These memes express exactly how I’ve felt last week and so far this week. I am constantly exhausted. I decided not to blog at all last week because I knew I wouldn’t produce anything worthy of reading. My brain basically processes everything like “blah blah…blah blah blah…blah blaaaahhhh.” Not to mention, I was having some anxiety over LB’s PKU appointment. These appointments haven’t been helping with the postpartum depression at all.
This weekend my Grandmother and Mom drove over to watch SP during LB’s appointment in Atlanta. (Thank you!) Because the trip takes so long (and the appointment), we had to stay overnight. SP had a blast spending time with her Great Grandmother and Grandmother. LB’s appointment was okay. Honestly, the entire thing could have been done over the phone. Plus, we found out they had genetic testing results since November that we would have liked to have known about sooner. Basically, the appointment came down to his genetic results showing the gene mutation. The specific mutation has up to an 80% response rate to the only PKU medication, Kuvan. Kuvan helps the body process more PHE, which allows the PKUer to consume more PHE within foods. Now, will LB be able to have a “normal” diet. No. He still will need to refrain from dairy, meats, nuts, and flours. However, if he does respond to Kuvan, he may be able to eat bigger portions of medical foods, formula, fruits, and vegetables with higher PHE levels. This means there could be a smaller chance of him going hungry between meal times. We will be beginning the trail run with Kuvan soon. Although, we will not know his exact PHE tolerance until he is about 3 or 4 years old.
This appointment showed a glimmer of hope for LB’s walk with PKU. We can only pray that he will respond to Kuvan.
With LB turning 6 months in the not so distant future, I will be testing making our own bread. I have to use a special medical flour, egg replacer, and such for his low-pro bread. While I’m making bread, I might as well make our’s as well. It will be a learning curve!