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Finally, a Diagnosis!

Phoenix had her sleep study two weeks ago. Justin took her since she tends to do better with settling down at night for him than she does for me. We had our follow up with neuro last week, and saw an ENT this week. It was a LOT to process and sit with.

She has moderate to severe obstructive sleep apnea, hypoxemic sleep apnea, and an arousal disorder. Normal would be less than 5 apnea instances in an hour. Phoenix had more than 18 hypopneas and hour, 15 arousal episodes an hour, and 8 central apnea’s total.

She will have surgery on July 7th to remove her tonsils and adenoids, and hopefully also improve her Tracheomalacia. Her tonsils are HUGE, grade 5, which means they occupy more than 80% of the oropharyngeal width.

Because of her apnea, her brain, more than once, was so starved of oxygen that it CAUSED SEIZURES while she slept. The resulting sleep deprivation caused by the apnea is even affecting her growth because the main growth hormone is produced during sleep. (For ref- she and her 7mo old sister wear the same size diapers and can share a lot of their clothing. Phoenix is TWO)

My mama heart is so relieved. I KNEW something was wrong and didn’t rest until we got answers for our baby. This will greatly improve her quality of life. Pushing to see a second neuro that is a sleep specialist, got us that sleep study and it made all the difference in getting a diagnosis. Listen to your instincts mamas, advocate for your babies, it can make all the difference!

And, as if I didn’t already think Sloan was watching over all of this, we will have her pre-op tests and receive her surgery time on July 3rd.

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