Saturday, September 8, 2012

September 2012

Well, I obviously stopped blogging for awhile, mostly because everything was going great and I didn't have much to report, no news is good news right? So I'm blogging again...you know what that means.

Here is the update from the past year:
I decided last December to take Lily off of her antifungal to not only see how she would do without it, but to also give her body a break I thought it would need after being on it for so long.
Here is some advice: NEVER change what is WORKING! She started going downhill again. It was pretty gradual. Her focus was off, she couldn't sit and attend well at school. I let it go though, stupidly.  I was focusing on other things...

In Feb. we took a family visit to NY and Lily did so well around her cousins that both Anthony and I felt God tugging on us to move there in the summertime after she finished PreK.  Then Anthony got laid off in April...PUSH, we moved to NY June 12th. Just prior to that the kids and I (Anthony went to NY to get started on the job hunt) moved in with my best friend Jenn, who has 2 children as well, the same age as Lily and Meadow, for a few weeks before our move date. Just before we moved in with her, Meadow had gotten  horrible cough (so bad she threw up several times a day from coughing so hard), Lily and I got it too, it was BAD...persistent...NO SLEEP...totally awful, would NOT go away.
I DID NOT want us to pass it on so we went to the Dr.'s and they gave us antibiotics...didn't work....how about another antibiotic? NOPE. Steriods? Nothing would touch this nasty cough and I was afraid it would turn into something worse, and we no longer had insurance, or much money at all, especially with the impending moving expenses.

The result? Nasty cough got passed around anyway and Lily....poor Lily...no antifungal and all this SHIT I gave her (I KNEW better!!!) that just fueled the yeast to the point where she turned into an AUTISTIC MESS, 24/7. Here we were back at square one! NO EYE CONTACT, she wouldn't even Acknowledge me almost at all! It was so hard. Here I was with her, but she really was someplace else. I missed her so badly. I had read a lot about children with autism having a "flight" issue...now that was Lily. Here one second, gone the next. My days were spent trying to find her. I'd have to ask 2 year old Meadow to watch her 5 year old sister!

She was off into her own world, playing in piles of dirt outside for hours on end and obsessed with finding water to make mud and cover herself in it. It was a dark time...I cried and cried. Then I finally called her DAN Dr. and got her back on her antifungal (thanks for the laon mom). There was improvement right away, but I wanted more. I started her on the GFCFSF diet...boy that was hard, but we stuck with it. She had a ton of improvements, but I can't say it was the diet, I really feel like it was the antifungal. After a couple of months I didn't see quite the improvements I was hoping for from the diet.

THAT brings us to today: when you are the "diet" you eat an awful lot of ingredients that come from corn. What happened a few days ago astonished me. Lily was eating a bowl of popcorn (plain, popped with olive oil on the stove). She ate A LOT. Lily went crazy, running all over the place, getting into things...and when it came time to swallow her pills (not an issue for almost a year, even in the crazier months) she went bolistic. Crying and refusing to take them. I couldn't force her to take them (bribing didn't work either) and she really needed to, so I told her she had to sit in time out until she was ready to take them. She cried and cried screaming, "I don't know what's happening ME!!"

I lost it. I felt so helpless. What can I do to help my child?! After a ton of tears from everyone, she finally took her pills (and got a big pile of chocolate chips afterwards :)
Then it hits me...it was the popcorn! She had been fine all day up until that point, and the previous night we had some difficulty giving her her meds and she had eaten some corn pasta.

Lightbulb...someone answered a post a few months back, answering my question about the diet. Her daughter ended up having an issue with corn. GOOGLE...corn, autism...ANSWER: common allergy with people on the spectrum, gluten, casein, soy and CORN.
GOOGLE...ingredients that contain corn...ANSWER...2 pages worth.
What is Lily going to eat NOW?

Well today was Lily's first day on the very strict diet and she did AWESOME.

Breakfast: scrambled eggs and ham
Snack: Banana's with peanutbutter and later Frozen bananas that were dipped in peanutbutter and chocolate.
Lunch: Hard boiled eggs
Snack: banana
Snack: apple
Dinner: grean beans and mashed potatoes (some cucumber)
Dessert: an awesome but expensive allergy free piece of spice cake.

Todays events:
  • playing with her sister (this one is big)
  • not screaming when her sister took the ipad, her declaration, "Hey, I want to see that too!"
  • She filled Meadow in on what she had missed from "Elmo's World"..."Meadow, at first he was a fish!" (Elmo had been pretending to be various pets)
  • Meadow was playing Dr. and Daddy was her patient. Lily sat next to me in the "waiting area" (I had no idea she was waiting for a turn!) and finally said, "Can I be the patient now?" and went right up and sat next to Daddy and actively took part in the play. It's such a huge thing for her to have observed everything quietly first and then jump in.
  • Much better eye contact
  • When Meadow asked for her attention while Lily was watching TV (a damn near impossibility for anyone) Lily was actually able to look at her and declared, "I'm FOCUSING!" She was just as shocked as I was, lol.
So here we are, on the road to recovery, yet again. I know the Lord allowed all this to happen so that she would get bad enough for me to start her on the diet. I never thought she needed it before, she was always doing so well, but sometimes we are blinded too. She did well in day to day settings, but when you put her certain social situations, it was always clear she needed more help. I know things won't be perfect, but I am certain that she will do awesome.

Lily starts Kindergarten in a couple of days and is so excited. In NY, in the district we live in, kindergarten is only 2.5 hours! This too is a blessing, now I will be able to moniter all her food intake to make sure she's the best she can be. After 3 years of full time PreK, this should be a breeze for her and hopefully her anxiety will be less :)

Meadow, has been doing awesome. She talks NONSTOP now, and is a pretty bossy 2 year old. She's wonderful and is such a blessing in our lives. She loves to tell knock knock jokes like:
Knock Knock
Who's there?
Jamaican
Jamaican who?
Jamaican me Crazy!

Or
Knock Knock
Who's there?
Orange
Orange who?
Orange you glad I didn't say Nana? (if you know this one, you know she skips a lot on this one, lol)

She loves to sing and dance and likes to make everyone laugh. She still doesn't sleep well at night though. She still can have problems with constipation, I have to give her extra fiber. She wakes up crying around 6-8 times at night, I hope she grows out of that soon!

I'm going to try to post daily, at least what Lily is eating so I can keep track. :)

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