No apnea!

We got some good news this afternoon! Lila does NOT have apnea like the doctors believed. We have had problems with her holding her breath until she about passes out. She turns blue and this always happens when she gets extremely angry. At first I though these were seizures, so we had an EEG and she actually did one of these "episodes" during it. But it didn't show up on the EEG as a seizure. We did a sleep study and that came back fine, showing that she had normal breathing patterns during sleep.It turns out that her chiari malformation is to blame for this. Apparently in kids with chiari they sometimes don't have the sensation that they need to take a breath when they hold their breath. This makes them experts at holding their breath but can scare the pants off their parents! Which is exactly what is happening to us! The pulmonary doctor said that Lila should be fine and that it doesn't look like we need to do the decompression surgery anytime soon because her breathing appears to be normal. He explained that in kids and adults without chiari, when we hold our breath CO2 builds up and causes us to have an urge to take a breath. In kids with chiari they sometimes don't get that sensation. Anyway I thought this was interesting and wanted to share our good news! The neurosurgeon agrees that we don't need to have the decompression surgery yet.We are still in the hospital and they are stilling trying to figure out her eating problem but it looks like we might be going home soon with a NG tube. Thanks for your prayers and please keep em' coming!