Mystery Diagnosis, Here We Come!!!

(Update on our Genetics Appointment)

So, let me say, that our Geneticist was wonderful. We took a typed detailed account of each child's and my medical history with us, plus medical files, to the appointment. She was very impressed (shocked) with our preparedness. She asked us an amazing amount of questions and made a graph.She then informed us that she was positive that the children and I are suffering from a metabloic disorder.

She feels that we suffer from a Fatty Acid Oxidation Disorder. She wants us to get testing to find out which one we have. She is sending a letter to the children's Pediatrician and my primary that we need testing to be done at our local University Hospital, she works there also. She is marking the letters urgent because of my deterioration, she is afraid that my heart might give out.

I thought Shriners paid for the testing, but found out that they only pay for the Geneticist visits. Once we are referred for genteic testing to the University hospital, the hospital will pick up the cost not covered by the insurance. So now I wait a week and then call our doctors to see if they sent the referrals. If they haven't, she is going to call them and put a fire under their bottoms.

She said, that at this point, she is more worried for me, than the children. Don't get me wrong, she is worried for them, but they still have time to recieve treatment and the fatty deposits have not made too much damage yet. She said that since I was not diagnosed as a child (even though I had the symptoms) and started on the treatment, that there is more fatty infultration in my organs, and if it isn't treated soon I could die.

Ryan and I, are happy that we finally found someone who is putting all the clues together, but are terrified on the outcomes of the testing. She also feels that I do not have MS. She said fatty infultration in the brain can look like lesions in MS and the neurological MS symptoms can be caused by the infultration. I told her about the fact that I did not have any ogllical bands in my spinal fluid and yet I was diagnosed with MS due to the other tests, an exacerbation, and my symptoms. She was shocked that the neuro never sent me for metabolic/genetic testing. She feels my exacerbations, were Metabolic crisises.

She will be testing Matthew and I first, when she gets the results she will start testing Jessica and Hunter. Ryan asked her, what can she do once we are diagnosed? She said the faster she can get them diagnosed and started on treatment, the less damage will be done. She spoke about putting us on an enzyme regime, and special eating scheduale, and diet. She also said that a protocol would have to be given to our doctors and hospital for when we get sick.

She gave us her card, she told us that any question we have, we are free to call her. Besides having her office number on it, it also had her cell phone number on it.

She said that if we hadn't raised our children on organic food and made sure they got the medical care they needed, they would be alot worse off. She said we were amazing parents.

I know I should be relieved to finally get us to someone that will help find us the awnser, but part of me feels very sad. I somehow feel to blame. Since Ryan's health history is not to remarkable, she feels that they probably got this from me. She won't be sure until she does the testing.

So now we wait for the testing, then wait for the awnser, and will be doing a lot of praying.

How are you supposed to react when your Primary Care Physician tells you that.......

It is time for you to start making some end of life decisions. In regards, to making sure that your children will be taken care of financially after you are gone.

I know that my health has taken a turn for the worse and that I will be having major surgery soon.

But.....Did he just tell me indirectly??? That he is not sure how much longer I have to live!

Ryan and I left this appointment very sad and scared about where our future is taking us.

I am not ready to make those kind of desicions yet.

Is anyone ever really ready???

ANGUISH!!!!

We see the Geneticist on December 4th with Matthew
.....and all I wanna do is scream "Please Help Us!!!"

I just want to know if my children are going to go through the hell I am. Is there a way to make it so they don't???
No one should have to go through the pain I feel ever day.
Pain in my nerves, body, and heart.

Pain.....My heart hurts because I wanna see my children grow up!
Pain.....My primary telling me that I need to get the children SSI, so that they will be taken care off when I am gone.
Pain.....that my children struggle everyday.

I want to know what is causing all our health problems... I want awnsers...and I want a cure.
Please don't let my babies have to suffer even more than they already do.
Please don't let my babies go through not knowing if they will survive to see their kids grow up!!!

Halloween is Almost Here!!!

I am so excited. Halloween is one of my most favorite holidays. I love everything that goes with it. Well except the Evil connotation!!!

Things I Love About Halloween

1. Watching Scary Movies
2. Making Jack-O'Lanterns
3. Kid's in Costumes
4. The Fall Weather
5. Haunted Houses
6. Halloween parties
7. Pumpkin Picking
8. Going to the Pumpkin Patch
9. Going to the Country Store and buying Halloween stuff
10. Lighting all the scented candles
11. Taking the kid's Trick or Treating
12. Telling Ghost Stories (age appropriate)
13. Reading Ghost Stories(Terrifying Myself)
14. Eating Candy(Scratch that)

I know us Christian's should not celebrate this day, but I can't help it. Somewhere inside me is a little Black Magic. I love to watch anything about the paranormal. We even have our own Ghost. Weird unexplainable things are always happening in our apartment. We even call our ghost Bob. You all probably think I am crazy.

I LOVE HALLOWEEN!!!!

25 Days Until Halloween

BOO!!!!!!

Matthew had an Excellent Shriner's Appointment

(Awnsers to our Medical Mysteries May be on their Way)

We saw the most excellent Shriner's Pediatric Neuro today. When he first entered the room, Matthew asked him to read him a book, and so he sat down and read Matthew a book. Let me tell you, I was in love from then on.

After he read Matthew the book, he sat down and asked us about Matthew, his medical history, my pregnancy history with Matthew, then he looked at Matthew's MRI, and then due a full neuro examination. He then asked if we had other children, we said yes, two. He asked us if they had any medical issues. We said Yes, that they all have neurological and other medical problems, we named them off. He then asked about Ryan and my health history. Ryan's being none compaired to my side of the family. He seemed shocked at my medical history (especially the Neurological) and then he asked about my Dad's, Mom's, and Siblings. I told him about all of their health problems ( neuological, gastrological, endocrine, ect.) He then went on to say that some children with CP have CP because of underlying Genetic diseases/disorders. He told us with the fact that I had an excellent pregnancy with Matthew, and that his brain just stopped developing in utero, and that some of his physical problems don't usually manifest with CP, that he feels he may have one of those Genetic diseases/disorders. He feels that with my moms, my Siblings, our Children's, and my health problems (which are very similar in nature), that we may all be suffering from a Genetic Disease/Disorder. So he is sending Matthew, Ryan, and I, to their Geneticist to have a full work up and history done. He told us that the Geneticist will probably also do testing on Jessica and Hunter.

