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is it really friday? and The End of a long week 

3/23/2012

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Is it really Friday?


Sorry the updates have slowed down. It isn't that there haven't been many, it's just that sleep has taken over. I guess I didn't realize how tired I was until the last few days. So during the times that family is here, instead of updates, I have chosen sleep. The team says that Arion is doing better than expected. We found out that the official on the books time it took was 30 hours and I think he's kinda a rock star round these parts. I would image that this case has been a tremendous learning opportunity. We truly have been blessed with the greatest team of Dr's, nurses, families and friends. We love everyone.

They will be changing Arion's feeding tube from the one he has in to one that is smaller. It's called a . . . well, I don't remember the name so I'm going with a dog paw. Not quite as official as the real name, but what can you do. He has been complaining of pain everywhere and even though its hard to hear as a mother it really is an awesome 
part of the healing process. He has remained cognitive about every aspect of this and I know that God, and the prayers are the primary reason for that. Then the team—his team—is amazing!! I know that God helped hand pick all the amazing people that have been working with him. Also we couldn't do this without the love and support from all our family and friends. I have been trying really hard to run this race like a marathon instead of a sprint because I don't wanna wear out way before the finish line. Arion is one of Heavenly Father's strong spirits and I know with continued help from God, the staff and family, "WE WILL ROCK THIS BITCH OUT!" Sorry for the rough language. It had to be done. 

The end of a long week

Arion is doing well!! They still say he is meeting all expectations + he is starting to work with some tactile 
things like balls and recovering like a champ!! PT and OT worked with him doing leg lifts, arm lifts, flexing both arms, legs, feet, and hands. The first thing he said this morning when he woke up was when he could have a bacon cheeseburger. I <3 my boy and truth be told, he did get his bacon cheese burger. It was just pureed. We put a wash cloth over his eyes while he ate it. 

Sleep has finally hit!!

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    jessica vanvactor

    I'm a single mom, transplanted from the Midwest to sunny California, in order to do the best for my son who has NF2.

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