So she did still go to her class today. If we kept her out every time she was sick she'd never go and most of the time it's not something someone else would catch it's just her poor immune system. They said she did do good today despite some coughing. She wasn't really interested in eating and drinking which didn't surprise me but they did say her sitting was a little better today. We got there early enough that she was able to sit on the potty for me this morning. They say she is doing better but her screaming fit with me seemed otherwise. I'm guessing she does better for them but is testing me. We'll have to work through it.
The program director pulled me aside this morning to ask how I was feeling about the program. I told her that I am somewhat frustrated because I see that Laila can do these things but is choosing not to. She said that is not really the case. Laila has seen that she can do these things and her brain knows it and her body can do it but the two don't know how to work together. I wish I had a picture to put up here of her head CT from June. It's quite remarkable to look at and see how much is dark on there, basically damaged and dead. I sometimes have a hard time seeing that in her. I guess as her mother I don't see a damaged, disabled girl. I see Laila. I see what she can be and how completely amazing she is. But, as I said the other day, when I do see those things it makes me want more. I look past the amazing fact that she can even function with all that damage and I want more. I want more communication for my daughter. Do you know what a miracle it is that she was able to tell her teachers today that she was hot and wanted to change her shirt? A miracle! And I want more of that. I want to hear her hopes, dreams and most of all her frustrations. As I had my special evening talk with Emma last night and she was telling me some struggles she is having in school, I'm so thankful that she can do that and that she chooses to talk to me about it. I wanted that with Jackson & Laila too. I believe it will come but have have to have a little of that stupid dirty word.....patience. ugh. So the director was saying that this is not going to happen overnight. Now the connection has to be made between the brain and the body. She has to figure out that putting her feet on the floor to hold some of that weight will help take pressure off her bottom when she sits on the potty. It's really uncomfortable to sit on a toilet with your knees drawn up to your chest like she does when she won't relax. (I'm giggling to think how many of you might try it! ha!) But, if I can continue to tell her brain to relax and put her feet flat, one day her brain will make that connection and understand. Ah, consistency. So she assured me that we will create a plan to help us succeed at home when we meet next week. It made me feel better :)
They also said today that in her individual program she did some really good four point kneeling. She was even able to lift one hand, shift her weight and play with a pianos. Stacy Webb, if you're reading - all those timed workouts are paying off :) I was also able to talk with another mom today who's child seems so far along and she told me again that he struggled at the beginning. It really helps me to be able to hear that so I know that if we stick this out it won't be in vain. They have a parent's group lunch scheduled tomorrow so I'm really looking forward to that to be able to do some networking.
I had a very encouraging talk with my brother-in-law Chad today as well. All this alone time kind of stinks and he has been away from my sister and his kids on and off for a couple of months now with a new position at his job so we chatted about that. We both know that God has led us to these circumstances for this time but missing our family and being alone is hard. It's also hard having the unknown of what's to come from all of this. We figured out our blessings and our calling and our lack of control over a life devoted to Christ. Anyway, it's just another thing God has placed to encourage me and I'm thankful for that.
Well, I'm gonna wrap things up here and hit the road soon to meet my amazing, generous, wonderful mother for dinner! Yay!!
ps - Say a little prayer for my precious nephews who will be born tomorrow morning. We're so excited for Brooke and Kevin and can't wait to get to see their little faces and find out their names!!
1 comment:
In regards to what the director said about making hte brian connection, I have always explained ans thought of it this way...the first time you walk through a forest without a trail it is slow and difficult, you pause often trying to figure your way out, after you do it once you can do it again, but a little bit faster, if you keep doing it over and over you make a path and eventually you can run throught he forest, that is how I visualize kids (or adults for that matter) making new connections when they learn something new. Another PT recently described a child with CP picking up a block and putting it on the chair, by nameing each step from look at the block lift up your hand...shift your weight...etc until the block was picked up and it took a whle for the adult in the excersize to complete the task b/c she had to wait to be told what to do, just like Lalia has to tell her muscles and body what to do until a movement becomes easy and natural. Keeping this in mind helps to havepatience with kids, but it is sooo much easier to have patence with someone else's child than it is your own. :)
I hope she feels better soon and doesn't get full blown sick!!
Have you ever looked into PECS? (picture exchange communication system? IDK if it would work for her or not, if you get a chance to look into it, and want to try, I'll see what I can do to help, I'm not trained in it, but have used it with some clients. i think you can get alot of the pics cheap on amazon or you can get many pics off a site called www.do2learn.com (Ithink that is correct) anyway, let me know if you want to try any of it and I will try to help.
Good luck!! :)
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