Always Never...

This blog is supposed to be dedicated to my family's adventure in Aicardi Land, but this is too cute not to share.

Last night the five of us went to the South Mississippi Fair, and as all of us Southerners know, you don't get to leave the fair without getting a free copy of the New Testament. Although Connor has several of his own Bibles, he is obsessed with collecting the tinier versions from the fair each year. He grabbed one for himself, and then one for Ava and we made our way to the van.  Before we could even get the children loaded, Connor positioned himself in front of Ava's wheel chair, Bible in hand and upside down, and began to "read" to her what he believed to be the commandments.  Somehow, I think God will still be pleased (and hopefully preacher man Connor got the message through to his impressionable little sister).

The commandments as he delivered them:

1) Love your enemies.

2) Always never be mean to your brother.

3) Always never kick people.

4) Always never say a bad word.

5) Always use a potty, not your pants.

6) Always never walk in the road when cars are coming.

7) Always never cough on someone.

8) Always keep an eye on the road.

9) Always never blow a horn at the movies.

10) Always obey your parents.

Kids are the best, aren't they? :)

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!

How To Find Sunshine During a Storm

I haven’t posted about Ava in quite a while, but she’s been on my mind quite a lot lately.  For the last two months, our family has been hiding a struggle that Ava has been having for several reasons: (1) Point blank…it sucks to scare people and (2) I’m not above admitting that I don’t like to talk about every scary thing in hopes that it goes away. This though doesn’t seem to be going away.

In early August, Ava developed an almost unnoticeable cough that has (very) slowly gotten worse. At school, her teacher, nurse and class helpers noticed she wasn’t able “catch a breath” at times, and her lungs were chronically filled with fluid. She was beginning to sleep a lot and when awake, either withered and coughed in pain or gagged herself into spitting up every bit of food she’d had tube fed to her.  The muscles in her throat area are so weak that they do not move, meaning she aspirates entirely, and in the event she somehow gets “junk” up, she immediately swallows it back into her lungs. We do have a nebulizer and a suction machine, but they can’t solve the problem totally.  With the nebulizer, she inhales an antibiotic to fight infections in the lung (that she can never seem to get rid of!) and also a steroid that helps expands her shrunken airway and lungs. The suction machine, if you’re not familiar, is a battery powered machine that…well...sucks gunk out of the upper airway or in more extreme cases (like Ava’s) directly from the lungs. We take a tiny plastic tube and stick in through her nose or mouth into the top part of her lungs and get out the gross stuff, the same way anyone else would cough it out or blow their nose.  I hate doing that to her. I hate that she can’t cough it up naturally although that instinct is still there. Can you imagine how frustrating that must be for her? I hate risking infection every time the tube is inserted.  It’s not always preferred by doctors, either.  Suctioning can be addictive, as much as we hate to do it, and the more we do it to make Ava comfortable short-term, the weaker we make her lungs. Lose-lose!

We made an appointment with Ava’s ENT and within minutes he was feeding me a dose of reality.  Ava was fortunate to have been a trach baby once and later had it removed (at the belief that her lungs were finally growing rapidly enough), but there would definitely be another trach in her future.  Along with the ever-present lung and upper respiratory structural problems, it didn’t help that Ava’s spine (and the emergency surgery it caused this summer when a rod exposed itself through the skin) has been giving her even more trouble with lung growth and function. I hurt so much for her.  It’s always amazed me though, how even in the delivery of the darkest news, just the presence of Ava makes everyone so comfortable. Yes, we were getting very bad news, and being told to prepare for new things, but Ava sat in her chair and stared at us so peacefully and at ease that we couldn’t help but smile back for her.  She’s amazing like that.  She can make me forget to be afraid even in the very moment.

When Ava and I got home from Jackson that night, Dylan asked me if Ava’s lungs were okay.  I told him no, and that we would work it out.  He reminded me that she is “kind of tough” so I shouldn’t worry. He’s right. I lost a lot of sleep that night thinking about how short and precious her life is.  I have to say, I honestly don’t dwell on the fact that Ava does not have a normal life expectancy.  Sometimes it catches me off guard to think about it and I have a good cry about it, then I straighten up and carry on with our business.  This time was a little different, though. Several times during the following week I caught myself saying things like “But this is what we expected” and “We are so fortunate to have even had this much time with her!” I can’t ever remember a time where I had to self-assure myself so much…never have I had to remind myself over and over that I could prepare for this, too, and like Dylan said, I shouldn’t worry, because even if God’s plan for her life is totally different from my plan, we can all rest easy knowing His is the best one.

I’ve spent some time in the last two weeks connecting with other parents of special needs children whose children have already left us.  I didn’t tell anyone I was doing it, because I didn’t want to be viewed as a pessimist, or even worry anyone anymore about Ava (my husband especially!).  I asked for advice on how to prepare for The Day, and I asked how they coped afterwards. I asked, because I especially need to know now, how to stay strong when things are really difficult, and how to remain functional for the rest of your children.  Their answers were, short, clear, and completely comforting.  I put together this little list of things that I learned from them and tucked my own copy on the bottom of my nightstand drawer.

How to prepare for the worst when the worst is the best you’ve got:

1)      Accept it. Their fate is your fate, and just like with anyone who has had a loved one leave them, God has already developed a plan for your life “after” and set the wheels in motion even if it takes some time for you to realize what that plan is.

2)      Hurt. Be okay with hurting. Expect to hurt for a while. Feel no shame when the hurt goes away.  Feel no discouragement when the hurt unexpectedly returns.  There is a cycle here, and that’s normal.

3)      Talk about it. No matter how unique the situation, there is always someone who understands it.

4)      Remember your angel. One day my angel will leave me – I know this. Remember the unconditional love you shared. Pray for the ones who are still here on earth.

5)      Start over. Sit down – write a new life list. Live it. Give thanks to Him for being given one of the most incredible responsibilities, ever.

Of course, I am still unexplainably sad about the life Ava is living, even though I know she is one of the most precious and meaningful things in this world.  She’s still my baby, and she’s still sick.  But….I’m okay with that. Like I said to all those people who wanted to talk to me about Ava’s newest “lung” news, we knew this was coming and we’re totally ready to take it on. 

I hope you aren’t sad after reading this post.  I hope you are able to see things the way I’m learning to, and to be comforted by that. Thank you for letting me share this part of our lives with you, and thank you for praying for our sweet little Avabug.  On Thursday, we meet with a new pulmonologist.  Please pray that he will have answers for us, and that no matter what he says, our little sunshine keeps smiling. =)