My oldest son Casey, (Josh) graduated from High School tonight. We are all so proud of him. Matthew went with us and was a perfect angel. We were very close to getting rained out. There were bad thunderstorms all around us! Here are some bragging pics for everyone to see. Boy do I feel old!



Proud mom and dad.
Casey and his sister Mary
Casey and Grandma and Grandpa Pugh, Granny Kappler, Aunt BJ, Stephanie, Tabitha, Rebecca and Steven.
Casey and Matt (Matthew's Daddy)
Good Night! I gotta get some rest before Matthew decided to get up!

I am currently adding Links to our Blog. I'm having a little trouble with the html code. I did finally finish the web page design. Please bare with me on the Links while I try to figure it out.

Matthew is doing "pretty good". Considering those nasty Tonic seizures. He's having less myoclonics but more of the tonics. The myoclonics are coming in clusters. Usually around Five thirty in the morning and when he wakes up from naps. The tonic seizure (staring siezures) are scary. They usually last only a few seconds but they make him weak afterwards. He even had two in the swimming pool today. The only thing the neuro suggested was to up his Lamictal. I don't think it's doing any good.
I just hope he doesn't have a grand mal. If he does, I am prepared. I have some Diastat Suppositories. (valium enema) if they last more than five minutes then we take him to the hospital. These siezure don't affect his breathing as far as we can tell. The neuro says they are not the seizures that cause further brain damage.

He is doing good as far as not being sick in a while.
WE have a lady coming now three days a week to help. She is great. Her name is Ms. Martha. She is really patient and loves Matthew. She is 29 and has no kids of her own. She took care of her mom for 14 years before her mom died last January. She was given custody of her mom at age 14 just so she wouldn't be put in a nursing home. Somehow she was able to do this by being emancipated.?? I brought her two jars of the stage 3(that's the big jars!) baby food thinking that I would have a little food left over for supper but she fed him every drop by spoon. Matthew's belly was swollen up. Reminded me of a puppy who just finished nursing. It was so funny. He belched really loud and he felt like he weighed five lbs more! He was limp and ready for a nap. She said she though he was suppose to get all of it. I told her if he ate it that was great! If he makes this a habit I will not be able to afford Martha because I'll be spending 600 a month on baby food!!!! lol

Well, Casey graduates from High School tomorrow night. Then he's off to Paris Island Boot Camp July 11th. I am going to miss him. He has been the best kid a mom cold ever ask for. (As far as I know but what I don't know won't hurt me. ha)
I'm just glad he's got a clear head on his shoulders and sticks to his guns. He's the type that when he sets his mind to something it gets done but if he's not interested, he won't even try. He has always been a big help to me.

When he was four years old, I can remember him carrying Korey's diaper bag and my purse for me up the stairs to our small run down apartment after I had worked all night. He always wanted to carry it for me, even when he had been asleep at the babysitters, he would wake up and "zombie" walk to the car and he would grab korey's diaper bag and my purse and hold my hand while I held Korey. (I didn't dare wake korey up.) Those two are like night and day!
I feel old but Matthew keeps me young and keeps me on my toes. I wish Matthew could go to school and graduate and have a family but it's ok if he can't. He wasn't born to be like normal people. He's unique and will forever be our Baby Boy.

I'm waiting on kids to get home. Casey went to a party. I hate those parties before graduation. So many things can happen. I gave him my speech and reminded him not to "mess up". Korey is suppose to be home any minute. Curfew is almost up!
Good Night, I am tired and worn out.
Charlotte
Happy Mother's Day!
For our Mother's Day Service at church, I was asked to write a poem or something from Matthew to me. That only seems propers since I am Matthew's voice, arms , legs. etc. So here it is. My husband read if for me in church.


From your "other" half.
To Ganny From Matthew

I don't have to see you to know who you are. I know you by the sound of your voice and the touch of your hand.
I don't have to see you to know that you love me because I can feel it all around me whenever you hold me. I just don't feel it a lot when I'm laying all by myself so that's why you have to pick me up, that's why I cry when you lay me down, I don't think it has nothing to do with being spoiled.

I don't have to walk or crawl with you because you will carry me or push me in my chair. I don't have to stay home because I cannot walk, you take me everywhere. I have been on an airplane and got to ride with the Pilot and I have ridden on a boat on the middle of Lake Michigan and stayed in a four start Hotel and snuggled with you on feather downed mattresses and pillows. You held me on the top of the sears tower and I have been on a Big Red Fire truck and I have been on sliding boards in the park. You even let me play and walk barefoot in the grass sometimes. You let me ride on the carousale at walmart almost everytime we go. I go to the archade and walking in the park. I go swim- swim almost everyday, even in the winter. You take me to Church and let me go in your Sunday School Class. Oh, I like to go to garage sales too. I have done things that some kids have never gotten to do. My Ganny has big muscles so she can carry me.

I don't have to be able to talk but I know what stuff means. Like nodding my head "yes" or "falling down" when you play ring around the rosies with me. You are my voice, you know exactly what I need without me having to tell you. You sing to me and you dance with me all the time. I love music and you help me clap my hands, I love to clap. I especially love to hear other people clap for me.

Every time you roll over at night, you roll me over too. You take me to all my doctors appointments and keep me healthy and safe. We take baths together and you help me splash water all over the bathroom and you let me jump on the bed. You help me use the potty like a big boy. You read me books and sing to me all the time. You feed me good so I don't have to get a feeding tube.

You say my night prayers with me everynight. You bring me a warm bottle of apple juice and rub my head if I can't go back to sleep. You don't even get mad at me if I get up at 2AM and want to play.

I just want to say Thank You Ganny for taking care of me. I also want to say thank you to PaPa John because he loves me too and so does Uncle Casey and Uncle Korey and mom and dad and ggpa and ggma pugh and ggpa and ggpa Boatman.... When God sent me here on earth I was kind of worried but looks like God had it all planned out.

I know sometimes you all get tired and I just wear you out but just know that I love you and one day I will hold your hands while we clap, run, sing and dance and shout throughout eternity.

Love "Your other Half".
Matthew
If I Were A Butterfly
By: Brian Howard



If I were a butterfly, I'd thank you, Lord, for giving me wings;
And if I were a robin in a tree, I'd thank you Lord, that I could sing;
And if I were a fish in the sea, I'd wiggle my tail and I'd giggle
with glee;
But I just Thank You Father, for making me - ME!
Chorus
'Cause you gave me a heart and
You gave me a smile
You gave me Jesus, and
You made me His Child
And I just Thank You, Father
Foe making me - ME!

