Slow progress is still progress

A few lessons that we have learned over the past month:

Lesson 1: Make sure Reagan is sent to school with spare food. 

I can’t exactly remember how we came to this conclusion, but I believe Reagan was so hungry one day at the beginning that she ate her snack with her lunch.  Then, when snack time came around, she did not have any food to eat.  It worked to get me to pick her up early from school.

Lesson 2: Emergency pepperoni is key. 

Early on into the diet, Reagan decided she wanted a graham cracker, just like all of the other kids in her class, and ended up taking three bites out of one.  Luckily, Daycare called me right away and I was able to get run to the store for some emergency pepperoni and make it to Daycare, within the 30 minute window, to give her some 30+ pieces of pepperoni to counter act the 3 bites of graham cracker.

Lesson 3: Organize or drown.  

It became apparent very quickly that the only way we could make this work was if we were organized.  There are so many moving parts, and so much to keep track of, that without organization, we would drown.  We now have in place a very efficient, and sometimes time consuming, system of stickers, notes, and containers.

Lesson 4: Buy in bulk.

No one wants to be that guy going to your local grocery store every day to buy more bacon.

 

This has by no means been an easy process and is not as easy as we originally anticipated.  We spent the first few weeks after our initial hospital stay dragging ourselves through work and school, and then huddling up at home, too exhausted and overwhelmed with everything to even think about venturing out.  Life is no longer the straight forward, wake, eat, school/work, home, play, eat, bath, sleep routine we had all so comfortably found our places in.  Now, we have the same routine, but with another deeper, more complex layer added to it.

Every single meal and snack for Reagan has to be planned out, down to the gram, before we can even start making it.  To make a meal or snack, every ingredient has to be carefully weighed on the scale to make sure we are getting the correct ratio.  Once this is done, the helicopter parents come out and scrutinize over every drop, making sure she eats everything on her plate, to keep that ratio perfect.

Medicine went from mixing two compounds together and giving them to her, to crushing pills, breaking open capsules, mixing them with water, adding another compound, mixing again, and finally giving it to her to take.

Even though we have backed off with the helicopter parenting while eating, it has left its lasting effect.  Whenever Reagan finishes part of her meal, “Mom! Dad! I finished my apples!!” is yelled out as loud of possible, just to ensure the neighbors know too.

We have started to venture out of the house for meals too.  We’ve had meals at relatives’ houses and we survived them, even with all my stress planning.  She was amazing, Blake was determined, and I was a stress case.  But now that we have a few under our belt, I’m getting less stressed and more confident in how amazing Rea is with knowing what she can and cannot eat.

We have started to see positive changes in our Little Rea.  Her personality is so bright now.  She’s talkative, busy, curious, and independent.  She’s less tired, less crabby, and less timid.  Most importantly, she is no longer clustering.  Before the diet, she started having upwards of 6 seizures in an hour when she would cluster.  She wouldn’t cluster every day, but was starting to cluster more and more around the holidays.  When she had a cluster, she would get completely wiped out and want to just rest.  It was really hard on her little body.  Not clustering has been a huge improvement for her.  Even when she does have one, she bounces back quickly, instead of being wrecked by another one.

It’s working.  It may not be immediate, but every day is better for her.  We are getting better and better at the diet each day and will happily do this forever to keep her having those better days.

One of Reagan’s favorite meals: apples, cookies (high fat biscuits), and hot dogs (covered in bacon fat).

Reagan keeping her cool on her new diet.