. You could tell that he was "had something wrong with him". His dad was holding him like a newborn baby. Every two seconds he would bend over and kiss the "boy on his cheeks. He would rub his hands on the boys head and play peek a boo and the boy would smile. He would bounce him up and down when the music played and then rock him as he slept. I went home that night and didn't think a second thought, mostly just wondered what was wrong with him and how in the world could his dad hold him like that? He must have held him 3 hours that night.My New EYESAFTER Matthew was born I remembered that little Angel on his daddy's lap. I wanted to go back and find out who he was because I wanted to meet this little Angel. I wanted to get the blessing of seeing his smile and wanted to play peek a boo with him. I knew why he was kissing him every other minute on his cheek. I knew why he was caressing his head and cradling him like a baby. I wanted to tell him, "Hey, I have and Angel too" , Can I please hold your Angel? I knew that no matther how big our Angels get that they will always be our little babies. Everytime we go to that church to sing I look around for him or his daddy but have not seen them since. Just another one of God's ways of getting me ready for his Perfect Little Gift.Love Ganny & MatthewJanuary 12, 2002It's about time. Sorry I've been kind of busy lately. Matthew is doing great! Since Christmas he has only had a bout with bronchitis and of course an ear infection but is all better now. We have been making BIG PLANS for FEBRUARY 15TH. cAN YOU BELIEVE HE WILL BE A YEAR OLD ON FEB. 18TH? I have enjoyed and TREASURED every minute with him.on FEBRUARY 15TH AT 6:00 There is going to be a BIRTHDAY BENEFIT AND PRAISE CELEBRATION. We are already booking gospel groups for the event. There is going to be food and fun for the kids afterwards. We want to celebrate his 1st Birthday and also Praise the Lord for everything he has done for Matthew. If any of you kin folks are reading this we hope you can make plans now to be here! His hair has gotten so curly. He is maintaining his weight now because the doctors took him off the JUICE. Only Milk and he has to be spoon fed if he eat baby food or cereal.. no feeder bottles.He was given a stroller wheelchair and also a stander by a friend of ours we met at Physical Therapy. The stroller fits him perfect and has been a life saver. He LOVES the stander. It has a tray on top where he can play with his toys while standing. He also watches TV now through the right corner of his eyes. NO ONE can tell me he can't see because he loves to watch The WIggles and Barney!His spine is perfectly straight, no scoliosis. He is being fitted for another brand new Gait Trainer which is really just a walker with support. Also he is getting a seat that is molder to his body that can be put in his highchair, stroller, really anywhere. It helps him sit up straight. He hasn't rolled from back to stomach but he is just about to get it, just a few more inches and I believe he'll be doing it before his birthday.A lot has happened since Christmas and we have had a lot of appointments. I am also babysitting to try to make ends meet. Oh YEA, Matthew is being considered for ANGEL WISH 2003. We went to the meeting Sunday night and WE are praying that they will help him. RIght now things are okay but the bigger he gets the more things he will need. Well, that's all for now. PS If anyone knows where I can get a FREEE computer please let me know. Looks like that's the only way I'll ever get another one. We use the computer for research and for our on line support groups.love Ganny & MatthewFeb. 8, 2003Well, Saturday is the big day. The Birthday Benefit and praise celebration. I cant believe my angel has been here almost a year now! He is doing great!Feb. 21 Not good news.Matthew was admitted to UMC Monday the 17th for what we thought was some kind of mild seizures. They started him on another siezure medication called Topomax. At 1:00 Tuesday, on his birthday, he had his first REAl seizure. He was up 13 hours right before this seizure. I new something wasn't right and something was fixin to happen. THey doubled his Topomax the next dose. 30 mg a day. The Topomax has decreased the seizure activity they are seeing on the EEG. He got out of the hospital Thursday morning and we were told if the Topomax didn't completely stop the seizures that they will have to try other medications. And if that doesn't work they are considering removing the left frontal lobe of his brain that is causing the seizure activity. Don't have any details and have not researched the goods and bads of brain surgery but I will know everthing before the surgery for sure. He is doing better today. We just have to make sure we don't "startle" him and can't lay him on his stomach or even flip light switches on and off. All these things seem to cause the small seizures. THe type of seizures we were having before we got to the hospital didn't look like a seizure but it didn't look right to us. He would be laying on his back, then he would throw his arms and legs up and try