The appointment...

Well, our appointment went fine yesterday. It was VERY long. Abby had an ECHO done on her heart upon arrival, then both kids under went an EKG. After this, they had the cardiologist come in. He stated that both kids hearts appear to be VERY healthy and normal! At this point, abby's heart is fine as far as the rapid heart rate goes. They are not overly concerned because her heart rate is some what typical of a three year old at this point and they feel that maybe she is sensitive to feeling it beat. I would normally be doubtful, but talking with another doctor earlier last week, she felt the same and wondered if card. wouldn't agree. They did! So, I'm relaxed a bit more about that! Then the genetics doc came in. We are established with another genetics doc there... so we won't be seeing this lady again. However, she talked with Dr. Leslie (the genetics we are seeing) and they had a game plan to get started. They are completely starting at baseline. They ran some blood work yesterday! Poor Joey I think he lost half his blood! they are doing this on him because he is the more symptomatic and severe. They are doing some metabolic work up, but also looking at chromisomes. This will tell us if there is some sort of genetic defect. She really expects it to be negative, but wanted to pursue it just in case because it had never been done. She talked with us about Mitochondrial disease and told us it is very difficult to pin point and VERY time consuming. She was a bit baffled why when Joey was diagnosed, we went in on the Oct. 31 and by Nov. 2nd, they told us that he had mito. She said there is not enough underlying proof yet to say for sure. YES the symptoms are there... but not all and not enough to comfortably diagnose. So, many of you have been asking what is going on... I know we have been VERY quiet about things. We are struggling emotionally with all of this. Cincinnati is strongly leaning towards saying the kids have been WRONGLY diagnosed. We don't know what this means yet. That is some of why we are apprehensive to be sharing. Some of things they are thinking would be much less frightening than mito, but AGAIN they can't say it isn't mito yet. This is very hard on us as parents. Any parent facing mito would give their life to hear "oh, we're sorry but your kid doesn't have mito." However, they are not saying that so we are in that breath holding balance now of waiting to find out. We want more than anything to get our hopes up that we aren't facing something so life threatening, but we are scared to get our hopes up because if it TRULY IS mito, we are going to be so heart broken in the end. So, this is why we have continued to ask for prayers more than ever. It feels like we are waiting for that mallet to slam down on the desk with our verdict of life threatening or not... Ug! Anyways, we are trusting God and we know HE holds the future no matter the verdict. A diganosis doesn't change his plan for my kids because he CREATED THEM from their inmost being KNOWING full well what they would face! As a mommy though, emotionally it is hard to stay focused on that truth! I just want so badly to take this burden from their little shoulders! So, thank you for praying with and for us! We appreciate it! We'll update as we go to see what happens!