Hope is a funny thing

I went to the grade school in town to take photos of a police dog visiting and I saw a little girl that reminded me of Ava. It had something to do with her hands. They hung in a funny way like she had a difficult time in her life using them properly. Her eyes were softly out of focus and she had a teachers aid sitting beside her. When the officer asked the class if anyone was afraid of dogs, the little girl (grade five) raised her hand and told the officer clearly that she was afraid. He asked if she was deathly afraid and she nodded solemnly that she was and so moved back a few rows. She was a sweet child who clearly thought and spoke and yet you could easily see she had delay issues. It's funny but this little girl gave me hope that one day Ava will independently walk and voice her concerns and opinions. Will be her own person. I wondered if this child's parents went through all of the unknowns and heartache that we are going through now.

Development update

We have been walking Ava around the house this week again. I hold her waist and back and let her lead. Physio said not to because kneeling would be more beneficial than walking. We want to do it anyway just because of the proud look on her face that she gets every time we do it. She is so pleased to be be 'walking'. I tried to get her to learn how to cruise by holding her and letting her side step herself. The great thing is that when we reached the end of the couch she reached on her own initiative to the rocking chair. I think she got the gist of what we were doing. Of course she won't be able to put any of this in practice until she learns how to pull to stand on her own but we are working. We will sit her in her little music chair and I will just hold out my fingers for her to grab and she will pull to a stand with a large grin. Her legs have always seemed strong though. It is just her core strength and arms, neck that were always so floppy and weak. She really does seem to enjoy her various therapies lately. She seems determined to learn. When we were working with the peanut ball she was out of breath from working so hard. So I went to give her a break. Somehow she rolled and wiggled her way back to the ball and was raising her shoulders and hands like she wanted to crawl back on top of it. Very cool.

Diet

I am working hard to eliminate the remaining stubborn seizures. If I can do this through diet then I will. I am only using the freshest ingredients that I have prepared myself so that I know exactly the carb content. I am also writing down in a journal absolutely everything that she is doing. What is going in and what is coming out. I am monitoring her ketones more often and using a dropper to weigh out the cream and milk, so that the measurement is to the gram exactly (and not 1.5 grams) I am making sure that her eating schedule is exactly the same time every day and from there we will see if her seizures improve more.

I am also trying not to add or take away too much anymore. She had a high incidence of seizures when I did that. I figured out it was the coconut oil (There must have been trace carbs in it, because when I stopped it her seizures stopped as well).

This is her cheesecake I made yesterday for her. She loves it so much. Not only is it delicious it also is pretty dense, so it sticks well to the spoon. It works as good motivation to use her hands. I will stick it to the spoon and put the spoon in her hand and let her go at it. She now will raise the spoon to her mouth and eat it. We will work next on getting her to scoop it out of the bowl but one step at a time.






Ava holding her bottle is a huge leap forward. This is something she will do when we place it in her hands. But it is a great start and hopefully will evolve to her being able to feed herself.

Ava's medical summery. We are switching neurologists. The only thing inaccurate here is the last sentence that says that her tear production has resolved. It hasn't.