So December 4th, we will be going for our first Geneticist Appointment. Ryan and I, feel that finally someone is actually listening to us and is trying to find out the awnser. We always felt that it was weird that Jessica, Hunter, Matthew, and I, all have Neurological issues/other related medical issues and yet the doctors have never thought they could be related. Everytime we have brought it up with them, they told us it was just a fluke. Fluke my foot!!!

I think the most wonderful part of this is that Shriner's pays for all it. We no longer have to fight the insurance like we used to. The CP Neuro also said that he will make sure that our School District meets all Matthew's needs. he will also be talking to all Matthew's Doctors, Specialists, Pt, and OT, so they are all on the same page.

In regards to what Matthew needs.He does not want to put Matthew in Braces just yet. He want's to see how Matthew's legs develop (muscle/tendons) before he put's him in braces. He was concerned about Matthew's severe fatigue issues, and was glad that his neuro gave us a script for a Special Needs Light Stroller . He wants us to get it as soon as possible. He also wants Matthew in a Full-inclusion Preschool because then the teachers can document all the area's of cognitive development that he might need help in. He also wants us to take Matthew to a Pediatric Opthamologist for his eyesight problems.

I think that is all for now. I am so sorry that this was such a long post. I just wanted to tell you everything. LOL!!! I am so glad that the CCS lady sent us to Shriner's. We just love them!!! I have never met such a thorough doctor. He spent an hour with us. Amazing!!!!

Life in the Fast Lane, Barely Time to Lose My Mind!!!

(Life has become very busy here, as if it weren't been before)

This weekend we had three birthday's to celebrate:

Friday,

We threw Jessica a Girl's Spa Party and Sleepover. We had seven 6yr olds in our small little apartment. It was controlled Mayhem. My best ""Friend"" bailed out at the last moment, so I had to do the party by myself with Ryan to sorta Referee. It was crazy, but the girl's were amazingly well behaved. the girl's and I made scented bath gel, lotion, bath salts, and Glitter gel. They had a blast!!! We then had pizza, decorated cupcakes, opened presents, and ended the night with Barbie's newest movie. Three of the girl's stayed overnight, the rest went home around 8:30pm, the girl's that slept over were asleep by 10 am. An amazing feet, I know! When the girl's left the next morning, they could not stop telling their parent's what a good time they had! Jessica told me that this was the best birthday she ever had. I am so glad. This party was a true success. I hope she remembers this party for years to come. We made some good memories, I am sure!!!

Saturday,

we gave Hunter a Birthday Bounce party, minus the bounce. Two hours before the party, I found out that the bounce place we were going to was closed do to a family emergency. Let me tell you, panic set in. The next hour, I spent calling all the bounce places in our area. None of them were available to take us. Just when I was about to rip out my hair, Ryan came up with the idea of taking the boy's to Miniature Golf. I called the Miniature Golf place and they said sure come on in. THANK GOODNESS! the boy's came to our Apartment, they had pizza, and then Ryan took them to play golf. I stayed home to get a much needed rest. Ryan and the boys then came back, we did cake/ice cream, Hunter opened his presents, we gave out goody bags, and then they all went home. A Great time was had by all. I have never seen hunter so happy.

Saturday night,

I had an intimate birthday party for Ryan. We sent the kids to granddaddy's and had a quiet night here. Ryan and I, had Take Out Chinese for dinner and then I gave him his presents. He was dying to get Guitar Hero 2, so I caved in and got it for him. I hate video games, but he so deserved it. The rest of the night he played his game and I watched shows that I had DVR'd during the past week. Yes, we are boring, but it was a much needed rest! Congratulations sweetheart, only one more year till you are 30. Heeee,Hee, Hee!!!

Sunday,

Ryan went to work and I spent the day organizing the house, folding laundry, putting away laundry, organizing drawers, and getting everyone/everything ready for the coming week.

Sunday night,

Matthew was up all night with Stomach pain and gas. It was a miserable time for both Matthew and I. Poor little guy, nothing I tried made him feel better. I was exhausted by Morning. A Sleep Deprived Mommy is never a good thing...

Monday Morning,

Matthew had an appointment at 7:30 am to be evaluated by Shriner's for their CP Clinic. Ryan dropped us off, then took J and H to a friends to be watched and then be taken to school, he then rushed back to Shriner's so he could be at the appointment. Turns out that Shriner's had supposedly called last week and changed our appointment to Wednesday. I was not thrilled, let me tell you. So when Ryan got there we packed up and went home. I checked caller I'd and did not see any calls from Shriner's, so i am not sure what happened. When we got home, we had lunch, and then Matthew and I crashed until about 4pm. Boy, poor Matthew was a bear the whole rest of the day. Bedtime couldn't have come quick enough. I was so glad to see this day end.

Today,

We had Hunter's School Birthday Celebration. I love Waldorf!!! I can't say that enough. Hunter's teacher told everyone little stories for every year of Hunter's first 5 years of life. She then gave each of his classmates and us a wishing Stone to give Hunter, along with everyone of us giving a wish to him. When all was said and done, Hunter was beaming with joy. Hunter is well loved by his class. I couldn't have been prouder of him, if I tried. Compared to last year he has grown so much. It is amazing what a year and a good teacher can do.

