July numbers are in and they are ok, homocystine was 59 and methionine was 107. I'm not happy with these numbers since we have been able to get Kaden's numbers in the 20's and keep them there for a few months. He has NOT been drinking his formula for the past two months so we are going to have to make some changes. I wrote Kaden's dietitian a book last night detailing his food, formula, and vitamin intake for each day. She also need some info on his weight and how varied his methionine intake is from day to day. (He is a typical toddler and has days of eating none stop and days of flat out not eating ANYTHING!)
I'm hoping to hear back from her and his doctor soon about what changes we are going to try to get some lower numbers. I do know they will probably increase his betaine medication. He had a check up in June with his specialist and he was so surprised to find Kaden still taking a pediatric dose of this medication. But, the dose was effect until now.
Kaden has been doing so well lately. He is so stinking smart and is really just a normal kid day to day. I FINALLY found a good travel scale on sale so we have been able to weigh his food while out. This has been wonderful! I no longer have to count everything he is eating or try to estimate how much of something he ate. I can just plop the food on the scale and in two seconds have an accurate weigh. YEAH!
Bridgett
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