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....