We have now had Kaden's levels in a good range for 3 months, I am finally starting to breathe again. Feels like when everything starts getting good, we have bad numbers or need to start changing things. For December, Kaden's levels came back at 22 (under 50 is safe) so the doctor and I were very happy about that. We had a check up with Kaden's geneticist and he can't believe how good Kaden is doing. His development is perfectly on track and he is a happy, healthy baby. He was being very cute for the doctor and was loving all the attention of 3 doctors!! (every time we go to the doctor we have at least one other "doctor" join us. I feel like Kaden is put on display for new doctors to see someone with HCU. ANNOYING! I'm always a bit short with them even though I know I shouldn't be)
Kaden's protein allowance has been 60-70 mg of methionine, which is roughly 3gm of protein a day since he was 8 months. I was wanting the doctor to try a higher protein allowance, but at this time, he wants to keep things the same. But, I found a way to more protein!! Right now we are mixing Kaden's medical formula with 1 scoop of similac (regular baby formula) and have been doing this since he was 8 months. Well, now that he is over 1 year old, we can stop giving the regular formula with the medical formula. This one scoop of formula was equal to 1gm of protein, so Kaden will be allowed 1 more gram of protein from food. YEAH!!