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Thursday, February 4, 2010

He is back to having seizures

He only had one seizure yesterday - but today he had four- he goes tomorrow to Rochester Mayo for a 24 hour EEG study - we are hoping for good results - he use to have slow brain waves and they said that was common among children who have delays and are on medication. Now since he no longer takes Toppamax and a less amount of Vigabitran we are hoping for improvements.

This Saturday we will drop down to 500mg of Vigabitran - 250mg in the morning and 250mg at night - we might have to increase his generic Keppra - we will have to play it by ear.

He receives additional PT at a center that is located about 60 minutes away (we pay out of pocket for this therapy) and today the therapist said - get the walker out - he is ready to walk - boy as I read that in her notes - it brought tears to my eyes - we currently put him in a "walker for normal kids" but all he does is go backwards and not forwards - but I think we can put breaks on his medical walker - We will need to get it out and practice.

Currently we are putting new tile down in our kitchen and laundry room and our house is up-side down - our kitchen table is in the middle of our bedroom - our fridge is in the living room - our stove is in the hallway and there is dust everywhere and I mean everywhere - boy will I be glad when this project is done. Since business has slowed down for my husband we have started to breath life back into our current home. We plan on building next summer - our next home will need to be handicap accessible.

I have scheduled an eye appointment as well (in Hudson 60 miles away from home)- It sure is tough to find a doctor that will take on pediatric special needs clients - I haven't been happy with the eye doctor at Mayo since he said he isn't able to help Brextin until he is able to say what he can and can not see - well my son may never be verbal - however I believe glasses might help - We saw the same eye doctor last year in Hudson - he was the original doctor who prescribed the glasses. It sure is tough to decide on what is best for your child when you work with two different eye doctors who take two totally different approaches.

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