If I were an elephant, I'd thank you, Lord, by raising my trunk;
And if I were a kangaroo, I'd hop, hop, hop, right up to you;
And if I were an octopus, I'd thank you, Lord, for my good looks;
But I just Thank You, Father, for making me - ME!


Chorus
'Cause you gave me a heart and
You gave me a smile
You gave me Jesus, and
You made me His Child
And I just Thank You, Father
Foe making me - ME!
If I were a wiggly worm, I'd thank you, Lord, that I could squirm;
And if I were a crocodile, I'd thank you, Lord, for my big smile;
And if I were a fuzzy wuzzy bear, I'd thank you, Lord, for my
fuzzy, wuzzy hair;
But I just Thank You, Father, for making me - ME!

Chorus
'Cause you gave me a heart and
You gave me a smile
You gave me Jesus, and
You made me His Child
And I just Thank You, Father
Foe making me - ME!
Here's a few pics to show everyone what's been going on. Matthew has been a busy little boy. If I didn't mention it before, Our little angel that's not suppose to have "cognitive abilities" has once again proved the doctors wrong. Matthew knows how to nod his head "YES" when he is asked a question. Like if he want's to go bye bye or does he love Ganny.. It's "purposeful" and he only does it if you ask him specific questions. The whole time he is looking at us "to his right". He can see my head nodding "yes" and he imitates it! He's so SMART!

Matthew rides the Big Red Firetruck

Matthew's photo for Mother's Day project at Sunday School

Matthew's Great Grandpa Charles and Great Grandma Ruth 42nd Anniversary Party

Matthew and Great Grandma Boatman (This is Matthew's "surprise" look) lol

I was sent an angel the pasted to days to help me around the house and with Matthew. I have to pay her of course but she is worth it. I actually got to work in the yard and my WHOLE house is cleaned.. yes, my whole house. AND Yes that includes all of the laundry. I had forgotten what color the tile was in the laundry room floor, now I can see it!! It's White!
Love Charlotte
shhhhh! ganny is seeeping . I gots up to tell u wat been goin on. she been sick so cud not do it. she will b prized wen she get up! I no how to use da computa. I eben take my pic. see da pic? dat's me on the puta.

I gots ear inflection. but i is better. i had newmoania but i is better now. i can use my weggs now since they cut me and fixded my weggs.

I got frend name is J.J. he is a big baby. ganny babysit he.

I went to ega wake for 2 daze. we went fishin. I caut big old catfis but we not eat he yet.

I slide on slide board at pwaygrouwnd. it was fun.

I will try to go to sleep now but it hard cuz ganny just cof and cof. here is what my face wook wike when she cof and wake me up...


good nite everbody.
love mattboo
Thanks to a man I hardly knew that handed me a check for 1,000 while I was getting gas to go garage selling one Saturday morning.

THanks to a lady that I only met twice for putting a check for 100.00 in my van while we were swimming with Matthew at the pool.

THanks for the ANgel wish organization that worked very hard and raised over 30,000 to help us add a room , a whirlpool onto our house and also purchasing us a van.

Thanks to all my mom, dad and sisters for everything that they do to help us out financially.

Thanks to my church family for everything you do for us and especially for all the wonderful gifts Matthew received at his birthday party.

Thanks to my new friend that I only met recently at Matthew's b'day party that just gives and give to Matthew and she barely even knows us. My sister Melinda's friend. You know who you are! THanks!

Love Charlotte and Matthew
http://www.conservativealerts.com/terri-tj.htm

A plea for help from Terri's parents. I have copied and pasted the web page here on my blog but you can go to the website above if you want to. I just want to make sure this story get out EVERYWHERE. If you watched any of the court hearings you were probably "shocked" like I was. Terry is NOT brain dead. Yes she is severely brain damaged and she is NOT in a vegetative state. There is a big difference. She is somewhat like my Matthew BUT she has more mental abilities than Matthew. I hope that Euthanization of the Disable never becomes legal. I was horrified by some of the comments of the judge over this case. Terri's mom and dad want to take care of her as she is. Why can't they just leave them alone and let them enjoy what time they have left with their daughter. As for the X husband, I think he should be EUTHANISED for causing all this pain and torture for the parents. When Terri says she wouldn't want to be kept alive on machines, I'm sure she may have meant a breathing machine or heart machine... not a feeding tube. Their are normal, intelligent people that have problems that cause them to have to use a feeding tube. Matthew may one day require a feeding tube because it's getting harder and harder to get the proper nutrition down. What if I decide not to get a tube and let him die of malnutrition? I would probably be put in jail for murder. This shouldn't even be an issue considering Terri is not brain dead or in a vegetative state!
Please email or Call Texas Gov Jeb Bush and let him know how you feel about this. If you don't agree, then it's obvious you don't have a handicapped child and I don't want your comment. It's my blog.. lol



Dear friend of life,

By now you have probably heard about a young woman who is threatened with starvation in Florida.

That young woman is my daughter, Terri. In 1990, through circumstances which are shrouded in mystery (and may involve a criminal act by Terri's estranged husband), my daughter was left severely brain-damaged.

But before I go any further, I must put an end to the lies and misinformation that are circulating around the country through the media concerning my daughter's condition.

Contrary to anything you may have heard, Terri is NOT brain dead; Terri is NOT in a coma; she is NOT in a "persistent vegetative state;" nor is she on ANY life-support system.

Terri laughs, Terri cries, she moves, and she makes child-like attempts at speech with her mother and me. Sometimes she will say "Mom" or "Dad" or "yeah" when we ask her a question. When I kiss her hello or goodbye, she looks at me and "puckers up" her lips.

This may not seem like much to you, but it means everything to Terri's mother and me. It tells us she is still here, she still knows us, and with therapy and time she can have some level of recovery.

I know that there are some hard hearted people who believe that due to my daughters condition, she is better off dead. Words cannot describe the pain and anger such sentiments cause us. This is our daughter, our little girl, and even in her disabled condition, she still has the right to life and the right to be loved and cared for by her family.

Why, you may ask, is Terry in danger of death by starvation?

It is a long and outrageous story, but I'll give it to you as briefly as I can.

