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| Nico's Story Update |
| Nicolas at 11 months old |
| Update...May 20, 2003 Nicolas is now about to turn 19 months old. He has come along way since he was diagnosed with Infantile Spasms. He has been seizure free for a year now, his last seizure was May 3,2002 (four days after starting Sabril) He was on Sabril for 7 months. (The last two months he was weaned off it.) He has been medication free for six months and has made alot of progress in his developement over the past year. His gross and fine motorskills are greatly improved. He began sitting up unassisted at 11 months. The above picture of him sitting in the grass is the first time he sat alone. He was pretty pleased with himself. He began pulling up and walking along furniture at 13 months, and took his first unassisted steps at his brother Kyle's birthday party, on March 22, 2003.(16 1/2 months) He now walks freely all over the house.( Yes, allowing him the ability to get into EVERYTHING) He has had a therapist work with him weekly since his diagnosis to help him improve his gross and fine motor skills, he has been doing really well and she only comes once every two weeks now to monitor his progression, and help with ideas and things to do that will continue to challenge him and encourage him to expand his capabilities. His eyesight and hearing have been rechecked by specialist since he has been off his medication, and they appear to be fine. Our only concern is that he doesnt really talk , he does make all the sounds baba, mmmm, grrrr, etc. The only thing he says off and on are Yeahhh, and has begun to repeat DaaDaaDaaa, but has yet to really say anything like mama, dog, etc. He is a beautiful little boy, very outgoing, who smiles alot, and is very playful. He loves to demonstrate his skills, and beems when you give him praise. A speech therapist will begin working with him throughout this summer. He has already evaluated Nicolas and thinks that there is a great possibility of Nicolas overcoming his speech delay. Other than that, he is a very energetic, curious, busy busy little boy that keeps us all hopping. Overall, there seems to be a 3-4 month developemental delay (depending on what he is doing.) But given that he lost 6 months and had to start all over, I think he's doing great relearning and catching up. Each day that passes, he is perfecting all the skills he once lost, and new ones he has never attempted before. We are extremely pleased with his progress.In the beginning...all of the information that we researched regarding Infantile spasms/West syndrome was very upsetting, as in most situations, the outcome was very bleak. There was no way to know what the outcome would be for Nicolas. I have been reluctent to update this site as I was worried if I were to, that there might be a chance that he would begin having the seizures again, and my optimism would be crushed. It has been long enough now that regardless of what happens now, I feel that the worse is over. He is making progress each and every day that passes, and for the most part, everyone seems to feel that by the time he enters school, any areas he is catching up in will be overcome. I have never been so scared, felt so helpless as when he began having IS and we were trying to help him. Our family and friends have been so helpful, everyone has and continues to interact with Nicolas in a way that promotes a positive and encouraging atmosphere. He is treated no diffrently than any other children. So as always, we continue to live each day as they come.Enjoying every little or big milestone that Nicolas accomplishes as he grows. |
| 16 1/2 months |
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