to raise his head but he would hold it for only a couple of seconds. He started the big seizure right after he coughed. Then he laughed histerically for about 45 seconds then went into the convulsions. It lasted about 5 minutes. Im just glad we were in the hospital when it happened. I had always wondered how I would handle it if he ever had a siezure. I always was amazed at how other parents of kids like Matthew were able to talk about their kids seizures and be around seizures every day. Well, when the time comes, you don't have a choice. We didn't freak out and the doctors didn't come running cause there's really nothing you can do except to monitor heart and breathing. We just held him and prayed. We were scared but I knew that we had a LOT of people praying and that he would get better, AND HE DID. By the way,, we raised over 1,000 at the benefit. Not enough to buy a new hot tub or whirlpool but guess what? On Matthew's birthday, my aunt brought over a nice whirlpool tub and said it was his and we didn't owe her nothing. THen his Aunt on my husbands side called and said that she decided that they wouldn't be able to install the hottub she had for another 2 years and we could have this one too! (Someone gave her this one too). SInce we have TWO baths now, we will use the money raised to help reinforce the floors and possibly buy a hot water heater. We are going to put it off until we find out for sure weather or not Matthew is going to need surgery. It gets expensive living in a hospital and especially gas prices so we may have to save it for that.Anyway, THanks for all your prayers and for all the birthday wishes for Matthew. I am trying my best to keep this page updated but it's getting harder and harder. I may get someone to help me out one day. Even the owners of Babies On Line are keeping up with Matthew's page to make sure it's updated!Love Ganny and MatthewMarch 4th, 2002Hello everbody. We just got back from Children's Hospital after a 24 hour EEG. We won't get the results for a week. The neuro wants to pinpoint exactly where my siezures are coming from. The Topomax is already working because I didn't have any "noticeable" seizures, just a few "quick spasms" this morning. I was sure glad to get those EEG probes off my head! They put 'em on at 10 AM Monday, then we waited until around 4:30 to even get admitted into the EEG room! I was tired by then! I had to walk around looking like a rooster with those things sticking out of my head. Ganny sang the wiggles song "quack quack, cock a doodle doo" so much I almost had to grab her hair. I didn't get no shots and no IV lines thank goodness. I am doing better so your prayers are still working!.On March 2, we went to Louisiana to a singing at the Pioneer Assembly of God Church. A little country church. I got to dance and praise the Lord with a lot of folks. One little old lady asked my Ganny "Can I pray for him before you leave?" Ganny said, YOU Sure can". She was nice.My hair still has flakes of Glue flying out. Everbody thinks I got dandruff but Ganny sets 'em straight. I better go cause my mommy is fixin to come get me for a little while so I gotta give Ganny a lot of sugars to hold her over till I get back.Love MAtthewMarch 12, 2003We are fixin to be on our way to UMC to get the video EEG results. Matthew is not having those "spells" that we can tell from watching him physically but the nurse said the EEG still showed siezures but she wouldn't go into any detail because she wanted us to see the neurologist. Please keep us in your prayers.It's official that Matthew will be this years "Angel Wish" baby. That means that some very wonderful people are going to have a big benefit for him on June 22nd. They have already started selling raffle tickets to raffle off a 2003 Harley Davidson (883 Sportster). There will be lots of music, food, flea market, old country store, games and fun for the kids, and lots lots more. It's on a sunday and will last from 11:00 AM until 10:pm. The drawing will be that day for the Harley. Wildman, Larry is the Angel Wish's "Big Guy". I think he started it all. They have helped several children in our area. Not only is he the "Big Guy" that does most of the work to pull these benefits together but to us he is just another one of God's Big, Strong, (Harley Ridin') Angels sent to us to help another little Angel with a broken wing. I'll keep ya'll updated on the EEG Results. I was thinking the other day that withing the last 3 mos I have not seen much if any more progress as far as Matthew trying to rollover or sit up anymore. THe seizures are causing this, I know but if we could just get them stopped it would be answered prayers.Love GAnnyMarch 13, 2003The topomax has stopped the seizures! That's the news we got yesterday. The EEG still shows some abnormal brain activity and he's not sure what's causing that. The 'spells' we are seeing are from the abnormal brain activity. I can already see an improvement in his daily activities. He got to where he didn't want to stand in his stander or sit in his walker. I guess that was because of the siezures. Now he will