After the "incident" that left Terry in this condition, her husband Michael Schiavo sued various members of the medical community for money, saying that they did not treat or diagnose her properly at an early stage, and that he needed this money to provide for Terri's therapy and rehabilitation and care.

After lengthy court battles, he finally won upwards of $1.7 million under the guise of caring for our daughter, and then to our horror, he immediately began spending the money on himself and his Playboy lifestyle.

Terri's estranged husband Michael Schiavo has been living with another woman for years, and has two children by her. He is determined to see Terri dead. Why? We believe it's because he gets to keep whatever money is left... and he may have even darker motives than that.

To add insult to all of this injury toward my daughter, Michael Schiavo is still her "legal husband" and therefore is her "guardian." And since they are not legally divorced, he controls whatever health care she will and will not get. We are not even allowed to know if she is getting aspirin.

In 1993 my family initiated litigation against Michael Schiavo solely for the purpose of acquiring medical, physical and neurological assistance for our daughter Terri. The litigation escalated in 1998 when Michael Schiavo petitioned the court to stop Terri from receiving food and water, thereby starving her to death.

In filing this legal action, he retained the services of a high profile euthanasia attorney and the financial backing of powerful euthanasia organizations. He also used Terri's medical rehabilitation money to underwrite much of the legal expenses associated with his effort to starve our daughter to death.

We know that he has spent nearly $500,000 of Terri's money in attorney's fees for just one attorney trying to obtain a court order to have Terri starved to death. The very money that was supposed to be used for Terri's rehabilitation is being used to have her killed.

We very quickly discovered it was impossible for us to compete with the abundance of financial and legal resources the pro-death organizations were providing Micheal Schiavo in their effort to kill Terri. They are pouring time and effort into her starvation because they want to use this case to further the agenda of legalized euthanasia.

My wife and I are not wealthy people. Throughout those years, we did not have any large organizations trying to help rescue our daughter. Consequently, we had to rely on the generosity of attorneys who were willing to offer their legal expertise at no cost or at reduced fees.

The bottom line is that we are in the final weeks or months of our struggle to rescue our daughter from an untimely death by starvation. Death by starvation is very slow, and extremely painful. As you must know, it is against the law to deliberately starve an animal to death. There are members of the Florida court who would not treat a dog the way they plan to treat my daughter.

At this point we must pull out all the stops in our fight to rescue our daughter.

As parents, we are desperate to save our daughter's life. As people who love life, we are determined to deprive the euthanasia advocates of successfully legalizing this form of homicide. We believe that their efforts to kill Terri are designed to set a precedent for the future eradication of defenseless disabled human beings. I was alive when Americans fought the Nazis; I do not want my daughter to meet the same fate of thousands of disabled people in Nazi Germany, and I do not want our country to go down that same dark path.

Friend, though we have never met, I'm asking you for your help. We desperately need your financial assistance to help our family continue the battle to keep our daughter from being starved to death. There are so many expenses in a case like this it is mind-boggling and overwhelming. Please click here to make a contribution now.

Our adversaries believe that by our family's financial attrition and difficulties, they will attain their objective of killing our daughter. Presently, Terri's starvation may only be a few weeks away, unless we find the financial resources to prevent this atrocity from becoming a reality.

I implore you to please help us. We are writing to you, because we believe you have a heart for justice and mercy. I'm asking you to put yourself in my shoes, and then do whatever you can to help our family. Whether it is $10 or $1000, we are desperate for the resources to fight this battle for our daughter's life at this critical juncture.

Please do whatever you can, and forward this e-mail to any friends or family that you have who you think might be interested in saving Terri's life.

I thank you for your time, your concern, and I solicit your prayers for Terri and our entire family. These have been very trying times for us all.

Sincerely,

Bob Schindler Sr.

CLICK HERE TO CONTRIBUTE NOW!



--------------------------------------------------------------------------------

Appeal to FLA Gov. Jeb Bush
Terri needs you to do two things to help save her life:

Today -- contact the governor and the leaders of the legislature and politely insist that they write a new law to save Terri's life. We need this to happen today, and we ask you to recruit your friends to do the same. And remember, phone calls are better than emails.

Jeb Bush, Governor
Executive Office of the Governor
The Capitol
Tallahassee, FL 32399-0001
(850) 488-4441
Fax (850) 487-0801
jeb@myflorida.com

Tom Lee, Senate President
Capitol Office:
Room 312, Senate Office Building
404 South Monroe Street
Tallahassee, FL 32399-1100
(850) 487-5072
lee.tom.web@flsenate.gov

District Office:
915 Oakfield Drive
Suite E
Brandon, FL 33511
(813) 744-8683
FAX (813) 744-8556

Allan G. Bense, Speaker
Capitol Office:
402 South Monroe Street
Tallahassee, FL 32399-1300
Phone: (850) 488-1450
speaker@myfloridahouse.gov

District Office:
Suite A
455 Harrison Avenue
Panama City, FL 32401-2443
Phone: (850) 914-6300

If you hear that the court has ordered Terri to be starved-- if at all possible, come to Pinellas Park (Near St. Petersburg) where Terri is being held, or to Tallahassee Florida (where Governor Bush and the Legislature are) to take part in peaceful vigils and protests.

We will have around the clock vigils in both locations: at the one where Terri is to show our support for her and her family; in Tallahassee to call on the Governor and the Legislature to intervene and save her from Judicial homicide by starvation.

Sponsored by: Society for Truth and Justice



--------------------------------------------------------------------------------

Dear Friend of Life,

What follows is a battle plan to save my daughter from starvation.

I beg you to read this closely. The details are a matter of life and death for my daughter...

As you may have seen in the news, my daughter Terry Schindler-Schiavo is in imminent danger of being starved to death by a court order. (Terri is not brain dead, nor in a coma, nor on any life support system; she is simply severely handicapped. She laughs and cries and tries to talk with us.) Unfortunately, Terri was in danger of being starved to death in October of 2003. Food and water were withheld from my daughter for six days before the Florida legislature and the Governor intervened to save her life.

What you may not know is that at that moment of crisis, our family asked Randall Terry to help us put Terri's plight in front of the American people. Randall Terry organized vigils and protests here in Florida, he coordinated the media, and he helped us meet with Governor Jeb Bush. Many other groups and individuals joined in the effort. All of this gave us the momentum we needed to pass Terri's Law, which saved Terri from death. My daughter is alive today because of Randall Terry's leadership, and the determined efforts of many good groups and people.

