Little Monkey Update

We have some new information on Little Monkey, so I thought I would share it with everyone.

First up, our very first parent teacher conference. During a teacher work day this week, the kids and I headed up to the school to meet with Little Monkey’s teacher. This was a standard conference and we went over his progress report and test grade. Yes, a test! It is actually the first time they gave this test to the pre-k kids, so they didn’t know what to really expect. His teacher said that there were many things on the test that she thought we asking a bit too much of four year olds! Little Monkey got 50% or less in all four categories. We are hoping that after a year of pre-k, he will have at least improved scores! His teacher said that he does a good job in class and all we really need to work on is some of his letters and the sounds letters make. She asked if I had any questions, but I didn’t. I wondered if I should! Whoops! We discussed more about Little Monkey’s PKU and the upcoming food related holidays and activities.

We got Little Monkey’s most recent blood draw results back on Monday. They were not good. A phe level of 11.7, my heart sank a little and then wanted to blame his recent craziness to the elevated phe level. 🙂 His dietitian decided that we should have another blood draw done yesterday to see if the 11.7 was a fluke. We then reduced his phe intake by 10 mg per day. We will wait to see the results of this blood draw. If it is still elevated, we will take him off the Kuvan and go back to his original level before Kuvan (230 mg of phe per day). I am a bit grateful that we will be done with the medication most likely. We haven’t been able to raise his daily intake to anything that would be worth staying on the medication. At least we have tried it and will know if it does or doesn’t work. Who knows, maybe when he decides to eat more food, there will be a new therapy or drug or something that will allow him to eat more foods. We will find out soon if we are really done with the Kuvan or not.

That is what’s new with Little Monkey. Other than that, he just loves going to school and playing outside.


4 Responses to Little Monkey Update

  1. Kelly says:

    I’m sorry to hear that Little Monkey’s phe level was high. After all of the encouraging words that you have given me, I would like to share some with you! You are doing the best that you can. Without trying Kuvan, you’d never know what it would do for your son and you’d always be wondering if you should have tried it. Remember and a couple of high phe results will not hurt your little one. You are a good mother and are only/always looking out for your children.
    Keep smiling 😀

  2. Holly says:

    Glad you have other PKU parents to encourage you… as for me- I don’t always know what you are dealing with but I always know you are an AWESOME mommy who gives 110% of yourself your children and when anyone spends any amount of time with them and you it is evident that they are a reflection of you… an beautiful reflection of their mommy! Love you lots! and above all I know you are doing a great job!

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