We had quite the busy week last week. We had a visit from our early intervention dietician. Although she is very nice, I find these visits to be a little rough on myself. I always wonder if Lochlan has gained weight or height, and if he didn't, then the food I am making for him is not good enough. We cut back on monthly visits, and decided on every other month since I have the hang of choosing, calculating, and blenderizing Lochlan's feeding tube food. I was very nervous because he hasn't been weighed for 2 whole months. My worst fear is that if he stops growing, then they will make us give him formula again. It's never been the case since starting real food, but the fear is always there. Everything went well and he is staying on his curve, but it still makes me and Adam sad to talk about all of the months of growth that he lost when he was an infant. It makes us even sadder to see him side by side kids his age. I'm hoping that one day we can overcome our disappointment, but we still hold out hope that Lochlan will get a transplant in time to grow to a normal height.
We also took the trip down to Albany for Lochlan's urology appointment. The second Lochlan and I entered the ultrasound room, we seemed to panic at the same time. The tech requested that I hold him down on the table, but I just could not do that to my baby. I have always held him during the exams, so I just plopped myself down on the child size table and did my best to calm Lochlan. Even though the ultrasound is completely painfree, Lochlan was hysterical. For a brief moment I was tempted to refuse the test, but we stuck it out. Once Lochlan calmed down, my thoughts began to spiral out of control while I stared at the screen. Every time we get an ultrasound the tech always gets quiet and begins to ask questions to figure out if we know how terrible things are in there. In the dark ultrasound room, the past memories of bad news always come back. It's usually in that moment when I refuse the exam for the right side and then abruptly announce that yes, we know, we expect that Lochlan will need a transplant. The exam ended and then we were ushered into another room for the doc. Every time we meet with the urologist he is genuinely amazed at Lochlan's wellness. He is the same urologist that once told us that Lochlan likely would not make it without dialysis at 2 weeks old. So as we chatted, I brought up that we had started potty training. Lochlan immediately announced that he had to pee. The doc handed us a cup into which Lochlan peed excitedly (apparently peeing in cups is awesome for a 2 year old). It was like Lochlan knew that his job was to pee at the urologist's office, and although he was in a diaper for the day, he didn't pee once in it that day. Even though things are going well now, we remain cautious because Lochlan's urethra has been damaged so severely that it could close up again. The other issue is that he urinates so frequently from the kidney disease that it will be hard to stay accident free when he starts preschool in September.
Our busy week was rounded out by a biannual NYS Early Intervention meeting. As Lochlan nears his third birthday, he will lose all of his early intervention services. Right now we have a feeding therapist, a dietician and an occupational therapist. I was sort stunned when I was notified that the school district would not likely pick up his current services. With the grace of God, Lochlan has met all of his milestones except eating, but it also means that he will not get any services at school. I was told that if he still has a feeding tube, I will need to make arrangements for someone to visit school during the day to give him his tube feeds and medications that go into his tube. While I'd like to start calling the school district to complain, I'm choosing to hold out hope that everything will work out. Who knows? Maybe he will have a brand new working kidney and then we can kick the tube to the curb by Kindergarten.
Thank you for following Lochlan's journey. Please don't hesitate to ask us questions, and please keep us in your thoughts and prayers. The positive impact of everyone's thoughts and prayers thus far has been more important than you all know.