sit or stand for about 45 minutes at a time. Now with the siezures stopped he can continue to progress mentally and physically. He is going to start Hippotherapy. For those of you that don't know what in the world that is... It's ridin' horses for therapudic reasons. (In his case, his hips) Matthew's hips and heel chords are very tight and if you are around regular babies, you will see that they can almost do the "splits" and are very limber. Matthew's legs are like a pair of VIce Grips!. If you hold his hands and let him stand, you can't even get your hand between his legs to spread them out. So riding a horse helps this and it also helps with digestion, constipation, the respiratory system and a lot of other things. He is going to start off on a miniature pony. Yes, we have video of his first visit! Well, Matthew's mommy and daddy are getting married Saturday, the 15th. I hope things work out for all of them. I better go! Time for our Bath!Love GannyApril 8, 2002 (FINALLY)I am doing great today. No runny nose, no seizures, just happy and smiley. My doctor said all of my stuff was working just fine. (Endochrinologist) That's funny cause he thought I would need growth hormones. I am 32" tall and weigh 24 lbs and some ounces. I got to get tubes put in my ears May 15th. I am eating with a spoon now but I still have my bottle with my formula. I am also still sucking my pacifier. Ganny says she'll know when Im ready to give em up. Im still having trouble getting my mouth to chew and swallow like I am suppose to but I am getting better at it every day. I am also riding horses now every Thursday. I aint ridin' the lil pony now.. I am riding the BIG horse. It's bigger than ganny! I got my own ridin helmet but I am getting a new one. (Dogs like to chew on them things. ) I like to pat the horse on the head and feel it's mayne with my fingers. It doesn't matter how tired or irritable I am when I get on the horsie it always makes me laugh and smile. I can sit straight up on it too!.When ganny tells people I am going to HIPPOTHERAPY, they just look at her real funny. I guess they think Im ridin a hippopotomus or something ha. I am going to physical therapy now so yall be good and keep them prayers a comin cause they are still working.Love Lil MattApril 28, 2003Hi everyone. Lil "Boomerrang" (new nick name) is doing great. Only having problems teething. Still only 2 teeth at 14 mos. It's also disturbing his sleep. Looks like all the rest of his teeth are trying to come in at one time.We will go on May 15th to get tubes in his ears. I am considering getting them checked next week to see if they are all healed up. He has been doing so good that it doesn't make since to get tubes if his ears are not infected. It's been over a month since his last ear infection. He still has not rolled over from back to front but he's still trying. His tone is still tight even with all the therapy. He's only been to hippotherapy twice but I am looking for great improvements to come with the therapy. Well I better go.. boomerang is back. (Now you get it?)Love GannyJune 6, 2003 (Been a LONG time!)Matthew is doing great. Had tube put in his ears on May 15th with no complications. No more red ears. Matthew will be in the Vicksburg Post The second sunday in june featured in the Society section. Will probably be a full page. The feature is to help promote the Angel Wish benefit. The photographer, Melanie followed me and Lil Matt to the pool and then to ride horses. She wants to spend half a day with us on Tuesday to see what his day is like. I told her if she spent the day, I would have to put her to work! She laughed but I wasn't. (Ha) Lil Matt will be on Channel 3 WLBT with Jack Hobbs on JUNE The 18th around 6:00 AM. That means we gotta get up really early in the morning and drive to Jackson. He will probably be awake but Im not sure if I will be awake or not! Another Angel WISH promotion. These are some of the sweetest people! Mr. John Fuller the Angel Wish VP watched Matthew ride horses on Thursday and His friend Mrs Debbie held Matthew for a while and got all his sugars and played with his curls. Those curls will get you every time..... It amazes me how people you don't even know will go out of there way and take time out of their busy schedule to help children like Matthew. Somewhere down the road, a little Angel like my Matthew must have touched their lives and gave the the "want too" to help other special children. There are people that talk about doing something and think a bout it and eventually forget about it. Then there are those that just get up and DO IT. Thats the kind of folks that are involved in Angel Wish. I have learned a lot by just watching what all they are doing and will try harder to be like them. Some people are looking for "something" to do that is meaningfull instead of getting caught up in the "rat race" seeing who can be the "most powerful" or "the smartest" or "most educated". If you didn't have a college degree or lots of money and power but you helped to make the life of a handicapped child a little easier, that's what I would want people to