From the beginning, my old journal when Matthew as a baby.

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