Lighting it up

Tonight I sat on the front porch with Jason watching Ainsley hunt and catch lightning bugs. It brought back a lot of fun memories of summer evenings spent chasing lightning bugs around my parents back yard. In the early evening the back yard took on the look of Christmas, the trees literally sparkling with hundreds of lightning bugs. I always revelled at how beautiful it was to see, and disappointed to see how quickly it would pass.

Tonight I watched Ainsley daintily dance around the yard, chasing after every bug she saw. In her Cinderella nightgown and pink sparkle shoes, it was even more beautiful than the scene I remember as a kid. And again I was disappointed to see it pass so quickly, but this time for very different reasons.

Good things happen to those who wait.....

For weeks now, many if not most, of the postings on this site have been not so full of sunshine and happy thoughts. For those of you following along, thanks for hanging in there. It has been a long long journey. I've recognized over the last few weeks that Jackson has made great strides (literally!) and I wanted to be sure to share those happy thoughts with you as well.

He is walking. Really walking. He is still very wobbly, but he is walking nonetheless. I don't know when we turned the corner but he is definately spending more time walking than crawling. He is really enjoying time spent outside walking, pushing his little car, and swinging in his swing next to his big sister.

As I've said before dinnertime has become a bit of a struggle. Luckily we've discovered that part of the struggle occurs because he wants to feed himself. This is huge. While the amount of food he is getting isn't a great deal he takes his little spoon and does his best to feed himself. The end is always a mess but it is worth the hassle of the cleanup.

Ba. Jack is still just saying ba. No ma or da. Just ba. But his babbling has increased in frequency so we're hopeful that sometime soon he'll discover one of the other 21 consanants. He is also signing more and more. Picking up signs left and right. Eat, more, all done, and bath are some of the regulars, add in a high five and blowing kisses and you can almost have a nonverbal conversation with him.

So that's it in a very large nutshell. Good things are happening. Finally.

Feed ME!

Poor Jack. He wants to eat and drink so very badly. Dinnertime is becoming a bit of a drama. But thankfully we've discovered that he really wants to feed himself. So I put small amount of baby food in a bowl and he goes to town. Last night he fed himself the entire 4 1/2 ounces with little spillage. Now granted it wasn't the cleanest event but it kept him happy for the 30 minutes or so that made up dinner time.

So on to feeding.....well, maybe not so fast. I called the swallow specialist to get an appointment and her next available is Sept 12. Yeah. Right. So I explained to Liola the scheduling assistant the situation and she put us on the waiting list for the next cancellation. And while that is helpful, people are generally less prone to cancel an appointment that they've waiting 4+ months for. But we'll keep our fingers crossed.....

Cleared For Take Off....

More or less. So the visit to pulmonary went well. With not much more information than we previously had and after a string of questions and answers the docs put their heads together and came up with this: Let him eat cake! All right, maybe cake is a bit of a stretch but you get the basic idea. ('Let him eat mashed peas' just didn't have the same effect.)

So we're to schedule an appointment with the swallow specialist so she can come up with a game plan for this eating thing. Who knew you needed a game plan to eat? Well apparently if we go too fast he will aspirate, if we feed him the wrong things he will aspirate, if we let him drink thin liquids he will aspirate. So there is actually a bit of a science to the whole thing. Not to mention someone actually has to teach him to drink. Really. After 15 months of no liquids Jackson has no idea what to do with a straw (which is how they teach him to drink). So we;re off to the drawing board to comeup with a plan of attack.

With any luck he'll be off of tube feeding by the fall. Yipee!

Little Appointment Big Expectations

I know it is bad to go into something with lofty expectations, but in this instance I just can't help myself. Jackson has a Pulmonary appointment this afternoon which I expect to either go very well and they tell us he can start eating (!) or it will go very poorly in which case they say they want to do another bronchoscopy. Either way is big. Big good and big bad, but even big bad would be better than leaving with a prescription for another healthy dose of "Let's-wait-and-see".

Think happy thoughts and channel all your good karma our way.

WARNING: This is a Rant.

I warn those of you reading this particular posting. This is a rant. A short, brief rant which won't apply to 99.9% of the people I know. But there's always that .1% who have to go ahead and piss me off.

Yesterday was a bad day. A very bad day. On top of the daily grind that makes up so much of everyone's days including taking Jack back to Hopkins to give nine vials of blood for yet more testing, yesterday I had the pleasure of dealing with my co-workers. I should make it clear that most of my co-workers are perfectly amiable, understanding and empathetic people. Thankfully this includes my boss.

A few of my co-workers however, are not so understanding, and are apparently a bit envious of my situation. How is that possible? Why in the world would anyone be envious that I have a chronically ill child who requires a great deal of medical attention? That I am forced to work from home many evenings and weekends because I never know when I am going to need the extra time? Or could it be that I have now aquired quite the vocabulary of medical lingo? Maybe my stunning good looks and charming wit? Who knows when there is so much to choose from?

We all know people like this, and most of us probably have to deal with them on a daily basis. I can cope most days. But then there are days, when by virtue of the rumor mill or a particularly conciensious co-worker, I hear that things are said about me, my work, my children, my "situaiton" to other people in and out of my department. Statements which may or may not be true, but are absolutely none of anyone else's business. I have been told that statements like "It's her fault Jackson has all those health issues because ....." have been made to multiple people. No really. Someone has been so bold as to say that. Again most days I can cope but yesterday it really set me off. Not that I can do much about it. I could choose to stoop to that level and engage in some sort of tirade but I know that won't help nor will it change the behavior in question. So I choose to ignore the source, post my rant and move on.


So there it is. Rant.

Status Quo

There was a time, not so long ago, that maintaining a certain level of healthiness would have made me happy. But now, as we emerge from the flu and virus season victorious, I ask, what's next? As in what can we do next? When can he start eating? When can he stop taking so many meds? What testing should we look into? What's the next step with his speech and language therapy? Obviously there are a lot of questions...

So I try. I try to talk to the Neurologist about testing. I try to get Pulmonary's recommendation on advancing his feeds. I try to get GI's input regarding food allergies. I try to get his Swallow Specialist to weigh in regarding his aspiration or lack there of. And I try to get them all to talk to each other, since at most visits it ends with a "Let's see what _______ (fill in any specialist) has to say."

This my friends is not an easy task. First, and foremost, just getting in touch with one doctor is darn near impossible. Multiple phone calls and messages are required. Then when you do actually speak to one, the conversation is usually rushed and ends with the above mentioned phrase. Oy vey! So getting multiple physicians to communicate with each other is like requesting an audience with the Pope. In fact I think my odds are actually better with the Pope.

And some may ask, why so urgent? Well, since we are clear of the flu and virus season, NOW is the time to try advancing Jackson's feedings, move to more solid foods, and away from tube feeding. The clock is ticking. We have exactly 4 1/2 months to accomplish this before the next flu and virus season and that's if we start TODAY. So let's take two weeks out of the equation which leaves us with 4 months. That's not much time since it seems there is yet more testing to performed before anyone recommends solid foods.

So while status quo was an acceptable and even welcomed level during the nasty winter months, it now quite frankly has me a bit wound up in sixes and sevens.