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.

More words!

Ava said Mom! Her babysitter told me she was sure that Ava said mom but I knew that although she does not babble she will occasionally say something that sounds like mom. But for yesterday and today she was really saying it. Not mama like Meggie but mom. Then she looked right at me and said slowly but clearly mom, up! That is two words in one week. I really hope this trend continues because she can do so little that it would be nice for her to be able to let me know what she wants. You can really see her thinking out the word when she says it and the deliberate way she pronounces them. That is how I know it is not a babble. When Ava first said up, I had to call Theresa, Ava's early intervention worker to let her know. She is an amazing part of Ava's therapy.
She said that usually when kids (even kids with a global delay) start to speak, it is an explosion of words and it doesn't take long for more to come. So I guess it is unlike her painfully slow physical development. I can easily track each movement over the months down to when she learned to shift her knee from one spot to the next. I have tried to slow down my words now to Ava and have been pointing to and repeating words all the time now that she is paying attention.
I tried getting her and I to learn some baby sign but I don't think that will work since her mouth works better than her hands or arms.
You can see her exercising her tongue during the day. She will twist and turn it and her newest hobby is to push all of the food out of her mouth while eating, so that has become pretty difficult for meal times. Oh well, it's progress so I won't complain.
We also went to see a homeopathic doctor yesterday. I was pretty weary going but she made me feel a bit better by saying she needed to do more research and look into it. I think her focus is food by the sounds of it and I told her that her diet could not be touched. I think the best thing that I took from the appointment was her suggestion to rub Ava's stomach in a clockwork pattern every diaper change using castor oil. (on the skin not ingested). She had her first solid poop in months the next morning. I think that Ava's stomach has been irritated lately and maybe this will help. I think I will go to one more appointment and see what she has to offer before making a decision on whether to continue.

frustrated!

I am so glad we are switching neurologists. I am so frustrated with the care Ava is getting and the lack of communication I am getting with her current one. I don't know if I am overly sensitive or if she truly is giving substandard care. I feel that the steps the neurologist has taken in diagnosing Ava has been the basic route care doing no more than standard. I fear if Ava (and she obviously does if they haven't found what is wrong yet) has a syndrome or disorder that does not fit neatly into their check boxes then they will never find the answer. We first saw the neurologist at 13 months where we had an eeg and blood and urine work up. Then at 14 months a MRI (they wanted us to wait six months! And only through fighting everyday for two weeks did we get earlier.) At 15 months the ketogenic diet (again only at our insistance and refusing to take no as an answer...they wanted us to wait at least a year) a eeg, genetic workup including a microarray and a check up three months later with more blood work with another eeg. I guess it sounds like a lot when put together but for a mother who has not found the answer or even come close then it is not enough. The last appointment the neuro said that she was at the end of her diagnostic abilities. She also said maybe when Ava was 20 they might find an answer. Are you freaking kidding me?! I can't believe she said that. She has been looking for seven months. That is not long enough to give up. She suggested that we try a new neurologist. We said yes but wait until her abilities were exhausted (she is still to check the cerebral spinal fluid (in a couple weeks) and do a muscle biopsy. My question is why not check all of these things one after another? Why wait so long between everything so that more and more time passes. The funny thing is that they only check for three things in the spine. One of which the treatment for it was the ketogenic diet. That is why they didn't want Ava to have it. I asked if she could had folate deficiency and brought in an article that sounded a bit like her. So for her credit she did add it. But what about all the other ones I am not aware of that should be tested. Should a parent have to constantly fight to achieve adequate care for their child? Where is Ava's super hero that will work tirelessly to find the truth? We hope this next neurologist will be more interested in Ava and we have a feeling that he will be. Just needed to rant.

sickies

Just a quick note to let people know we are still alive (sort of). We all have an infection that is just awful. Sinus headaches, throwing up, runny noses, consistent coughs and body aches and slight fevers oh yeah and larengitis (for me anyway) Everybody has been sick since last Wednesday but we are all on antibiotics so hopefully this will be a distant memory soon. Through this Ava is still giving little kisses and winks and trying to play.
Of course with the sickness also comes the seizures and she has started to jerk almost as much as before the diet. I hope when this is over she will get back on track quickly.
In the meantime we are all just going to snuggle and watch bad movies and keep the kleenex co. in business.

Easter fun

Ava had a wonderful day yesterday. I don't know if it was the extra dose of B12 I gave her or if it was that she was happy to see everybody. She is such a social butterfly at times. She was so excited she kept bouncing and squealing when she wanted to get picked up.
She had lots of pretty smiles for the day and I loved her energy. Ava is fixated with hair and when we want to make her happy we will lower our heads so that she can grab and play with it. So this weekend we put her on the grass and she went nuts grabbing at the grass and loving it. It must have reminded her of her favourite past time.

On a bad note, in the last two weeks we have noticed that her sitting is becoming less and less steady. She is starting to fall over a bit more often. The other thing is that her slouch is horrible. I am hoping that it is just because she is sitting for such long periods of time rather than it be degenerative.
The other thing is that this past four days her jerks have come back with a vengence. We did change quite a bit at once in her diet. Added coconut oil, canitor and increased calories and added branched chain amino acids. I may have to cut back on most and start again to figure it out. I hate seeing her have them now that I know what they are and how they effect her. Her dietitian isn't back in to work till the morning so I will have to call her then.

My developmental focus for this month will be to engage Ava. In whatever path she leads me to I hope to try to make a connection with her as often as I can throughout the day. It is good for both of us.

Easter pics

"Once there was a little bunny who wanted to run away.

So he said to his mother, “I am running away.”

“If you run away,” said his mother,

“I will run after you.

For you are my little bunny.”

“If you run after me,” said the little bunny,

“I will become a fish in a trout stream and I will swim away from you.”

“If you become a fish in a trout stream,” said his mother,

“I will become a fisherman and I will fish for you.”

“If you become a fisherman,” said the little bunny,

“I will become a rock on the mountain, high above you.”

“If you become a rock on the mountain high above me,”

said his mother, “I will become a mountain climber,

and I will climb to where you are.”

“If you become a mountain climber,”said the little bunny,

“I will be a crocus in a hidden garden.”

“If you become a crocus in a hidden garden,”said his mother,

“I will be a gardener. And I will find you.”

“If you are a gardener and find me,” said the little bunny,

“I will be a bird and fly away from you.”

“If you become a bird and fly away from me,” said his mother,

“I will be a tree that you come home to.”

“If you become a tree,” said the little bunny,

“I will become a little sailboat, and I will sail away from you.”

“If you become a sailboat and sail away from me,”said his mother,

“I will become the wind and blow you where I want you to go.”

“If you become the wind and blow me,” said the little bunny,

“I will join a circus and fly away on a flying trapeze.”

“If you go flying on a flying trapeze,” said his mother,

“I will be a tightrope walker,and I will walk across the air to you.”

“If you become a tightrope walker and walk across the air,” said the bunny,

“I will become a little boy and run into a house.”

“If you become a little boy and run into a house,”said the mother bunny,

“I will become your mother and catch you in my arms and hug you.”

“Shucks,” said the bunny,

“I might just as well stay where I am and be your little bunny.”

And so he did.

“Have a carrot,” said the mother bunny."