Life with a Cerebral Palsy Teenager take 2

Well, this will be my last entry in my blog. I hope that my life experience with dealing with Lupus when pregnant to Life with a Cerebral Palsy child has answer some of your questions. If not I hope that this has been interesting information. I hope that you will not have to experience any of these situations, but if you do I hope you will remember some tof the things I talked about. This is a current picture of my son, Cameron.

Life with a Cerebral Palsy Teenager

I am not an expert in this part of Cerebral Palsy teenager, mine is 16 and things are changing for him about as fast as I can type...maybe faster. As a tween he became more aware of his deficiencies so as a teenager trying to fit in is even harder. He doesn't want to be considered a kid with a handicap, but he doesn't feel like he can fit in. Encouraging you child to be part of High School activities is extremely hard, they don't want to let down their teammates but it's important for them to be involved in something. With this in mind we encouraged our son to attend all of the High School football games. We thought it would be best for his self-esteem to attend these games without us. The one time that we did attend he knew so many kids I was shocked. I know that in his own way will make his mark in high school, he won't be the best athlete, a drama geek or a math genius, he will be the kid that everyone will remember trying his hardest and never let his disability bring him down.

Life with a Cerebral Palsy Tween

Toddler years was hard!! Tweens is harder! This is the time of every kids life when they realize that they are not like their parents and want more independence. The problem with kids with CP is that they still need to have their parents help them out. As a parent you want to teach them to be independent, but you know that they can not fully understand what it means to be responsible for their own actions. Now, I know Tweens with no challenges have these issues with their parent, the difference with mild CP kids is that it's more noticeable by their peers and they can easily be minuplated. Always keep in mind that CP kids do understand it just takes them longer.

Life with a Cerebral Palsy Toddler

Toddler life for a preemie is not that much different that your average toddler, they are just smaller. Preemie's are slower than the average toddler, I was told by the doctors that for every month early a child is born they are about a year behind. For us, that meant that Cameron could be 2 years behind in his learning. In some area of learning this is true, in others, he is at the same level as his peers. I would suggest that when it's time for your preemie to start school, don't always listen to the teachers. Even though they are saying it's the best for your child and it your heart you know it's not, FIGHT the system. The biggest mistake I did was to put my trust into the system and allowed my son to become "pigeon hold" in his learning. Parents have rights to fight the school system, no matter what their learing skills are!! The following link is an article two law students from Duke Univeristy, they go over the rights parent have when they have a child with a learning disability. http://www.law.duke.edu/childedlaw/childrenwithdisabilities.html

Life with a Preemie

As Cameron got older we found that it took him longer to learn how to crawl, but once he did learn there was no stopping him. He was just like any other child that figured he could move when he wanted to and not when his parents moved him. He learned to walk on his own when he was 2. He was slow and unsteady but he was able to do it, the therapist were amazed. He was even riding a bike by the age of 4. Riding a bike is one of the best ways to stretch your leg muscles, which is very important for kids with CP. Though the therapist were very helpful, they generalized the CP condition; therefore, were not always correct in their predictions for Cameron's future.

Preemie Baby & Cerberal Palsy

Three months after Cameron came home he was diagnosed with Cerberal Palsy (CP). This disorder affects the brain that effects one's motor skills. Preemies are at high risk to have this disorder because they are born early, some of their organs will not fully develop. For Cameron it was his right side of his brain which effect his left side of his body. For mor information about how this disorder detected, please see http://www.nlm.nih.gov/medlineplus/cerebralpalsy.html website. We were fortunate that Cameron was diagnosed at an early age. We were able to have him start physical therapy early in his life. Before he started to walk we were told that he should have a orthopedic brace made for his left leg. This brace helps his leg muscules for stiffening, which is one of the side effects of CP.