Tomorrow,

Matthew will finally have his eval at Shriner's at 7:30 am. I am so afraid that they are going to say that they will not take him as a client. I have heard that if they accept a child for care, that they will cover things the insurance won't. We really cannot give him all he needs due to cost and Medicaid issues. It would be a true blessing if they accept him for care. We are so tired of struggling with our Insurance to get him what he needs. We really need for them to take him on as a client. A Children's services worker came an evaluated him during a PT session and said that he is definitely going to need braces and that we must go to Shriner's because they will take good care of him. At this point I will do anything to get him the care he needs. His walk is getting so much worse, even with the orthotics. He continually falls down and gets hurt. Last week his Homebase teacher and I took him out to play for 20minutes. In that 20 minutes he fell at least 10 or more times. three of those times her scraped himself up. After about 20 minutes his teacher suggested we go in because she was afraid he was really going to hurt himself. I am praying that braces help him. Hopefully Shriner's will also be able to help us get his Special Needs Big Light Stroller the Neuro gave us a prescription for. It will be great for when he fatigues when we are out. He is to big for his stroller and weighs to much to be carried all the time.

Please, please, keep him in your prayers tomorrow! We could use some positive news right about now. We are getting so worn out.

Thank you for reading my blog. I know this one was long. Have a great week. Big Hugs!!!!

I am so tired!!!

Seems like my battle against the internal forces of evil is failing.
I force myself to get up everyday but it is getting harder and harder.
I feel so drained by fighting whatever is going on in my body.
Ryan tells me to take it easy and lay on the couch.
I can't do that because if I do, I will probably never get up.
Everbody commends me for doing such a great job, being so active and not giving up, while battling my illnesses.
If they only knew, how much I fight to make it everyday.
The last three days, I have been so tired that I spent most of them sleeping. If you know me, you will also know that I hardly ever sleep.
I am so afraid that things are getting worse.
Please pray that I make it through my 2 older Children's Birthday's.
I don't want them to remember celebrating their birthday with Mommy in the hospital.
Please pray that I make it through DH Ryan's birthday. I hate for him to have to worry on a day that should be celebrated.
Please pray that I overcome what is happening to me.
I need strength to fight but I feel sucked dry.

PLEASE PRAY!!!!

My Father-In-Law Made Me Very Mad Today!!!

On our drive home from picking the kid's up from their Grandpa's, Jessica says "Grandpa says he wishes Dh Ryan would work more, so Grandpa would be paid more" Ryan and I both look at each other in shock. Then Jessica goes on to say that, "Grandpa is poor and only has money to spend on food. Grandpa needs more money. I am scared about him!"

I understand that Grandpa does not have lots of money. The reason that is so, is because he lost his temper for the millionth time and yelled/argued with his boss one to many times. Something we warned him repeatedly not to do.He would tell us how he would never get fired, because only he can do the work he does. So guess what happened? YUP, he got FIRED! He then received unemployment for awhile,waited to almost the last check, then went to look for a job, but could not find a job. Why you ask? because his attitude, work history, and interview appearance sucks!!!

He had been watching our children on the weekends, when Ryan worked. So out of the goodness of my heart, I applied for Child Action, so he could be payed for taking care of our children. I even got him two months retroactive payment. We strongly suggested moving to a cheaper place or get a roommate and/or get another part time job to supplement his income. So what does he do, he does nothing.

I started getting scared that he will lose the house he is renting, and move in with us(his plan not ours). So I split half of Ryan's In Home Supportive Services work hours and pay with him. So now he can stay in his 2 bedroom house, pay his bills, and have food to eat. I am fully aware that he does not have much extra spending cash, but that is his fault.

I am floored that this man can talk trash about DH to our children! How dare he!!!!

Ryan call him on it tonight. The only thing he can say, is that he talked to Ryan like that, when he was little, so he doesn't see why can't he talk to his grandchildren like that. Uhhh excuse me, no one can be that dense. Number one rule, do not talk trash about people to children (EVER), especially the ones that employ you. We have issues with the way Grandpa takes care of our children, but we do not talk about them, in front of the children.

This is not the first time Grandpa has made the comment. But it is the first time he used the children to deliver it. I/we have explained that Ryan would be able to work more if Grandpa would get a drivers license and a car. We even said that he could use our car, if need be. If he could drive, he could take the kids and I, to school, therapy, doctors, specialists, tests, and after school activities. He says, "yes, I understand" and then does nothing. Oh, but he can complain!!!

He above everyone should understand, that with three special needs/disabled children and a wife with disabilities, it is impossible for Ryan to work full-time. I am sure, Ryan may be able to work more hours, if someone else could drive. I cannot drive because I am legally blind due to a lesion on my Occipital Lobe. Boy, do I miss driving. Financially, we could use the extra pay. We have learned to do without and finagle with our budget, but we have a beautiful, happy, close, loving, family a place to live, food in our tummies, and clothes on our back, so we are in no way poor!!! It would be nice to not to have to worry so much though. What Grandpa doesn't realise, if Ryan gets a new job, it will probably be during the week and because the kids are in school, Grandpa will make less money.

I hate this, because I am kinda stuck dealing with all of this. I would be afraid to fire him, because he may not be able to get a job. I can't let Ryan's father be homeless and in the poor house. Ryan is not so attached to FIL, due to anger issues caused by FIL drug problems, during Ryan's teens. Grandpa has somewhat shaped up since then and is no longer doing drugs. Ryan is more likely to snap and fire grandpa, than I.

I just cannot fathom what is wrong with this man. He is biting the hands that feed him. Does he want us to be angry enough that we fire him. Geez, it is pretty low when you go to someones children to try to get a message through to the parents. Due to their disabilities, all three children deal with anxiety issue, especially Jessica. Why would you make her worry even more??? Goodness, that makes me the angriest of all.

Thanks for listening to me vent. If anyone has an idea how we can get out of this situation, please leave us a message. Thanks again!!!!

A Big Thumbs Down to HEALTH NET GMC!!!

(((Part I)))

My Medical Supply Company and I, have spent the last month, trying to get my sons specialized formula authorized. He has been on it since he was five months old and all of the sudden Health Net GMC is not approving it's authorization. They are playing around. I know this because his GI gave them all the documentation they need for approval. The same documentation they ask for every few months. I can't believe this, we were supposed to get it on May 9Th!!!