know about me. That's what I would want read at my Eulogy! (Did I spell that right?)Love Ganny & Matthew!!!June 16, 2003Finally a chance to update! A LOT of great things are going on this week! First of all, Matthew is doing great and is as healthy as ever.No seizures, no ear infections, not even a runny nose. Ganny and Matthew were in the Vicksburg Post on Saturday. It was a promotional article for the Angel Wish Foundation. The reported did a great job. On Wednesday at 5:50 AM, yes I said AM, we will be on channel 3 WLBT with Jack Hobbs. Matthew's pic is already on a couple of stations already but I have not seen them yet. Too busy. It's amazing what the Angel Wish folks are doing. I am so grateful to them for Matthew. I was getting worried because matthew is outgrowing all of walkers and entertainment seats and medicaid won't pay for the kind of things we want to get him that HE DESERVES. Like an adapted tricylce for handicap kids, also a crawler that will help him learn to crawl and many other things we plan on getting him as he grow up. Most kids have to just sit in their wheelchairs or lay on the floor. I think all handicap kids should be able to have other things they can get in or play in instead of sitting around all the time. Most familie cant afford these adapted bikes, chairs, walker because they are very expensive! Thank God for Angel Wish. They are making Matthew's life a whole lot better already.I am trying to upload some Pics of Matthew on the horse that the Photography took at the Vicksburg post but they are too big.. I guess I'll keep trying. I will also scan the article that was in the paper if I get a chance.. sorry for type o's ,, in a hurry as usual. (PS. Matthew finally got to see his Great Aunt Nance from Texas,, when they brought him home, he was "bone dry" and had not a sugar spot left on his body!!!. It took a while but he's got all his sugars up again.)Love Ganny & MatthewJune 22, 2003 (Angel Wish Finally Here)What a HOT Day this was... 99 degrees, hot and humid. But you would not believe the people that were there! Look to be a couple thousand but not all at one time. I can't believe how these people stayed out in the sun, some of them all day... Wish we could give each one of them something for doing this. I did however get a hug from Wild Man (Larry Frost).. He wrote the most beautiful poem for Matthew and read it to everyone before the Drawing for the Motorcycle. Here it it.I MET THIS BLIND CHILDTHEY CALL HIM THE PEEK A BOO MANHE CAN'T SEE, WALK OR CRAWLBUT THERE IS SON MANY THINGS HE STILL CANHE CAN TOUCH YOUR HEARTS, HE CAN MAKE YOU CRYHE CAN BRING CROWDS TOGETHER HOLDING HANDSHE WILL GO TO HEAVEN WITHOUT HAVING TO DO THE PLANGOD BLESS MATTHEW, GOD BLESS YOUTHE ANGELS WISH IS A "GO"BECAUSE OF THE TWO.We all were teared up before he got his first line out and so was he. I still can't believe how hard everyone worked to pull this together.I wondered how things were ever going to work out when I had to quit my job to help with Matthew. I always knew that God would take care of us but I never thought that people from all over would come together to help little Matthew. I didn't know that Matthew already had a Guardian Angel on earth waiting for his arrival. There are so many children right here in Vicksburg that are just like Matthew physically and financially but Matthew was chosen this year...I believe God had a part in the choosing. Not only is Angel Wish helping Matthew, but they are able to continue to fund the previous years childrens funds with this benefit. Every handicapped Child deserves to get whatever they need, when they need it and this is what Angel Wish is doing for Matthew. Just seeing the look on Matthew face when he hugs on the horses at Rainbow Farms is worth it all to me.I have lots of pic of Us (ME, MARY, MATT and LIl Matt) but I have to get them developed to put on this web page. I also have pics of some of the years previous Angel Wish Kids. Well, I better go, Someones getting sleepy...Love Ganny & MatthewJuly 17, 2003Been a while huh? Well there has been a lot going on. Matthew got HIS van last monday. A matador red 2002 Ford Windstar LX. Airconditioning City! He loves it. He can sit in his kid cart OR his car seat. He loves sitting up in the kid cart like a "big boy". The van came just in time with all the appointments coming up this month. Already been to Jackson twice for two appointments. Matthew is doing great. Still no ear infections or runny nose since he got the tubes put in. He's been just great. He got his first HAIRCUT on monday! He looks just like daddy MATT even more now. He looks like a little boy and not a little baby without those curls! I have every curl in a bag if anyone wants a curl or two.He is really doing great since I spread out his meds instead of giving them all at one time. I had heard this might help with his irratability and it has done great. He has slept all night for the past two weeks!!!! Don't know how long this will last because of his enlarged hypothalamus but maybe the doc's are wrong about that too.He has his own bed now and I TRY really hard to