The blog has been quiet for a few days. Nothing big is happening, just a whole lot of little things that are keeping me busy. Among those is dealing with doctors, nurses and the mounds paperwork that surround having a child with medical issues.
I have been working on getting Apollo seen by his cardiologist (a more difficult task than you might think) and trying to find a pediatrician with enough experience to be helpful (also not an easy task). Apollo’s heart defect is “mild” in comparison to many other children, but it is also rare, meaning it is difficult to find a doctor who has ever even seen a patient with a double aortic arch. His own doctor has never seen one and his cardiologist “once followed a patient” with a double aortic arch, but Apollo is his first patient to have one.
Apollo’s new symptoms of: stalled weight gain, fatigue and heart murmur have us concerned. The new murmur is likely innocent, but I want to know it’s fine, not presume. He is up to three cans of formula a day (that is 720 mls) and is feeling more energetic. I am taking that as a good sign. He is seeing our local nutritionist and dietician next week. I am hoping she can help with the weight gain. And no matter what comes of the murmur, I want to know why Apollo needs so many calories through his tube. No one has been able to answer that question yet. 
Mordecai and Avi just finished summer school. Summer school, you ask? They went for a total of 18 days (4 half days a week). Both Mordecai and Avi have academic delays and we didn’t think it was a good idea to go the entire summer without working on their skills. They are now free until school starts up again September third.
Judah is back in Florida (we haven’t heard from him, I just know from his schedule). We will be picking him up July 31. I am excited to see him and hear about all of his adventures. Please continue to keep him in your prayers. The adjustment back home can be difficult.
How many calories per day does he take in orally?
Jean- we have never kept track of his oral calories. Keep in mind, he has *always* eaten orally. He got the g-tube placed in May 2012 because the compression of his esophagus made put him at risk for choking and made it too difficult for him to force food past the compression. The g-tube was to supplement his oral eating. He eats more now than he ever has (makes sense, he’s older).
I assume you’ve ruled out thyroid issues?
No, no one has checked his thyroid. He will be getting an ECHO and seeing his cardiologist August 22. If his heart is fine, I want to know WHY he requires so many extra calories!
Ask if you could have a caloric requirement study done on him. It’s only usually done in research so it’d be a question of finding someone with the equipment and then seeing if they’d use Apollo. It could be used to determine increased energy requirement of toddlers with heart defects vs no defects. Might be something his cardiologist, or his cardiologists residents/fellows would be interested in doing. Eventually you’ll find someone else who wants to know if his caloric needs are larger than most children his age, or maybe find someone who already knows. Getting someone wanting to do a case study/ case report on his condition would be good for this and you all if you’re willing, especially if they were able to get it published in a large journal and have a greater number of people who may have insight into his condition aware of his existence.
I still think that Apollo has a strong emotional need to be fed by the G-tube. Letting him play with the idea of eating by licking or tasting foods–without any pressure to swallow might be worth a try.
We never, ever pressure him to eat. It is always optional. He may have an emotional need to be tube-fed, but he fights it 🙁