They said he looked great. He is on par for development...he is normal and above normal in all areas. They were all very impressed that he now has 30 asl sign words that he uses all of the time. They also loved that he has 3 animal sounds...cow, lion, and pig!
We are keeping his diet the same...20-30 grams of fat a day and the rest low fat. We will be staying on Lipistart until he is 2. He is to stay on his Zinc and on the 4ml of Levocarnitine 3x/day.
The only thing they really brought up was that he should start stringing 2 words together soon (like bye-bye, uh oh, etc). And that hopefully he will start adding more actual words to his vocab, which he will he is still in the normal range according to his pediatrician!
We don't go back until September since he is doing so well. They told us again this visit that everytime they see him, the milder form of the disorder they believe he has. They told us, "He is on the very mild end of the spectrum for VLCADD!" So, we are very happy with this. They also told us we only really have to worry when he gets sick, we are doing everything right with him because he has been so healthy and is doing so incredibly well!
We got our letter to apply for SSI, and now all we are waiting on is to hear back about his labs from his blood draw! They are also supposed to get back to us to see if Insurance will cover a blood test to see where his exact dna mutation is so we can have it to compare to future children. Hopefully they will, but we have to wait and see.
We had a great appointment, and are thrilled with how well he is doing!
No comments:
Post a Comment