Unfortunately, the Supreme Court of Florida struck down "Terri's law," and my daughter is in danger once again of being starved to death.

Therefore, our family has again asked Randall Terry and his staff to coordinate the efforts to rescue Terri from court ordered starvation. We are asking you to read Randall's letter closely, and to follow his lead by cooperating with the efforts we have asked him to undertake. We believe that the strategy outlined below by Randall gives us a real chance to rescue our daughter once and for all. We thank you for your love and concern for our daughter, and our family continues to solicit your prayers. PLEASE, read every word of Randall's letter below, which outlines this important battle plan.

Bob Schindler Sr., Father of Terri Schiavo

=========================================

From: Randall Terry

Hello friends, Randall Terry here.

First of all, I want to thank Bob for his kind words and his confidence. Second of all, I want to make very clear (as Bob said) that many dedicated and courageous individuals and groups participated in saving Terri the first time, and we could not have been successful if it was not for the fact that so many people worked together to save Terri from starvation in that hour of crisis. And once again, many fine and dedicated groups and individuals are forming a coalition to rescue Terri from this horrific fate. If you have seen this fight in the news or on the Internet over the past few days, it is as a result of our renewed efforts, strategies and coalitions.

Friend, anyone who follows the news knows that the battle for America's soul has been raging for over two generations. Many of you have been fighting on various fronts to stop this onslaught of evil and darkness. In each of our communities, and all of our states, we face a continual barrage from the advocates of immorality and a culture of death. The advocates of evil have hijacked the judiciary in order to achieve their agenda.

But every once in awhile, a battle emerges that redefines all subsequent battles for years to come. Some recent examples of this are the decisions by courts to remove the 10 Commandments from the schools of Kentucky, and from the Supreme Court of Alabama. Another is the decision by courts to strike "under God" from the pledge of allegiance. Still another is the court ordered mandate to create homosexual marriage or civil unions in the states of Vermont and Massachusetts. Those key battles determine a subsequent series of battles that none of us can escape, and that threaten to drag on for many years.

The threat of starvation for Terri Schindler-Schiavo is another one of those epic battles. If she is in fact starved to death, it could open a floodgate of starvations and other forms of cruelty towards the severely disabled and severely handicapped in America.

This case clearly puts one woman's life in jeopardy; but beyond that, it puts thousands of lives in jeopardy. And even beyond that, I believe this is a battle in which our nation's soul is again weighed in the balance. Will we be a people who continue to kill our weakest and most defenseless members? Or will we return to what it means to be "civilized" and ensure that the strong protect the weak from the ruthless? Will we follow our Lord's admonition to "love our neighbors as ourselves," or will we look the other way while our defenseless neighbor is killed?

You have received this letter because you are someone who cares about what happens in these great and epic struggles. Because you love life and liberty, the family and I are calling on you to take direct and concrete actions on Terri's behalf.

Please understand, Terri's family is happy for the sympathy of tens of millions of Americans. But sympathy alone will not save Terri from starvation! We must fight, we must struggle, we must sacrifice for Terri's right to live, or she will perish. We are at war for the life of this woman and the soul of this nation, and war requires troops who will act in concert to push back the enemy.

I'm about to give you a list of action items that every single person reading this letter can do.

Allow me to be very direct with all of us: if we believe Terri should not be killed by starvation, then we have a duty before God to do something on her behalf. That is what it means to love your neighbor as you love yourself - you take action on their behalf, just as you would want someone to act on your behalf if you were about to be killed. If we do not act in some concrete way, what good is our sympathy for Terri and her family?

If we will all act in concert with each other, we can create a tidal wave of momentum and public outrage that result in saving her life. We can create an avalanche of support for Governor Bush and the Florida Legislature that stimulates and emboldens them to stand against the judicial tyranny that threatens Terri's life.

I am convinced that most of the country is disgusted with arrogant Judges ramming their godless agenda down our throats; I have seen the anger of good and decent Americans who are fed up with Courts acting like dictators and tyrants. This is one battle in which all of us can stand against judicial tyrants. We can set an example that ignites a wave of resistance to other acts of judicial tyranny.

I am equally convinced that Governor Bush wants to save Terri's life. In fact, Governor Bush publicly responded to my call for him to intervene last week. He responded by telling the press, "I'll do what the law will allow me to do. Nothing has changed. If Mr. Terry has any suggestions on things I can do, we will certainly review them." The family and I met with him once before, and we plan to meet with him again this week. He is a good man, and we ask you to pray for him to have the strength and the courage to rescue Terri.

Moreover, Terri and her family have many friends in the Florida legislature. We must provide them with the support and the "political cover" they will need to take up this issue again. I believe they will have the courage to intervene as long as they know millions of Americans and especially Floridians are supporting them.

In the big picture, this battle could be a key turning point in ending the rule of judicial dictators in our country. If we as citizens will denounce this oppression, and Governor Bush and the Florida legislature will again stand against these judicial tyrants, it could be a key moment in our history as a nation. We could look back and see that this was a key battle in restoring the rule of law and the right of self-government in America; that it was a team battle in breaking the stranglehold that the courts have on our lives, our laws, and our liberties. May God make it so.

Now, here is the immediate battle plan. There's something here for every single person to do. I know you love life and liberty; so the family and I are counting on you to fight on Terri's behalf.

Click http://www.rightmarch.com/media/FlyerforTerri.pdf to download a PDF of a bulletin/flyer printed twice on an 8 1/2 piece of paper. It has a brief history of Terri story, as well as the phone number and the e-mail for Governor Bush, the Speaker of the Florida House, and the President of the Florida Senate. We did this so that you could use your home printer or go to a copy shop and make copies to put in your church bulletin, or hand out at church, or to give to your friends at work. As you will see, you can cut it in half after copying, and it will fit inside most church bulletins. (If the clergy won't help, maybe you could put it on cars in the parking lot.) This flyer will help increase the waves of outrage we need to come from around the nation.

Click http://www.rightmarch.com/terri2.htm to contact the Governor, the Speaker of the Florida House, and the President of the Florida Senate, and politely urge them to intervene and save Terri's life. Urge them to stand against judicial tyranny. They know that the judiciary is being used to destroy life and liberty in America. They need to know they can be heroes in our fight to restore self-government and the rule of Law.

