Friday, April 23, 2010

Where to begin???? First, Sera had her MRI this week. I have the report in my hand but we haven't been back to the Neurologist to discuss the report. We have some experience in this area with Jacob. I almost started to laugh when I read the report because Sera has some of the same brain malformations as Jacob. Here is what I do know and understand from the report. Sera has an open lip schizencephalic cleft(same as Jacob). It is basically an area where the brain just did not develop. She also has septo-optic dysplasia, which is a group of malformations, that affects the vision. There are a few things listed which I don't understand. All of the abnormalities are on the left side of the Sera's brain, where with Jacob they are on both sides of the brain. With all of these brain malformations she has a risk of developing seizures, developmental delays, and cognitive delays.

The last two weeks have been eye-opening for me. Between realizing that we are now the parents of another child with significant needs(who we love dearly) and beginning to deal with the sensory issues of two other kids, my brain has been processing ALOT. We were aware of Sera's disabilities and that there was a good possibility she had some other issues but until you can get adequate testing you are really flying blind. Since we have decided to adopt children with special needs we go into all our adoptions knowing that we probably will not know everything up front and we are OK with that.

I have decided two major things are going to have to change. First, we need a professional to help us work out a plan of attack for our sensory kids. I am completely lost in this area(just got some books from the library today). Second, I need to change the way our house runs. By nature I am not a scheduled or routine person. I am more the fly by the seat of the pants, decide to do something at a moments notice type person. With two kids who don't transition well/overwhelm easily and two with significant global delays I know it is in the best interest of the kids to have a strict schedule.

So that's were I am right now! Trying to figure out a schedule that will work for everyone AND looking for an awesome occupational therapist who is trained in sensory processing who takes our insurance.


1 comment:

  1. Hey...great to see you today! Remember our sensory speaker next month...May 6th! If she doesn't take your insurance, I know she would help you find someone! We love Kraska and assoc but alas, our insurance doesn't cover them...I'm willing to give up several things to continue going though but haven't had to yet....thank you Lord! She had a class(more like a support group)for us on Thursday was so good to have other parents with kids that have sensory issues...the stories were so similar and even very funny...we laughed alot and that helps too! The OT's would give us info and they had a speaker who has an autistic son who specilizes in special ed/behavior stuff....we were discussing how to tell the difference between sensory and typical behavior...well, I could go on but you can definitely find help out there, we will be praying that God finds you the exact folks you should get on your team! :)