Luckily/sadly, I had some extra cans, due to all the months Matthew got sick. They do not know that and I have not informed them. Thank God for these extra cans. I am so glad that I held on to them. So it comes to reason, that they do not care if Matthew lives or dies. His formula gives him the only protein and Calcium he gets in his diet. He has a total protein allergy that is well documented. How can you deny a formula that sustains a child's life. It will cost them a lot more if he starts violently throwing up, because I had to give him some other source of protein, and then he ends up in the hospital due to dehydration and Malnutrition.

I talked to Health Net GMC, yesterday. I told the customer service person what was going on. She told me that Health Net GMC goes through their secondary medical group(EHS) for authorization. Would I like for her to transfer me to them??? ((((WHAT)))) She tried to call the Health Net (EHS Medical Group)to see whats going on, they of course has closed early. GRRRR!!!! So now I have to call back on Monday. Lets just say, I was not a happy camper when I hung up the phone.

I feel very sorry for the person I talk to on Monday. Please Lord Help Me. I will be back soon with part two of this fiasco.

On The Run!!!

Yesterday, Ryan left for work and then came home Two hours later. First thing I assume is he got fired. I am in that "What Else Can Go Wrong!" mentality. No, He did not get fired! His boss let him go home early to spend time with me. Who knew, the guy actually has a heart! He noticed that Ryan was feeling down and pulled him in an office to talk. They talked for over an hour about my health issues. His boss said, "Do what you need to do for your family. In the end, they are what matter the most." Bossy guy also said to tell him if there is anything he can do personally or company wise for us. I am still a little pessimistic about all this, but I will give they guy a chance.

On to the fun part, Ryan kidnapped me and drove me up to the Tahoe Mountains. I love Tahoe. I love the mountains, the trees, the snow, the fresh clean air, and the beautiful lakes. When we got to Tahoe, we stopped at a roadside Burger Joint for lunch. The food was yummy. we actually sat outside on a picnic bench and enjoyed the cool crisp air. Next Ryan suprised me by taking me to do my next favorite thing.........Outlet Shopping! We found me some sandals and my favorite perfume at way below cost price. After we were done shopping Ryan took me for a drive around the lake. Did I tell you??? Tahoe Is Beautiful!!! After our drive it was time to drive home. Before we left, we did stop off at our favorite Pizza place in the whole world and bought a pie to take home.

Ryan gave me such a beautiful day. He held my hand alot during the trip and told me that we will make it through this. He said that we will fight this and that we can't give up, that we need to do everything we can to find out why I am sick, and then find me the help I need. Most importantly he wants me to be strong and fight. I am so glad that we have each other. Ryan completes me. Sometimes I take for granted how much we love each other and then it takes something like this to happen to jump start my heart. I love him and he gives me more than he will ever know.

That I may not live to see my children grow up.....

(I am sad tonight so please forgive my pity party!)

I knew when I was diagnosed with Multiple Sclerosis that I may not be around forever. But with the advances in medicine, I leaned on the hope of a cure or at least the slowing of this diseases progress. I started Betaseron shots every other day, I took better care of myself, I watched even more of what I was eating, I ate mostly organic foods, and I took vitamins. My MS has progressed more than I would have liked. It is unbelieveable how much of the body can be affected by this disease. Though, all in all, I have adapted and accepted every change pretty well.

Three weeks ago, I was diagnosed with Diabetes, for some reason this diagnosis was harder to bear. I am still trying to learn how to deal with it. I hate the finger pricks, counting carbs, and the added medication. what's worse to me, is the horrible way I feel when my sugars are out of whack. I know diabetes unmonitored is deadly, so I do everything I am supposed too. I do it all so that I can be around to see my children grow up.

Today, I went to the Dr. for a diabetes check and to see what my blood tests revealed.

The blood tests were to see:

1. How long I have had diabetes....probably about a year.

2. If my kidney's have been affected.....thankfully No.

3. If my liver was healthy enough to go on a second more effective

Diabetes Medication....the anwser is....NO!!!

To the shock and dismay of everyone in the room.......I am in the early stages of Liver Failure.

Since I don't drink, do drugs, don't have Hepititas, and haven't had diabetes long enough to cause this, the Dr. is going to have to run a bunch of tests to find out why. I am also going to have another specialist added to my list. He seemed extremely puzzled/worried. I can live with MS, I can live with managed Diabetes, I cannot live without a liver. I won't even qualify for a transplant because of my other pre-existing diseases/disorders. The doctor made it pretty clear that we need to find out what is causing my liver failure ASAP because my liver enzymes were at a pretty high. At this point we can do nothing until we find out what is causing this. Ryan and I feel so helpless. I hate feeling helpless.

I did find out that my Cholestrol was in excellent shape. I am at no risk for heart disease. I joked with Ryan, "That if I died, at least I could donate my heart!" Ryan did not find this funny at all.

I can't figure out what is going on. All I want to do is live to see my children grow up. I am in no way giving up on that dream, but another thought keeps creeping into my head. What if God has other plans!!! What if I don't agree with those plans? Does it make me a bad person. Our family has gone through so much. It wouldn't be fair to them or me, if I was gone. Why, why, why???? I just want to live to see my children grow up!!!!

Keely and the Terrible, Horrible,No Good, Very Bad Week!!!

Another Life Changing Event for Me...

Last weekend, I felt like a truck hit me. I was extremely weak, I could barely get out of bed, having sharp pain in my left chest, heart has been racing, clammy, severely thirsty, and have a severe headache. I was not running a temp, so it is not something I caught. After three days of suffering, Ryan forced me to go to the hospital, monday morning.

Turns out......
On top of all my health problems....
I now have.......Diabetes!!!

