June 20, 2007

Loosing Faith!!!

It came to me today, in a startling realization, that I am loosing my faith.

My Faith in people, in Doctors, in Myself, and most importantly God!!!

In people:
because from what I have seen, it seems that there is more bad than good. People hurting people for the sake of feeling better about themselves. Trust, friendship, love, goodness, and morals have been thrown to the wayside for greed and lust.

In Doctors:
Because they have too many patients and not enough time. So patients are more like a number than a name. The Ill and the disabled are being lost in the system. They have to fight everyday, just to find out, in the end, that no one wants to help them. Why is insurance running the doctors, not visa versa?

In Myself:
Because not matter what I do, I cannot get my children the help and services they need. I am their parent and I feel that I am failing them. The Doctors and specialists say the children need this, this, and this, but the insurance, schools, and other agencies do not want to help them. I battle everyday and feel like I am never getting anywhere.

In God:
Don't get me wrong, I do believe in God. I am just loosing my faith in him helping me or my family anytime soon. I want to believe he will, but my belief candle is growing dim. Why would God make me disabled, give me three special needs children, and then not give me the help I need for them. What is the point of God letting me and my family go through any more hardship than what I already have been given? My heart longs for an answer!!!!

June 18, 2007

A Vent
About How Our Health Care
Treats Our Children!!!

I am sorry everyone, but I have had it with lazy Doctors and Crappy Health Insurance.

Wow, you say, what has caused this woman to go off the deep end?
I will tell you. This may be long, so you might want to pull up a chair!!!

Today, We took all three children to the doctors because they have been sick since Thursday. Turns out Matthew and Hunter have the Chicken Pox and a virus, plus Hunter has another sinus infection. Jessica has a virus plus a yeast infection. This is not the reason for my vent. The Nurse took good care of all of them.

Now for the Vent:

While we were waiting to be seen, I noticed that their Medical files had been left in the room. Being the Curious George, I decided to look in Hunter's file, since it was on top. As I am scanning through his file, I come upon his blood/urine labs. Probably about 4 years worth. Turns out as I am looking at them that he has had abnormal labs since he was a baby. Between 7 to 8 lows and highs on each lab. I was floored because the Pediatrician has always told us that Hunter's blood work was fine. I saw things like High Blood Sugar, Keytones in the urine, low CO2, low Creatine, High Red Blood cells, and ect. I know that it can't be good but I kept it in the back of my mind until I get home.

I look up, what I can remember on the internet. Everything I read was all bad. I finally look up Low Blood Creatine. Almost every site says Low Blood Creatine is indicative of Muscular Dystrophy or Old age. Since Hunter is 4yrs old, I doubt it is old age.

Now you have to remember, I was told a week or so ago that Matthew may have Muscular Dystrophy.

Our dear sweet Hunter has had health problems since he was born. He is unable to gain weight, His arms and legs are like sticks, he is not growing, he has AR, Gerd, and constipation, pain in his legs, shoulders, back, arms, and head, he has Apnea, and has Chronic Infections. We have been trying for years, to find out an answer, to why he has so many health problems. Doctors have always shrugged their shoulders and treated the symptoms.

I am not a genius, but if a child's blood/urine labs were so off for years. Wouldn't you want to investigate a little more. Wouldn't you think something was up. What is wrong with doctors. Do they not even look at the labs? Why is finding the answer and maybe giving the child the right medicine a problem. I trusted this Pediatrician. I would like to think this is an oversight, but it would have to be some hell of a oversight. What would of happened if I had not seen it. Would Hunter of never gotten the help he deserves. I am so mad I can't think straight. How dare they give this sweet little boy 4th rate care.

Ryan called the head Pediatrician of the practice and left a message. Hopefully He will call tomorrow and Ryan can talk him into helping us. He seems like a reasonable and caring man. I just can't believe what we have to go through to get decent care for our family. the sub standard care we get should and probably is illegal in some way.

Thanks for listening. Vent over!!!!!

June 17, 2007

Why Father's Day Means So much to Us!!!
(Why Ryan Means So much To me)

Please read the story, I know it is long, but it explains so much.

Along time ago, Ryan and I were the quintessential 21 century family. He worked and I worked. I took our 1 month old Baby, Jessica, to work with me because as Head Geriatric Caregiver I was allowed to. We were relatively well off. Three months later, I found out I was pregnant with my son, Hunter.

