Free Photo Opportunity!I am pleased to share with you several select photos that were taken by an amazing woman named Lynette Johnson. We were offered the opportunity to have Lynette photograph our family through the suggestion of a kind employee at Children’s Hospital. Please see Lynette’s organization, called Soulimation, which focuses on capturing wonderful moments of mostly terminally ill children and their families, at: www.soulumination.org Victor’s photos will soon appear on her website and she has offered to follow him through the years. THANK YOU SO MUCH LYNETTE!!
Victor Update:
He still has more seizures than we can 
track in a day. In fact, we stopped tracking them altogether because it
was a constant reminder of how bad things are. Victor is still on the Keto Diet but we learned this past week that his keytone levels are down so much, that he is close to being out of “Ketosis”. This is both good and bad. The bad is that somehow we have to figure out what has caused this. It may be related to the fact that we also feed him orally but we are not willing to stop feeding him orally.
So, we are hunkering down to an even more regimented feeding schedule. On the positive side, while Vic still has seizures and some are certainly more violent than others he is still somewhat stable. We haven’t had to rush to the ER! I feel that if he’s been able to stabilize at 
this level while we took two major meds away, that perhaps if we get him to where he should be again that things will turn around for him.
At the beginning of August when we first learned that Victor’s amazing school might be in jeopardy because of a Federal law re: the definition of Natural Environments, I immediately picked up the phone and asked many questions of the school’s Director. It then was quite obvious to both Gary and I that we had to take a stand and fight for Vic’s school! Victor currently receives in-home therapy through an early intervention program called, The Boyer Children’s Clinic (www.boyercc.org) has been operating since 1942…well before Early Intervention programs were recognized and well before Natural Environments; it is a truly remarkable place! Boyer is on of the four centers within our county that serves over 80% of children who have special needs. Boyer offers both in-home therapies and a preschool program geared toward kids with special needs. It is so similar to any other preschool with Circle Time, a gym, a playground, daily activies but the staff are so well trained and the environment is so loving and understanding that any child/parent immediately feels connected with the community and does not have to focus the child’s deficits as so many would force us to do.
Anyway, both Gary and I have become so involved with this issue that we have formed a group of parents called the League for Infants with Special Needs (LISN). For more information on the issue with Victor’s school, please visit our blog at www.li-sn.blogspot.com. You may also send any comments to us directly at: li-sn@hotmail.com.
THANK YOU FOR YOUR SUPPORT!
