Chuck and I have been blessed and overwhelmed by the support we are recieving! Please know that every facebook comment, package of Jell-o, gift card, hug, playdate touch our hearts and warm our souls. Especially, as we read the doose syndrome and ketogentic online support group boards. We have friends and family helping us make meals for Gabriel and show care and concern for Chuck and I as well. Thank you! Thank you! Thank you!
This blog is dedicated to a few specific things that I remembered to get pictures of….please know that every gesture is equally valued and being recorded for Gabriel to know about as he gets older.
We received this beautiful prayer blanket from a seminary friend this week.
I love this picture because it shows a common and natural moment in our lives. Gabriel wants us to hold his hand while he goes to sleep. He also LOVES blankies,so it was especially touching that he started requesting his prayer blankie right away.
Another kind family passed along this super cool Gator that their kids had outgrown.
I would be forever regretful if I didn’t take to time to give a HUGE public thank you to Chuck’s Mom. She literally left her entire life behind for over 3 weeks with the sole purpose of helping us! You name it….she did it—dishes, laundry, yardwork, liter pan duty, babysitting, late night emergency runs to Wendy’s for Frosty’s. She would literally sit in Gabriel’s room on seizure watch while Chuck and I learned to cook his meals. She earned the title “Miss Grandma” at preschool because anytime Gabriel went to school she was with him every second. She made sure he got his snacks, and helped his teachers learned to care for him as well as play with the other kids. She played outside with him everyday and passed on a love for gardening.
Early during her visit he learned how to plant and water.
In the middle of her visit he learned about trimming trees and breaking down limbs. Grandma used trimmers and Gabriel used his hands.
Near the end of Grandma’s visit we potted this flower and G knew just what to do.
We have had some set backs this week with several small seizures and a couple big ones. The doctors plan is to change Gabriel’s diet each week of the next 3 weeks and get his diet up to a 4:1:1 ratio (which means 4 units of fat for every 1 unit of protein and 1 unit of “sugar”–sugar being the natural juice of an apple). The long and short of this means more fat…butter, oil and cream. Chuck has been doing a lot of research and believes that this ratio is the BEST for a doose kid. We are excited to have the opportunity to give our little man the BEST shot at Seizure freedom!