This is probably the weirdest post for me to write, because while I am trying to update all of you and explain all that has been going on recently, I am still trying to adjust to it. But don’t worry, this is the post that I am also most excited to write 🙂
As of a week and two days ago, I was officially on my full dose. The days that followed were pretty rough as my body tried to adjust to it. I had several days in a row where my body was achy all over and I was extremely fatigued. Very similar feeling to having the flu. This was really discouraging to me because in my head it seemed like things were getting worse.
Two days ago, I had my October visit in Kentucky. This was a big appointment for me. At this appointment, I was going to find out if I was going to be allowed to move to the next phase of the trial or not. I was so anxious about that fact, I forgot to even worry about whether or not the drug was actually working.
I found out that Yes, I will most likely be moved to the next trial. This means that the current trial I am in will be closed out in the middle of November, and a week later I will go back and have my initial visit for the next trial.
While they were explaining this process to me and the plans involved, they slipped in a bit of information that made everything in me freeze as I tried to comprehend what they just told me. In between explaining logistical issues for ending this trial and 
beginning the next one, they told me THAT THE DRUG IS WORKING! My dad was with me at this appointment and upon hearing those words, we both stopped in our tracks. We might have made them repeat themselves like thirty times. As of my September visit (4 weeks before this appointment) my protein levels had decreased by 35%!!! Now I am sure you don’t remember, but at this point I was only on 10mg ONCE a week. At the appointment I just had, I was at 20 mg EVERY DAY. Needless to say, I am very anxious to get back the results of my most recent blood work. I should know in about a week or so if my levels have continued to decrease.
After finding this out, I immediately texted several family members and a few friends. Telling them was just as emotional for me as it was to hear the news myself. I have no idea if my levels will continue to decrease, or if 35% decrease is all I get. But either way, praise God! Even this amount will allow me much more flexibility in my diet in the future.
Now the next question everyone asks, is “so are they changing your diet now?” And the answer is no, not yet. They might, but there has been no indication of that so far. But that does not mean they won’t as my levels continue to decrease. You can be sure that if that happens, I will be letting everyone know.
Probably even random people on the street who have no idea what PKU is. Just Kidding….maybe.
Although it might be obvious to everyone in the world that I’m experiencing pizza for the first time when I eat it like that ⇚⇚⇚⇚.
While a good part of me is still in shock, I find myself clinging to the Lord even more. The best I can explain my emotions about this trial and even more so now that I found out that the drug is so far 35% effective, is that it feels like the rug was ripped out from under me, I just can’t tell if I’m flying or falling yet. That might seem weird in light of the good news I have just received, but this trial, as amazing as it is, is forcing me to emotionally go into unknown territory. I never even imagined a life (realistically that is) in which I did not have to live within the limits of the PKU diet and lifestyle. All of a sudden, I am able to dream of things that I was too scared to dream before, and more and more they are slowly seeming more likely. This is crazy. And I am so overwhelmed with God’s grace and blessings on me. I had accepted and even praised Him for my PKU, and now He is offering me something so beyond what I even thought to pray for.
I am thankful and undeserving because I know not everyone who deals with illness, disease or disorders have this opportunity. The Lord is our Hope and our Healer, and I look forward to the day when we all have new, healthy and holy bodies.
2 Corinthians 5:5-7 “For we know that when this earthly tent we live in is taken down (that is, when we die and leave this earthly body), we will have a house in heaven, an eternal body made for us by God himself and not by human hands. 2 We grow weary in our present bodies, and we long to put on our heavenly bodies like new clothing. 3 For we will put on heavenly bodies; we will not be spirits without bodies.[a] 4 While we live in these earthly bodies, we groan and sigh, but it’s not that we want to die and get rid of these bodies that clothe us. Rather, we want to put on our new bodies so that these dying bodies will be swallowed up by life. 5 God himself has prepared us for this, and as a guarantee he has given us his Holy Spirit.”
Until that time, I will rely on Him, even if I don’t get the earthly healing that I long for. “But He said to me ‘My grace is sufficient for you, My power is made perfect in weakness.’ Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest in me.” 2 Corinthians 12:9.
atrialofgrace 