My Story In Learning I Have Cerebral Palsy

July 24, 1993, Baby Boy Taylor was born 7 weeks premature at 4 lbs. 8 oz. and 16 inches long. I don't know what he was thinking, but I guess he could not wait to see his new world and meet his parents. I was able to see our Angel real quick before they took him away. With such emotion, I began to stroke Taylor's head ever so gently with my finger tips. With tears of joy and trying to calmly speak out, "Hi Sweetie," as I gave a gentle kiss from my warm lips on Taylor's head with endless strokes. I could sense that Taylor knew of all the loving that was coming in his new world. I am sure his first thought was that life was going to be grand. Taylor was then taken quickly to be tended to as I said, "Love you little guy."

Now I was thinking? Taylor is probably pondering in where his temporary home is going to be? Hmmm? Is he going to like it? His own little cozy spot in a room full of other little ones in their own little special homes and spots. Okay, he will be okay. Oh, but wait! One thing though. He will lay there and say to himself "Hey, something is not right here, my feet don't look right, they turn inwards." Well, Taylor was born with a deformity to both feet called Clubfoot. At delivery, he was delivered vertex, but was noted to have breech tone keeping the legs up and flexed at the hips with both feet at medial deviation position deformity.

Due to being born 7 weeks premature, Taylor had to stay in the hospital for awhile. He was just too tiny and needed to put some weight on. He had to have a special light on him for a day because he was a bit yellow in color. I guess you could say, he was tanning under a sun tan lamp ... tehetehe! He also had to have help with his breathing for seven days and have all these tubes and wires hugging him. I was discharged the day after Taylor was born and went to see Taylor every single day. One day was very special. I was able to hold Taylor for the first time in 7 days. Taylor was not able to open his eyes yet, however, I felt Taylor's warmth and love from his heart connect instantly upon being in my arms and I knew he felt warm and safe.

Taylor had family visitors for the very first time. His Grandma and Grandpa Tracy. What a special moment that was. They drove 6 hours from Pahrump, Nevada. Grandma and Grandpa Tracy were full of joyous emotions and were there for Mommy and Daddy giving the greatest support ever along with many blessings.

Days went by and Taylor was starting to do really well but was still under weight. Eleven days later, Taylor was to be moved from Martin Luther King Hospital in Anaheim, California because there was no room in the prenatal unit for him to stay and he was doing a lot better. He was transported by ambulance to La Palma Hospital in La Palma, California. He was with another little baby and in a nice cozy room full of clouds and rainbows. What a relief! It was much more quieter as the other hospital is much more active. The nice thing about the room was, the light was always off. Taylor was still in a special covered bed for a few days, then one day they put him in an open bed. Wow, you could really tell Taylor was more content! There was much more contact with Taylor now that he was in the open bed. I did a lot of feedings with bottle formula as I could NOT do the breast feeding. I was so uncomfortable with it. I gave Taylor a bath for the first time and I was so nervous because he was such a slippery little guy. There were many days and nights of rocking Taylor to sleep and diaper changing. It was great that I was able to this. Many parents are not given the opportunity to come to the hospital to practice.

That special day came. The news that Taylor was able to go home. Hooray! Oh, what a joy! It was little scarey though as in how I would handle such a tiny bundle for the first time. Let me tell you, I did real good though. Those little tiny steps they call baby steps, day by day, really do work.

Here we go. No Place Like Home! Beautiful day. Sunny, blue sky and smiles on Taylor's face. He was having a hard time adjusting to the brightness outdoors, however, the glow upon his face was ever so radiant. His eyes just glossed like jewels. Precious! Taylor had to come home with a monitor hooked up to him for safety measures to monitor his heart and breathing. However, the the monitor was returned early as there were no complications and Taylor was doing well. Here we are. Home at last!

My own bed. Ewww, how cozy.
Taylor

Seven months had gone by and Taylor's eyes wanted to go a little funny. His eyes went criss cross. He went to an Ophthalmologist to have his eyes looked at and was diagnosed with Strabismus.

Taylor's had a first visit to an Orthopedic doctor. The plan was to cast his feet to see if correction could be done to his clubfoot with straightening and positioning.

Taylor with both feet casted - 7 months old
Taylor's First Casting

It was not a success to Taylor's left foot, but somewhat to his right. At the age of 11 months, in June 1994, Taylor had his first surgery. He had a Postermedial Release done on his inner left foot complete with pins and it was placed in a cast. His right foot continued to be casted. The casts came off and the left foot looked to be in good shape, but the right foot was not. The doctor felt Taylor had to have the same surgery to his right foot. At the same time, he was scheduled for eye surgery also to correct the muscles under his eyelids for the crossing effect. His right foot was casted after the surgery and upon removal, the doctor was pleased with the results. Now, time was to take it's course.

