Two Weeks In

A huge thank you to WAWA for supplying Cavan his cream for this diet! 

So we are now approaching two weeks on this diet and I am thinking about everything we have learned and how far we have all come.  I have learned so much with Cavan being on this diet.  I'm not just talking about how to make his food.  I have learned organizational skills, time management, patience and quick thinking.  I always thought I never had any time to do anything in the past. I had four kids, a busy lifestyle etc.  now I chuckle to myself thinking, oh my God I had so much time and I never knew it.  I think we all think that at some point in our life though.  But every day as I live my life with this crazy new schedule, I now know I used to have so much time!
  Every moment is accounted for now.  I am making food, weighing food, tasting food (because let's be honest, some of this stuff I am making is gross and I have to throw it out and start from scratch). In the afternoon while the kids are napping I focus on meal planning.  The following day has to get done  if I am going to make Cavan's dinner in time.  The calculations suck.  It's not terribly hard but it requires thought.  And if I haven't had my third cup of coffee, the math comes out wrong.  By the time Cavan gets home from school, dinner for him is made and weighed and on his plate ready to be heated. We have more important things to do-  like play outside for a bit!
  Cavan has been doing awesome in school.  He had some adjustments that needed to be made but he is enjoying it.  He gets speech therapy, occupational therapy and he also has a para with him to monitor his seizures. There are only like five kids in his class and three or more teachers in the room at one time.  He loves it and tells me all about how he fills his bucket everyday.  I couldn't ask for better teachers, nurses and staff! They communicate with me everyday and some times several times during the day.  I know I am high maintenance as a parent and a former educator but they handle me well.
Cavan has not had a seizure since the hospital.  Ssshhhh don't say it out loud! And knock on wood for me! I don't really put much into that though since he was pretty controlled with the meds before going into the hospital.  We will see what happens when they start pulling him off the meds around christmas time.
We have been seeing other improvements as well.  He is no longer drooling.  Now, if you knew Cavan, you would know that wherever he went, a puddle if drool was under his chin! It is completely and totally gone.  Weird.  Magical? I don't know what to call it but it's a good thing.  He is also a lot less aggressive with his behavior.  Don't get me wrong, he has his moments.  But overall, he is not going after Ronan as much and he is playing very well with both cara and Maeve.  This was a big thing for me since I could tell other kids had issues with his behavior.  So it makes me happy to know he is doing well with that.  His bowel movements have been pretty rough.  He poops water (I am guessing from the oil). A lot of times last week he didn't even know he was going! So we are back to pull ups.  But for this first time ever (and the second time too!!) he told me he had to poop. Be went and sat on the toilet and actually went.  Yes, he is four and a half and no he is not potty trained yet.  But when he has seizures that set him back in the potty training world, that shit happens (hahaha, see what I did there??). But last night that changed and we were so proud of him!!
  So as you can see we are having improvements.  I am just so anxious to really get ahead, get him off the meds and see how he does then.  All in time I guess.
 As far as the diet goes, he is getting better.  He is finding his favorites meals.  I am able to go back now and look at what he had last week.  That helps a lot with time management.  It just sucks when I make a meal and he decides he doesn't want it.  Because that can't happen.  He has to eat and he has to eat all of his food.  So I try and stick to things I know he will like.  He still has temper tantrums when he wants something that he just can't have (think yummy waffles in the morning). But he tells me to check my list or ask nurse Claire.  The meds are really rough.  He just takes so many syringes a day and that has become a real issue with him.  He takes a little syringe of his Onfi.  It's small but he hates it.  He takes his Cytra which he actually likes.  That one is for the acid in his blood.  And he takes lamotrigine pills everyday.  And then he usually has a syringe of oil with his meal.  He is a trooper but it's just gross for him and sometimes it's a huge -hold me down and fight- kind of a situation.
  We go back to CHOP this Wednesday.  I am praying that they don't change his radio.  We are in such a good place now with his meals and getting into a good routine.  If they change his ratio it's like starting back at square one.  But hey, we've come this far, we can manage.
 Cavan is the strongest kid I know.  He puts up with so much poking and prodding and testing his pee and syringe after syringe of oil and meds.  He is way stronger than I could ever be.  And he does it all with his seriously cute smile and giggle. Thanks for reading and make sure to check back this week after his appointment!