If you are a Florida resident, click http://www.rightmarch.com/terri2-fl.htm to directly contact your state senator and your state representative. You can then urge them as a Florida voter to act on Terri's behalf.

Stay updated by going regularly to http://www.helpterri.com/ . Send out an email to all your friends with a link to that site, urging them to get involved. Hotel info is there.

If you hear that Terri's feeding has been ordered to be stopped, if at all possible come to Florida immediately. We will need people in Pinellas Park (near Tampa) where Terri is, and we'll need people to go to Tallahassee to plead with the Governor and the Legislature to rescue her. We will have 24 hour vigils until we rescue her, or she departs this life.
For hotels near Terri: http://www.societyfortruthandjustice.com/hotels_near_terri's_hospice.htm

For hotels near the Legislature: http://www.societyfortruthandjustice.com/hotels_near_legislature.htm


I am asking everyone to help the Terri Schindler-Schiavo Foundation with the best gift you can give for this battle. Virtually every person reading this can give $5 or $10 dollars. Many can give $50 or $100. Some can give $500 or $1000 or more. An effort like this takes extensive resources, and they need much help. Every gift matters at this time! The family thanks you with all their hearts. (Gifts are not tax-deductible.) Please give ASAP; the need is urgent now, and time is critical:
https://secure.cartlight.com/merchant/terri/?afid=tj

The family and I and others are going to Tallahassee this week to meet with elected officials. We must continue to build the momentum for this effort; we must have a deafening chorus resounding from around the country on Terri's behalf.
Please be a part of this battle and the subsequent victory. Please do every single one of the things that you possibly can do, ASAP. Print the bulletin, make the contacts, come to Florida if at all possible, and give whatever you can financially to this fight today. This is one of those epic battles that I spoke of earlier, and none of us should be in the bleachers watching. We should all be in the arena fighting.

Please forward this letter to every friend who you think may want to save Terri's life.

May God help us in our quest; may God have mercy on Terri and her family; and may God have mercy on our nation.

Sincerely,



Randall Terry,
President
The Society for Truth and Justice

CLICK HERE TO CONTRIBUTE NOW!

To submit a donation by check, please send to the following address:

The Terri Schindler-Schiavo Foundation
3501-B N. Ponce de Leon Blvd.
Suite 394
Dept. Code tj
St. Augustine, FL 32084
Please click on the Link above to hear a great, new song for our soldiers sang
by Dustin Evans
www.andiesisle.com/If-I-Die-Before-You-Wake.html

Thank YOU Lord for letting us have our little man for one more year!!!!!!

Here are some pictures from his BIG party, with His own Band. He had a blast and it was like he knew the party was just for him. We danced and he laughed and giggled. He missed getting all of his medicine because he was too excited to take it. Even after we got home he was still wide eyed and raring to go. A nice warm bath and more medicine slowed him down. He slept until 8:00 AM! I didn't know it but my sisters gave me a "special" surprise for my 40th that is NEXT WEEK. Matthew lit up the whole room whenever we started dancing. We had the floor all to ourself! I know everyone got a blessing just watching him cut up on the dance floor! It was a night we will never forget watching him laugh and giggle so sweet!


He's laughing in this pic so hard he's having a good time. The band was playing I'll fly away. His great grandma and Pawpaw have a gospel band with banjo's, harmonica, aucoustic guitar and we even had a piano player!

Still Dancing
Ganny is tired!
Papa danced too!
Lots of friends and family at the party. They brought lots of baby food and any kind of other food that Matthew can eat, Boost, Diapers, Wipes, toys, clothes, bed sheets, money and lots of other nice things. It took me an hour to put the all the food into the cabinets! They even brought finger foods to go along with the cake and Ice cream.
Hey IM NOT 40 YET! My sisters came up with
this idea. My birthday isn't until the 24th! I surely didn't want to celebrate early but it was okay. I think I'll be okay about turning fourty. I bought some more night cream for the wrinkles today.

I'll have more pictures to post later. This is all I can get on the page today.
What would Matthew like to do today? You want to play Ring around the Rosies? Ok, now get ready....





img src="http://img.photobucket.com/albums/v248/angelbaby39180/mattgann6.jpg">

OK, Im ready Ganny....Im ready now! Go Ganny!

Ring around the Rosies, A Pocket full of Posies.............

Is it time to fall down yet? I am ready ganny!!!!! No not yet Matthew!

Now? Can I fall down now??? Almost Matthew!!

ASHES ASHES WE ALL FALL DOWN!!!!!


And there he goes.....................

Matthew knows a few words but his most favorite is "Faaaaaaaaaallllllllll downnnnnnnnn". That's when he will throw himself back. Sometimes he gets excited and tries to "fall down" before it's time. When we say "Fall Down" we say it with a musical tone to it, you don't even have to play the game, you can just say fall down and he's throwing himself backwards. Pretty good for a little guy that's not even suppose to have cognitive abilities!
Charlotte
this is an audio post - click to play
A Song Dedicated to my Little Angel Matthew... Click on Audio above to hear the songs.

JOSH GROBAN LYRICS

"You're Still You"

Through the darkness
I can see your light
And you will always shine
And I can feel your heart in mine
Your face I've memorized
I idolize just you

I look up to
Everything you are
In my eyes you do no wrong
I've loved you for so long
And after all is said and done
You're still you
After all
You're still you

You look through me
I can feel your pain
Time changes everything
One truth always stays the same
You're still you
After all
You're still you

I look up to
Everything you are
In my eyes you do no wrong
And I believe in you
Although you never asked me to
I will remember you
And what life put you through

And in this cruel and lonely world
I found one love
You're still you
After all
You're still you






Matthew's has been getting better and better after his surgery. His is now pushing a little in his walker and using his legs more. His hips are still sore where the plates are. The thing that's bothering him now is the tonic siezures. These are like the myoclonic jerks but with a new twist at the end of the jerks. Here's my description of his siezure.

Matthew will suddenly jerk and thrust both arms straight out and legs straight out and bend over at the waist and drop his head. He'll be very stiff and he'll hold it for about 5-10 seconds. When he finally relaxes, he is very, very, limp. Then his eyes will look glassy and he'll have anywhere from 2-4 quick jolts, like a "shock".
After that he smacks his lips like something is in his mouth. Sometimes instead of the seizures, he'll have the "shivers". Most of the time these happen whenever he wakes up but lately they have been happening during the day. He had three today.