I will have to take my blood sugar three time a day. The Dr. is going to try oral meds to regulate my blood sugar, but he feels that I will probably have to go on insulin. The Dr feels this way because, when I was in triage the nurse checked my blood and my sugars were 386. An hour later the Er Dr gave me some Glucophage. 3hours after the med my blood sugar was 291. Not big enough of a change. Specially since I hadn't eaten all day except for 3oz juice around 10am.

My symptoms were a combination of high and low blood sugars and dehydration caused by my peeing so much. My body was trying to regulate itself but because my Insulin wasn't doing it's job, everything went haywire. The Dr said that I have probably had diabetes for awhile and that it was lucky my body didn't shut down over the weekend.

The Dr said that I either have type 2 Diabetes or an Autoimmune type of Diabetes. He feels that it might be autoimmune because I have two other autoimmune diseases and these diseases tend to run together.

I feel terrible, I hate needles and shots. I have been on shots for my MS, every other day for almost a year, and I am still not used to it. Now lets just add tons of finger pricks, more meds, and maybe shots. On top of that I am going to have to learn to eat as a diabetic. Which has beeen harder than you could imagine. Counting carbs suck

So another life changing event has hit like a ton of bricks.

Lord, Help Me!!!!!

Why do people keep bugging me to potty train Matthew???

Specifically Ryan's Dad and Matthew's Headstart Homebase teacher Beverley. Ryan's dad wants Matthew potty trained so he doesn't have to change Matthew's diaper anymore when he babysits him. Beverley wants us to start potty training him because Matthew is almost three years old and typical 3 year olds are potty trained.

I have explained to them quite a few times that Matthew is not developmentally ready for such a task. How can I expect a child, who can't undress or dress himself and doesn't know and can't tell us when/or if he has gone peepee or pooped, to be ready to be potty trained. Pushing Matthew right now would be futile and cause both him and I undo stress.

Matthew is disabled. He is not a typical 34 month old. Both David and Beverly know this, have read the Doctors reports, and have seen it for themselves, but for some reason they can't come to terms with it. Their ignorance hurts me. I know that Matthew is disabled but to have to explain why he can't do something again and again is like rubbing salt into an open wound. The wound keeps opening and the pain is renewed.

I would love to not have to change diapers. I would love to clap and cheer for him as he pee's in the potty. I can't wait to do our line dance, while singing our "peepee in the potty, poopy in the potty"song. I can't wait until I can give him little lollipops when he poop's in the potty. I would love to see Matthew running around in little Thomas The Train undies. I want to take alot of photo's of those cute little buns running around.

Matthew is not ready right now. I believe that one day, with God's help, he will be. Just give him time!!!

So Time Has Passed!!!

I am sorry for the long spans of time between my blogs. It has been very hard to blog latley. I get on every almost every day, but have been feeling so overwhelmed, that I just can't seem to figure out what to write. I hate always writing about the negative in my life. I want to write about the wonderful, great, exciting things that are going on in my families life. To tell you the truth, I would love those things for a change. So instead, I remain silent and read all your amazing blogs. I decided today that I would try to blog a little more than I have been. So I am going to open a little window into what has been going on in each of my children's life.

Jessica.....

My little girl is growing up. Monday, I spoke with her teacher and...........she is ready to go first grade next year!!! A very amazing achievement for her with her behavioral, developmental, and sensory disorder. I am so glad we chose to put her in a Waldorf school. The Waldorf Method is such a fantastic program for children with special needs. Jessica is blossoming into a happy and self assured little girl. We are so proud of her!!!

She has finally been diagnosed with a pervasive developmental disorder, anxiety, and seizure disorder. She is on meds for the anxiety and seizures. She seems to be doing pretty well on these meds. Her seizure med will probably have to be adjusted, due to a breakthrough seizure last week, but we are waiting to see if she has more before we call the neuro.

Hunter.....

At this point, it seems that sweet little Hunter is having the most difficulties. He is having some horrible behavior difficulties. He has been in therapy for 7 months and he seems to be getting worse not better. We talked with his therapist and we have all agreed that is time for a change. Hunter will be seeing a Psychiatrist in about a month. During that time we will be using strict behavior modification to try and slow down some of these behaviors. The therapist feels that Hunter has ADHD and Oppostional-Defiant Disorder characteristics. She is anti meds and we have agreed with the no meds, until the past month, in which Hunters behaviors escalated into violent uncontrollable fits. Thank God, he is just doing these fits at home and in therapy. The reason why he does these behaviors at home is because he bottles it in all day, then he comes home, and explodes. Our fear is that eventually he will explode and it will happen at school.

Last Thursday, We had a parent-teacher meeting with Hunter's school teacher. She actually saw a lot of the same behaviors that we have. Hunter has trouble socializing with the other children, he prefers to be alone. He also has trouble staying still for any amount of time. If other children bother him he gets angry or becomes withdrawn. Because of the lack of maturity, his teacher feels it would be best to have Hunter repeat Kindergarten and we agreed. Hunter is an amazingly smart little boy but socially and emotionally he needs a little more help.


Matthew.....

Matthew is doing Physical, Occupational, Behavioral Therapy, and Easter Seals Early Childhood Intervention. His service coordinator is also getting him a speech evaluation and Music Theraphy. We are doing Brushing therapy at home 4 times a day. We are so busy, I don't even know what day it is, unless I look at the calender the night before. In the beginning it was a very hard road, Matthew does not deal well outside of his environment. So there was a lot of screaming and crying in the beginning, it was very hard for both Matty and me, but we stuck it out, and he is doing much better. He actually gave his PT and OT hugs before he left his last appointments. Yeah, Matthew!!!!

Matthew is still having trouble walking and does a lot of falling down. His PT says Matty needs AFO's but because of his sensory issues she is afraid he won't be able to stand them. Ryan and I discussed it and have decided we would rather have him wear AFO's then have to have surgery to release his tendons in the future. So we will be discussing getting them with her next week. We are also in the process of getting Matty a more supportive seat at home, because when he sits for more than 10 min in a regular chair he becomes very stiff. Turns out that because of his overall weakness, he has to work very hard to sit up, so his muscles get stiff, which causes him to fall even more.

