Update 5/14

I didn't realize how long it has been since I posted here. Sorry for that. It has been crazy. Connor had been sick with a real bad cold for over a week that required trips to the dr with a very cranky child. There isn't a whole lot new. We still don't have the results of the blood tests for the mitochondrial disease. I called the dr today because it has been over 5 weeks now. They have not called me back. Everything seems to be at a stand still.

We did have the evaluation with the early intervention team. Connor qualifies. I knew he was behind developmentally. You would have to be blind to not see that but I didn't realize how far behind. Once they gave me the numbers I cried. Here is how he tested (remember he is 19 months old when you see these numbers) :

Cognitive ( learning, play skills, problem solving) 6 - 13 months
Gross Motor (crawling, walking, moving) 12 months
Fine Motor (eye/hand coordination) 10 months
Communication (talking & understanding language) 3m responsive, 11m expressive
Social/Emotional (interactions with others & toys) 5-8 months
Self Help/ Adaptive (feeding, dressing, toileting) 8 months

As you can see he has had significant regression. We are scheduled for a eval meeting for 5/23 where we will set up a plan and start the therapy. The sooner the better as far as I am concerned. I feel it should have been started months ago. They also want him to wear a helmet for protection whenever he is on the floor walking. We are scheduled for a fitting on 5/20 for that. I have gotten some attitudes about that already from some people. How could I do that to my son? It is wrong of me to do this. I feel that whatever will keep him safe is the right thing to do so we are going ahead with it. He gets hurt enough now. We don't need him damaging his head and making things 100 times worse. Today he fell in his bed and cut his mouth open. He falls all the time and we are fighting to keep him safe till they figure things out.

Hopefully we will have some news on the blood tests soon. I plan on harassing them until they call me back. They will be getting phone calls from me on a daily basis until they get so sick of me that they will finally return my calls. I will post again as soon as something new develops.