We have made it 2 days without any seizures! Yippee!
This is the first time we have been able to say this since early September, possibly late August. Gabriel’s doctors added an extra snack to his day. He is now eating 7 times a day (4 meals of 238 calories and 3 snacks of 100 snacks for a total of 1250 calories per day give or take a few calories). We think the extra calories, which are intentionally higher in oil, right before bed are helping a lot.
He is being a typical 3 year old and showing a stubborn streak with eating lately. We have several snacks that he will eat but meals are a different story. Over the last couple months he had stopped eating his egg meals, his pancakes, his waffles and his “cheeseburgers”. Seems like every couple weeks there is something else he refuses to eat. There have been several days in the last couple weeks, in which he has only eaten pizza for all 4 meals! UGH! I asked our nutritionist about it and she said while it wasn’t ideal, it is ok, the most important thing is that he is eating. She also said he will probably get sick of it quickly and want something else. HA!!!! Clearly she has not had a picky eater living in her own home yet 🙂 Adding the snack and the insistence on tons of pizza has led to me spending a lot more time in the kitchen. Thank God for our pizza angels and Grandma in town! I tried a new version of pancakes with macadamia nuts tonight and he ate 1/2 of them….not perfect by far but hopeful none the less.
While his stubbornness on eating is ramping up to all time highs with eating, the medicine is FINALLY (after over 6 months) getting better. He is still not taking it willingly but he will at least open his own mouth now for us to syringe the medicine in. HUGE HUGE HUGE step! Having Grandma in town to hold his hands while I give him medicine has also been wonderful!
I keep hoping to write an entire blog about how totally blown away and thankful we are for all of the continued support…….it is just amazing to walk into work and have a gift bag sitting on the table to bless my family, or an envelope with a gift card handed to me in passing, or going to the mailbox and finding real mail or a package or a yummy meal to feed the growns up, especially Grandma and Grandpa Russell, who have taken weeks out of their lives to come help us. THANK YOU!! THANK YOU!! THANK YOU saints!