Thanks for stopping by to read my blog. Life is anything but boring in my world!!!

What Wal-mart Really Cost's Us!!!

(why I no longer shop there)

HEALTH CARE

Who pays for Wal-Mart workers’ healthcare?

Wal-Mart, right? No, we all do!!!

Despite Wal-Mart’s mammoth profits, the company actually burdens us—taxpayers—with its workers’ health care costs. In a disturbing nationwide trend, more state studies are revealing that Wal-Mart employees are the top recipients of taxpayer-paid health care. The scope of this corporate failure is massive: Wal- Mart is the largest private employer in the United States, with over 1.2 million employees, yet they fail to provide health insurance to over half their employees.

WAL-MART WORKERSON PUBLIC ASSISTANCE

Just 47 percent of Wal-Mart employees are covered by the Wal- Mart health plan; while nationally 68 percent of workers in large firms receive their health benefits from their employer. Many of Wal-Mart’s uncovered employees are forced to rely on public health assistance, adding to the cost of the bloated Wal-Mart tax. — Kaiser Family Foundation; http://www.walmartfacts.com/

As momentum grows, lawmakers in 16 states have revealed troubling statistics. Wal-Mart employees top Medicaid and CHIP rolls; many are forced to rely on public assistance for their health coverage. — Wal-Mart Watch; walmartwatch.com/healthcare

HIGH DEDUCTIBLES, HIDDEN FEES

Wal-Mart’s health plan has deductibles as high as $1,000 in addition to many hidden fees. For example: a $100 deductible for ER visits, a $100 deductible for ambulance services and a $25 weekly "spousal" surcharge for health coverage.
— Phil. Inquirer, 5/16/05; Wal-Mart 2005 Associate Guide

Full-time Wal-Mart employees must wait six months to be eligible for their health care plan, while part-time employees must wait two years to become eligible.
— Phil. Inquirer, 5/16/05; Wal-Mart 2005 Associate Guide

WOMEN

Wal-Mart is the subject of the largest class action lawsuit in history by current and former female employees who were paid and promoted at significantly lower rates than their male co-workers.

In the largest class-action lawsuit in history, 1.6 millioncurrent and former female employees are suing Wal-Mart for gender discrimination. — New York Times, 6/23/04

Women comprise 92% of Wal-Mart’s cashiers, but only 14% of Wal-Mart’s store managers.
— Dukes v. Wal-Mart, walmartclass.com

"Overall, women earned about $5,200 less than men, on average, in 2001. Within the hourly workforce, women earned about $1,100 less than men, and about $14,500 less among management employees, in 2001."
— Dukes v. Wal-Mart, walmartclass.com

Wal-Mart was fined $188,000 by the California Fair Employment and Housing Commission for refusing to reinstate a woman after she completed her maternity leave.
— Sacramento Bee, 6/14/05

Wal-Mart’s health insurance does not cover birth control or Plan B. Pregnant women are allowed only one ultrasound, and newborns may be subject to the annual deductible for their care. — Wal-Mart 2005 Associate Guide, pages 50-64

OUTSOURCING

If Wal-Mart were an independent nation, it would be China’s eighth-largest trading partner. Is Wal-Mart trading away America's future to fatten its corporate bottom line

70% of merchandise in Wal-Mart contains components made in China. — NPR, 2/12/05
Wal-Mart’s extreme pricing pressure on suppliers forces those companies to relocate factories and jobs overseas.
— Los Angeles Times, 11/23/03; FastCompany, 12/03

More than one million jobs have been outsourced to China since the early 1990’s, leaving families and communities devastated.
— PBS Frontline, 2004

LEADING THE RACE TO THE BOTTOM
If Wal-Mart were an independent nation, it would be China’s eighth-largest trading partner. — New York Times, 4/17/04

Wal-Mart estimates it imports $15 billion of Chinese goods every year and concedes that the figure could be higher – someestimates range as high as $20 or $30 billion.
— PBS Frontline, 2004

Snapshot: LakewoodEngineering
In order to supply Wal-Mart, this fan manufacturer had to open a factory Shenzhen, China where workers make 25¢ an hour, compared with $13 an hour in Chicago. Carl Kraus, the owner of the company said about opening the factory, "My father was dead set against it. I have the same respect for American workers, but I’m going to do what I have to do to survive."
— Los Angeles Times. 11/23/03

LOCAL ECONOMIES

For every new Supercenter that Wal-Mart opens, two local supermarkets will close. How will this affect your town? Big box stores like Wal-Mart spend nearly four times less within local and state economies as local businesses do.

Local businesses are known for their better service and higher quality merchandise, but too often cannot compete against Wal-Mart’s harmful low-pricing scheme.
Putting localstores outof business

Industry analyst, Retail Forward, predicted that for every new Supercenter that Wal-Mart opens, two local supermarkets will close.
—Business Week, "Is Wal-Mart Too Powerful?," 10/06/03

Wal-Mart has received more than $1 billion in taxpayer-funded subsidies from state and local communities.
— Good Jobs First, "Shopping for Subsidies," May ‘04
http://www.goodjobsfirst.org/

HOW BIG IS TOO BIG?
One study found that local businesses spend 53% of their revenues within the local and state economies; whereas big box stores, like Wal-Mart, spend just 14% within the local economy. — Inst. for Local Self-Reliance, 9/03
Source: New Rules Project, www.newrules.org/retail

SNAPSHOT: IOWA
A study of the impact of Wal-Mart’s growth found that over ten years 7,326 Iowa businesses closed, including: 555 grocery stores, 298 hardware stores, 293 building suppliers, 161 variety shops, 158 women’s stores, and 116 pharmacies.
— Dr. Kenneth Stone, Iowa State University, "Competing with Discount Mass Merchandisers," 1995

A study of Wal-Mart’s expansion in Iowa found that 84 percent of all sales at the new Wal-Mart stores came at the expense of existing businesses within the same county.
— National Trust For Historic Preservation,

WORKERS

The average pay for a Wal-Mart sales associate is $1,000 below the poverty line for a family of three. Business as usual? Not necessarily. Retail rival Costco pays its workers 65% more on average than Wal-Mart, yet earns more profits per employee.

