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.

Tickets please.

Welcome to the eighth wonder of the world we like to refer to as the roller coaster of life. Everyone has taken a ride at one point or another, some voluntarily others not so much. Personally, I think one more spin around the old beast is going to make me yak.

Last week we had the privilege of adding yet another specialist to the list of providers currently seen by Jackson. Dr. Razzledazzle (sometimes I just can't help myslef) is a Peds GI specialist who we were referred to by Dr. R. What I expected to be a very nonproductive visit, which I predicted would include another version of the hurry-up-and-wait game, was quite the opposite. Dr. Razzledazzle was well prepared, took his time with the appointment, and it appeared he had actually read Jackson's chart prior to our meeting. (What a concept!) I was very pleased. (As the roller coaster clank clank clanks to the top and the anticipation of the drop puts a lump in your throat....)

I was even more pleased when he said to me, " I suspect Jackson has Eosinophilic Gastroenteritis". Now long story short, it basically means that he suspects that Jackson has a milk allergy which resulted in an overabundance of eosinophilia (a type of white blood cell) in the wrong places. It could accont for a great deal of his GI issues. So off for allergy testing we went. Simple enough. And simple enough to resolve if this was indeed the case. (Arms up as the car swings down and around the track...)

However, dear reader, as you may already suspect, it just couldn't be that simple. Jackson's allergy testing results came back this morning with a glaring NEGATIVE result to everything he was tested for. (And one more time through the dark tunnel which takes you upside down and sideways unexpectedly leaving you with a mild case of whiplash....)

Back to the drawing board. Could someone please tell me why we willingly wait in line for these things when everyday life often brings the very same sensations?

Positive news from negative results!

This morning I received an email from Dr. R, Jackson's Genetic Neurologist, indicating all the testing sent March 15 came back negative. This is great news. For if the testing had produced positive result it would have had a highly negative impact. Positive news from negative results!

I am thrilled with the negative results. I'd like to say that the diagnosis (or lack thereof) matters very little to me, but everyone would know I'd be lying. I'm not sure any parent could ever say that. So I will continue to scour the internet, the library and many other resources for information that may help us help Jackson. I will say though, that while I would like very much to have a diagnosis, I understand it matters very little in the grand scheme of things.

Three steps forward, two steps back...

Or is it two steps forward and three steps back? Well, whatever the case is dear reader, I'm certain you get the point.

And my point is this; there have been some positive and very encouraging things happening of late with regards to Jackson. And while I might not necessarily call it a set back, yesterday we encountered a new problem. Hence the step (or two or three) backward.

When he woke yesterday morning, Jackson's right eye wouldn't open completely, his eye lid drooping significantly. After his nap later in the day, it seemed fine. So it seems like nothing to be alarmed about, just one more thing to keep an eye on (no pun intended). Another possible clue to the puzzle that is Jackson.

And he continues to gesture and sign, albeit the response is usually delayed. But we're happy he's waving, attempting to blow kisses, clapping and signing "more" and "eat" somewhat regularly. Every little bit counts!

Affirmation!

While I was dressing Jackson this morning, Ainsley was in the room peppering me with questions about her upcoming birthday. (She's turning 5 on Sunday! I can hardly believe it!) Specifically, she was asking about the Irish Dancing Barbie we recently bought as a gift for one of her friends. She wanted to know if the store had more of them. To my surprise and delight, Jackson, upon hearing the word "more", put his hands together and signed "more". I was ecstatic!

Who ever thought that word recognition would be so exciting? Nothing like a little affirmation to keep you motivated!

Happy Bunny Day!

Knock on wood.

So everyone take a moment and find something made of, looks like, smells like, or even same color as wood and knock on it. Really, give it a good whack.

Now that that's taken care of, I can now safely profess the following: Jackson has no doctor appointments next week. Not one. No injections, no therapy sessions, no testing, no nothing. Nada. Zip. Zilch.

Wow. I am revelling in the amazement that is my somewhat empty calendar.