Thursday, October 16, 2008

Busy, Busy, Busy!!

I am FINALLY enjoying one of those "normal" days at home! For the past week or so it's been either doctor appointments, ECI visits, or errands filling up our days. I'm happily sitting in my pjs (yeah even though it's after 2:00pm!) and haven't even thought of brushing my hair! Nothing in the books for us today!! :)

Austin's having more of that yucky poo...We went to the pedi again last Friday, which led us to more poopy-scooping and a referral to a pedi GI specialist. The GI appointment is in Beaumont next week, thankfully not Houston. Still waiting on the results from the samples.

I've been noticing a slight change in him over the past couple days. Spasms are still up there, but probably only half the amount he was having a few days ago. With that, he seems to be much more interactive and smiley! Our OT commented yesterday on how much more he was using his right hand to grab toys (coincidence?) and how much more cooperative he was. I swear he even tried to clap last night! Maybe not intentionally "clapping", but I've never seen him bring his hands together quite like that! He even grinned when he did it!

I've been getting so involved with trying to get more services going with ECI. We are doubling OT sessions and SW visits. And, even though he's too young to really start speech therapy, we had the speech therapist come in anyway for a consultation. She gave us soooo many great ideas to work with him. We're also bringing in a physical therapist and nutritionist for their opinions as well. Our social worker just admitted she really doesn't have experience with IS and that she wants to get everyone involved for ideas. I guess it never really registered with her that he could regress because he was pretty much on target at the first evaluation. He steadily progressed in his gross motor skills, but everything else was overlooked. Maybe it was just attributed to the array of meds he was on because he was usually fussy at sessions. It took a frantic call from me about the last Houston visit for her to realize the scope of the situation.

I just want to know he is aware of his surroundings. Sometimes I just don't know. He doesn't show many reactions and usually isn't interested in anything but standing. I'm soooo so glad he can stand, don't get me wrong, but it is so much more important for me to know his personality is blossoming. I would rather him communicate, react, socialize, and play rather than walk. Does that sound terrible? I want to know that when I am talking to him, he is trying to understand what I'm saying.

I think finding that right balance in everything is my biggest struggle. Now that his first birthday is fast approaching, I can't help but envision where I thought we would be...only to be hit with the reality. Trying to balance all these emotions is the toughest part. It's certainly not healthy to be depressed all the time...But, I find myself grieving over what life was supposed to be right now. In my picture-perfect vision from a year ago, Austin would have been running or crawling around getting into Mommy's stuff, clapping and dancing, saying ma-ma and da-da, and playing with all the goodies I was planning on buying him. I could see him sitting at his high chair eating Cheerios and making messes or sitting on the kitchen floor banging on pots and pans. I definitely never thought we would be counting seizures or teaching him how to push buttons at his one year mark. That's where the balance comes in...the grieving, the fear, the acceptance...then there's the pure joy he gives me when he smiles, the excitement I have when he reaches for me, and the warmth I feel when he snuggles to me. I'm so thankful for any milestone he reaches. So, why am I so sad at the same time? I will always always accept Austin no matter the outcome. Why can't I accept anything else?

That's the struggle. Acceptance and gratitude vs. anger and resentment.

If I could just concentrate on today. I know that's what helps. Get through today and worry about tomorrow -tomorrow. I wish I could just make myself do that! And, sometimes I do. I'm not sad all the time. Austin makes me too happy to be sad all the time. I love that little monkey sooo much...just gotta gear that yuck into something constructive and move on. What's healthy for me only helps my little guy!

1 comment:

Reagan Leigh said...

Sorry for the random post, but I was just going through some of your older posts and I saw mention of the epileptologists at Texas Children's. If you would like some personal opinions on either, feel free to contact me directly because we have seen both (and have definite opinions of both). We've switched from one to another and let me tell you, that's not an easy switch. I know how difficult all of this is and my heart goes out to you. Take care,