let him sleep in it. He doesn't have a problem sleeping without ganny but I DO! I have to turn him over every time I turn and if he's in his own bed that means I have to get up! (THat's my excuse)We will be adding on to our house in a few weeks for a room for Matthew with a whirlpool. Can't wait to get started. At least then I'll have room to put his clothes in his own dresser. HE is still a handful and likes to have my undivided attention. And he makes sure he gets it too. Matthew is going to speech therapy now. They are doing a good job. Most of the work has to be carried on at home too. There are 2 steps you have to take before you feed him to get him to eat. Has to do with the muscle tone in his mouth. Some people think he's not hungry and just dont feed him but it's not that way. I'll have to tell you about it in my next journal entry.. Feeding is becoming an issue with Matthew. I am trying every trick in the book to keep him from getting a feeding tube!Love GannyAugust 4, 2003Matthew is doing great. Got his Mulholland Toddler Walkabout last week. It has been a life saver. He seems to want to be in it all the time. He started off slow pushing it around, but each day he is getting used to it. It's fun having him follow me around the kitchen and have him bumping into things. lol He's been needing this for a long time but as usual, I had to call and get it myself and if it wasn't for Angel Wish we wouldn't be able to afford it. It was 2,300.00 with the arm troughs. The arm troughs are kind of useless right now because they are too big. There is a picture of it if you are interested at mulhollandinc.com Now I can actually get a few things done around the house while he is pushing around. Only thing is I don't have much room for him to go very far without having to pull him back to the starting position every 5 minutes but it's still worth it.His swallowing study came back normal. No asperations into the lungs. The gurgling we here after he eats is due to him not swallowing everthing in his mouth. The speech therapist is working on that now using some different techiniques. one is called "toweling" where you use a towel and stroke his jaw muscles and his bottom and upper lip. Then we use a baby tooth brush and massage the inside of his mouth and gums. We do this before feeding and you would be shocked at the difference it makes. Also cuts down on drooling! Well he is swinging with great grandma ruth right now and probably ready for his nap. Love Ganny Charlotte * MatthewAugust 17, 2003Matthew's in bed sound asleep. He's been sleeping all night the last few nights. What a blessing. Just wanted to share that we were blessed by two little angels withing the last 2 weeks. When there seemed to be no way, God made a way and sent these angels our way. God knows who I am talking about.Matthew got his first hair cut last month. I think everyone has a curl, if not, give me a call and I'll send you one. He is growing so fast! Sometimes I wish time would slow down a little. Lord knows I've got enough pictures of him for memories of his baby days. He is looking like such a little man now. My house looks like a "shrine" to lil Matthew. I guess I can cut back on my picture taking to every six months instead of every three!We have an appointment tomorrow at Beechwood to get Matthew into the early educatioon program there. I have heard some good things about the program. Of course, I will be staying with him.. I don't know if I'll ever leave him there.. If I do it will be a while. He'll only go 2 or 3 days a week 8-12. He loves listening to other chilren playing and talking. He's a smart guy and knows he's surrounding really better than what some people may think. THe OT, and PT will give him the therapy at school. That will keep me from having to make so many trips to town.. Right now he goes for OT and PT 3 days a week, speech therapy, one day a week and hippotherapy once a week. He still love the horse. You can tell by the look on his face on the front page of this site. It's amazing how he knows when he's with the horses!God has been doing so much for him. With each passing day, he is gaining more strenght in his legs and trunk area,, meaning I really believe he's gonna walk one day... you should see him in his walker!!! I had to put pillows on the corner of my island stove because he kept running into it. He got his first bump on the head. I got to put Ice on it. He just layed there and smiled and let me hold the ice on his head. (right above his left eye) If it were up to me he would never get bumps or bruises but sometimes you gotta just let him find out for himself. After all, all babies get bumps and bruises. Don't worry, I still keep a close eye on him but this time he got away and I think he knew it. Well, I better go, my usual luck is I stay up on the computer after he's gone to bed, then when I go to bed, he thinks it's time to get up... I have to be really, really quiet!Good Night!GannySept. 13, 2003Please see the poem "The disabled Child" at the top of this page. This poems says everything I am thinking and feeling today.Ganny Charlotte