Peter had his medical visit to Boston Children’s Hospital the day before his anniversary, coincidentally. Like the last visit, he is able to wait another four months before his next check-up. We feel almost spoiled at the four-month intervals compared to the six-to-eight-week intervals that had been necessary for so many years. At his CAIR appointment, his arm circumference and skin fold indicated he has had some real weight gain versus just fluid gain. His Echocardiogram and EKG indicated that the heart is stable with no changes since the last tests. The cardiologist said that “stable” is our goal for Peter. The cause of the heart issues we have been assessing the last couple visits is believed to be liver disease/portal hypertension. Since Peter is off TPN and the liver seems stable, the heart should remain stable as well, since something about the liver/portal hypertension is causing the heart to work harder. We will repeat the Echo and EKG in another six to twelve months, again hoping there are no changes.
We still continue to see calcium in Peter’s urine. That never stopped once he came off TPN. A 24-hour urine test confirmed this, and we have seen elevated calcium in all of his urine tests the last couple years. He has been put on potassium citrate twice a day to try to alkalinize the urine so kidney stones do not form. Fortunately, he likes the taste of this medication.
Peter has been working hard at learning to chew better. A goal that we set for him is to get off purees and eating solid foods. He has had very little trouble over the years when it comes to meltable types of carbohydrates, such as crackers. However, when he would chew items such as meat, nuts, fruits, or vegetables, they would end up pouched in his cheek, instead of getting swallowed. A few months ago, we told Peter that when he learns to eat enough solids that we can use them for his dinner instead of using jarred baby foods, then we will take him to see Philadelphia. Well, as the spring warms up and dries out, we will be going there, as he has done a great job with this.
Sadly, Peter is becoming more aware of his physical differences. We hope to find a way to correct the color of his teeth this summer, and I think after summer we will need to look into lasering the tiny broken veins on his face as we did a couple years ago. They have become a more prominent again, as the dermatologist suggested they might. Peter doesn’t seem focused on these issues, but it is apparent to us that other people do notice and sometimes even react to them. We can’t do anything to get his belly lesser in size, although it has been a long standing hope that as he grows the portal hypertension will lessen and his ascites will decrease. His belly sticks out quite far from the rest of his thin body, but he fortunately does not seem to worry about that, and his clothing conceals the size of his belly fairly well.
His concern about being different is mainly about having a G-tube and how that makes him different. It seems best to let the G-tube be his focus then, as that is something he knows he can work on getting rid of one day if he wants to really try. It is his decision on how hard to try, and we think it does him good to have that sense of control. He isn’t really trying to get rid of it now, but it seems to satisfy him to know that he can likely get rid of it one day when he feels like he wants to put forth that amount of effort in eating. We’ve showed him many photos of bellies with G-tubes and discussed some other kids we’ve met who also have G-tubes, but that is not convincing him that he likes his. He only takes in 400 ml of formula overnight and everything else is by mouth during the day, so it is possible he could switch over to taking everything by mouth when he feels he wants to begin that process.
Peter will be finishing up second grade in another couple of months. He is homeschooled and we’ve been working hard to get him caught up in his studies so that he is on par with other second graders. It is amazing how much developmental time was lost between surgeries, recoveries, being in the hospital for a year as a baby, and just not feeling well. It is even more amazing to see how much he has caught up over this last year, with studies and physical activity. He is still riding his Big Wheel and has a surprisingly good throwing arm with the Nerf football. I’ll try to get some of his artwork up on the computer soon; the occupational therapist he used to have would be pleased with the control he has over his pens and pencils these days.
