18 month update

                 I have had zero time to update the blog, so I decided that today I would put Lochlan in childcare and update you all on the little guy. Yes I know, I'm supposed to be exercising, but I tend to misuse the Y's childcare room when I just want to write or relax. The Y is super important for Lochlan because he has the chance to learn how to separate from me and socialize with other toddlers. The other interesting reason is that Lochlan needs to be exposed to as many viruses and pathogens before his transplant. His immune system will be suppressed for the life of the transplanted kidney and he will be better off if he is naturally immune to germs. I'm not sure where I would be without the great people at the Y. My greatest support comes from the women who care for the children in the chidcare room, Moms at preschool, and all of the fabulous women that always stop to ask me how Lochlan and Mommy are doing. I am also so grateful that I continue my love of Zumba even when I am feeling down and lazy.

                 Lochlan had his urethra repaired in Boston at the end of August, and had his vesicostomy closed a few weeks ago in Albany. So far, he is urinating out of his penis the way he should (fingers crossed). We are so happy because his kidney function has remained stable after they closed his vesicostomy. We will find out if the urine continues to reflux into his kidney next week.  We are hoping that Lochlan will continue to pee, his bladder is working, and we won't have to continuously catheterize him or reimplant the ureter. I am really hoping that we can move past this because Lochlan has some other problems that we should address before he can get his transplant.

               Next, we will need to schedule an MRI to investigate Lochlan's spinal defect. As far as we know, his tailbone is fused and rotated out. Unfortunately, it would not be a surprise if his spinal cord is tethered. If the cord is tethered, as he grows it could sever and cause neurological deficits. Fortunately, surgical intervention is a permanent cure. Parents of other VACTERL children remark that the specific surgery tends go smoothly without many complications.

               The next priority is to follow-up with cardiology to figure out the extent of Lochlan's PFO. It is a hole between the upper chambers of the heart that usually closes when the child is born. We ran into some problems post-anesthesia in Boston, and the team was certain that his problem was exacerbated by the oxygenated blood mixing with the deoxygenated blood in the heart. The good news is that if he does need surgical intervention for that, it is done with ultrasound and a catheter inserted into a large vein. Compared to his many other surgeries, it seems minimally invasive.

              Since I obsess over Lochlan's GI and weight gain problems, you probably all know that growth is always the problem that takes priority over everything. He continues to have little interest in eating, and tends to gag and vomit if he manages to get anything into his mouth. We are fortunate to have a very patient feeding therapist, and so far Lochlan enjoys his time in the highchair. I continue to kill myself by creating and making blenderized food for his feeding tube, only for it to end up all over my home and everyone's clothing. While I am amazed that his kidney function has remained stable, I know that part of it is because he hasn't had enough growth to stress the kidney. Lochlan hasn't gained any weight since before he was in Boston. There is one thing worse than watching your child starve, and that is to watch your child be happy to starve. After Lochlan vomits, he is happy. So far the only thing that Lochlan tolerates is breast milk. I stopped pumping a month ago, but a very special mama continues to pump for her baby and gives us the rest. We are so fortunate to have this liquid gold because the doctors allow us to feed it to him when he is supposed to have a clear liquid diet before and after procedures. It has kept him from needing IV fluids and the dreaded overnight admission to the hospital when he had the whole UTI debacle. Also, we give it to Lochlan overnight because he is able to easily digest it while he sleeps.

            Although I constantly worry about Lochlan's quality of life, he is generally happy most of the time. He gets a shot every night and an especially painful one once a week, but we try to do it quickly and give him lots of snuggles afterwards. We have started teaching Lochlan that bath time is fun and not torture now that he is allowed to be submerged in water. It broke my heart the first few times we tried. Currently, he enjoys baths as long as we don't wash his hair and as long as Declan is in there with him. Declan continues to cheer his brother up when he is sad, and dutifully role models naughty behavior. Lochlan's favorite book is Brown Bear, Brown Bear What Do You See? His favorite word is turkey, and he loves to mimic an elephant. I am surprised by how much energy he has and how busy he is when he plays.

            The years ahead will get tough, so we try and focus on being happy that we are not on dialysis yet, or making frequent visits to Boston. We depend on the incredible amount of kindness and support that you all give us. This time last year was especially rough, but we made it through with the help of our family and friends. We couldn't be happier to spend a somewhat normal holiday season together this year.