04-26-99

This date 11 years ago...absolutely changed my life. My son came into this world weighing 8 lbs. 1 0z...three weeks early. My world has never been the same.

My girls are amazing and I had them 22 months apart...dressed them alike...and relished in the thought of all of my dreams coming true through my children. I always wanted to be a mom. I always wanted a girl that I could dress in cute girl clothes with all of the accessories and to take shopping with me. I got all of that times two! I know that I talk so much about Raymond and I never want the girls to feel that this blog is only about him...but it is my way of keeping track of my thoughts. Words come so much easier for me when I write them down.

So back to my original thoughts:

Raymond was born and was given a perfect 10 on his apgar test. Yup...a perfect 10. I think I still have it written down on a paper in a box somewhere. He was this beautiful little red-headed boy that came into this world to complete me. I did not know that at the time...however. We were lucky enough to get one beautiful red-head...but 2...how lucky am I? That was all I could talk about the first night I had with him...his red hair, chubby cheeks, and the cutest hands and feet. By the next morning my world started to change. He would not wake up at all to eat. He was just happy to be sleeping all of the time. I remember the nurses coming in and wiping his face with a cold, wet, washcloth to try to get him to wake-up. He never cried. Didn't make much noise at all. They had taken some blood tests and some hearing tests, but the doctor did not let me know about all of this until after we had taken him home. She did not want to alarm me until she had more information to go on. He had jaundice just like his sister and was sent home in an incubator light box for his biliruban levels. I was worried so much about this because I did not want him to go through a blood transfusion like Kaitlin did. Her situation was scary enough as it was and here we were going through it again for round two. I had such a strong feeling that something was just "not right" with Raymond. Everyone kept telling me everything was going to be OK and we had already gone through this once, but I just could not shake that something was really wrong with him. He started having seizures much more frequently, but any time we would sit in the doctor's office waiting for another "episode" to happen...I would give up and go home. My best friend Diane was visiting and was holding Raymond and she had him in her arms for his first grand mal seizure. I immediately called his doctor and she sent us over to Children's Hospital in Denver for observation. By the time we got to the hospital she had made arrangements for him to be admitted instead of just waiting in the ER. I am so glad it worked out this way because he did not have another seizure until the next morning. Ray and I had gone down to the cafeteria to eat some breakfast and we had a beeper with us. We didn't even get to sit down and eat our food when the beeper went off. We ran back up to the ICU and the nurse that was looking over him had tears running down her face. She was the sweetest thing. She said they are trained to be so tough in these types of situations but she had never seen a baby have a seizure like that before. She kept apologizing to us for her tears. Apologize...there was no reason to apologize for being human. My heart was sad, but so relieved...FINALLY someone had witnessed his seizures besides me. I was not alone in all of this anymore. The next days were test after test trying to figure out what was going on with him. His body could not absorb B-12, which is protein, he spent the first 6 months of his life receiving adult size B-12 shots just to keep him alive.

We sat in a room with a metabolic specialist and a genetic specialist to explain to us what his future would hold:

In the first 6 months of his life we were told all of the following:

He would never walk

He would never talk

He would be deaf

He would be blind

He would require a special diet

His seizures could deteriorate his brain and brain cells

His life expentancy was only 5 years. Today we are celebrating his 11th birthday! I witness a miracle on a daily basis when I see my son. He smiles, laughs, walks, and runs. He has surpassed any and all of our expectations and continues to do so on a daily basis. He has taught me more about love and patience than I ever thought was possible. It is the simple things in life with Raymond that brings us so much happiness. We don't sweat the small stuff and we laugh at life together!

Happy...Happy...Happy Birthday Raymond!!!