Tomorrow

Avery has an appt. with the endocrin. dr but then after that Rick and I are meeting with the Pallative Care team to talk about "DNRs" vs "full codes". Ugh, Ugh.

As depressing as it sounds, it is a needed conversation. Never one you want to have but when you have children with life-threatening illnesses like both of mine, it is enevitable. When we first had Isaiah, we thought we would be down this road immediately. But Isaiah just got better and better with time. Sure he has scared us a few times but he has always bounced back. I am sure a time will come when he won't but for now, he is doing amazing and exceeded all of our expections. Such a joy with a million dollar smile.

With Avery, it is almost totally unexpected, until this last yr. He started off soo healthy and seemingly stronger. Once we moved, he really went downhill. As you have all seen, it has been one thing after another. The poor kid has not physically had a break. He tries to be happy but I think he is chronically in pain and never gets the chance to feel happy and good. A good day for Avery is him smiling a great deal of the day, no vomitting, now weird tone movements, a nap, and no temperature. Kinda sad, huh. This baby deserves so much more than that.

Anyway, tomorrow is about talking about terms like to ventilate or not, to take him off the vent. or not. So we don't have to make these decisions while we are in a crisis. It will be in his chart. Of course, we can always change our minds at any point but at least we have talked about them out loud and everyone is on the same page. KWIM? I am worried about Rick though. I am very realist about Avery's future and certainly, he could be like Isaiah and overcome this hump and exceed our expectations or one of these hospitalization, he may not come home. I am not sure if he is ready to accept this and maybe he is and just does not like to verbalize it. Can't imagine how this feels for him. He has 2 sons that will NEVER walk or talk or maybe live beyond their teenage yrs. This is why God has given him his own basketball team. I am so grateful for that. My gosh, I am sure this sounds sooo depressing and I don't mean it to be. Certainly, I am not depressed at all. This is my life. As I always say, I am not getting another one and this is what God had in mind for me. So I am blessed with the life I have and have to know the reality of it. In any case, wish us luck tomorrow.