Teeth are so overrated...

I'm short on time this morning so I'm going to offer up the condensed version of what we learned yesterday at Ava's Pulmonary check-up.

- There is a part of her lungs that has been negatively affected by her spinal problems, but the biggest issue is still her upper respiratory area (whew!). It's not the best news but to me, but it sounds a lot less scary than having full on lung trouble.

- As we already knew, the muscles in her throat area are non-working. Because of this, her body is trying to ease the swallowing process by making her salivate more.  The problem with that is that she aspirates (because there are no working muscles), so she can't have anything by mouth anyway or it'd go directly into her lungs.  Now that her body is creating more saliva, it's all falling into her lungs and that's painful (imagine times when you swallowed water down the wrong "pipe", only it's all the time for Ava). Bless her heart! It doesn't help that the air way is so irritated that it's swollen almost shut, and she has very large polyps in both nostrils, so she is not able to breathe through her nose at all at this time.

- The three new medications added to her twice daily cocktail (totaling EIGHT now) are "extras" to help try to naturally (funny to call that natural!) open the air ways a little more to making breathing a little easier, and one is to try and thicken her saliva in hopes that she will have time to spit it out before it slides into her lungs.  We are hoping and praying this works! If it does work, not only will that mean we can put the trach off a little longer (remember, it's important for all of us to have two functioning airways), but also it could cut back on her time spent using a nebulizer each day.  Using it every four hours right now is stressful for the entire family, but especially her. She's a five-year-old princess and has other important things to do!

Ava's daily breakfast and dinner menu (at least for lunch and snack it's Pediasure, only!)

Ava will go back to see Pulmonary on November 10th. I'm asking that each of you pray that this month of intense treatment gets everything healed the best it can be! However, if it doesn't work, I think we're all okay with getting the trach placed again.  As much of a pain as it is, it is kind of comforting to know that she has the extra "help" getting a breath of air.

Now that we've covered the important stuff, I'd like to share with you some of our Aicardi DRAMA from yesterday! As you already know, Ava has multiple seizures daily. It's second nature for her to have them, and for us to watch them...yet...yesterday she had one for the books!  She was sitting in her favorite little blue chair about two feet away from the coffee table and enjoying her morning cartoons. She kept looking at me "funny" but didn't make a sound so I didn't think much of it.  Sometimes the littlest things can confuse her and she shows it on her face.  I walked outside to load up all of her bags for our road trip to the doctor and walked back into the living room just in time to see her flying, yes FLYING, out of her chair into the coffee table, face first.  It was the worst seizure I've seen in a very, very long time.  Her bottom row of teeth slammed into the table and instantly knocked one out.  The one next two it was twisted so badly I knew it would be falling out soon.  Thank God she does not feel pain during seizures (we think).  She never even cried afterwards, but she was totally embarrassed about her teeth.  I could tell.  The thing is – it’s absolutely adorable! And what a story to tell! That kid goes through some stuff, huh?

While she was undergoing some breathing tests at the hospital later that day, a second tooth feel out (she swallowed it, go figure!) and the doctor noticed two more loose ones. On our way home, I saw her furiously tonguing at them so I pulled over and pop, out came the third! The fourth loose tooth, thank goodness, seems to still be tight enough that it won’t come out anytime soon. Not that it matters, she doesn’t eat anyway. =)

Seriously - can it get any cuter? Even with no bottom teeth? Nope!

There was a happy ending to the crazy adventure of yesterday, a visit from the Tooth Fairy.  We do it old school…um…I mean…Mr. Fairy does, so in our house you get a quarter for each tooth.  Ava earned a 75 cent profit yesterday, but we didn’t know what to do since one tooth had been swallowed (by the way…chest x-ray showed it went into the stomach, not the lungs – that’s a two part miracle!).  Leave it to Connor to come up with a way to help her. He decided to cut the cotton tip off of a q-tip and place it under her pillow with the other two teeth.  This worked, too, because Mr. Fairy had paid up by the time she woke up this morning! I just hope he doesn’t try substituting things for teeth under his own pillow.  

Bet you can't tell which one's a fake! ;)

All in all, it was a bad day turned good, but that’s kind of the story of our life isn’t it? Thank you Jesus for pulling us through, yet again!