Rolling Back Workers’ Rights
Wal-Mart mobilizes its incredible power to block union organizing efforts at all costs, sometimes in blatant violation of federal labor law.

In California, Wal-Mart is facing a lawsuit filed on behalf of 115,919 current and former employees who were systematically and illegally denied meal breaks while working for the company.
— Bloomberg News, 9/19/05; Associated Press, 9/19/05

In 2000, Wal-Mart closed its company-wide meat-cutting division after ten butchers in Texas voted to unionize their shop. Wal-Mart closed a profitable Canadian store in 2004 after employees chose union representation. — Associated Press, 3/3/00; 2/09/05

Wal-Mart [reportedly] paid $50 million to settle a lawsuit that involved 69,000 workers in Colorado who had allegedly been forced to work off the clock. In recent years, Wal-Mart has faced legal actions in over thirty states for overtime violations.
— New York Times, 11/19/04

Wal-Mart’s CEO Lee Scott took home $17.5 million in 2004, which equals $8,434 an hour. An average Wal-Mart associate earns just $9.68 an hour. — Institute for Policy Studies
The average pay for a Wal-Mart sales associate is $14,000 a year $1,000 below the poverty line for a family of three.
— New York Review of Books, 12/16/04

On average, Costco pays its workers 65% more than Wal-Mart, yet earns more profits per employee.
— New York Times, 5/3/05; Business Week, 4/12/04

DISCRIMINATION

Two recent lawsuits by minority employees and customers have brought to light a disturbing pattern of racial discrimination by Wal-Mart.

Discrimination against African-American
Wal-Mart is facing allegations of discrimination in its hiring of truck drivers. Nationally, 15% of truck drivers are African-American, yet at Wal-Mart African-Americans comprise only 2-3% of its fleet, which employs 7,800 truck drivers.
— New York Times, 7/14/05, 2005 Wal-Mart Annual Report

Minority customers have sued Wal-Mart Stores saying they were racially profiled while shopping at its stores. The lawsuit says at least 9 customers were followed, searched, humiliated, and in some cases, detained by employees. — Boston Globe, 7/13/05

Discrimination against Women
In the largest class-action lawsuit in history, 1.6 million current and former female employees are suing Wal-Mart for gender discrimination. — New York Times, 6/23/04
Women comprise 92% of Wal-Mart’s cashiers, but only 14% of Wal-Mart’s store managers. — Impact Fund

Overall, women earned about $5,200 less than men, on the average, in 2001. Within the hourly workforce, women earned about $1,100 less than men, and about $14,500 less among management employees, in 2001. — Impact Fund

Discrimination against people with Disabilities

In 2001, Wal-Mart agreed to pay $6.8 million to settle 13 lawsuits in 11 states that were filed by the Equal Employment Opportunity Commission, alleging widespread discrimination against people with disabilities. — Los Angeles Times, 12/18/01

In 2005, after Wal-Mart settled yet another discrimination case, the EEOC announced it was opening a new investigation into the company to see if it has violated the terms of the 2001 settlement. "Over the years, we’ve had complaints [about Wal-Mart], but some of the stuff we’re now seeing bears looking into," EEOC attorney Mary J. O’Neill said. — Washington Post, 7/29/05

ENVIRONMENT

Wal-Mart has a long history of breaking environmental laws that its high-priced green-washing campaign can't hide. Its record of environmental abuse was described by one top law enforcement official as "widespread, systematic, repeated" and has incurred millions in fines from state and federal agencies.

THE SPIN...

Wal-Mart has invested heavily in a campaign to sanitize its environmental record. "We are excited that we can lead the way in promoting the use of sustainable building and business practices," Wal-Mart Stores CEO Mike Duke boasted at the opening of a "green store" in McKinney, TX. — Press Release, 7/20/05

...THE REALITY

"One store out of thousands does not make for an environmental champion…There’s lots more that can be done, especially from a corporation that can leave such a huge footprint on the environment." — Eric Olsen, Sierra Club, Women’s Wear Daily, 7/20/05

In 1993 Wal-Mart unveiled its similar "Eco-Mart" in Lawrence, KS. The store is now being converted to a Supercenter, more than doubling its original footprint. Shockingly, there is no mention of environmental friendliness in the expansion. — Lawrence Journal World, 4/30/93; Journal-World, 5/12/04, 5/5/05, 7/12/05

Wal-Mart also has temporarily halted its recycling program at the Lawrence store. Wal-Mart green team coordinator said, "There’s just not any money in recycling." — Journal-World, 7/12/05

REPEAT ENVIRONMENTAL OFFENDER

Wal-Mart has a long history of violating environmental laws. In August 2005, Wal-Mart agreed to pay $1.5 million in penalties in Connecticut for storm water violations. In 2004, Wal-Mart was hit with a $3.1 million penalty for Clean Water Act violations. That same year, Wal-Mart paid $400,000 to settle violations of the Clean Air Act. — Forbes, 8/15/05; NY Times, 5/13/04; AP 1/22/04

Wal-Mart’s constant expansion and conversion of discount stores to Supercenters leaves vacant buildings behind–in 2004 an estimated 13 million square feet. Wal-Mart admitted the company prefers to let the buildings sit empty. "There are times when it’s in our interest to get the property moving faster, but we’re certainly not going to give a competitor an advantage," Wal-Mart spokesman, Bob McAdam said. — Wall Street Journal, 9/15/04

UNCHECKED GROWTH

Think Wal-Marts are everywhere you turn today? Just wait five years. Wal-Mart plans to nearly double its retail outlets in the U.S. by 2010 and has already demonstrated its willingness to play hardball with anyone who stands in its way.

