I don't know if you've checked out the following website or if it would be much help, but I thought I would share it.
www.nucdf.org
Missy
Tuesday, July 14, 2009
Monday, July 13, 2009
NC Mom
John's supplements
Ornithine - 2.5 ml 6 times a day (this would be a lower dose, but the pharmacy had to dilute it)
Creatine - 2 ml 6 times a day
Sodium Benzoate - 1 ml 3 times a day
John's Formula - made by Mead Johnson (makers of Enfamil)
92 g of WND 1 (Non-essential amino acid-free diet powder)
55 g of PFD 1 (Protein - and amino acid-free diet powder)
Mix this with water and fill to make 32 oz
John is at the stage right now where he is trying to make the transition from baby food to solid and this hasn't been easy since most of the time you would start with a lot of soft pastas. Right now the only really solid foods that I can feed him are bananas, cantaloupe, boiled zucchini, squash & carrots. Other than that he eats stage 2 & stage 3 fruits & vegetables.
Ornithine - 2.5 ml 6 times a day (this would be a lower dose, but the pharmacy had to dilute it)
Creatine - 2 ml 6 times a day
Sodium Benzoate - 1 ml 3 times a day
John's Formula - made by Mead Johnson (makers of Enfamil)
92 g of WND 1 (Non-essential amino acid-free diet powder)
55 g of PFD 1 (Protein - and amino acid-free diet powder)
Mix this with water and fill to make 32 oz
John is at the stage right now where he is trying to make the transition from baby food to solid and this hasn't been easy since most of the time you would start with a lot of soft pastas. Right now the only really solid foods that I can feed him are bananas, cantaloupe, boiled zucchini, squash & carrots. Other than that he eats stage 2 & stage 3 fruits & vegetables.
Saturday, July 11, 2009
Getting Started
What do you guys think? Should we set this to private so only we (and people we approve) can see it? Or should we keep it public so some parent searching for stuff about GAMT can maybe come across us?
On the topic of choline... I told Missy this, but after we gave Sam her first egg in months, we commented on what a great night she was having... Efforts at speech, good behavior, etc. While researching choline, I saw that eggs are a great food source. How ironic is that?
Missy, you should consider blogging John's progress and story. I think it would give a lot of hope to the next mom in your shoes. Just a thought:) Glad we are in touch and thanks for the support! heidi
also, if one of you wants to change anything about this, go for it. I don't know how to add backgrounds and all that, so have at it!
On the topic of choline... I told Missy this, but after we gave Sam her first egg in months, we commented on what a great night she was having... Efforts at speech, good behavior, etc. While researching choline, I saw that eggs are a great food source. How ironic is that?
Missy, you should consider blogging John's progress and story. I think it would give a lot of hope to the next mom in your shoes. Just a thought:) Glad we are in touch and thanks for the support! heidi
also, if one of you wants to change anything about this, go for it. I don't know how to add backgrounds and all that, so have at it!
Subscribe to:
Posts (Atom)