Our neurologist has him on phenylbarbitol, Keppra, Lamictal, Kolonopin. The first med was Phenylbarb for the myoclonics that never fully went away. At age two, he went in for the same jerks that were getting worse and was put on topomax. He had a "big" siezure like the ones he's having now but a lot worse. Next time he was still having the jerks but they had slowed down again. I video taped so we didn't have to go into the hospital this time, same siezures just getting worse, we weaned the topomax and added lamictal, the lamictal did absolutely nothing except cause him to be more miserable and tired. Next we added Keppra the seemed to slow them down again. I waiting for the neuro to get him off of the Lamictal. I don't like the side effects. ON the internet it says do not use with Phenylbarbitol and it also slows the production of red blood cells. They carry oxygen to the brain. We have increased the lamictal since he started having the bad seizures again. So far no change, just getting worse. After reading what I just typed, I see a steady incline in his seizure activity. A little worse every year. Our neuro just says, well, I told you that is to be expected as he gets olders considering all of his brain malformations. I know that but all this junk he's on isn't working, why can't I get him off of some of the siezure meds? If he doesn't do it soon, I will be going to another neurologist... As a matter of fact, I think I'll call tomorrow.

Matthew is getting weaker and weaker. He doesn't want to hold his head up long enough to stand in his stander. All he wants is for me to hold him

Some people say their is no proof that siezures cause more brain damage but I can see Matthew regressing with my own eyes.

He will be three in a few weeks and I hope and pray we don't end up in the hospital with a grand mal seizure.

I know Matthew has a lot wrong with him but I just want him to at least play like he used to and be "content" for a little while in his stander or walker or swing. He acts like he's miserable and I don't like it that way. He has enough wrong with him without those nasty siezures. I am looking into other options and most like I'll have to take it upon myself to get him off those meds and "start over". Makes no sense to KNOCK HIM OUT all the time.. what kind of life is that. I won't settle for what's going on now because I know there's got to be more we can do to defeat these seizures!!!!!
So SIEZURES GO AWAY!!!!!!!!!!!!!!!!!!!!!!!!!!
After doing even more research I found the following at Journal of Neurology Neurosurgery and Psychiatry. A detailed look at Matthew's diagnosis. In short, we just call is a CONGENITAL ABNORMALITY OF THE CENTRAL NERVOUS SYSTEM OR CNSD.

All this means is when Matthew's brain was developing, something happened that caused the neuronal migration to go haywire. If they don't fully finish migrating, it result in cell death or malformation. Matthew's brain quit developing before it should have. Even his soft spot (Fontenal) closed early.. His brain though it was finished developing. .. We didn't even notice he barely had a soft spot after birth. The only thing that lead to and MRI was because his head measured smaller than that of a normal baby boy.. then we notice the soft spot was almost closed.

Induction—After development of the three cell layers of the early embryo (ectoderm, mesoderm, and endoderm), the underlying mesoderm (the "inducer") sends signals to a region of the ectoderm (the "induced tissue"), instructing it to develop into neural tissue.
Neural tube formation—The neural ectoderm folds to form a tube, which runs for most of the length of the embryo.
Regionalisation and specification—Specification of different regions and individual cells within the neural tube occurs in both the rostral/caudal and dorsal/ventral axis. The three basic regions of the CNS (forebrain, midbrain, and hindbrain) develop at the rostral end of the tube, with the spinal cord more caudally. Within the developing spinal cord specification of the different populations of neural precursors (neural crest, sensory neurones, interneurones, glial cells, and motor neurones) is observed in progressively more ventral locations. This process results from the interaction between genes whose expression defines individual territories or cell types, and diffusible signalling molecules (such as sonic hedgehog) secreted by adjacent areas of the embryo.
Proliferation and migration—The most dorsal cells of the tube (the neural crest) migrate away to form much of the peripheral nervous system. Cell proliferation within the tube leads to thickening of the wall and many different cell types move to their correct locations. The development of the forebrain cortex provides a good example. An area called the germinal matrix adjacent to the lumen of the neural tube (the future ventricular system) contains neural stem cells that are precursors of the neurones and of the two glial cell types, oligodendrocytes and astrocytes. Neuronal precursor cells migrate, often along specialised cells called radial glial cells, to their final and particular locations in one of the six layers of the cerebral cortex.
Connection and selection—Once each cell is specified according to type and is in an appropriate location, axon outgrowth and synapse formation occurs. The mechanisms that control these connections are complex and incompletely understood. Cells failing to establish the correct connections undergo programmed cell death (apoptosis) as a result of a failure to obtain survival factors produced by the target cells.

Disorders of proliferation and differentiationMicrocephalyThis is an abnormally small head circumference (< 0.4th centile on occipito-frontal head circumference charts), which is disproportionately small in relation to the rest of the body. The usual implication of this finding is that brain growth is not normal. However, if a small head circumference is detected in the neonatal period it is prudent to perform an x ray of the skull to look for evidence of early closure of all the cranial sutures (total craniosynostosis)

Disorders of migrationMigrating neurones may fail to reach their intended destination in the cerebral cortex. The abnormalities may be focal or diffuse. If neurones fail to leave the ventricular zone, periventricular heterotopias result. If they fail to complete their migration in the cortex this causes lissencephaly. If only a subpopulation of neurones are affected and others complete migration this causes nodular or band heterotopias.
Agyria-pachygyria (lissencephaly)There may be complete absence of gyri, in which case the terms agyria or lissencephaly (Greek: "smooth brain") are used. Pachygyria describes a reduced number of broadened and flat gyri with less folding of the cortex than normal. There may be varying degrees of agyria/pachygyria in the same brain.

Type I lissencephalyHere the brain is small with only the primary and sometimes a few secondary gyri. The cortex is thick with the white matter forming a thin rim along the ventricles. Infants with type I lissencephaly may be divided into two groups. The minority have the dysmorphic features of the Miller-Dieker syndrome associated with deletions of 17p13.3, a region which includes the LIS1 gene. The majority have the isolated lissencephaly sequence (ILS) and have no dysmorphic features. This is a heterogeneous group. More than 40% have a deletion of, or mutations within, the LIS1 gene. Mutations in a second gene on the X chromosome, doublecortin (DCX), have also been shown to cause lissencephaly.


