Welcome to Daniel's Blog!

2007-07-09T15:30:00.000-07:00

Here you will hopefully find a very informative blog on dealing with the issues of Infantile Spasms (a.k.a. West Syndrome), Bilateral Perisylvian Polymicrogyria (a.k.a. Congenital Bilateral Perisylvian Syndrome), Cerebral Palsy, and dealing emotionally and physically with a child with special needs and his family members.

If you are new coming to Daniel's site, please take your time and look around. The information you get when you search Daniel's diagnosis is not pleasant. In fact, it is down right scary. But we must all remember that each child is different, each brain reacts to things differently, and that all the doctors with all the years of studying still don't know everything! They do indeed know a lot, but you can also learn tons of first hand experiences from other families who have traveled the same journey we are on. Yes it is scary, but I have found if you take it one step at a time, get as much information as you can, question everything, and fight for what you feel is right, you'll be ok.

That being said, we are very fortunate to have a wonderful support group of family and friends. We are blessed to have a world renowned neurologist that specializes in Infantile Spasms (Dr. Harry T. Chugani). We have also seen a well known doctor in Chicago who studies Polymicrogyria (Dr. Dobyns). We have a great hospital that we go to (Children's Hospital of Michigan), and wonderful therapists. Daniel attends Physical Therapy, Occupational Therapy, and Speech Therapy multiple times a week through Beaumont Hospital. On top of all that, he goes to an Early Intervention class through the Michigan School Systems. There are also many other "alternative" therapies out there, HBOT, Euro-Pēds, Conductive Learning Center, and Hippotherapy, just to name a few.

If you are searching the internet for answers because you just got a similar diagnosis for your child or family member, some good places to start are with the other families, besides ours, that are on the same, or similar road that you are on. These family's sites are listed on Daniel's Blog page. They helped me find answers along the way and I hope they help you also. There is also the Yahoo Group for Infantile Spasms. If you haven't looked into that one I recommend you do so immediately. It will put you in touch with the people out there that have lived this experience. We also belong to the Yahoo Group for Polymicrogyria which is an even a smaller world to belong to than Infantile Spasms. When you feel like you're alone in this world and are among the few that have these diagnoses, you can find someone to connect with in these groups.

I remember the pain of the unknown, I still have it. How does someone overcome it - or do we just learn to accept it? These feelings are still fresh, but the sting isn't as painful. There is hope, and things do get better. If you are just starting this journey - remember that! You will find a way to survive and make it through. Your child is still the little child that will always lay their head on your shoulder and look into your eyes and give you that awesome feeling. They didn't ask for any of this, but it is our job as their parents to help them through it. You will still have your dreams; they will just need to be adjusted. You'll wake up from the nightmare and you will just dream new, more fulfilling dreams.

You are not alone.

Again, welcome to Daniel's Blog and please remember to sign his Guestbook.
If you have any questions please feel free to email us. mspranger@wowway.com