i hesitate to write this ... cause, i'm sure i'll jinx something. but, holden seems to be finally adjusting well to the enhansa. i still think he may have phenol issues; but so far, nightly epsom salt / baking soda baths seem to be helping (a lot). i was already doing epsom salt baths, but not religiously. now, i'm making sure that EVERY night, he has at least 2 cups of salts in his bath and that he sits and plays for at least 15 minutes. i haven't seen any red cheeks since last week, and he's definitely talking more. i have no idea if that has to do with the enhansa or not. he's doing a lot of scripting and singing songs from his movies/tv shows. which, hey, if it's language of any kind, i'll take it right now! we'll work out the details later! he's also showing that he understands (at least somewhat) certain emotions. jackson was crying this morning and i said "holden, tell jackson "don't cry"") and he said ... "jackson, don't cry" in a really sad voice. like he knew that crying was sad. he's also been pretending to talk on the phone. he'll walk in the other room and make the sound of a phone ringing and then put his hand up to his ear and say "hello"....then...."have a good day"....and then...."bye". i tried having a pretend phone conversation with him, but haven't gotten that far yet.
so who knows. i may increase his dose by 75mgs and see if i see anything different.
6.02.2009
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Hey Rhonda- Just checking in on you guys. I'm not real familiar with what Enhansa does but I've heard pretty good things about it. I'm sorry that you were kind of "down" lately. It is just soooo frustrating the ups & downs and the what if's!!! Would you consider doing the IV chelation instead of suppositories? Maybe that would be better? I only say that because I remember a conversation that you and I had one day at the mall. You said that you sometimes wish that you had been more aggressive with his treatment (chelation, that is). I have NO room to talk because I'm not even considering it at this point. Also, I forget, where are you guys on the diet? Have you removed soy? Trust me, I know the frustration...Holden is WAY ahead of Drew. So, you have to do what your heart says is right. I just wanted to remind you of that conv. that we had that day. :) It was something that I remembered and continue to think about in Drew's treatment when/if we chelate.
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