HeterotopiasPeriventricular heterotopias are abnormal collections of neurones in the subependymal region. They may be part of a complex malformation syndrome or they may be isolated. They may be clinically silent or associated with seizures and developmental problems. Subcortical heterotopias can be divided into two groups. Nodular heterotopias of grey matter are found in association with other migration disorders and may be the cause of partial seizures. Subcortical laminar heterotopias are also known as band heterotopias or "double cortex".
Polymicrogyria (microgyria)This developmental disturbance may occur after the fifth month of pregnancy. The causes are poorly understood but may be genetic, infective or hypoxic (perhaps associated with poor cerebral perfusion). The clinical manifestations depend on the location and extent of the abnormalities. There is a bilateral perisylvian syndrome (or anterior operculum syndrome) in which bilateral opercular abnormalities are seen on magnetic resonance imaging, some of which have the appearance of polymicrogyria (fig 3). These patients have a pseudobulbar palsy with dysarthria, loss of voluntary control of the face and tongue leading to drooling and difficulty feeding. Familial occurrence has been reported.

PorencephalyThe term porencephaly is often used for any cavity in a cerebral hemisphere that commnunicates with a lateral hemisphere. However, it should probably be used only for circumscribed hemispheric necrosis that occurs in utero before the adult features of the hemisphere are fully developed. The relatively early development of these lesions is shown by their smooth walls and by associated developmental disturbances in the adjoining cortex such as polymicrogyria or distortion of the gyral pattern. This is relevant because unilateral or bilateral porencephalic cysts are found in children diagnosed as having cerebral palsy and there is often debate about the timing of the insult. Neuropathological texts debate whether or not there is a distinction between porencephaly and schizencephaly, and some cortical abnormalities do not fit neatly into any group (fig 4).
SchizencephalyThis term is used by radiologists to describe clefts which traverse the full thickness of the hemisphere, connecting the ventricle to the subarachnoid space. They are described as type I or "fused-lip" when the walls of the cleft are opposed, and type II or "open-lip" when cerebrospinal fluid separates the walls. Some of them are genetic—familial cases have been described and some sporadic cases are associated with mutations in the homeobox gene EMX2. The clefts are frequently bilateral and even when unilateral they are often combined with cortical dysplasia of the opposite hemisphere.
Epilepsy is common and sometimes the only problem is isolated partial seizures. There may be hemiplegia, quadriplegia, and learning difficulties of variable degree. If there is bilateral involvement of both opercular regions there may be facial apraxia and speech difficulties.


This is only the brain malformations part of his diagnosis. These malformations have caused him to be blind (Septo Optic Dysplasia). He cannot rollover, crawl or walk or talk. He is able to move all extremeities and CAN walk somewhat in a walker. He is able to bear weight on his feet and can kick both legs like a pro when it comes to swimming in the pool. He froggy kicks too. He recognizes some words by the way I say them. Kind of with a musical tone to it. He recognizes when we are on the road to our house by responding with a smile as soon as we turn down the gravel road to our house. He can "fall down" as in ring a round the rosies when he hears me say "We all fall down". He has "some" vision to his peripheral right and uses it a lot. We are not sure what he's seeing though. When he looks at you , he looks right into your soul. I know what he wants by his facial expressions and the sounds he makes. He has an angelic personality and has a contagious laugh and giggle and loves for you to dance with him. Holding him and dancing is like holding a soft fluffy warm teddy bear and the love just ooooooozzzzezzzzz all over the place.

It's hard to believe he is able to do all those things but no so hard to believe because he is constantly being prayed for. Keeping him active helps and watching his diet. He's only had pneumonia twice in almost three years.

Our little Odyssey will be three years old on February 18th, another miracle in itself.

So no matter how grim the prognosis, no matter what the most educated doctor says, there is always a chance. Our baby may not ever get any better and he'll probably always be our baby but that's okay with us because that's just part of the plan that we have accepted, even though there were lots of questions in the beginning.

Good Night.
Charlotte



Okay,
I had started some posting on this crazy journal and when I tried to update it, I lost everything. I must have hit the wrong button or something! Here I go again.
Here are some "before Pic". I'll be posting some "After Pics" when Matthew is able to stand without the immobilizers in about four weeks.



Dec. 5th Sunday
Got there a day early for preparations. They took list of medications. Matthew was happy and playing. Matthew's roomate was a little boy from Panama with some kind of joint desease. WE also met a sixteen year old girl that fell in love with Matthew. Her name was Michelle. She wanted to help with Matthew when we fed him. She begged to hold him even though she was recovery from surgery herself. SHe had lots of healing scars on her legs and some type of screw on the outside of her knee that I think is turned every day. SHe has a type of CP and is very smart. I let her hold Matthew on her side while I held on to him. She met us at lunch and held Matthew's bottle for him. She said while feeding him that helping a child like Matthew was the most rewarding experience she could ever have and that's what she wanted to do when she could. It was hard to hear her say that while looking at her in the wheel chair with all of the scars and screws on her legs. Even her hands were tight fisted and crippled. I asked her if she wanted to go home with me but she said she couldnt. lol



He doesn't have a clue what is going to happen to him. I tell him but of course he doesn't understand. I just know he's going to wonder what in the world is going on!
A Double Rainbow, Just for Me!
I have been praying since the first time they said Matthew needed surgery. I was really nervous because you never know what will happen to a baby like Matthew when they put him too sleep. His brain is so malformed, anything could go wrong. I was so scared, I prayed for some comfort and assurance knowing things would be okay but All I could see what how hard it's going to be for Matthew and us too.. Well, I knew for a fact when God sent not just one Rainbow but TWO that everything will be just fine! While we were in Shreveport the evening before surgery. Here's the double rainbow God sent to us the evening before surgery while we were
out riding around in downtown shreveport looking for a Walmart.:
You can see the second rainbow at the top of the pic on the left. It didn't come out
very clear on this pic was It was very visible that day.

What Have I done to our baby? THat's exactly what the doctor said I would say. We didn't get to see him but just a few minutes after surgery.


The 7AM to 3PM nurse Amanda.
No touching or stimultation. Just stand there and smile. Matthew's lives off of touching and stimulation. It was hard enough to see him that way without not being able to get a kiss or stroke his head.
I did notice he "had hips" now. He looked like a different boy from the waist down.

