I'm scared to death to put this in writing but my Little Squishy continues to be seizure free!!!! ( Hope I didn't jinx myself!) It is such a wonderful thing! Although he continues to be very irritable and cries for hours on end and is now on two more meds for thrush, he continues to defy the odds and continues to be seizure free!!! It really is amazing, the difference in the little guy; he's awake and seems to be more alert. I truly believe all the love and support and prayers have a hand in this so please everyone continue with the prayers! I just can't wait to go in and throw this great news in my Dr.'s face!!! Lol, I know that's horrible of me....
So on another note, we got the letter denying our request to do the genetic testing. They don't feel it's medically necessary; I disagree, and would love to be able to rule out that my girls may carry a gene that causes this syndrome. So it is a little bit upsetting. Also, we're still waiting to hear whether they will approve us to see a different neurologist. I will continue to update on my little man's progress....
So on another note, we got the letter denying our request to do the genetic testing. They don't feel it's medically necessary; I disagree, and would love to be able to rule out that my girls may carry a gene that causes this syndrome. So it is a little bit upsetting. Also, we're still waiting to hear whether they will approve us to see a different neurologist. I will continue to update on my little man's progress....
Shandi, what great news! Praise God prayers are being answered! I also wanted to mention, we just went through thrush with our 4 month old. The meds they prescribed to get rid of it didn't touch it. Then the Dr suggested an OTC med called Gentian Violet. You swab the mouth with a qtip. It is amazing how fast it worked. The down side is her mouth was purple but it was worth it and faded away fast. I have even used it when I cut my gums really bad. Another thing, make sure bottle nipples and pacifiers are boiled daily. And, when you give him medicine use a different dropper or whatever you use each application. It's highly contagious and they will keep getting it back.
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