I know it has been a long time since I have posted on this blog, I have wanted to, I have thought about it almost everyday, but the thought of writing was totally overwhelming to me. My reason for not blogging is not that I have nothing to say, on the contrary, I have so much to say I don't know where to begin or how to organize the information!
My perfectionism doesn't help either. I should say that it has frozen my creativity solid. I also struggled with "who cares what I have to say" thoughts and also feeling like posting about my life felt kind of narcissistic in a way.
But I have decided to write again despite of all that has kept me from it, imperfect as it may be.
This may take a few blog posts to say what has been going on the last few months so bear with me, if anyone reads this thing anymore, that is. If not, that's okay too! I need to get it out.
First thing, how is Kaylee? Kaylee is doing so well, I feel embarrassed to brag about it. Kaylee no longer qualifies as a child who has autism. I am tempted to take her to a specialist to get officially un-diagnosed. Every single day I marvel at how well she is doing and the gift I have been given. All of the autistic behaviors she displayed are gone. No more toe-walking, tantrumming, nightwaking, scripting, spinning, stimming, ignoring people, and anything else that she used to do that was "autistic". No more diarrhea, no more hyperactivity, no more dark eye circles, no more stomach aches. No more looking past me when I look at her. I can't even remember everything she used to do because it has been so long since she acted like a person with autism.
However, Kaylee is still a bit immature, she acts more like a 4 year old instead of a 5 year old. She plays with her friends but doesn't communicate as well as a child her age could. She recently started asking questions and answering "why" questions after a medication change back in the summertime. Kaylee is moving right along developmentally, but since she spent a few years in her autism-fog, she is behind her peers a little bit. She is a sweet and happy child most of the time, she plays with her brother and sister, and she is in a regular kindergarten class and reads so very well. I hope to post a video on here soon!
As for Kaylee's current treatment, here is what we are doing:
- GF/CF Nut free diet, lower in sugar and low in fruits
- Famvir (an antiviral medication)
- P/N (low dose immunotherapy/allergy treatment)
If Kaylee does happen to eat some dairy or wheat she will become hyperactive, have tantrums, and nightwaking return within 30 minutes. However, when we first started the GF/CF diet, I didn't really notice when she had a dietary infraction because there was just too much inflammation going on. The better Kaylee gets, the more I can tell what triggers her behaviors.
I hate to sound proud about Kaylee's progress, I hate how torn I am about sharing it. I certainly don't want to brag about it, but I feel so blessed, I tell everyone about it. Our lives have changed and we are so happy about this.
I wish for everyone to have what we have. But it is not so, yet. There is a battle raging and it needs to be won. There has been some been some great discoveries made recently and I haven't been free to discuss it until recently, which I will be doing in the posts to come. It involves our entire family and most likely many families affected by autism.
Until then, be blessed, anyone who reads this!
