Sunday, February 28, 2010

A Little Catching Up . . . =0)

Our last appointment with the Rothman Center left more to be desired. =0) Basically, only 3 of the 9 blood tests were back - of course, the 3 that were back weren't the big tests. =0) The doctor asked a few questions, got Isaiah's height and weight, and we said goodbye until next time. So, a fifteen minute appointment after a 3-hour drive . . . yeah, not quite what we were hoping for.

I guess I expected more out of the appointment - you know, like the informational appointments we seem to have with the allergy clinic visits. It was almost as if they gave Isaiah the diagnosis of ASD and left it at that. No looking around for anything else, not trying to see if the symptoms we're seeing are masto-related, nothing. A little frustrating, but I guess we shouldn't have expected anything more - they were just doing what they normally do, there's not much else they can do.

Anyway, Isaiah started the prescribed med (rispridol) on Thursday. I can't begin to tell you how excited I am that Isaiah is FINALLY sleeping through the night!!!! =0) In over 4 years, Isaiah hasn't slept through the night (since he was about 4 months old when he began waking up every 20 minutes screaming)!!! So far, the sleep has continued. He doesn't wake up at all and he doesn't seem to twitch or cringe in his sleep! My body is still trying to adjust, as I'm sure his is too. (by the way, I took the picture on the left outside of the new portion of All Children's Hospital - they did a wonderful job decorating the place!)

Back to the appointment (I took the picture to the left outside of the new portion of All Children's Hospital) . . . since our appointment was scheduled later in the afternoon on Tuesday, we decided to take a detour to the Pier in St. Pete. It was beautiful! There was so much to take in and do. There several shops, but the best was the aquarium on the second floor! Isaiah loved it! He had so much fun bouncing around looking at all the fish. =0) Of course, it was a small aquarium, but Isaiah didn't seem to mind too much - he didn't want to leave! I think we were there for about 3 hours!!! =0)

On our way home on Wednesday, we decided to stop at Dinosaur Land . . . or World . . . whatever it was! =0) Even though it was raining, with a few bouts of lightening and rumbles of thunder, Isaiah had a blast! He loved the dinosaurs and even got a chance to dig for fossils. So, I guess our trip to St. Pete wasn't too much of a waste of time, right? =0)

On to today . . . it's Rare Disease Day! As you know, both Isaiah and my dad have rare diseases (Isaiah - anaphylaxis, mastocytosis, ASD; my dad - waldenstrom's macroglobulinemia). Well, to "celebrate" (as much as you could possibly celebrate . . . it's more of a celebration of life, really) we donned our spots for our church family to see. =0) Isaiah even helped me decorate a shirt for the occasion. =0)

God has really blessed us with life, so why not celebrate that? Seriously, there are times where Isaiah or my dad could have died, but God blessed us with more time with them. I know that Isaiah has taught me more about living than I could have imagined. Smile, even when it hurts . . . it makes you feel better. "Jesus makes everything better" and "He'll take care of it." Isaiah has even told me to "just be happy, Mommy, and then you won't be sad anymore." =0) Not only that, he has taught me to appreciate every moment, though I am still learning to seize every opportunity. The biggest lesson Isaiah has taught me is reliance on God. There have been times, on this journey with Isaiah, where I am physically and emotionally exhausted. Not that I want to give up (I am a wee bit stubborn) =0), but I just want to scream . . . and I have felt like my brain was going to snap. I have been pushed to my limits, but God has always been there to give me the extra energy, focus, and encouragement. Of course, God has also blessed us with Isaiah's quirky sense of humor. =0)

Well that's all for now. I'll keep ya posted. =0)

1 comment:

Tasha said...

Ok, Didn't know where to comment, so I just picked a I just wanted to say you have a beautiful blog. I too have a son with masto and autism along with several other diagnosis. Reading some of your blog seems our kiddos have alot in common. Its great to meet other parents who know what you're dealing with.