Saturday, January 26, 2013

I turned 36 this week-well one week ago.  Nothing exciting,  Demi is really struggling to keep to her no gluten diet.  She is hungry all the time-not sure what that is about.  Maybe it is a 'head' hunger or more of wanting the forbidden fruit.  She had some pain earlier this week, but I found some fiber one bar wrappers on her bed.  Hmmmm.....that explains the pain-makes me wonder how long it takes for this malt allergy of hers to rear its ugly head in her system.  She told me Saturday that she had a piece of bread at her friend's house in the am. I just reminded her to not eat the wheat and can't expect perfection from a 12 year old on a life altering diet for one week.  I have to remind her that she might not have immediate reactions-but a delayed reaction to the eosinophils attacking her system.

I carry around her ALCAT test results, especially when I am grocery shopping.  I am always forgetting what she can and can't eat.  I did make her cloud bread this week-that was a hit.  I made spaghetti squash for the first time and that tasted fantastic.  I didn't get a birthday cake because of Demi not having gluten and we are not going to bring in a cake and torment her with it, but I think I will bake that 3 ingredient peanut butter cookie recipe but instead make it a giant cookie cake and then frost it with some chocolate icing and the 3 of us can have a small cake.  Eating gluten free is expensive, but it will be fine because hopefully she will have a long remission time and not ever need tube feedings.  That is a sad outcome of this disease.

Now on to Jacob, I am not seeing a huge difference in his ADHD symptoms.  I give him his medicine at 745am so that is has kicked in by the time school starts at 830am.  When I pick him up from school at 315pm the medicine is all gone.  He still can't focus on his homework at night, gets frustrated by his math and spelling.  It has only been one week, I have to give it time.

He is getting a case evaluation from school.  The first meeting is slated for February, 6.  I am a nervous wreck over this. I am afraid they will tell me he is fine and he doesn't qualify for special education services.   I  think he will benefit from it. He also has sensory issues and he needs help with that.  I am going to start writing a list of things I observe and bring it to the meeting so I don't forget things.

I have been depressed a lot lately. I am sure it is because I have special needs children and I am just way overwhelmed.  I am internalizing everything I am feeling, because sadly; I just don't think anyone can grasp my feelings over my life.  I try to talk to Jason, but I come across as sounding like a whiny bitch that can't handle her life.  I sleep 12-15 hours a day (mostly when the kids are in school).  I go to sleep around 3am, wake up at 730am, get the kids off to school-crawl back into bed until  3pm; get them and then sit on the couch and nap until 5pm.    It takes everything I have to even make dinner at night or to take my kids where they need to go, help them with their homework.  Enough about me-I am depressed and that is that.

No comments:

Post a Comment