It’s been a while since I last posted an update on Levi. The good news is that there isn’t much to update. God has been faithful and merciful, he’s allowed us to live normally, for the most part.
In August, we went for our first MRI to monitor for C, we also did a biopsy. At that time it was determined, again, that Levi DOES NOT have the BSEP protein that would qualify him for the clinical trial. At the International Convention, attended by Levi’s doctor in November, there were no other studies or clinical trials upcoming for kids like Levi. All the trials are for kids with BSEP.
In October Levi broke his leg roughhousing with his sister which prompted us to get a set of labs in between our quarterly visits. The labs came back great except for his vitamin D which has slowly crept down since the summer. We’ve doubled his dose twice now.
In November we went for Levi’s quarterly MRI. It is so hard sedating our boy every time and watching him get drugged, loopy and fall asleep. We have a hard time holding back the tears. EVERY TIME. We discussed with the doctor who saw us (not Dr. Yazigi) how aggressive the MRI schedule is. He felt we could move to MRI’s semi-annually. After reviewing this with Dr. Yazigi, she still feels we should be getting quarterly MRI’s – she is very concerned about the possibility of C for Levi. So, unfortunately, quarterly sedation is the plan for now.
For those of you who follow his labs, here are the most recent results from our MRI and clinic visit on Nov 21st.
INR: Blood Coagulation: 1.2
AST: Liver Enzyme: 113 (best we’ve seen)
ALT: Liver Enzyme: 80 (best we’ve seen)
AFP: C Markers: 1.1 (normal)
Direct Bili: 1.9
Vitamin A: 22 (good)
Vitamin E: 25 (lower range but good)
Vitamin D: 11 (very low)
PTH: Another measure of D: 24 (this is good and means we don’t have to add another vit D medication)
Iron: 11 (normal)
Bicarb: Kidney function: Not enough blood
We likely won’t post again until the new year – God bless you, Merry Christmas and have a Happy New Year.