Day One: Exhausted.

We survived our first day!! I could barely keep Laila awake for the 10 minute car ride home. I'm really glad I decided to document this not only because it's an easy way to keep you all informed in one mass place but also because we are learning so much that I feel like if I didn't sit and update this I might forget some things!

Laila did so many things today! We had circle time which consisted of singing songs, playing with dolls and learning body parts, using bean bags to find which one matches our hair color, passing a ball to friends. All of that seems like regular preschool stuff and you may be thinking "what's the big deal? why all the fuss and going away from home and paying money when she's already in preschool??" Well, you have to understand how hard it is for her to sit and well, let's just say sit for example. Sitting is something that she struggles with and it is also my goal for this time period. If I have one request it would be for her to ba able to sit and play toys, not only because it is the "normal" way rather than lying on the floor but also because it's much more sanitary. With all of the immunity issues that we have, having her face in the carpet where people forget (or refuse) to take off their shoes or where bare feet that just run outside really quick without shoes really makes for a huge environment of germs. So as I describe to you the things that she did today, keep in mind that when I say that she played at the sand table, it means she was actually standing holding herself up and playing in sand and that is a HUGE deal!

Laila also had lunch and snack with the other kids today. We had worked so hard for so many months and had reached our goal of all caloric intake being oral and then she got horribly sick this spring and we had to go back to straight g-tube feeds. So disappointing! We have seen over the past few weeks that she had been more interested in oral feeds again especially with having started preschool and having snack with the other children. Well today went extremely well. She is drinking from an open cup with handles on the side and doing really well with taking drinks and swallowing (again keep in mind that to us this is involuntary and no big deal but to Laila every drink is an accomplishment).

She had a first day of potty training. She wasn't really excited abotu it but they tell me that she'll get better about it with time. I think her bare little bottom that only ever sits with a diaper on padded seats will take some time to get used to it. I have a potty that they gave me to use back here with me as well so I can reinfoce what she learns throughout the day. While potty training isn't necessarily a huge deal to me right now, it works also on so many other skills with routine and trunk support and control.

Everywhere Laila went today around school she had to get there by working for it. Sometimes she would have to roll, sometimes she would have to walk, sometimes she had to scoot on her knees. No matter what there was no just carrying her lazy little bones :) Also keep in mind that when I say she had snack and lunch she was not in a high chair or her wheelchair. She is sitting at a table on a chair with no harness. She has a bar attached to the table in front of her and she has to hold on to that bar to stay sitting. For the first day, I think she did pretty well.

I had a conference with two of the therapists toward the end of the day today, so here is my gathering from the first day of Conductive Education. They look at Laila and see her potential. They see that she is so very cognitively aware but has a hard time controlling her body. Now to make her mind match her body. For example, when we were in circle time and I was sitting next to her trying to get her to sit up on her own it was a struggle, but when she needed a break after standing by the sand table she was able to sit up for several minutes on her own as we played with a basket of play food together. She can stand next to the sand table and play even while concentrating on the shovel but when i help her stand she can only do it for a few minutes. Her movements are sort of "accidental" right now and we need to catch her brain up to what her body can actually do. So, for everything we sing songs and explain what we are doing. I have to deliberately remember to tell Laila everything and try my hardest not to do things for her. When she needs to hold on the bar to sit up I need to tell her "use your right hand to grab on and then you will be able to sit up." Her brain needs to learn what the movements are and what their consequences will be and that things need to be done in a deliberate way.

So here's the honest truth. I do believe this will work. I also do believe it would be easier to let her sit in a wheelchair all of her life and eat from a g-tube. But, those of you who know me know that even though it might be easier it's not the way I will choose. Even though I've had other parents actually say the words "you're so mean," I don't give in to temper tantrums from any of my kids. Even though I wanted to cry most of the day today because this is both mentally and physically exhausting for both of us, I won't give up because I had already seen by the end of today that some of those connections were coming together. Even though they told me the next fews days will be even harder before it starts to get better, I will still get up and go and give it our all because Laila deserves this chance. When you think about it, easy is not usually ever better. Matthew 7:14 "But the gate is narrow and the way is difficult that leads to life, and there are few who find it."

Thanks for checking in with us :)