Preemie baby - More days in hospital

As you can see from the pictures, preemies have a rough start in life! As the days go on and you feel like you will never get to have your baby at home...the day finally comes. 96 days later for us, and 4.5 pounds later I was bringing home Cameron. We had gone through so much in those 96 days, but not has much as others. Cameron did end up on a ventilator for breathing about a month-n-half into his stay for about 3 days. Most preemies are on a ventilator the whole time they are in the hosptial. Oxygen is always flowing in the incubator so that they don't have to exert so much energy. In this picture you see my hands with a bottle which really looks like a vial, attached to a long tiny tube, this was Cameron's feeding tube that was inserted down his throat so again he would not exert to much energy. He had this for 2 months. By the time he came home he was drinking 1-2 of these bottle every 3 hours. He was health when he came home, but there were long term effects that we were unaware of until he was six months old......

Hosptial stay for Preemies

As the days turned into weeks and the weeks into months, the visits to the NICU will become so routine...don't despair the day you get to go home with your preemie will be soon! For me it was 96 days, (3 months and 6 days) later my son came home. But the days leading up relief is extremely hard. The standard routine for preemies is that they have blood tests several time a day. Because their veins are so small, the nurses will pin prick their heals and take just a drop or two of blood, which for preemies is a lot of blood. There is a problem with the nurses handling preemies to much, they can break a bone if they are too rough...which is exactly what happened to my son. Preemies have rickets, which is descriped as - Rickets is the softening and weakening of bones in children, usually because of an extreme and prolonged vitamin D deficiency, found in the Mayo Clinc at: http://www.mayoclinic.com/health/rickets/DS00813
Preemies are small not stupid..they no what they like and don't like even at a very young stage of their life. My son didn't like have blood taken, so when you would touch his feet he would get very agitated and move around alot. One of the nurses got a impatient with him and tried to make his foot move the way she wanted it to and broke his femur in half. Believe it or not they actual put a cast on his leg...see picture. This is actually the 3rd cast they put on him, which is a body cast because he wiggled out of the other two which only cover half of his leg. He was in his cast for about 3 weeks. And when the were cutting off the cast they cut his let, so now he has a scar as a reminder of his broken leg when he was only 2 months old!!

Preemie babies First day in the Hospital

All preemies are immediately put into the NICU, Neonatal Intensive Care Unit, were it's full these lights and buzzer and people are hovering over a tiny baby. As a mother, all you want to do is to see and hold your new born, but instead you are greeted by doctors and nurses telling you when you can come and see your baby and maybe, just maybe you will be able to hold your child, but more an-likely you will not. Don't worry in time you will!! Most preemies are put on oxygen, but for my son with his lungs fully developed, because of the Predizone, he was not. He was put in an incubator with flood lights shinning down on him to keep him warm. He also had all the buzzers connected to him. At 29 weeks babies have not learned how to suck, so the nurse had to teach him how to suck by giving him a pacifier immediately. A tiny tube was put down his throat so that the nurses could give him milk. This was also done so that he would not burn calories and loose weight that he didn't have. After a week of being in the NICU, all of the lights, buzzer and doctors and nurses become a comfort zone for you. Remember all these things are here to help your baby!

Premature baby

From my last posting you saw a picture of my premature son. Yes, this picture is real! and yes it's not flattering, but when it's your baby they look beautiful! Like I said earlier, because of the Predizone, his lungs were fully developed. This was unheard of, a premie this small and not having to be on any oxygen. Doctors and EMT's from around California were coming to UCLA to see this amazing child. My son was well known and he wasn't even a month old. The long journey to weight gain and coming home had started....

WEB HOME PAGE

BACK TO MY WEB HOME PAGE

Advantages to Heprain and Prednisone

There are very few advantages in having to take these drugs. The Heprain was used so that my blood would stay thin, this way my body would not recognize my pregancy as a invader trying to hurt me. As for the Prednisone, there were more advantages, but not necessarily good ones. It kept me from catching a cold or the flu, but it made me eat alot. The only real advantage to taking this drug was that it helpd develop my baby quicker and stronger. Even though I gave birth to my son at 29 weeks and he weight only 1lb 3oz, his lungs and organs were developed as though he was a full term baby.