The eye surgery was a success. Taylor was to start to wearing glasses to maintain strength to the eye muscles. There were problems in finding a pair as there was not a lot of glasses in the market for babies. The pair he did get were on the big side. Taylor never had problems in having to wear them other than when he would throw a tantrum. He would wing them off across the room. Yes, a little Rugrat! Other than that, Taylor loves to wear them. He loves being called Mr. Taylor and Mr. Professor.

My First Pair Of Glasses At 18 Months
Taylor

Taylor left eye is on the weak side and at times, likes to wander.

Days continued in Taylor being happy and content. However, there was some concerns. Taylor did not make any attempts to crawl and always just scooted around the house without bending his knees. He always tightened his legs and would put them in criss crossed position. Off to the Orthopedic doctor we went, but this time, to a clinic at the hospital where there are other doctors present during the appoinment for additional recommendations.

There was a great deal of concern at this point. The activities and sightings were explained in Taylor's daily routine and the doctors seemed so very different and quieter as to other visits. They were more serious and the sign of concern was written all over their faces. Then the pause word, 'Ahhh' was released from the doctors lips. My world crumbled from the heart tearing news. At the age of 2, Taylor was diagnosed with Cerebral Palsy - Spastic Diplegic Cerebral Palsy. Spastic meaning increased muscle tone called Hypertonia (stiff muscles). With the burst of tears, there was silence in the room. Taylor had a bad feeling of something happening in the room and was very confused that something was not right, however, he just kept on smiling and gabbing away.

It was a sad long drive home. Things were not the same at home for sometime. There was a lot of sadness, tears, prayers and blessings. Once the sadness and emotions were gathered as time went by, all was in order to some extent. It was time to pull together and cope. Stayed strong as possible to make life happy and content.

September 1995, Taylor had surgery to both his legs in the attempt to correct the tightness. He had Bilateral Hamstring Lengthening in the back of both his legs and in the groin areas. He was casted all the way up his legs with bars placed in between which were removable.

Taylor in full leg casts with removable bar - 2 years old
Taylor's Leg Casting

The doctor was pleased with the outcome and the tightness with the legs crossing had appeared to be in under control.

As time went on, Taylor's legs started to get tighter again and severely crossed. His feet severely point inward and drag along behind him as he walked in his walker. It was discussed some surgeries may be in the works as time went on, but with the greatest hopes and prayers, you hope this would not be the case. There has also been talk of possible surgery to his hips and legs sometime in the future and was discussed with several doctors.

On March 25, 1998, the day came where the decision had to be made. Taylor needed surgery to his hips and legs. His hips are not located in the sockets correctly. They will need to cut away some of the bone and realign his hips. Taylor's knees turn inward making his legs and feet turn inward in which cause the muscles to pull in tightness. He will have some knee rotation and will have surgery to his ankle areas along with pin inserts in the lower leg areas for added support.

It was decided to go ahead with the surgery and not put it off any longer. The shed of many tears along with much pain. I know when Taylor becomes a grown man and maybe has some kids of his own one day, he will understand some of the pain and understanding we are feeling for him right now. I am sure oneday, Taylor will understand that of all these surgeries and procedures, it is what is needed for him to excel in life to reach his goals and the dreams for him to maybe walk one day on his own without assistance.

With all the trials each day, each step, Taylor has changed my life for the better. Taylor has brought out strengths in where I had no idea whatsoever I carried. I myself always thought to be somewhat of a weak person with strengths in the wrong places such as not being able to handle the difficult situations. I remember the times when I thought and spoke of situations as to what I would do if I was given a child with a disability. I used to think that no way or nor could I raise a disabled one. God proved me wrong alright! I proved myself wrong! To me, this is the greatest of my lifes blessings in have being chosen and given life and a new day to raise my Angel.

Emotions and tears will always run in my life as to the pain is always carried with a special love as well. They say time heals all wounds, however, emotions are always there. I am not asking for the pain to go away or the emotions as for this is what surfaces my strength and I give much thanks to God for that and my given son Taylor. Sure, I have prayed endlessly for God to give me strength, but I have now learned that it is not a possible task for God to do as we have to give our strength within and seek them.


Mom Holding Child


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