Hi. My name is Lori and I am Alex's mom.

Alex was born at 24 weeks gestation. He was an emergency c-section because he was double footling breech. His twin sister was born seconds after him.

Alex weighed an amazing 1 pound 1 ounce. I was one of the nurses who was there when he first emerged into this world and I am grateful for that every day. Not a day goes by that I don't feel like his mom.

Sometimes I forget that Alex was ever adopted. I've never been without him and he has never lived a day of his life without me. Alex's sister died shortly after birth. Alex had grade IV bleeds in his brain by twenty-four hours of life. He was on mechanical ventilation for a little over a month. He was on insulin drips, dopamine drips, and was literally wrapped in saran wrap because his skin was so fragile and transparent that we couldn't keep his body warm. He underwent surgery by a month old when he was just over a pound to close a duct in his heart.

When I left work prior to his surgery, I did not think when I came back that night that he would be there. But he was. Many doctors had approached Alex's birth mother about withdrawing ventilator support and letting him go...she refused. Another blessing I am grateful for every day.
 
Slowly but surely, he began to gain weight and made progress. He still had many days that were touch and go but he was such a fighter and still is. Two months after birth, he had surgery on his eyes. Progress again was going well. Then he started to take bottles and came off oxygen.

Then one day, I came home from work and asked my husband if I could call the social worker that was working on his case and ask if we could be Alex's foster parents. I knew Alex would never get to go home to his mother due to some of her social issues. She was a good Mom ... she gave him life, she never gave up hope, even when the doctors wanted her to, she visited him every now and then, and then she let him go knowing she could not take care of him. To my surprise and delight, my husband agreed.

The social worker was delighted because she could not think of a home to place this severely medically fragile child. She told me that she would like to place him in a home that would want to keep him forever.

I told her that I wouldn't have it any other way. To this day I still call Alex my occupational hazard. Incidentally, Alex was adopted on May 24, 2006.
 
Two weeks after coming home, Alex''s retinas detached and we were off to New York for surgery. He did well and we continued to plug along. When he was a year old we noticed he was doing these little movements that we called "crunches". We were told it was just his reflux and he was uncomfortable.

As time went on the crunches started to have eye fluttering with them. We went back to the doctor who said it sounds like he is having infantile spasms. Sounded harmless enough. Went to a neurologist who did an EEG and an MRI and said that he is having constant seizures. Seizures while he sleeps, seizures while he plays, having seizures ALL OF THE TIME. Turns out infantile spasms are one of the hardest controlled seizures and can cause the most damage. We were told that they would like to try him on a very dangerous steroid that he potentially could die from. We were devastated. But again, Alex pulled through. The steroid didn't work however and the seizures continued. At one point Alex was having over a hundred seizures a day. The problem with this is that he couldn't develop while he was having all of these seizures.
 
Alex has been an up and down whirlwind of successes and losses. He tries so hard to do things. It breaks my heart sometimes to watch him. He knows what he wants to do but his brain won't let him do it. He gets very frustrated. When he was about two and a half we were told that now his MRI showed the devastating PVL. The only good thing was that his brain was not shrinking.
 
Currently Alex has had some success on the medication Clonopin and his seizures are decreasing. But as the seizures decrease, so has his ability to hold his head up, sit up, or try to walk assisted. We don't know why as the seizures decrease so are his skills and no one has any words of wisdom to offer us. It's very frustrating and heart breaking. We have recently enrolled him in hippotherapy but are not sure how much this is helping him. We had him evaluated for intensive therapy and were told that he would be a good candidate. We have both cut down on work to care for Alex and of course would do whatever we have to for him. We would appreciate any help that there is out there as we are becoming more financially strapped as time goes by and his needs increase. Please consider us for any help that can be given. We would love for our Alex to have the best chance he can have. He deserves so much more than life has offered him.
 
Thank you.
Lori, Anthony, and Alex

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