On Monday, August 19th, we took Caleb to Ann Arbor for a developmental assessment. Caleb participated in several research studies and one of them had a follow up portion to see how heart kids progress developmentally. He played and answered questions for at least an hour and a half with the doctor performing the assessment. He ranked totally normal on the tests she gave him. His overall assessment was "Low Normal". The "Low" part is because he still isn't potty trained, he refuses to learn his colors and I struggled with filling out the forms for a three year old. How would you answer "Does your child do strange things?" Strange for humans or strange for three year old boys? Do you consider drinking toilet water or picking your nose and eating it strange? I am not worried about his development, so I am guessing he is just "Normal". We will definitely take that. He is talking in complete sentences, he doesn't like to share and he is finally starting to show some interest in potty training. I figure that is normal enough for us!
On Tuesday, August 20th, Caleb had a pediatric cardiology visit in Grand Rapids. His EKG looked good for him, his blood pressure was a little high but acceptable, and his oxygen saturation was 96%. I have only seen his oxygen levels that high twice in his life - before he had his first surgery and while he was still intubated after his most recent surgery. He weighs 28.8 pounds and is 35 inches tall (I like saying 2'-11"). The cardiologist was very happy with how Caleb is doing. He asked if we had any concerns relating to Caleb's heart or health and we do not. Compare this to what I posted in the blog three years ago on August 20th:
Caleb is really struggling today (and so am I). He is going in shortly for a heart catherization to see if they can find what is causing his low oxygen levels. He was up and down throughout the night and they are unable to wean him off any of the drugs, the nitric oxide or reduce the amount of ventilation. My understanding is that if they were still doing everything 100%, he would be stable. The problem is that if we have to keep everything at 100% to keep him stable, we can't move forward and we have no where to turn if things get worse.
The gut feeling I am getting from the cardiologists is that we will end up going back to surgery and rerouting the shunt to pick up more blood flow (or more consistent blood flow) to his lungs. They are planning on making a decision early this afternoon.
Please keep praying for him.
What a difference three years make! Now, the only visible evidence of his heart defect are his scars. He takes a baby aspirin a day and has no restrictions. We are so unbelievably fortunate that he is doing so well. We are so thankful for all of the prayers over the past three years and all of the amazing support we have received. Thank you!
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