If it were not for my online communities I think I would be a mess on the floor.
I don't have the full idea from the sleep specialist yet but it seems from what the pediatricians nurse could tell me, my daughter (23 months) has central sleep apnea. I was told that her 02 went down to 87 at its lowest, which Im told isn't to terribly bad. But at the same time my baby stops breathing in her sleep due to the fact her brain isn't telling her lungs to breathe, that terrifies me so much. They have no recommendations from the sleep dr so were literally sitting in limbo right now, about to go into the 3rd weekend since the test was done. Its taking forever.
Plus she was diagnosed with the 20p12.3 duplication that we were pretty much told is so rare they cant even pinpoint her medical issues to it because very little is reported and known. Its frustrating to have another piece of the puzzle but yet no real answer.
Then she had her first dentist apt today. She has very crooked teeth and chances are her adult teeth will come in just as bad, because of the duplication she may even have extra or missing teeth or no adult teeth at all. We just don't know until she is older. On top of that her sensory problems are so bad she may never be able to be treated with braces or anything because she may not be able to handle how they feel on her mouth.
I just don't know what to think anymore. I wanted answers and I got lots of them. None of them are what I envisioned for my baby girl. I don't know how to tell her 4 year old sister that her baby sister is not like typical kids. I don't know how Im supposed to accept the life that is being handed to me. Im really thinking of looking into a night nurse but what would be the point since she sleeps with me anyway? Im guessing we will have to put a stop to that when she gets put on something for the apnea.
I just feel like I need a huge hug right now and Im trying to be strong but I can feel my heart wanting to break.
on Oct. 10, 2013 at 10:58 PM