Little Monkey Medical Update

Today is day zero. Day zero out of who knows how many in a drug trial for Little Monkey. We are trying out Kuvan to see if it will allow him to liberate his diet a little bit while still keeping low phe levels.

To start out, we had to go to Quest for a blood draw. Our lab orders didn’t make it yet but I was able to get the doctor’s office to fax over a copy of the orders to Quest. Quest was VERY busy this morning. I was very thankful to have an appointment! The nurses there always freak out that it will take two nurses to draw his blood. I had to assure them that was not the case and that Little Monkey is quite the pro at this process. He was a little nervous today, but I think it was because this is the first nurse he has had at Quest that was black. (His nurse since he was 10 days old is black and he has been nervous/scared of black women ever since.) He did a great job though. No tears, just stuck his arm out and waited to be finished.

We got home and crushed his pills and he drank them right down in his ‘juice.’ I filled his juice back up with more juice for the day and he sat down for some breakfast. If only I could get him to eat!!!! One day he will want to eat I’m sure of it! Tomorrow morning we will do the same thing, go to Quest for a blood draw and then back home to take his medicine. We’ll see how things go!

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3 Responses to Little Monkey Medical Update

  1. Deana says:

    Can you try some meal “drinks”for him (like ensure or a milkshake (or whatever the equivalent is that he can have)? Maybe that would be easier and ensure he gets his vitamins and daily calorie intake. Good luck!

    • sunshinekmp says:

      He can’t have any of those types of drinks. He already drinks his ‘juice’ (It is a medical formula.) that has extra vitamins/minerals and calories for him each day. The problem is he could care less about eating actual food. He claims to never be hungry!

  2. Deana says:

    I wish I had that problem. I am hungry even when I am not hungry! 🙂

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