It is hard to believe that a week has gone by since our appointment at John’s Hopkins. A lot has happened in the last week.
We took Gabriel to the hospital today for a follow up EEG. The Dr. at Johns Hopkins recommended this to compare to the EEG from May to see how the diet has worked over 6 months. It will also give us a baseline before we start pulling meds. He had 2 long seizures in his sleep. Not glad that he had them but we have been trying to describe these to our doctor here in Kansas City since July. So we are glad that there is an EEG that caught them, so he can see the brain activity during them.
We are continuing to explore all possible resources for Gabriel. He is having lots of fun at therapy. It is great to see him practicing the physical skills of balancing, pushing, pulling, walking up stairs and having success! Each week we get good tips for things to try at home. I hope to get some pictures to share on the blog soon.
We are working with our local school district as well. We did a baseline evaluation in April, in which he blew through all the developmental areas with ease. At the time they seemed confused as to why we were there. When he went last week he passed 4 of the 10 areas. They recommended further evaluation in 6 areas including speech articulation, attention, fine and large motor and a couple others. While none of this surprised us, it was still disappointing to have a clear comparison that showed his slowed development. Thankfully he is still doing well in things like letter recognition and matching, cause and effect. I can also tell he continues to learn new words and basic science concepts. So while he is not where we want him to be, he is continuing to develop in some areas and we have plans in place to help where he is not.
I found a devotional book on amazon a few weeks ago that has been so helpful. It is called A Different Dream for My Child. The title grabbed me right away. I liked it more than the other phrase “a new normal” that i hear and use a lot for our lives. A reminder that I can still dream for Gabriel’s future, while accepting the new normal has brought a nice balance to me internal dialogue. The book contains stories from other families wrestling with a variety of diagnosis, along with thoughtful questions to process and scripture. Each time I read it I feel a little calmer, a little less alone and a little more hopeful. I am attaching a link in case anyone reading this would like such a resource for themself or someone they care about. They also have one for special needs families.
So while my dream for Gabriel always contained things like drivers licenses, college, marriage and career….now it is simplified…….safety, happiness, love, self confidence. The two dreams are not that different I was just filling in the blanks with what I thought would be a good life. While I am not giving up on any of the things in the first list, I am not focusing on them as whether or not we have given him the tools for a successful life.