Jack is having a hard week. He is sick again which is common for him. It is turning respiratory as it normally does with him. He hasn't slept to well and is very fatigued. When fatigued he can be a accident waiting to happen. His choking has increased due to this fatigue. He has had pretty bad tremors today also.
We are still waiting for a referral for a swallow study. We seem to be waiting on doctors for a lot of things. We should be hearing anytime regarding when he goes for the muscle biopsy. They estimated sometime in March. We also go next Friday to see his specialist in Syracuse. I need to discuss many things with him since I haven't seen him since the Cleveland trip and seeing the specialist for the mitochondrial disease. I also need him to give me a report stating about Jacks diagnosis. I need it to fight for program regarding Jacks, Speech, OT, and PT, services with the school district. Jack has to change over to them at three .
Please pray we get program for Jack. Also pray we hear soon about these referrals. I also appealed the insurance since they will not pay for the blood test that the specialist wants. So pray I hear something soon and it is good.
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