Larkin officially came completely off her Ketogenic treatment diet as of July 1. We weaned her down over a 2-month period and she has done beautifully! No signs of the dreaded “s’s” and she is her usual sweet, laughing, pulling my hair too hard, self.
Continuous watch for regression is necessary, medications to support her bone growth until at least September and then we will do a blood draw to ensure all is well.
Here is the awesome part that if I tell you the story in person – it makes me cry.
I was sitting in bed with her relaxing just before bedtime. She had just come from her bath, smelling sweet and wearing just a diaper to cool off before jammie time. I was eating a late snack (remember I am pregnant so don’t judge) of summer sausage, Ritz crackers, and cheddar cheese. Larkin was watching me eat as my hand went from the plate to my mouth. Breaking a Ritz in half – I offered it to her and she took the cracker and snacked away. I offered her the other half and she reached out, took it from me, and repeated this until I decided to throw the cheese into the mix.
I put a piece of cheese on my palm, she took it with her little fingers, and down the hatch, it went. This continued for a bit and of course being a parent of a child with special needs, you are always looking for ways to make fun times into a learning experience. I offered her a piece of cheese and a cracker on my palm. Larkin looked at both and I was thinking she would grab the cracker but nope – she grabbed the cheese first, ate it, and then came back for the cracker.
Now we are not only sharing a snack but MAKING CHOICES!!
At this point I am laughing, crying, and totally overwhelmed by the sheer joy of sharing a snack with my little girl. I called Andy into the room and showed him our new adventure. Of course, he was taken aback as our old habits are dying hard. He was worried that she shouldn’t have the food, worried that she would suddenly begin to seize again. We have been so diligent with EVERYTHING, weighing food, reading nutrition labels, and protecting her at all costs to keep her in ketosis. Now — we can relax?? Who knew???? Who knew it could be so much fun!!??
We have been enjoying all sorts of “new” stuff in our house and at Grammies. She has had grilled cheese, crackers, lots of bananas and other fruits that were limited before, and today it was peanut butter and jelly (sugar free albeit) and Grammy said she couldn’t get that into her mouth fast enough!
Food is our common denominator and we have not really been able to share a meal with Larkin for over 2 years. While she is not cognitively aware of McDonalds, treats, and pizza, we have missed one of the simplest moments of life that most of us treasure, time at the table and sharing good eats.
No snickers or ice cream and such that are simple sugars just yet. My heart and stomach can’t take that stress. In due time. For now, picture a little girl and her mom sharing treats such as apple slices, crackers, and giggles.
On those days and during those times when it feels like we won’t ever make progress, when we don’t fit in with any particular disability group and watching those make leaps and bounds we may never see …. she and I have snack time.