disadvantages of Heparin and Prednisone

So...at 15 weeks I started to take Heparin shots and 60mg of Prednisone, which is a VERY high dosage! I had to get blood work done every week and to the doctors. With the blood work they would check my white blood cell count and if they were normal, I would be able to lower my dosage of Prednisone, in the 15 weeks of takin the drug I only lowered the dosage once for a week and it was to 40mg. I would not recommend taking Prednisone if you are trying to lose weight, it makes you extremely hungry all the time! In 15 weeks I gained 30 pounds. My face was so swollen that I didn't recognized myself when I saw my reflection in the mirror, I stopped looking in the mirror. My hair grew fast and became very dark, I'm a burnette and I looked as though I had black hair.

As for the Heparin, I was taking 2cc shot twice a day. My blood was so thin that if I cut myself I would bleed as though my blood was water. I was what the medical field would call a Hemophiliac.

So there I was, young and now 9 weeks pregnant...my life was about to change in more ways than I expected. Once I was was diagonsed with LA, I was told that I would have to see a specialist for the duration of my pregancy. So off to UCLA I went, now 15 weeks pregnant, I met with Dr. Tavish, a man of few words, but when he did speak you heard what he said. He immediately asked my husband and I why we were coming to him so late in my pregnancy? Late?! We had no idea what he meant by that, we had followed the medical red tape procedure. We thought that we had done everything right. Only to find out that I was at a high risk of a miscarriage again because we didn't see him before I got pregnant. We reminded him that we didn't know I had LA until after I was pregnant and the delay of seeing him was do to another Doctor's incompentance..a possible law suit was in the making. 15 weeks into a pregnancy is very dangerous of women with LA, our bodies have already started to attack the placentia, like the video game Pac Man eating the blinking lights. Immediately I was put on a regiment of Predizone and Heprin. The Predizone was to make the fetus grow and gain weight at a rapid pace. The Heprin was used to make my blood thin, to trick it, so that the fetus and placentia would not be considered the enemy.

Until next week..when I talk about what the Predizone and Heprin did to my fetus and my body.

What is Lupus?

What is Lupus?

What is Lupus? According to: http://www.niams.nih.gov/hi/topics/lupus/ff_lupus.htm#b website, Lupus is
the immune system is designed to attack foreign substances in the body. If you have lupus, something goes wrong with your immune system and it attacks healthy cells and tissues. This can damage many parts of the body such as the:
Joints ,Skin, Kidneys, Heart, Lungs, Blood vessels, Brain.
There are many kinds of lupus. The most common type, systemic lupus erythematosus, affects many parts of the body.

Who Gets Lupus?
Anyone can get lupus, but it most often affects women. Lupus is also more common in women of African American, Hispanic, Asian, and Native American descent than in Caucasian women.

What Causes Lupus?
The cause of lupus is not known. It is likely that many factors trigger the disease.
Some have said that every woman has the Anti body for Lupus, but it is only triggered when something tramatic happens in their life (i.e. a bad breakup, pregnancy). But why some women will have a flare up and others won't is still the biggest mystery.

My Story:
As for me, I never had a symptom or even knew that I could have the Antibodies for Lupus until my third pregnancy. I have what the doctors call Lupus Anticoagulant Syndrom, which means that you don't have any of the above mention symptoms, but when your pregnant your body attacks the placentia as if it was a cold to the point that all life is terminated. I found out the hard way!! I was in my late twenties and pregnant for the 3rd time. My previous pregnancy which was seven month earlier, ended at 5 month and the one before that was 13 months earlier ended at 6 weeks. So at the early stages of my 3rd pregnancy, a series of test were done and one of them was a siffulus, but the thing was I had no symptoms of that either!! We 2 days later I get the test results and I had a postive-negative reading for siffulus...what did this mean? There was something wrong with my blood system...so off I went to a Rheumatologist for more test. And there I was 6 weeks pregnant diagnosised with Lupus Anticoagulant Syndrom..what would this mean..I was still unaware of the implications that any of this meant....