This is going to be a very short post, as I don’t have much time to write :)
Bentley genetic testing came back positive, he does have Mutated Atosomal Polycystic Kidney Disease. Unfortunately, at this time there is still nothing they can do for him right now, but continue to closely monitor him. This news is not a shock to us and we are just thankful that we know what it is. God’s kindness and mercy have been over us. At Bentley’s last checkup with the pediatrician, he had gained 2 lbs, he is now 23lbs! The doctor was totally surprised because he gained that in one and half months! This is after taking him off the nutritional drink that he had been on. His almost daily avocado smoothie is a huge part of it :)
HERE is a webinar on the disease. If you are interested in watching it. It is 55 mins long.
God has been so kind in revealing everything to us at a slow pace. Well, at least for me. All of Bentley’s issues at birth have been a direct result of this disease. It is often caught in utero, but not always. I only had one ultrasound with the Maternal Fetal Medicine and everything checked out fine, so somewhere between 22 weeks and his birth things started to change. My mind is quickly tempted to what ifs. What if I had another ultrasound… would they have caught it then? BUT God, allowed the doctors to see no sign of present danger and told me I was having a very health boy… what if they had told me I wasn’t having a health boy. I would have been devastated! To have your first child and know that he wasn’t going to have a good chance of surviving, isn’t very encouraging. God protected me from that! I’m so grateful!
Then, all of the signs for this disease were present at the NICU… underdeveloped lungs, problems with salt levels, hypertension, the use of a ventilator and NO2… why didn’t they catch it then? Well again, I see God’s hand in that. What if they had saved Bentley’s life and turned around and told us that he probably will need a kidney transplant and possibly dialysis before he reaches 10 years old. Would we have been so excited for his first days home, the first year of his life? Probably not. God has slowly been revealing things to us so that we can grow in trusting at each stage and I cannot express how thankful and grateful I am for that. Sometimes it is nice to have all the answers and know what is coming, but we were able to enjoy Bentley for a full year without any problems or complications, and God has reveled to us his disease before it is too late. Again… HOW KIND!!! What grace!
Bentley’s occupational therapy has been going so well. All of us are so please. He is gaining muscle around his stomach and it doesn’t get nearly as big and bloated. His therapist commented yesterday that all the nurses have notice that his ribcage is going back in place and his is body is responding so quickly. It’s hard work for him. He is exhausted after his workout! They all love him so much. I have met so many devoted mothers in the waiting room. Many of them have been going to therapy for years. I can’t complain one hour, once a week for eight months is nothing compared to their children. God has been so kind to Bentley. What a testimony he will have one day!
Well, that was a “quick” update on Bentley. I will have one on Marseille either later today or tomorrow.