The 3PM to 11PM Nurse was nice. When we went to visit Matthew, she said, Hey, Ya'll come on in. We just stood there around his bed real quiet because the other nurse told us that's what we had to do. THis nurse said we could touch and stimulate. Go Figure. lol
Dec. 7
He was out of ICU and the nurse showed me how to put him in his chair.


He was still in pain with a lot of muscle spasms. HE was given valium for the spasms and Morphine for the pain. He was constantly moaning. I was doing everything I could think of to soothe his pain but I guess there was nothing I could do and was reminded of it by mom and the nurse. I just knew it had to be something. I had help putting him in the chair for the first time and we walked around the hospital. He was still high on the morphine and not really awake but moaning a lot.

Time to stretch. He raised his arm up to put his hand in his mouth but missed and fell back asleep like this!


Santa and his elf come to visit!


Later that evening he started moaning and having spasms again. I did everthing I thought of to help but nothing worked. Finally I decided to pic him up and put him in his chair. Guess What. He immediately stopped crying. I started to put him in the chair but decided to hold him and walk. All this time he wanted Ganny to hold him and I thought It wouldn't help and it was very awkward picking him up without hurting him, but I did it!


Dec. 8 . Matthew still had fever and was having bad muscle spasms. THey tried to tell us we could go home but we refused. It was storming outside and we would have a three hour drive home. I really didn't think he was ready to go anyway and we learned from our last experience not to take Matthew home from the hospital if he was having fever!!!

Dec. 9 Was discharged around 11:00 Matthew had no fever and the weather had cleared up. Was a peaceful ride home because he slept most of the way.

Dec. 10
Matthew was suppose to get in stander but there was NO WAY. Poor baby needed an extra day on everything the doctors said he needed. He only took a thirty minute nap and woke up every hour wanting to be repositioned. He ended up in the bed with John and I. Pawpaw messaged one foot and I messaged the other and he finally went to sleep. That was around three AM when he went to sleep and then he woke up at five AM!
Pawpaw is the best pawpaw in the world. Matthew is the world to him. Even though he has to get up early to go to work, pawpaw has never complained when I need him to help with Matthew during the night or early in the Morning. He's really a wonderful husband and pawpaw considering he has no biological children and my children are his step children and Matthew is his step grandson, but he doesn't look at it that way, he see's them as if they were his own flesh and blood. When he gets home from work, he feeds his animals and comes in to help. Lately he's been cooking supper, then he helps with Matthew to give me a break. He sits in a chair beside Matthew bed to pat him on the back incase he wakes up until we get ready to go to bed. (While he's watching TV). Now that's a real daddy and pawpaw.

Dec. 12 Sunday
Got to take of outter sterile bandages and get into the whirlpool. He has about a four inch insicision on both outher thights, about a two inch behind knees and about a one inch on both abductor tendons. Looks like they are healing well. they are covered with sterile tape stitches with regular stitches inside.
we got in the whirlpool, and that was the beginning of a much happier baby!

Dec. 13 Monday
He gets in Stander. NOt as bad as I thought. We had done our therapy that we were told to do. He seems pretty happy so we put him in the stander. Believe it or not, he is much happier in the stander now than he was before! He didn't even make a fuss or cry. Before surgery, I couldn't put him in hardly anything like his stander or walker for more than 15 minutes before he was fussing. Now I know for sure he was in pain.


He has great head control but his neck was really weak from laying around all this time. We had to watch him so he didn't bag his head down on the stander tray.


Today is Thursday. Matthew is getting two whirlpool baths a day. He tolerates the leg stretches and is in the stander twice a day for thirty minutes each. He had one episode where he screamed because he has a muscle spasm. He wants to sit up now and is getting back to his normal little spoiled self. He's off the Loritab and on regular tylenol.


Dec. 23
It's been a little over two weeks since Matthew's surgery. He had a rough week last week. By that I mean he woke up every hour to an hour and a half for the first 5 days of the second week home. Finally last night he slept a full five hours straight without waking up.

He has the knee emobilizers off but has to use them when he is in the stander. He has to sleep with the abduction pillow at night.

His wounds are healing wonderfully. I was told to leave the sterile strips on and let them fall off by themselves and they are starting to fall off and the healing looks good.

His blisters on his heals are healing up too. THe blisters were caused by the immobilizers they put on him immediately after surgery. THey were too long and his heals rubbed against a metal piece that is inside the splint. One heel wasn't that bad but the other was horrible. Always make sure the immobilizers are above the heals when putting them back on. THis could have been avoided.

He's letting us hold him on our hip but we still have to be careful and not lay him down too quickly because his hips are still sore.

He will bear weight on his legs but not for long. He is getting better and better every day. I can't believe how good he's doing. I notice today that his pants and jeans fit better because he has hips to hold them up. I say his hips are still swollen but that may be how big they actually are. lol Big hips run in the family. Just kidding but that's what I tell his mom.

He is laying on his stomach a lot which is a big change for him. He has never liked laying on his stomach. Now he acts like he enjoys it.

He's not arching and pushing back. He's easy to hold and cuddly, more than before.

I had a cold last week that started off with uncontrollable sneezing. Now guess who's got it? Yes, he was almost asleep at nap time and started sneezing about 7 times in a row. He thought It was funny so he didn't go back to sleep.

He has not been taking naps like he used to during the day time which is hard on Ganny but he does go to bed around 6pm and that's when I get all "MY" stuff done.

Well, I gotta go. Lots of cooking to do. I'll be posting "AFTER" pics in a few days.

AFTER PICS DEC 31 2004



this is an audio post - click to play
this is an audio post - click to play


Here's another poem I wrote. Inspired by Matthew during those long sleepless nights. I had just gotten Matthew to sleep about four oclock that morning and I laid down to catch some sleep myself when these words came to me. I tried to sleep but couldn't until I got up and wrote the words down. Didn't realize how beautiful the poem was until the next morning.

The poem is followed by a song called "Angels Among Us" by Alabama. I heard this song on my radio about two days after Matthew was born. I still couldn't understand why this could happen to our grandbaby. I realized that God didn't send us a tragedy or a burden. He sent us one of his very own angels. Not just out of the blue but he sent Matthew just when he thought we would need an angel most.

Matthew has been more than a blessing or a burden. He has been a "little Preacher" spreading his love and the love of God to everyone he meets without even having to say one word.

We have the radio station play this song every time Matthew has a birthday. No matter how many times I hear it, it always makes me cry and give me assurance that everything will be okay because I have an Angel to help me.

Love Ganny