My dad and Luanne are friends with a neonatologist at University of Detroit. Dr. Duenas graciously offered to have her good friends at the University (a peds neuro and radiologist) review all Caedyn's records and scans to make sure the treatment here is the best she can be getting and also that her diagnosis is correct. The best part: it is all free and there is no travel involved on our part. So, after gathering all her records, CD of scans, jotting down my prenatal history, etc. I sent the envelope in the mail. Dr. Duenas called last week with the news. I was a little nervous and excited at the same time. She said that the three of them sat down and reviewed all her records and determined she DOES NOT have periventricular leukomalacia as Dr. Umfleet seems to think. This is excellent news! There was also some question of Caedyn having a syndrome called Miller-Dieker. She is negative for that as well. HALLELUJAH! Dr. Duenas said that she is developing just fine and reassured me that even her oldest son didn't walk till 16 months of age. She said she does need to be weaned off the Valium, which we already knew, and states it is not really doing anything to help prevent her seizures, the other meds are. This still doesn't give me the reassurance I am hoping for but, I am praying that God will ease my fears very soon. The Dr. did say however, that statistics show that children that develop epilepsy between 3-6 months of age have a greater risk for infantile spasm, uncontrolled seizure and battle with the disease lifelong. Despite this information, I am certain that with the power of prayer, Caedyn will be healed of her epilepsy. I have seen God's hand in many circumstances and know that he is the one true Healer!
So, now we wait. We either start the wean June 2 or before, if I can muster the courage and faith. I am praying so hard that God will ease my anxiety and allow Caedyn to be well controlled off the Valium. We covet your prayers as well!
That is amazing news for you guys. I know the times will be hard to come but you will take each challenge at a time. Prayers continue to be with you through this whole process!!!
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