2010: Double trouble in nextfive years

As the world’s largest corporation, Wal-Mart – with billions in its deep pockets and an insatiable hunger for growth – behaves shamelessly in the way it forces itself on American communities. Its aggressive bullying of American communities occurs because Wal-Mart’s growth is central to its business model; it has to grow to sustain its profits, $10 billion in 2004 alone.

As of 2005, Wal-Mart had 1,713 Supercenter stores, and is projected to have 3,131 in operation by 2010. 950 new Supercenters have already been approved through the company’s internal planning process. — Women’s Wear Daily, 6/20/05

"If you have one takeaway from this meeting I hope it is our growth has just begun," Wal-Mart CFO Tom Schoewe at the 2005 annual shareholders meeting.
— DSN Retailing Today, 6/13/05

Coming soon: Travel, Publishing, Banking

Wal-Mart is aggressively expanding beyond traditional retail; here are some of the business services that Wal-Mart is now providing or considering: air travel, banking, rental cars and publishing.
— Women’s Wear Daily, 6/20/05

Wal-Mart applied to federal regulators to exploit a loophole in current banking law that would allow the giant retailer to open its own bank. Experts oppose Wal-Mart’s application because it could lead to "conflicts of interest between the financial and commercial arms of Wal-Mart’s operations." One concern is that the company could make loans to its low-income shoppers to spend in their stores, even if there were doubts about customers’ abilities to repay. — American Banker, 8/30/05

Matthew's MRI Results

Forgive me for taking so long to write this post.I kept starting and then stopping, that is why this post is dated the 25th, but actually published Febuary 4th. The reason for this is, I have been having a hard time dealing with what we told. It is actually almost a week and a half since we got the results Matthew's MRI.

On Friday, January 25th, we had a follow up appointment with Matthew's neuro to go over the MRI. I do have to say we were not prepared for the results.

The results of the MRI are that during fetal development Matthew brain failed to develop properly. The neuro showed us, on the MRI, that Matthew has a lot of white matter, where there should be dark, and the root like structures that should grow into the brain are growing out in his.The neuro told us that right now Matty's brain age is that of a 18 month old.

I am having a hard time understanding this. A sustained event, while my son was developing inside me, caused his brain to stop developing. I saw specialists, I had ultrasounds every month, my high blood pressure was treated, I did everything I was told to do, and I passed every test with flying colors. Not once, did the specialists say that anything was wrong. I was told that I was the perfect patient and that I had a beautiful healthy baby inside me. SO, if this was all true, why did his brain stop developing and how did they miss his brain not developing.

The neuro did say, that only time will tell how much Matthew will be able to do. He also told us, for Matthew to be able to get special services, he is going to call it Cerbral Palsy, but that is not exactly what it is. He didn't tell us what this disorder is called. Ryan said that they probably don't have a name for it yet. That maybe this a newer diagnosis. I asked the neuro what we should do to help Matthew. He said to get as many therapies in place as we can.

Now here's the real kick in the head. We came to find out, the following Monday, that we were not told all the results of the MRI. I was speaking with Matthew's Pediatrician about our visit with the neuro. She tells us she has not gotten a report from the neuro, but she does have the results of the MRI. The MRI report is pretty much the same as what the neuro told us. That was until, the Ped gets to the part, which say that there are areas of Demylenation.

I was/am shocked because Matthew's neuro did not tell us this little bit of info. I was/am freaked because I have MS and that is one of the leading factors of diagnosis. Matthew is to young to get MS. I started to look up childhood demylenating diseases but stopped because they are so much scarier than MS. I decide to look up the definition of Demylenation and here is what it says.

Demyelination: A degenerative process that erodes away the myelin sheath that normally protects nerve fibers. Demyelination exposes these fibers and appears to cause problems in nerve impulse conduction that may affect many physical systems.

So basically, from what we gather, not only did Matthew's brain stop developing in utero, something else is going on also. I am not sure why the Neuro did not tell this too our face. Maybe he did not want to scare us. Maybe he forgot. I think it is scarier to find this out by mistake. In some ways it feels like the Neuro was hiding this from us. I am sure that I am just being silly.

As of now, Ryan and I are waiting to get the report from Matthew's Neuro, we will read it, and then we will decide on our next course of action. We should be able to get it sometime this week. Right now all we can do is pray and love our little boy!!!!

We Could Use Some Prayers Today!!!

Hi Everyone,

Today, Ryan, Matthew, and I have an appointment with Matthew's Neuro to go over the results of Matthew's tests. The Neuro suspects that Matthew either has Cerebral Palsy or Muscular Dystrophy. I would like to ask you, to please pray that the Neuro has some awnsers to the cause of Matty's problems and that what he has is the less drastic of the two. It took years for my neuro's to find out what was wrong with me. By the time I was given a diagnosis I had lost alot physically. I really don't want us to have to go through something similar with Matthew. Ryan and I, want an awnser so we can start some sort of treatment.

Thank you all for your love, prayers, and support. BIG HUGS!!!

Hmmm, Where have you been young lady???

Sorry blog world for being absent for awhile. I plead the fifth???

Life has been becoming increasingly busy for the past few months. Busy is actually an understatement!!!

In October, our regional center had Matthew evaluated by Easter Seals. The results of the eval was that Matthew needed Early Intervention services, Physical Therapy, and Occupational Therapy. He was already getting theraphy for depressive/aggressive episodes. We found out later that Matty was acting out because he was in pain and didn't have enough words to express it. Matthew also had Neuro appointments and tests run to find out why he is having Hypotonia/tremor through out his body. Jessica also started seeing a neuro and went on meds for seizures. This was/is on top of all the other specialists/therapies that Jessica, Hunter, Matthew, and I see.

So to say that life has been busy is an understatement. So far, we have made it through without much more gray hair. No, those are not tweezers behind my back!!!

I will try to be blog more from now on. I know I have been slacking. BIG HUGS!!!