Summer 2011

Hi everyone,
We are half way through the summer and it feels like it is going by so quickly. Daniel and Dove started Summer school and they are both liking it. They are going to a new school this Fall and this gives them an opportunity to get acquainted with some of the teachers and students now. They are going to Escambia Westgate School.  It is going to be a bit different, but I think he will do well. Dove seems to fit right in and is making herself right at home. Daniel has missed a few days already due to seizures that are happening so late in the morning that he is unable to get to school. I am hoping that this trend will pass. He is still having about 2-3 tonic/clonics(gran mals) a week, with myoclonic clusters on other nights. He also has started having partial seizures again during the day. Not very often, but still seems weird to see them again after not having them for a few years. Things are always changing. On a brighter note however, his seizures are not lasting as long as they used to. He FINALLY got Oxygen approved for use at night, and when he has a seizure we put it right on. It immediately started making a difference the first time. We have noticed that his seizures go from 3 minutes to around 8min. now, instead of 8-15 min. I know that still sounds bad, but actually it's quite an improvement! 
He is also being fitted for a Bi-pap machine. We are just waiting for the doctor to see his results and find out if he will need to try using it soon.  His original sleep study found 5-6 Apnea episodes and 69 Hypopnea episodes during one night. No wonder he's tired all the time! Poor thing. I hope he will wear it and will keep you updated on that!

Dove is still really good at alerting. She is alerting about 45 min. to an hour before his seizures at night. We just have to make sure we are paying attention.  She is still very attentive to him when he is seizing, and will lay with him afterwards.

I would like to switch gears and talk about the Ipad! Daniel was blessed to receive an Ipad from an organization in Miami. When it came I started looking for apps to put on it. This was my first time with one, so I had no idea where to start. I posted on FB to other parents for suggestions and got several. One suggestion in particular was very helpful! there is a website called Apps For Children With Special Needs(A4CWSN on FB). This is a great site. Gary James is the founder and he had hundreds of videos of apps for children with special needs. You can watch him go step by step on an app and see if it will be right for your child. I love it. He was so helpful in getting  me started in the right places! There are some very cool apps out there! Fun and educational together! Check out his site! There is an campaign going on right now to raise money to put 50 Ipads in the hands of 50 children, one in each state in the US. The link ishttp://a4cwsn.com/ipads-in-50-​states/ . I hope you will check it out and help out. Daniel has made some great improvements in the self care area with some really fun apps! He loves it. I hope to keep adding more as time goes on. The other great thing about the FB page for A4CWSN is that there are great deals and programs and giveaways all the time! I would highly recommend becoming a friend of A4CWSN and participating in the site. You will get a lot of ideas from the developers, parents, teachers, etc. It is a great place to connect with people who have children with special needs. It is a wonderful community that is doing a lot of good!
Thanks for stopping by and I hope to keep you updated on Daniel and Dove, and Daniel's progress with the new changes.
Take care,
Kim