The last few weeks have been busier than ever around our house! Gabriel’s Ketogenic diet wean is going very well. He is really enjoying getting to try more and more foods. His current favorite is deli ham. He LOVES it! So cute. It is a very simple pleasure. I love watching him get to enjoy everyday food.
My favorite new meal for him is this one because he gets to eat a whole piece of cheese! I felt like a genius when I used our ketocalculator program to make a meal with the right ratios and calories that involved getitng to use 1 pre made unit! He is also enjoying pepperoni a lot. This is also exciting because in a few weeks he can eat pepperoni all by itself as it is 2.5:1 by itself.
This was his favorite meal too until he found ham.
This week we had parent/teacher conferences at school, an appointment with a very specialized behavioral/neuro psycharist and a sleep study.
The parent/teacher conferences went great. It was really good to hear the reports of how much better he is doing in school. He has the energy to participate, is making great improvement in social interaction, speech and large motor skills. He has surprised his teachers with how much he knows academically.
He continues to struggle with attention and answering direct questions . He has always seemed to be this way but it has gotten dramatically worse since the seizures started. The inattention is one of the many things the behavioral/neuro specialist is testing for and working with us on. He has trouble focusing long enough even to do very simple tasks like climbing into the car without getting distracted. The behavior/neuro specialist said his impulsiveness to touch everything and distractness is similar to what you expect in an 18 month old. It was so to hear this but totally true to what I am dealing with. a 4 1/2 year old body with the lack of understanding of safe/not safe; touch/don’t touch is VERY challenging. These behaviors seem to escalate whenever we are changing meds or diet. At the same time his speech is SO much better, he is playing on his own for up to 10 minutes now, he will sit and read books with me and is FINALLY practicing drinking like a big boy. It has been LOTS of emotional ups and downs for all of us!
In the midst of the diet and behavior changes part of our brand new floors have been ruined by a new dishwasher that was installed inproperly and leaked ;( We were without a dishwasher for several days. Between this floor mess and the last one I have realized not having a functioning kitchen stresses me out more than anything else. In our world the kitchen really is the heart of the home. A couple days after the new dishwasher was installed correctly, 2 large water stains appeared on the kitchen ceiling. Small problem with a bathtub upstairs cause 2 large water stains on kitchen ceiling. Bathtub repaired but now we have an access hole in our ceiling and some big water stains that need repaired OYVAY! 🙂 The warped floors and hole in the ceiling just look bad…at least the kitchen is functioning! Right now I am hoping the diet wean continues to go well and quickly so we can hold off the repairs until we can just eat out while the kitchen is being worked.
I am continually and overwhelmingly thankful that the seizures are staying away. I think we are at almost 8 months! There was a full moon this week. Last year at this time a full moon meant 2 to 3 days of constant small shakey seizures, loss of muscle control and speech. PRAISE God that is not our reality anyway. It is nice to look at a full moon and think how beautiful it is.