Zack turned twelve last month. Twelve. That is crazy to me. Since our other boys are 25 and 21, I suppose I should have seen this coming.
This past week Zack had his yearly checkup. It was his first real checkup with his new pediatrician, so we had a lot to discuss. Zack has a lot of unknowns in his life, but one thing that always brings me peace is the amazing medical team that cares for him.
For some reason, Zack’s body does not feel the need to gain weight right now. We noticed at an appointment in January that he had lost a bit of weight despite an increase in calories from his overnight feeds. At the appointment this week his weight was down a little bit more. This downward trend means that he is barely hanging on to the weight chart. If he loses any more, he will officially be off the chart. Our goal for Zack is to get to the tenth percentile.
Zack’s doctor and his GI will be talking to discuss what our next steps are for gaining weight. I am not sure if we will be changing formulas, mixing his current formula differently to increase the concentration and calories or keeping things the same and getting more calories through daytime formula feeds in addition to his overnight feeds.
High ileostomy outputs continue to plague Zack’s body. During his visit he was on day two of outputs over 2,000 (ish)ml/day, but was doing fine. He looked good and had energy. The day after his visit he woke with belly pain, a headache and lethargy. We rescue dosed him and kept him home from school. I needed to head to the grocery store and took him with me. He was so low energy that he needed to rest in the shopping cart. I’m sure people thought he was sick with something contagious. I would never take him out if that were the case. We needed food. Zack was not contagious. Life goes on, even when you have a chronic illness. After a day of rescue dosing the heck out of him, I am happy to say that he is feeling much better.
Back to Z’s doctor visit…..Happily, he has been consistently tracking in the fifth percentile for height. His doctor said that continued growth in height is a good indication of overall health, so that was reassuring.
We discussed the results of Zack’s new genetic testing and the implications of some of them. Specifically, we revisited the bladder issues kids with ACTG2 gene issues can face. We had discussed having a bladder scan with Z’s GI in December, but just never got around to scheduling one. His PCM agreed that it would be good to get a baseline scan done. Evidently, bladder scans are not the most effective way to see what we need, but are a good starting point. Zack will be having a bladder/renal scan once I finally call to schedule one. I am assuming his appointment will be in the next week or two.
Given the need to discuss all areas of Zack, his appointment was fairly long. We were able to talk about his difficulties in school and go over reports and grades. We were able to discuss his anxiety and what we are working on in that area. As we were talking, it was a reminder to me that any one of those areas by themselves can be overwhelming. Zack has multiple areas of concern and sometimes more than one is in need of attention. It was a good reminder that there is a reason for the difficulty of this season in Zack’s life and that Jim and I are doing a good job of holding it together — most of the time.
Zack was a good patient (yay) and polite and answered the doctor’s questions (mostly) and that was amazing! He was still nervous all the way to his appointment and asked, “This isn’t inpatient, right?” and “This is all awake, right?” But he did not fight getting his vitals taken or his examination and that is a HUGE step for him.
When his appointment was over, Zack had some friends waiting in the lobby. Here are some photos to show how happy he was to see them:
Elsa’s human, Pat, and Aslan’s human, Jen, are the some of the most wonderful people ever. They know how much Zack loves these dogs and how much Zack dislikes the hospital. Even though it was not one of their regular days to visit Walter Reed, they made a special trip just for him. How do you thank someone for loving your child that much? I cannot ever begin to tell you just how much it means to us. There are definitely blessings in each day, even the hard ones.
Hug your babies.