Almost from the start, I was sick. First high blood pressure, then Pre-Eclampsia, then Eclampsia. I had to stop working very early into my pregnancy. Hunter was born by by c-section and had severe health problems. We thought I would get better after the birth, but for some unforeseen reason I became even worse. After many months of the my GP telling me it was Post Partum Depression, I ended up in the hospital with a form of Hydrocephalus. While there, a neurologist examined me and told me that he was pretty sure that I also had Multiple Sclerosis.

After I was released from the hospital, I was given a Neurologist by my insurance. She felt there was something Neurological going on but wasn't sure what it was. The next 3 years, she basically bled my insurance dry and then was dropped by my insurance. All the while, I was loosing some of my ability to use my legs and feet, use my arms and hands, feel in my hands and feet, hear, and see. Not to mention, I had a lot of neurological pain.

During that time, I could not work and Ryan's family oriented company demoted him from his supervisory position and cut his hours to 16 hrs a week. All because he asked for two days off to watch Jessica, while Hunter and I were in the hospital. They had even approved him for the time off and he had just had an excellent review. We went from doing okay to doing poorly financially. We struggled to pay the bills and eventually went on Welfare, Ryan got a part-time job with Home Depot, and I got approved for Social Security.

Well, of course, the imaginable occurred. I got pregnant on our first vacation without our children, in five years. I saw specialists and had all the appropriate tests and screening. I had a perfect pregnancy and we expected a healthy baby boy. Matthew was born a robust beautiful baby boy. We were so happy.
Almost from the beginning, Matthew had problems with his blood sugar being low, he had problems eating, then the vomiting began, the screaming and fussiness, constipation, and he developed a rash all over his body. The hospital pediatrician said Matthew would be fine and sent us home. Turns out Matthew has a almost total protein intolerance, Acid Reflux, Gastro Esophageal Reflux, Chronic Constipation, Horrible Eczema, and problems reaching milestones due to weakness on the right side of his body. Our dream of finally having a perfectly healthy child was crushed.

About a year and a half ago, I started seeing a new Neurologist and he told me that he could see lesions on my MRI from 2003. He said he was pretty sure I had MS but needed to run some more test. This January, I had a major exacerbation, combined with all the evidence on MRI's and other neurological tests, I was
diagnosed in February with Secondary Progressive MS. In March, Ryan started giving me Betaseron shots, every other day, to slow down the progress of my MS.

Last Month, Matthew began having more and more trouble walking. We video taped him and then took him to see the head Pediatrician of his Pediatrician's office. The Pediatrician feels that Matthew may have Mild Cerebral Palsy, but because Matthew's walk is deteriorating, he may have Muscular Dystrophy. Matthew will be seeing a Pediatric Neurologist soon and will have a lot of testing.

Now you may be asking, why have I told you the story of my families life? The reason is, you would have to live it to see what I see.

Most men
(I am not saying all) would have left when they were faced with some of these challenges. Not our sweet Ryan!!! He has stayed with us through everything. He has grown and adapted to everything life has thrown at us. Every obstacle has made us stronger as a family.
Not only does Ryan go to work, he takes us to doctor/specialist/testing appointments, he does errands, he cleans, he doles out Meds, he gives me my shots, He takes over for me on my bad days, he cooks, he plays with the children, he helps with homework, he takes the children to school, gives the children their baths, and helps them get dressed. He is a disciplinarian but concedes and apologizes when he has been to harsh. He is willing to listen to others on child rearing ideas and try the new idea if it seems right. He respects our children's feelings and listens to them.
He is a loving father that wants the best for his family. He is more than I could have ever asked in a Father for our children.
I am not saying that he is perfect but as a father he is one of the best. I thank God for him every day!!!

June 1, 2007

Jessica and Hunter were accepted to Waldorf!!!!

Praise The Lord!
I received a letter yesterday. It stated that Hunter was accepted to attend Waldorf for Kindergarten.
I called this morning to find out of Jessica was accepted.
she will also be accepted to attend Waldorf.

I am so excited. This school is perfect for them.
They will be in small classrooms. The classrooms are also set up for children with sensory and motor skill issues.
They also have a Physical/Occupational therapist on the campus.

I can't wait until September.....